Question:

Perhaps I am lucky but I have been taking Asacol for 3 years now(12 per day right now) and I actually think it is decreasing my headaches(I have had bad ones, for my whole life), but at the same time I have significantly increased my cardio workout, and I really think that is hte cause of my decrease in headaches. Also, while ‘growing up on Tylonol’ and not being able to cure my headaches I have discovered Excederin which is AMAZING, has cured every headache I’ve gotten… I’m sure everyone’s experience is different, sorry I Don’t know anything about Colazal..good luck Joel

– Hide quoted text — Show quoted text – Jay – While individual results from meds vary so widely, I will share that asacol did not help me that much, and did give me headaches.  Also caused major, major hair loss.  I have had much better success with Colazal.  It may take a while to find the right medication "cocktail" for your friend, so tell her not to get too discouraged HTH Christine CD i get really bad headaches from Asacol. It sucks! If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

Jay – While individual results from meds vary so widely, I will share that asacol did not help me that much, and did give me headaches.  Also caused major, major hair loss.  I have had much better success with Colazal.  It may take a while to find the right medication "cocktail" for your friend, so tell her not to get too discouraged HTH Christine CD

– Hide quoted text — Show quoted text – i get really bad headaches from Asacol. It sucks! If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

i get really bad headaches from Asacol. It sucks!

– Hide quoted text — Show quoted text – If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

Mike, thank you for sharing your experience.  I appreciate it very much.  I am very sorry for your ill fortune with all of this.  That so-called "chip on your shoulder" is certainly well-earned.  

I’m not against people taking Asacol if it works for them.  I do feel that the nasty side effects are often dismissed by doctors, and it seems form studying this group that Asacol seems to have more significant side effects than the other 5-ASA drugs. Would this be true, for example, of Colazal?  One doctor has suggested it, and I am curious as to whether you would view Colazal as having less side effects than Asacol, BUT ALSO being at least as effective against the IBD. Thanks so much, Mike…and anyone else who might care to offer thoughts on this. Jay

Response:

THanks so much, Annie.  We found this to be very important information.  We appreciate you taking the time to respond. Jay

– Hide quoted text — Show quoted text – If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay jay OH YES.wicked headaches..on 12 tabs of it especially..and at the start of taking it several years ago..i am now on 9 tabs and rarely have a problem..its a known side effect..i used tylenol and they were fine..i knew it was the asacol cos i dont get headaches as a rule..ever…and it was the only new thing i had..u might ask if u could try 9 a day..i found a lot of difference between 9 and 12..hair loss with 12…the headaches, some nausea, indigestion, heartburn, some diarrhea etc..all with 12..not with 9..and it didnt make any difference in the good it did to cut down to 9..do ask…it doesnt mean u are intolerant to it ..necessarily ..it might mean u should be on less of it… good luck..annie

Response:

Jay, Please note that the assesment of Asacol is based on anecdotal observation not any special studies.  My GI says that Colazal has the least amount of systemic absorption out of all the 5-ASA’s.  As for effectiveness, I do not know, but I assume he wouldn’t recommend an ineffective drug.  Another version of 5-ASA that is not as systemically absorbed is dipentum.  As for effectiveness, I don’t know. Thanks, Mike — To reply via email remove the (SPAM_BLOCKER) from my email address:

Mike, thank you for sharing your experience.  I appreciate it very much.  I am very sorry for your ill fortune with all of this.  That so-called "chip on your shoulder" is certainly well-earned.

I’m not against people taking Asacol if it works for them.  I do feel that the nasty side effects are often dismissed by doctors, and it seems form studying this group that Asacol seems to have more significant side effects than the other 5-ASA drugs. Would this be true, for example, of Colazal?  One doctor has suggested it, and I am curious as to whether you would view Colazal as having less side effects than Asacol, BUT ALSO being at least as effective against the IBD. Thanks so much, Mike…and anyone else who might care to offer thoughts on this. Jay

Response:

Oh, I forgot to mention that I was taking 9 pills a day. Thanks, Mike — To reply via email remove the X’s from my email address:

– Hide quoted text — Show quoted text – Thanks, Mike. Mike, I know you are very much against the use of Asacol, and very understandably so, since it created great and apparently lasting problems for you.  I would be interested in knowing more about your experience with Asacol, so that we might know what to look for so that we don’t end up with a lot of problems from it down the line. How long did you take Asacol?  How much?  What side effects did you experience at the time you were taking it?  And what (and why!) have the ill effects of the drugs caused as lasting problems for you? Thanks so much, Mike.  I appreciate you taking the time to respond to my questions about Asacol. Jay Hi Jay! I do rember seeing my headache neurologist and mentioning that I had taken Asacol years ago, and she blurted out, "Oh!  Asacol gives some nasty headaches!"  I was surprised that she even knew what Asacol was (most non-GI docs are totally ignorant of the drug).  So, I guess it is a pretty common side effect.  I didn’t headaches, but I think Asacol causes general vasodilation which would explain the headache and other symptoms. Thanks, Mike — To reply via email remove the X’s from my email address: If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

Hi Jay! I do rember seeing my headache neurologist and mentioning that I had taken Asacol years ago, and she blurted out, "Oh!  Asacol gives some nasty headaches!"  I was surprised that she even knew what Asacol was (most non-GI docs are totally ignorant of the drug).  So, I guess it is a pretty common side effect.  I didn’t headaches, but I think Asacol causes general vasodilation which would explain the headache and other symptoms. Thanks, Mike — To reply via email remove the X’s from my email address:

– Hide quoted text — Show quoted text – If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

Thanks, Mike. Mike, I know you are very much against the use of Asacol, and very understandably so, since it created great and apparently lasting problems for you.  I would be interested in knowing more about your experience with Asacol, so that we might know what to look for so that we don’t end up with a lot of problems from it down the line. How long did you take Asacol?  How much?  What side effects did you experience at the time you were taking it?  And what (and why!) have the ill effects of the drugs caused as lasting problems for you? Thanks so much, Mike.  I appreciate you taking the time to respond to my questions about Asacol. Jay – Hide quoted text — Show quoted text -Hi Jay! I do rember seeing my headache neurologist and mentioning that I had taken Asacol years ago, and she blurted out, "Oh!  Asacol gives some nasty headaches!"  I was surprised that she even knew what Asacol was (most non-GI docs are totally ignorant of the drug).  So, I guess it is a pretty common side effect.  I didn’t headaches, but I think Asacol causes general vasodilation which would explain the headache and other symptoms. Thanks, Mike — To reply via email remove the X’s from my email address: If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

jay OH YES.wicked headaches..on 12 tabs of it especially..and at the start of taking it several years ago..i am now on 9 tabs and rarely have a problem..its a known side effect..i used tylenol and they were fine..i knew it was the asacol cos i dont get headaches as a rule..ever…and it was the only new thing i had..u might ask if u could try 9 a day..i found a lot of difference between 9 and 12..hair loss with 12…the headaches, some nausea, indigestion, heartburn, some diarrhea etc..all with 12..not with 9..and it didnt make any difference in the good it did to cut down to 9..do ask…it doesnt mean u are intolerant to it ..necessarily ..it might mean u should be on less of it… good luck..annie

Response:

Jay, I’m not against people taking Asacol if it works for them.  I do feel that the nasty side effects are often dismissed by doctors, and it seems form studying this group that Asacol seems to have more significant side effects than the other 5-ASA drugs.  I think that there are many people who are getting very sick off the medicine, but blame it on the IBD, ‘cos that is what their doctors told them, and docotrs are reluctant to dis’ 5-ASA ‘cos thery have so few weapons in the arsenal against IBD.  After all, it’s only been 100 years since the classification of IBD, why would anything new ever get developed? OK, enough ranting…  Here’s my story. It began after a business trip from Europe.  A couple days after the trip (the day before Thanksgiving), I was very constipated, and tried to poop. Instead of poop, I got blood–lots of it.  Well, I went to see the docs and got dx’d with Crohns ‘cos it was in the rectum and cecum.  Later on, it was changed to UC, and now it’s "I don’t know what it is."  Anyways, got some of the 5-ASA enemas which worked like a charm, then some asacol.  A few days after taking the Asacol, I woke up with the "flu."  I was beet red, my eyes were totally inflamed, had a sore throat that never went away, and was generally sicker than before taking the drugs.  Over the next few weeks I lost about 20 pounds and was miserable, edgy, and flu-like.  I was told that I was crazy, asacol has no side effects.  They gave me prozac to stop my craziness.  As time wore on, my nerves were damaged, and developed orthostatic hypotension.  Then my hearing went.  I started developing stroke-like symptoms.  I finally got off of it 8 months later, but it was too late.  Later I was diagnosed with several different illnesses, most of which listed aspirin-type drugs as contraindicated.  I will say this on behalf of Asacol, it did stop my bleeding. I cannot prove asacol was my nemesis, but considering how I got sick only after taking the meds and felt fine when I was bleeding for over a month,  I feel that asacol is to blame and it took many years off of my life.  The resulting illness disabled me and my wife left shortly after.  I have been fighting to recover ever since–3 years ago. All for a patch of inflammation the size of a quarter. It wasn’t worth it. So now you know why I have a chip on my shoulder. I don’t know what to say about your friend.  Her colitis is worse than mine, and it is more necessary for her to get that treated.  It’s going to be a tradeoff, because the only way to treat IBD is with poisonous drugs. Someday, maybe, they will figure out a more benign way to treat us, but until then, we are stuck. Thanks, Mike — To reply via email remove the X’s from my email address:

– Hide quoted text — Show quoted text – Thanks, Mike. Mike, I know you are very much against the use of Asacol, and very understandably so, since it created great and apparently lasting problems for you.  I would be interested in knowing more about your experience with Asacol, so that we might know what to look for so that we don’t end up with a lot of problems from it down the line. How long did you take Asacol?  How much?  What side effects did you experience at the time you were taking it?  And what (and why!) have the ill effects of the drugs caused as lasting problems for you? Thanks so much, Mike.  I appreciate you taking the time to respond to my questions about Asacol. Jay Hi Jay! I do rember seeing my headache neurologist and mentioning that I had taken Asacol years ago, and she blurted out, "Oh!  Asacol gives some nasty headaches!"  I was surprised that she even knew what Asacol was (most non-GI docs are totally ignorant of the drug).  So, I guess it is a pretty common side effect.  I didn’t headaches, but I think Asacol causes general vasodilation which would explain the headache and other symptoms. Thanks, Mike — To reply via email remove the X’s from my email address: If one is taking Asacol and is having a near constant nasty headache, would this indicate an intolerance to the drug or is this simply a side effect which needs to be endured? Have others here experienced headaches with Asacol?  (the current dosage is 12 per day…4, 3x) Thank you, friends. Jay

Response:

Question:

It is my understanding the 5ASA’s are topical thus the need to have them release at certain points in the intestinal tract.  The different 5ASA preparations, such as Asacol and Pentasa release at different locations in the intestine to deliver the drug where needed. HTH  mgbio – Hide quoted text — Show quoted text – Bacteria are what break apart the sulfa from the 5ASA  in the sulfa containing compounds. I have NOT heard about it’s need in digesting the newer 5ASAs. Debs I’ve never read anything that said it is the bacteria that breaks down the coating of the pill. I’ve always heard it was the ph level – but I don’t really know what that means chemically or biologically. Maybe bacteria help determine what the ph level is or maybe different bacteria live at different ph levels which is something that I suspect because I’ve read studies that say that different bacteria inhabit different parts of the digestive tract. Do you have any more conclusive information that says it is bacteria that break down the coating on the asacol? I would be interested to know more about this. Thanks, Jeff 2 To continue my other note I posted.  Undisolved Asacol just means that you are passing it out faster than it has a chance to dissolve.  The bacteria in the last part of your colon is what breaks down the outer casing on the pills to release the medication.  When I start having diarrhea, my asacol is found in the toilet too. Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

Bacteria are what break apart the sulfa from the 5ASA  in the sulfa containing compounds. I have NOT heard about it’s need in digesting the newer 5ASAs. Debs – Hide quoted text — Show quoted text – I’ve never read anything that said it is the bacteria that breaks down the coating of the pill. I’ve always heard it was the ph level – but I don’t really know what that means chemically or biologically. Maybe bacteria help determine what the ph level is or maybe different bacteria live at different ph levels which is something that I suspect because I’ve read studies that say that different bacteria inhabit different parts of the digestive tract. Do you have any more conclusive information that says it is bacteria that break down the coating on the asacol? I would be interested to know more about this. Thanks, Jeff 2 To continue my other note I posted.  Undisolved Asacol just means that you are passing it out faster than it has a chance to dissolve.  The bacteria in the last part of your colon is what breaks down the outer casing on the pills to release the medication.  When I start having diarrhea, my asacol is found in the toilet too. Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

Both asacol and pentasa are coated to break down at specific pH levels which correlate to locations in the small intestine (pentasa) and colon (asacol).  Often, the casings will come out but the medication has been released and absorbed by the body.  I asked because I take pentasa and I noticed that I was often passing the little "beads" of pentasa inside the capsules.  My GI told me that not all the beads are absorbed and some passes through but enough are absorbed to have the desired effect.  mgbio – Hide quoted text — Show quoted text – To continue my other note I posted.  Undisolved Asacol just means that you are passing it out faster than it has a chance to dissolve.  The bacteria in the last part of your colon is what breaks down the outer casing on the pills to release the medication.  When I start having diarrhea, my asacol is found in the toilet too. Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

I’ve never read anything that said it is the bacteria that breaks down the coating of the pill. I’ve always heard it was the ph level – but I don’t really know what that means chemically or biologically. Maybe bacteria help determine what the ph level is or maybe different bacteria live at different ph levels which is something that I suspect because I’ve read studies that say that different bacteria inhabit different parts of the digestive tract. Do you have any more conclusive information that says it is bacteria that break down the coating on the asacol? I would be interested to know more about this. Thanks, Jeff 2

– Hide quoted text — Show quoted text – To continue my other note I posted.  Undisolved Asacol just means that you are passing it out faster than it has a chance to dissolve.  The bacteria in the last part of your colon is what breaks down the outer casing on the pills to release the medication.  When I start having diarrhea, my asacol is found in the toilet too. Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

To continue my other note I posted.  Undisolved Asacol just means that you are passing it out faster than it has a chance to dissolve.  The bacteria in the last part of your colon is what breaks down the outer casing on the pills to release the medication.  When I start having diarrhea, my asacol is found in the toilet too.

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

You are all so wonderful for all your responses.  Thank you so much. It appears that my food is coming out undigested; seeds, lettuce, tomato, etc and I noticed what looked like two whole Asacol tablets floating in the toilet.  I’ve been downing Pepto Bismol because the immodium hasn’t been working well, and of course because of the pepto everything is black also.  I’ve returned to work, community mental health and being on the road is a real challenge.  Tonight, (2nd shift) I used the bathroom 10 times.  The pepto didn’t work so well this shift.  My GI doc said from the colonoscopy my chrons is mild.  I became very ill after the colonoscopy and wonder if that scope had anything to do with it.  My GI doc had put me out of work until the end of September.  (If it’s so mild, why so long?)  Last week I wasn’t eating, was nauseous and had to drink Ensure.  This week my appetite is back I think from the pepto.  I fought to return to work so I can establish my routine.  I was laying on the couch or bed sleeping and becoming weak, lazy, and feeling sorry for myself.  Work forces me to focus on others.  I’ve had to share with some of my clients about my Chrons.  It’s difficult trying to have a therapeutic conversation with them, then immediately have to run from them to find a toilet.  Maybe some will have delusions about my illness and me, but I think the truth is always better.  Thank you for all your support my new friends.   Nora – Hide quoted text — Show quoted text -Isn’t the outer coating of the tablet required to prohibit the 5ASA drug from being released too soon in the digestive tract?  Could this be due to a chipped tablet or a defective coating? Is there any other explaination to why or how the core could be digested and the coating pass almost whole?  Would the premature release of a 5asa drug in the digestive track cause problems? Joe I agree with Susan… I had mentioned my "passing" the Asacol tablets to my doctor and he agreed that it occurs often… and it’s generally the shell.   If it is anything more, I would speak to your doctor about it.

Response:

Nora, Hey, you are in community mental health?  I used to work in a psychiatric hospital for adolescents.  For the last few years I have been an addictions counselor.  I have just moved across the country, so now I am looking for another job in that field. I totally know what you mean about the difficulty in having a therapeutic conversation when you need to use the washroom.  I have often let my clients know about my Crohn’s too.  It is far better to be honest about that, or they will end up personalizing it in some way. Ann

– Hide quoted text — Show quoted text – You are all so wonderful for all your responses.  Thank you so much. It appears that my food is coming out undigested; seeds, lettuce, tomato, etc and I noticed what looked like two whole Asacol tablets floating in the toilet.  I’ve been downing Pepto Bismol because the immodium hasn’t been working well, and of course because of the pepto everything is black also.  I’ve returned to work, community mental health and being on the road is a real challenge.  Tonight, (2nd shift) I used the bathroom 10 times.  The pepto didn’t work so well this shift.  My GI doc said from the colonoscopy my chrons is mild.  I became very ill after the colonoscopy and wonder if that scope had anything to do with it.  My GI doc had put me out of work until the end of September.  (If it’s so mild, why so long?)  Last week I wasn’t eating, was nauseous and had to drink Ensure.  This week my appetite is back I think from the pepto.  I fought to return to work so I can establish my routine.  I was laying on the couch or bed sleeping and becoming weak, lazy, and feeling sorry for myself.  Work forces me to focus on others.  I’ve had to share with some of my clients about my Chrons.  It’s difficult trying to have a therapeutic conversation with them, then immediately have to run from them to find a toilet.  Maybe some will have delusions about my illness and me, but I think the truth is always better.  Thank you for all your support my new friends.   Nora Isn’t the outer coating of the tablet required to prohibit the 5ASA drug from being released too soon in the digestive tract?  Could this be due to a chipped tablet or a defective coating? Is there any other explaination to why or how the core could be digested and the coating pass almost whole?  Would the premature release of a 5asa drug in the digestive track cause problems? Joe I agree with Susan… I had mentioned my "passing" the Asacol tablets to my doctor and he agreed that it occurs often… and it’s generally the shell.   If it is anything more, I would speak to your doctor about it.

Response:

i don’t consider your cd "mild", moderate, maybe, but not mild.  mine is mild, pretty much remission.  used to be moderate and my sx’s were much like yours then. jeff

– Hide quoted text — Show quoted text – You are all so wonderful for all your responses.  Thank you so much. It appears that my food is coming out undigested; seeds, lettuce, tomato, etc and I noticed what looked like two whole Asacol tablets floating in the toilet.  I’ve been downing Pepto Bismol because the immodium hasn’t been working well, and of course because of the pepto everything is black also.  I’ve returned to work, community mental health and being on the road is a real challenge.  Tonight, (2nd shift) I used the bathroom 10 times.  The pepto didn’t work so well this shift.  My GI doc said from the colonoscopy my chrons is mild.  I became very ill after the colonoscopy and wonder if that scope had anything to do with it.  My GI doc had put me out of work until the end of September.  (If it’s so mild, why so long?)  Last week I wasn’t eating, was nauseous and had to drink Ensure.  This week my appetite is back I think from the pepto.  I fought to return to work so I can establish my routine.  I was laying on the couch or bed sleeping and becoming weak, lazy, and feeling sorry for myself.  Work forces me to focus on others.  I’ve had to share with some of my clients about my Chrons.  It’s difficult trying to have a therapeutic conversation with them, then immediately have to run from them to find a toilet.  Maybe some will have delusions about my illness and me, but I think the truth is always better.  Thank you for all your support my new friends.   Nora Isn’t the outer coating of the tablet required to prohibit the 5ASA drug from being released too soon in the digestive tract?  Could this be due to a chipped tablet or a defective coating? Is there any other explaination to why or how the core could be digested and the coating pass almost whole?  Would the premature release of a 5asa drug in the digestive track cause problems? Joe I agree with Susan… I had mentioned my "passing" the Asacol tablets to my doctor and he agreed that it occurs often… and it’s generally the shell.   If it is anything more, I would speak to your doctor about it.

Response:

May I ask what type of person you are?  Do you worry alot or are you calm. I am just asking because my doctor had given me some mild sedatives to take the edge of everyday life to try to give my stomach a rest from all the stresses.  Stress will cause your bowels to be overactive.  Since then I have been switched to Zoloft because I was showing signs of mild depression from having CD so long.  The Zoloft does take the edge off things and I don’t worry as much as I used to about things that will get me all worked up.  (I am still responsible for paying the bills ). This is a perspective to consider. good luck

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

Isn’t the outer coating of the tablet required to prohibit the 5ASA drug from being released too soon in the digestive tract?  Could this be due to a chipped tablet or a defective coating? Is there any other explaination to why or how the core could be digested and the coating pass almost whole?  Would the premature release of a 5asa drug in the digestive track cause problems? Joe – Hide quoted text — Show quoted text – I agree with Susan… I had mentioned my "passing" the Asacol tablets to my doctor and he agreed that it occurs often… and it’s generally the shell.   If it is anything more, I would speak to your doctor about it.

Response:

then again, it all depends on the "place" of inflammation.  pentasa works better in the upper portion, small intestines.  she may take pentasa and not have any capsule residuals, but it may not do any good if it releases to quickly if her inflammation is lower in the system. jeff

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me? I had this problem.  I told my doctor about it, and he took me off the Asacol and put me on Pentasa instead.   You may want to ask your doctor to change you to Pentasa or some other med that disolves faster than Asacol.

Response:

my guess it may have more to do with it’s "time release".  remember, this med is "timed" to work in only certain parts of the bowel.  if it is towards the end, well, you can guess. jeff

– Hide quoted text — Show quoted text – As I re-read the Asacol info guide for the response to the original post, something dawned on me.  Ironically, 2-3% of the the patients report finding Asacol tablets in their stool….this is the same percentage of patients who are Asacol intolerant.  I wonder if there is a corrolation here…could finding Asacol in the stool be an indicator of being intolerant?  This could save someone a whole lot of trouble if there was a corrolation here. We had such a rough time because we didn’t realize that the Asacol was making my daughter sick.  We didn’t attribute the worsening of her condition to the Asacol because we figured if the tablet was coming out whole, it was not being digested.  On top of that, the side effects of Asacol are close to the symtoms of UC anyway, so its so hard to tell whats going on.  To make matters worse, doctors usually up the dosage of Asacol during the flare. Our daughter showed improvements within 12 hours of taking her off Asacol.  Her symptoms reappeared within a few hours of taking Asacol on subsequent tries to reintroduce the drug in her maintenance program. Quick question:  Are your tablets whole or are they just a shell?  We had several instances where the tablet appeared to come out looking an empty capsule….it was as if the outer coating failed and the inside desolved before the protective shell.  Some tablets came out and looked like they were soaked in water (slightly bloated and soft outside). Maybe there was something wrong with the coating on the batch….I know that its very improtant that these tablets be taken whole and that the coating remain in tact so the drug can be delivered to the colon. Joe Nora, This happened to my daughter too…..she would find her Asacol tablets with undigested food. This may sometimes happen as indicated by the Asacol info guide: http://www.pgpharma.com/pi/US-Asacol.pdf There is a warning that if this happens frequently to bring this to your doctors attention.  We took her off Asacol because it was making her condition worse.  This sometimes happens in a reported 3% of the people. Joe Along with my undigested food ending up in the toilet, my Asacol tablets are also.   Has anyone else had this problem, and do you know what it means about me?

Response:

Sometimes it’s the empty shell that is expelled but the little white things are in you.  Sometime you will also find these in the bowl.  UM MOM Susan

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

I agree with Susan… I had mentioned my "passing" the Asacol tablets to my doctor and he agreed that it occurs often… and it’s generally the shell.   If it is anything more, I would speak to your doctor about it.

Response:

you might want to think about asking the doc about controlling all that inflammation.  inflammation is the cause of the build up of scar tissue and if you know anything about cd, you know what happens when scar tissue builds up! jeff

– Hide quoted text — Show quoted text – I have mild Crohn’s, compared to others especially. No surgeries, no constant pain every day, it affects my life but I have been able to lead a fairly normal life, whatever normal is  haha My GI says I have alot of inflamation, but it keeps itself at bay. Cheers i seriously think you need a better DR .. a gastro  there is no way you have MILD crohns ..or whatever it is mild ..keep me posted ..what kind of undigested food ? lettuce , carrots , mushrooms , lots of stuff you can`t digest with crohns .. Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

This was happening to my boy as well. He was told he had "mild" Crohn’s. Right. It’s my understanding the docs expect some tablets not to be digested; time released oxycontin does the same thing to CD sufferers. Read read read and learn about your illness! Make sure your GI doc is an IBD specialist. And good luck. Coffy

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

I have heard of this happening before. You have "mild" cd?  Who told you it was "mild"? jeff

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

i seriously think you need a better DR .. a gastro  there is no way you have MILD crohns ..or whatever it is mild ..keep me posted ..what kind of undigested food ? lettuce , carrots , mushrooms , lots of stuff you can`t digest with crohns ..

– Hide quoted text — Show quoted text – Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

Nora, This happened to my daughter too…..she would find her Asacol tablets with undigested food. This may sometimes happen as indicated by the Asacol info guide: http://www.pgpharma.com/pi/US-Asacol.pdf There is a warning that if this happens frequently to bring this to your doctors attention.  We took her off Asacol because it was making her condition worse.  This sometimes happens in a reported 3% of the people. Joe Along with my undigested food ending up in the toilet, my Asacol tablets are also.

  Has anyone else had this problem, – Hide quoted text — Show quoted text – and do you know what it means about me?

Response:

As I re-read the Asacol info guide for the response to the original post, something dawned on me.  Ironically, 2-3% of the the patients report finding Asacol tablets in their stool….this is the same percentage of patients who are Asacol intolerant.  I wonder if there is a corrolation here…could finding Asacol in the stool be an indicator of being intolerant?  This could save someone a whole lot of trouble if there was a corrolation here. We had such a rough time because we didn’t realize that the Asacol was making my daughter sick.  We didn’t attribute the worsening of her condition to the Asacol because we figured if the tablet was coming out whole, it was not being digested.  On top of that, the side effects of Asacol are close to the symtoms of UC anyway, so its so hard to tell whats going on.  To make matters worse, doctors usually up the dosage of Asacol during the flare. Our daughter showed improvements within 12 hours of taking her off Asacol.  Her symptoms reappeared within a few hours of taking Asacol on subsequent tries to reintroduce the drug in her maintenance program. Quick question:  Are your tablets whole or are they just a shell?  We had several instances where the tablet appeared to come out looking an empty capsule….it was as if the outer coating failed and the inside desolved before the protective shell.  Some tablets came out and looked like they were soaked in water (slightly bloated and soft outside). Maybe there was something wrong with the coating on the batch….I know that its very improtant that these tablets be taken whole and that the coating remain in tact so the drug can be delivered to the colon. Joe – Hide quoted text — Show quoted text – Nora, This happened to my daughter too…..she would find her Asacol tablets with undigested food. This may sometimes happen as indicated by the Asacol info guide: http://www.pgpharma.com/pi/US-Asacol.pdf There is a warning that if this happens frequently to bring this to your doctors attention.  We took her off Asacol because it was making her condition worse.  This sometimes happens in a reported 3% of the people. Joe Along with my undigested food ending up in the toilet, my Asacol tablets are also.   Has anyone else had this problem, and do you know what it means about me?

Response:

I have mild Crohn’s, compared to others especially. No surgeries, no constant pain every day, it affects my life but I have been able to lead a fairly normal life, whatever normal is  haha My GI says I have alot of inflamation, but it keeps itself at bay. Cheers

– Hide quoted text — Show quoted text – i seriously think you need a better DR .. a gastro  there is no way you have MILD crohns ..or whatever it is mild ..keep me posted ..what kind of undigested food ? lettuce , carrots , mushrooms , lots of stuff you can`t digest with crohns .. Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?  Had a cat scan of my intestines on Friday, but do not know the results yet.  Had to drink barium for the test and was injected with dye.  Thanks.  Nora

Response:

Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.

I had the same problem when I was first given Asacol. This was before I was diagnosed with UC. Once I was diagnosed, I was given prednisolon, and the diarrhea stopped immediately. At the same time the problem with the un-disolved Asacol’s was resolved, and they seem to work for me. I have not been on Prednisolon for 15 months, but still take 3*2 Asacol/day. — Hilsen/Best Regards Jens G For at skrive til mig, fjern "not" fra adressen. To e-mail me, remove "not" from address.

Response:

Of course, I am still having diarrhea about 20 times a day, and all the anti-spasmatics and anti-diarrheal medication is not working for my very mild Chrons.  Along with my undigested food ending up in the toilet, my Asacol tablets are also.  I can count them.  Right now two, because I am titrating up to three.  Has anyone else had this problem, and do you know what it means about me?

I had this problem.  I told my doctor about it, and he took me off the Asacol and put me on Pentasa instead.   You may want to ask your doctor to change you to Pentasa or some other med that disolves faster than Asacol.

Response:

I had the same problem when I was first given Asacol. This was before I was diagnosed with UC. Once I was diagnosed, I was given prednisolon, and the diarrhea stopped immediately. At the same time the problem with the un-disolved

You’re lucky, I’ve been on Prednisone and Asacol, Prednisone and Pentasa, had surgery, and am now on Pentasa alone, and I still have the diarrhea.  It started when I was 17, and now I’m 34 – so it’s been going half my life now. Incidentally, I nearly died laughing when Microsoft Word’s spell checker told me that I should spell my name "Diarrheic". Derek

Response:

Question:

Hey!  So sorry to hear you are having pain in your back!  I hope the depo-medrol shots help!  As if the CD isn’t enough, I couldn’t imagine go through arthritis as well.  You poor thing!  I hope things get better. Marlena – Hide quoted text — Show quoted text – Glad you’re feeling better Marlena!  I get terrible arthritis/arthralgia as extraintestinal symptoms of my CD.  It does move around to various places, and gets quite debilitating at times.  Right now it’s in my lower back; where I also have some degenerative arthritis anyway from an old injury, so it makes it that much worse.  The depo-medrol injections I get in my hips usually, and they help relieve the inflammation and pain pretty well throughout. Christine CD Hi Christine! What are the depo-medrol injections for, if you don’t mind me asking? I’m feeling a lot better mentally about everything.  We went and saw the movie Pirates of the Caribbean last night.  It was pretty good and it was nice getting out of the house and doing something different for a change. Anyway, hope things are okay and take care and have a wonderful weekend! Marlena Marlena – You are  more than welcome!  I’m just glad I was able to help you in some way!  Starting to exercise again will help you to feel better too, both physically and emotionally.  But – don’t overdo it! Great news that you have no strictures!  Good luck with your next remicade infusion! I know what you mean about getting your hair cut  I got mine cut today, and my nails done and feel like a new woman  I haven’t started the pred yet, cause I got the depo-medrol injections on Tue. and want to wait awhile and not overload my system on steroids Hope you have a great weekend! Christine CD Hey Christine!  You don’t know how good your this message made me feel.  I’ve been so insecure about missing work and feeling sick.  You don’t know how much your message has meant to me and made me feel better.  I’m actually in tears right now, you’ve really hit the spot.. I am starting to feel a little more "normal" in all of this and know that I’m not alone.  Thanks for your inspiration.  I really needed it. I decided I’m going to take next week of with the disability and go back to work the following week.  My boyfriend and I discussed this over dinner and I really think I need one more week to try to get better, mentally and physically. I’m going to even try exercising at the workout center here in the complex at least every other day next week for 20 minutes.  Ride the bike, do the treadmill… Whatever….Or even just try to swim a little bit.  If anything, try to get out some and not be so depressed sitting around this apartment lonely. I did get good results today from my SBFT that I have no strictures, so I can continue on my Remicade treatment. I will go for my next one next week during my time off..Hopefully that will help. Maybe even go to get my hair cut… That always makes me feel a bit better… Anyway, thanks for your kind words.  I hope you are doing a little better these days, as well.  How is the prednisone going for you? Take care and thanks so much! Marlena! (((((((Marlena)))))))  Hang in there!  We’re all with you!  I think you should take the time that you can from work right now and concentrate on feeling well; emotionally and physically.  I know things are really bad for you right now, but they will improve.  I promise!  We are all here for you on the ng and totally understand. Try to enjoy some of your time off on disability too; read a good book, meditate, know that you will have good days again soon. Wish I had a magic wand for all of us Christine CD I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago. I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Glad you’re feeling better Marlena!  I get terrible arthritis/arthralgia as extraintestinal symptoms of my CD.  It does move around to various places, and gets quite debilitating at times.  Right now it’s in my lower back; where I also have some degenerative arthritis anyway from an old injury, so it makes it that much worse.  The depo-medrol injections I get in my hips usually, and they help relieve the inflammation and pain pretty well throughout. Christine CD

– Hide quoted text — Show quoted text – Hi Christine! What are the depo-medrol injections for, if you don’t mind me asking? I’m feeling a lot better mentally about everything.  We went and saw the movie Pirates of the Caribbean last night.  It was pretty good and it was nice getting out of the house and doing something different for a change. Anyway, hope things are okay and take care and have a wonderful weekend! Marlena Marlena – You are  more than welcome!  I’m just glad I was able to help you in some way!  Starting to exercise again will help you to feel better too, both physically and emotionally.  But – don’t overdo it! Great news that you have no strictures!  Good luck with your next remicade infusion! I know what you mean about getting your hair cut  I got mine cut today, and my nails done and feel like a new woman  I haven’t started the pred yet, cause I got the depo-medrol injections on Tue. and want to wait awhile and not overload my system on steroids Hope you have a great weekend! Christine CD Hey Christine!  You don’t know how good your this message made me feel.  I’ve been so insecure about missing work and feeling sick.  You don’t know how much your message has meant to me and made me feel better.  I’m actually in tears right now, you’ve really hit the spot.. I am starting to feel a little more "normal" in all of this and know that I’m not alone.  Thanks for your inspiration.  I really needed it. I decided I’m going to take next week of with the disability and go back to work the following week.  My boyfriend and I discussed this over dinner and I really think I need one more week to try to get better, mentally and physically. I’m going to even try exercising at the workout center here in the complex at least every other day next week for 20 minutes.  Ride the bike, do the treadmill… Whatever….Or even just try to swim a little bit.  If anything, try to get out some and not be so depressed sitting around this apartment lonely. I did get good results today from my SBFT that I have no strictures, so I can continue on my Remicade treatment. I will go for my next one next week during my time off..Hopefully that will help. Maybe even go to get my hair cut… That always makes me feel a bit better… Anyway, thanks for your kind words.  I hope you are doing a little better these days, as well.  How is the prednisone going for you? Take care and thanks so much! Marlena! (((((((Marlena)))))))  Hang in there!  We’re all with you!  I think you should take the time that you can from work right now and concentrate on feeling well; emotionally and physically.  I know things are really bad for you right now, but they will improve.  I promise!  We are all here for you on the ng and totally understand. Try to enjoy some of your time off on disability too; read a good book, meditate, know that you will have good days again soon. Wish I had a magic wand for all of us Christine CD I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago. I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Hi Christine! What are the depo-medrol injections for, if you don’t mind me asking? I’m feeling a lot better mentally about everything.  We went and saw the movie Pirates of the Caribbean last night.  It was pretty good and it was nice getting out of the house and doing something different for a change. Anyway, hope things are okay and take care and have a wonderful weekend! Marlena – Hide quoted text — Show quoted text – Marlena – You are  more than welcome!  I’m just glad I was able to help you in some way!  Starting to exercise again will help you to feel better too, both physically and emotionally.  But – don’t overdo it! Great news that you have no strictures!  Good luck with your next remicade infusion! I know what you mean about getting your hair cut  I got mine cut today, and my nails done and feel like a new woman  I haven’t started the pred yet, cause I got the depo-medrol injections on Tue. and want to wait awhile and not overload my system on steroids Hope you have a great weekend! Christine CD Hey Christine!  You don’t know how good your this message made me feel.  I’ve been so insecure about missing work and feeling sick.  You don’t know how much your message has meant to me and made me feel better.  I’m actually in tears right now, you’ve really hit the spot.. I am starting to feel a little more "normal" in all of this and know that I’m not alone.  Thanks for your inspiration.  I really needed it. I decided I’m going to take next week of with the disability and go back to work the following week.  My boyfriend and I discussed this over dinner and I really think I need one more week to try to get better, mentally and physically. I’m going to even try exercising at the workout center here in the complex at least every other day next week for 20 minutes.  Ride the bike, do the treadmill… Whatever….Or even just try to swim a little bit.  If anything, try to get out some and not be so depressed sitting around this apartment lonely. I did get good results today from my SBFT that I have no strictures, so I can continue on my Remicade treatment. I will go for my next one next week during my time off..Hopefully that will help. Maybe even go to get my hair cut… That always makes me feel a bit better… Anyway, thanks for your kind words.  I hope you are doing a little better these days, as well.  How is the prednisone going for you? Take care and thanks so much! Marlena! (((((((Marlena)))))))  Hang in there!  We’re all with you!  I think you should take the time that you can from work right now and concentrate on feeling well; emotionally and physically.  I know things are really bad for you right now, but they will improve.  I promise!  We are all here for you on the ng and totally understand. Try to enjoy some of your time off on disability too; read a good book, meditate, know that you will have good days again soon. Wish I had a magic wand for all of us Christine CD I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Marlena – You are  more than welcome!  I’m just glad I was able to help you in some way!  Starting to exercise again will help you to feel better too, both physically and emotionally.  But – don’t overdo it! Great news that you have no strictures!  Good luck with your next remicade infusion! I know what you mean about getting your hair cut  I got mine cut today, and my nails done and feel like a new woman  I haven’t started the pred yet, cause I got the depo-medrol injections on Tue. and want to wait awhile and not overload my system on steroids Hope you have a great weekend! Christine CD

– Hide quoted text — Show quoted text – Hey Christine!  You don’t know how good your this message made me feel.  I’ve been so insecure about missing work and feeling sick.  You don’t know how much your message has meant to me and made me feel better.  I’m actually in tears right now, you’ve really hit the spot.. I am starting to feel a little more "normal" in all of this and know that I’m not alone.  Thanks for your inspiration.  I really needed it. I decided I’m going to take next week of with the disability and go back to work the following week.  My boyfriend and I discussed this over dinner and I really think I need one more week to try to get better, mentally and physically. I’m going to even try exercising at the workout center here in the complex at least every other day next week for 20 minutes.  Ride the bike, do the treadmill… Whatever….Or even just try to swim a little bit.  If anything, try to get out some and not be so depressed sitting around this apartment lonely. I did get good results today from my SBFT that I have no strictures, so I can continue on my Remicade treatment. I will go for my next one next week during my time off..Hopefully that will help. Maybe even go to get my hair cut… That always makes me feel a bit better… Anyway, thanks for your kind words.  I hope you are doing a little better these days, as well.  How is the prednisone going for you? Take care and thanks so much! Marlena! (((((((Marlena)))))))  Hang in there!  We’re all with you!  I think you should take the time that you can from work right now and concentrate on feeling well; emotionally and physically.  I know things are really bad for you right now, but they will improve.  I promise!  We are all here for you on the ng and totally understand. Try to enjoy some of your time off on disability too; read a good book, meditate, know that you will have good days again soon. Wish I had a magic wand for all of us Christine CD I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Hey Christine!  You don’t know how good your this message made me feel.  I’ve been so insecure about missing work and feeling sick.  You don’t know how much your message has meant to me and made me feel better.  I’m actually in tears right now, you’ve really hit the spot.. I am starting to feel a little more "normal" in all of this and know that I’m not alone.  Thanks for your inspiration.  I really needed it. I decided I’m going to take next week of with the disability and go back to work the following week.  My boyfriend and I discussed this over dinner and I really think I need one more week to try to get better, mentally and physically.   I’m going to even try exercising at the workout center here in the complex at least every other day next week for 20 minutes.  Ride the bike, do the treadmill… Whatever….Or even just try to swim a little bit.  If anything, try to get out some and not be so depressed sitting around this apartment lonely. I did get good results today from my SBFT that I have no strictures, so I can continue on my Remicade treatment. I will go for my next one next week during my time off..Hopefully that will help. Maybe even go to get my hair cut… That always makes me feel a bit better… Anyway, thanks for your kind words.  I hope you are doing a little better these days, as well.  How is the prednisone going for you? Take care and thanks so much! Marlena! – Hide quoted text — Show quoted text – (((((((Marlena)))))))  Hang in there!  We’re all with you!  I think you should take the time that you can from work right now and concentrate on feeling well; emotionally and physically.  I know things are really bad for you right now, but they will improve.  I promise!  We are all here for you on the ng and totally understand. Try to enjoy some of your time off on disability too; read a good book, meditate, know that you will have good days again soon. Wish I had a magic wand for all of us Christine CD I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

(((((((Marlena)))))))  Hang in there!  We’re all with you!  I think you should take the time that you can from work right now and concentrate on feeling well; emotionally and physically.  I know things are really bad for you right now, but they will improve.  I promise!  We are all here for you on the ng and totally understand. Try to enjoy some of your time off on disability too; read a good book, meditate, know that you will have good days again soon. Wish I had a magic wand for all of us Christine CD

– Hide quoted text — Show quoted text – I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

– Hide quoted text — Show quoted text -well i have to accept that i now definitely have type 2 diabetes as well as ibd and epilepsy..wish i could trade the old body in for a new model..what to eat will be a fun issue…how to exercise when one is in pain, exhausted from the ibd and meds..is another…this should be interesting..i have been hoping and hoping it was just the pred..oh well…another thing to accept and move on with i guess. but i am feeling kinda stinky right now..like i keep getting dumped on..and we havent even gotten to the eye issue yet..the hmo is deciding if it would be ok if i see one of THEIR doctors..oh yes….he is on cigna…but u see ..he is OUT HERE adn i am still tied to OUT THERE(boston)…what the heck dif does it make to cigna if i see a cigna doctor here or in boston? YIKES they are stupid asses.. well there is lots of sugar free chocolate available in one particular supermarket we go to…guess i will be getting that<G take care marlena..at least we all have each other…and alan bless him..is willing to eat exactly what i eat..isnt that something? (cept when it comes to the candy bars, the wine..which i dont like anyway..and probably a few otherthings lol) but he is great and supportive..it was hard having to tell him long distance about this..he didnt really believe me til i read him the email the doctor sent me…guess he was in denial too <g take care annie

Annie, my best friend was borderline diabetic and her dr put her on sugar busters…her numbers dropped to a normal range within 2 months. He said it is a good diet for diabetics.   Basically, white potatoes are a big no-no, and things like white bread, white rice and pasta. But sweet potatoes are ok, and  whole grain breads, brown rice are good.   (I mix 2 pounds of brown rice with about 6 oz of wild rice, so I get that nice wild rice taste.)  If you go to Trader Joe’s (there are several on the east side) you can get whole grain pasta for about 99 cents a bag (16 oz) in a variety fo shapes.  It has a nutty taste. I have the cookbook but not the book.  My girlfriend lost 40 pounds on this diet…I haven’t lost weight like that, but my glucose numbers are normal.  (Diabetes runs in my family:  a grandmother, 2 uncles, an aunt, a younger brother and just recently my 25 yr old nephew!)   It’s an easy diet to follow.  I get whole grain pitas or tortillas instead of the white flour or corn ones for example.   Another thing is watching the ingredients.  Sugar (or fructose or corn syrup, the various sweeteners) should be no higher on the label than the 5th ingredient.  I find I am reading labels more carefully now, even in the freezer case (I like to take things like Lean Cuisine to work for lunch).   I use real fruit, or low sugar jams, and natural peanut butter you have to keep in the frig (no sugar in it).    

Response:

The most important factor in determining percent side effects is to get a RANDOM sample of folks who take the drug. This board is NOT representative of the vast majority of IBD sufferers. It is mostly made up of folks who are more sick and/or more resistant to standard treatments. Do not be paranoid of the FDA. They will not hurt you. Debs – Hide quoted text — Show quoted text – 3% side effects from asacol or 5 asa? Ha you must have missed the recent thread from numerous people who have problems with it. If you rely on the fda for your info you’re a far cry from what is accurate.

Response:

And many others have none of those side effects from ASA meds.  mgbio – Hide quoted text — Show quoted text – Marelena Why does your doc have you on pentasa if you are on Imuran and remicade. Are you aware many p[eople have fatigue, D and pain from 5 asa meds like pentasa and asacol?

Response:

3% side effects from asacol or 5 asa? Ha you must have missed the recent thread from numerous people who have problems with it. If you rely on the fda for your info you’re a far cry from what is accurate.

Yeah because anecdotal evidence from a support newsgroup is far more reliable than a controlled, randomized study.  Give it a rest already.

Response:

I agree with you Debs. I’m one of those that have problems with 5ASA drugs and I know I wouldn’t be here if my UC responded better to standard treatments. — Paul Visit our photo albums at http://www.laflammefamily.ca To reply, replace "deadspam.com" with "laflammefamily.ca" — – Hide quoted text — Show quoted text – The most important factor in determining percent side effects is to get a RANDOM sample of folks who take the drug. This board is NOT representative of the vast majority of IBD sufferers. It is mostly made up of folks who are more sick and/or more resistant to standard treatments. Do not be paranoid of the FDA. They will not hurt you. Debs 3% side effects from asacol or 5 asa? Ha you must have missed the recent thread from numerous people who have problems with it. If you rely on the fda for your info you’re a far cry from what is accurate.

Response:

many p[eople have fatigue, D and pain from 5 asa meds like pentasa and asacol?

The medical literature does not support these claims. The last big clinical trial of Pentasa showed only a 3 percent incidence of diarrhea, for example. And these drugs act very specifically on colonic mucosa; they don’t cause anemia and they don’t act on the central nervous system, so I doubt they cause significant "fatigue" for most people. According to a recent study, these drugs also reduce the risk of colon cancer in IBD patients by 80 percent.

Response:

3% side effects from asacol or 5 asa? Ha you must have missed the recent thread from numerous people who have problems with it. If you rely on the fda for your info you’re a far cry from what is accurate.

Response:

- Hide quoted text — Show quoted text – Hi Annie! Thanks for the message.  Your right, I definitely need to realize I am going to have to deal with this the rest of my life.  It’s just so hard to think that way sometimes.  I actually did say that a couple of days ago, so I guess that is a start.  I emailed work and will take the rest of this week and next week off of work.  That will give me more time to rest and hopefully start feeling better.  It’s so hard because this darn illness just comes and goes.  I could be feeling terrible in the morning, and by afternoon I am feeling fine.  Or, one day I feel great, next day is terrible.  So, it’s just so hard to judge. Anyway, thanks for your thoughts. I hope everything works out with your eyes.  It sounds like you are going through a lot!   I’m sorry to hear about you not feeling well, and being depressed and lonely on top of that.  Sometimes things are so rough and we wonder "Why me?!?!".  But, I am a believer that everything happens for a reason.  For me, I have become a much more caring and companionate individual.  I now look at things in a different perspective then I would have if I had never been ill. Take care!  Let us know what the drs say. Marlena

hi marlena well i have to accept that i now definitely have type 2 diabetes as well as ibd and epilepsy..wish i could trade the old body in for a new model..what to eat will be a fun issue…how to exercise when one is in pain, exhausted from the ibd and meds..is another…this should be interesting..i have been hoping and hoping it was just the pred..oh well…another thing to accept and move on with i guess. but i am feeling kinda stinky right now..like i keep getting dumped on..and we havent even gotten to the eye issue yet..the hmo is deciding if it would be ok if i see one of THEIR doctors..oh yes….he is on cigna…but u see ..he is OUT HERE adn i am still tied to OUT THERE(boston)…what the heck dif does it make to cigna if i see a cigna doctor here or in boston? YIKES they are stupid asses.. well there is lots of sugar free chocolate available in one particular supermarket we go to…guess i will be getting that<G take care marlena..at least we all have each other…and alan bless him..is willing to eat exactly what i eat..isnt that something? (cept when it comes to the candy bars, the wine..which i dont like anyway..and probably a few otherthings lol) but he is great and supportive..it was hard having to tell him long distance about this..he didnt really believe me til i read him the email the doctor sent me…guess he was in denial too <g take care annie

Response:

Hi!  No, I was not aware of this… I will have to ask her about this when I talk to her… Thanks for the info!  I really appreciate it. Marlena – Hide quoted text — Show quoted text -Marelena Why does your doc have you on pentasa if you are on Imuran and remicade. Are you aware many p[eople have fatigue, D and pain from 5 asa meds like pentasa and asacol?

Response:

Marelena Why does your doc have you on pentasa if you are on Imuran and remicade. Are you aware many p[eople have fatigue, D and pain from 5 asa meds like pentasa and asacol?

Response:

Hi Annie! Thanks for the message.  Your right, I definitely need to realize I am going to have to deal with this the rest of my life.  It’s just so hard to think that way sometimes.  I actually did say that a couple of days ago, so I guess that is a start.  I emailed work and will take the rest of this week and next week off of work.  That will give me more time to rest and hopefully start feeling better.  It’s so hard because this darn illness just comes and goes.  I could be feeling terrible in the morning, and by afternoon I am feeling fine.  Or, one day I feel great, next day is terrible.  So, it’s just so hard to judge. Anyway, thanks for your thoughts. I hope everything works out with your eyes.  It sounds like you are going through a lot!   I’m sorry to hear about you not feeling well, and being depressed and lonely on top of that.  Sometimes things are so rough and we wonder "Why me?!?!".  But, I am a believer that everything happens for a reason.  For me, I have become a much more caring and companionate individual.  I now look at things in a different perspective then I would have if I had never been ill. Take care!  Let us know what the drs say. Marlena – Hide quoted text — Show quoted text – Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena hi marlena first..dont rush back to work..i am sure everyone will say the same second i know nothing about remicaid…but its supposed to be good for a lot of people what i can say is..hang in there..i understand totally…one of the times i was working i knew they wuold NOT understand my being out with bleeding, d and all..so i said i had the flu..then of course i GOT the flu<g… i finally had to stop working 8 years ago ..i was 48 and had i thought years ahead of me to work..and i loved what i was doing… leaving work hasnt made me better..but it allows me time to recover from each bout …and every job i had i was criticized for either being out sick or ‘lacking lots of get up and go’..(except one job..and that place closed..wouldnt u know) its tough..but u have to put your health first…and u have to remind yourself really loudly that this is CHRONIC meaning it will not disappear…u may be symptom free here and there…in a sort of remission for a while..but ibd isnt curable and it will come back…so what u said about being tired of being sick is something u really have to deal with …u have to go thru the grief stages we were all discussing on another thread…and realize way inside your soul and mind that you are sick..you are gonna be sick..u may feel well a lot of the time or not..but this is here and its part of your life now..and u have to accept it and live with it..not try to live beyond it.. that might sound kind of hard…and i dont want to be hard and cold..but u have to know the truth and deal with it..thats the first thing i think about chronic illness..accepting that its chronic..not looking for ‘cures" but just looking to lead your life as best as u can with it..hoping of course for remissions and even hoping for a cure someday..but not waiting for any miracles..just doing the best u can with what u have.. i know from where i speak..i am sitting here waiting for 3 phone calls today 1)the ok to see a retina specialist so i can find out how bad my eyes are..if its correctible..and what is the worst case scenario now 2)whether or not i can continue on the 6mp..how bad my liver really is 3) whether or not i am a diabetic now as well and have to deal with all of that.. my husband is on a plane to boston 2500 miles away..i am all alone here waiting for these calls..and then the future visit to the eye doctor..what will happen then? i am scared, hurt, not feeling very well, depressed, angry and lonely.. and praying for you ..and for everyone on the board…and yeah..i am here in between bathroom trips writing about frozen sh-t <g so i am trying to keep my sense of humor as well.. be ok marlene…we are all behind u.. love annie

Response:

- Hide quoted text — Show quoted text – Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

hi marlena first..dont rush back to work..i am sure everyone will say the same second i know nothing about remicaid…but its supposed to be good for a lot of people what i can say is..hang in there..i understand totally…one of the times i was working i knew they wuold NOT understand my being out with bleeding, d and all..so i said i had the flu..then of course i GOT the flu<g… i finally had to stop working 8 years ago ..i was 48 and had i thought years ahead of me to work..and i loved what i was doing… leaving work hasnt made me better..but it allows me time to recover from each bout …and every job i had i was criticized for either being out sick or ‘lacking lots of get up and go’..(except one job..and that place closed..wouldnt u know) its tough..but u have to put your health first…and u have to remind yourself really loudly that this is CHRONIC meaning it will not disappear…u may be symptom free here and there…in a sort of remission for a while..but ibd isnt curable and it will come back…so what u said about being tired of being sick is something u really have to deal with …u have to go thru the grief stages we were all discussing on another thread…and realize way inside your soul and mind that you are sick..you are gonna be sick..u may feel well a lot of the time or not..but this is here and its part of your life now..and u have to accept it and live with it..not try to live beyond it.. that might sound kind of hard…and i dont want to be hard and cold..but u have to know the truth and deal with it..thats the first thing i think about chronic illness..accepting that its chronic..not looking for ‘cures" but just looking to lead your life as best as u can with it..hoping of course for remissions and even hoping for a cure someday..but not waiting for any miracles..just doing the best u can with what u have.. i know from where i speak..i am sitting here waiting for 3 phone calls today 1)the ok to see a retina specialist so i can find out how bad my eyes are..if its correctible..and what is the worst case scenario now 2)whether or not i can continue on the 6mp..how bad my liver really is 3) whether or not i am a diabetic now as well and have to deal with all of that.. my husband is on a plane to boston 2500 miles away..i am all alone here waiting for these calls..and then the future visit to the eye doctor..what will happen then? i am scared, hurt, not feeling very well, depressed, angry and lonely.. and praying for you ..and for everyone on the board…and yeah..i am here in between bathroom trips writing about frozen sh-t <g so i am trying to keep my sense of humor as well.. be ok marlene…we are all behind u.. love annie

Response:

I am on imuran 100 mg.  Pentasa 4 pills 4 times a day.  To be honest, I don’t know what type of Crohn’s I have.  I just know I have had the surgeries for the strictures in the past.  I have been sick now for about 4 months.  Some days are good, some days are bad.  I have been feeling better than I was feeling since the Remicade, but am still not feeling good.  I just don’t feel right. Marlena – Hide quoted text — Show quoted text – what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Yes, there is hope, so don’t give up!  When I was first dx’ed I was in constant pain and thought I’d never be "normal" again.  Thankfully, things did improve (after surgery for me)! It took a while for us to find the right balance and dosage of medication, but it was well worth  mgbio – Hide quoted text — Show quoted text – Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

My friend and I (she has Crohns and we used to work together) used to say that it is a shame Crohns isn’t more visual. You can be ill, but outwardly there aren’t many signs, unlike say a broken leg , and so you feel as if people think you are skiving. Where I used to work I was off work for 6 months and then they review it, however I then resigned because I knew it would be a long time before I was better Mel

– Hide quoted text — Show quoted text – Hi Mel!  I have until Sept 24 to get paid 100% salary.  I think you can be out up to six weeks without risk of losing your job position (Although, I doubt that would happen)  I am basically on disability through my job.  I think I am going to call the doctor today and ask her to call the disability leave people to approve me for the rest of this week and next.  I just really want to start feeling good before I return, because I’m afraid If I go back too soon it’s just going to aggravate my Crohn’s. Thanks for your thoughts.  I know I will get through this.. I just feel like there is nothing left to do to help me and am so afraid I am going to lose my job.  (Although, my boss has been GREAT! I’m so lucky I have him.  If I had my previous boss, I would have already lost my job) I also feel so guilty sitting at home while my boyfriend goes to work. I don’t think he realized I was sick yesterday when I told him ( I guess he thought I just didn’t feel like going to work).  I told him I wasn’t going to work and his response was "Whatever".  Today, I once again told him I wasn’t going and he was very companionate.  So, we will see… Anyway, thanks!!! Marlena Hi Marlena, don’t rush back to work. I don’t know your financial background, and I DEFINITELY know how hard it is surviving on disability, but pushing yourself when ill could make matters worse. I was off for 2 years before I felt better, and even now I only work part-time, but rather that than become ill again. My Crohns always lets me know if I have overdone it. It’s horrible being ill especially with IBD, I can’t make you better sorry, but there will be a time when you can look back and think "how the hell did I manage" Mel Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Hi Mel!  I have until Sept 24 to get paid 100% salary.  I think you can be out up to six weeks without risk of losing your job position (Although, I doubt that would happen)  I am basically on disability through my job.  I think I am going to call the doctor today and ask her to call the disability leave people to approve me for the rest of this week and next.  I just really want to start feeling good before I return, because I’m afraid If I go back too soon it’s just going to aggravate my Crohn’s. Thanks for your thoughts.  I know I will get through this.. I just feel like there is nothing left to do to help me and am so afraid I am going to lose my job.  (Although, my boss has been GREAT! I’m so lucky I have him.  If I had my previous boss, I would have already lost my job) I also feel so guilty sitting at home while my boyfriend goes to work. I don’t think he realized I was sick yesterday when I told him ( I guess he thought I just didn’t feel like going to work).  I told him I wasn’t going to work and his response was "Whatever".  Today, I once again told him I wasn’t going and he was very companionate.  So, we will see… Anyway, thanks!!! Marlena – Hide quoted text — Show quoted text -Hi Marlena, don’t rush back to work. I don’t know your financial background, and I DEFINITELY know how hard it is surviving on disability, but pushing yourself when ill could make matters worse. I was off for 2 years before I felt better, and even now I only work part-time, but rather that than become ill again. My Crohns always lets me know if I have overdone it. It’s horrible being ill especially with IBD, I can’t make you better sorry, but there will be a time when you can look back and think "how the hell did I manage" Mel Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

what else is going on besides the remicade?  what kind of crohns do you have?  terimal ileium? crohns colitis? jeff

– Hide quoted text — Show quoted text – Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Hi Marlena, don’t rush back to work. I don’t know your financial background, and I DEFINITELY know how hard it is surviving on disability, but pushing yourself when ill could make matters worse. I was off for 2 years before I felt better, and even now I only work part-time, but rather that than become ill again. My Crohns always lets me know if I have overdone it. It’s horrible being ill especially with IBD, I can’t make you better sorry, but there will be a time when you can look back and think "how the hell did I manage" Mel

– Hide quoted text — Show quoted text – Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Hi all!  Thank you all so much for your support.  I don’t know what I would do without this group… Anyway, I have been out of work for a month on disability leave due to my crohn’s.  I had my first remicade treatment a few weeks ago.  I started back to work on Monday… Yesterday I called in Sick and today don’t feel well, either.  I was up all night with the big D and stomach craps.  I feel terrible for missing work, but thankfully they have been pretty understanding.  I just worry about how long that will last…I wonder if I should just suck it up and go to work anyway. I’m just afraid I’m going to be miserable and running to the bathroom all day. I am going to call the dr this am and see if I can get the SBFT moved to tomorrow.  If everything looks okay, I guess I will see if I can do another Remicade treatment. Is there any hope for me?  I don’t know what to do next.  I’m tired of being sick….Please help… Marlena

Response:

Question:

Hi, My wife was diagnosed with UC a few months ago.  Her physician tried her on Asacol, but unfortunately she has a terrible intolerance to it (cramps, fever, achiness).  She tried it 3 times just to make sure that the reaction was to the drug, not the disease itself.  We were wondering whether anyone else has experienced this (her doctor claims that it is rare) and, if so, what did they do about it. Right now, she is on Prednisone, which helps, but she would really love to get off of it.  Her physician says that he is running out of treatment options for her.  Any advice? Thanks, Ben Somberg AT&T Labs 732 949-6999

Response:

 I am on asacol too, but never had a reaction from it. I do have horrible joint pain, but this is a known side effect of asacol. There are so may treatments for crohn’s. Has your wife ever tried 6-mp, asulfadine, rowasa, or pentasa? She should definitely ask her doc if this meds. would help get off the prednisone and asacol. I know every case of crohn’s is different and sometimes the meds. make you feel better in some ways and worse in others. If the only two options her doc is giving her is the prednisone and asacol, I would definitely get a 2nd opinion or do some research on your own. I wish her the best of luck and I hope she feels better soon! My heart goes out to you and your wife.Nicole

Response:

My doctors said an intollerance was rare too. I wonder what they consider rare. One guy tried me on Pentasa(same medicine different delivery), thought I would die. Incredible flu like synptoms. I left my first GI because he refused to consider my speculation about intollerance. Anyway, I went on Budesonide (entocort) but had to get it from Canada at my own cost because it is not approved here. Good luck finding a suitable medication.

Response:

I had a horrible time on Asacol as well; aches, incredible fatigue, all the good stuff.  My GI let me go on Azathioprine and Prednisone, and now the pred’s down to 10mg every other day, looks like I may finally be off the damned stuff. If your wife’s GI says there aren’t any other treatment options, she needs a new GI.  There are PLENTY of choices out there besides Asacol. Missy

Response:

Joe, I’m glad that my posting was useful, since I came in on this discussion thread a little late.  Thanks for the link to the FDA website.  I will investiage reporting a problem to the FDA.  I also found it helpful to know that I wasn’t the only one who had severe adverse reactions from taking asacol.  I have an appointment to see my GI on July 18th, and plan to show him the results of this discussion thread regarding the adverse reactions that others have had to asacol. I’m sure that he will be very interested and (probably) surprised. For now, imuran seems to be keeping me in remission.  I’m hoping that good eating, sleeping and exercise habits are also contributing to my remission. Take care, Jonathan

Response:

Yes, the mesalalamine medications (Pentasa, Asacol, etc.) were developed because so many people can not tolerate sulfa.  Like you, I have a friend who has been on azulfidine for years, responds well, and continues to use it.  The more drugs available the more likely someone who has not been helped before can help now be helped.  mgbio – Hide quoted text — Show quoted text – I’ve been taking sulfasalazine (azulfidine) for, egads, 20 years off and on. It was the only medicine in this category available back when I was diagnosed, and it’s still the one that works best for me. I’ve tried Asacol and one other one (dipentum maybe) but got lots of gas and discomfort. I agree with my doc that we’ll just keep me on the old standard. Is sulfasalazine not usually prescribed anymore? I know some people are allergic to sulfa. Emmie My daughter was doing great for a while with her UC on Asacol…then she had a major flare up.  She was on 6 Asacol per day.  The GI told us to bump her to 9 per day.  Things got worse….much worse.  I kept telling the GI that I thought the Asacol was causing the problem, but he said that was very slim.  Less than 3% in clinical trials reported their UC becoming worse. Several weeks ago, during the height of her flare up, we called the GI at 10pm to let him know things are still going downhill.  He called in a script for Pred and told us to stop the Asacol while she was on the steroids.  I went to the pharmacy and picked up the Pred that night, but my daughter was asleep by the time I got home.   She hadn’t slept in days so I didn’t wake her.  She was up a few time during the night to go to the bathroom.  By 10am the next morning there was a noticable change in my daughters mood.  I’m not sure how to describe it, but she seemed to be little more "playful".  My wife and I have grown to thank God for these little blessings.  That morning we started her on the Pred regime, however she reported that there was no blood from the previous nights BM’s.  This was less than 12 hours from stopping Asacol.  I thought that was strange because the way her UC presents itself, it never changes in intensity that quickly.  Her condition usually gets worse or better very slowly. I called her GI and told him I really thought it was the Asacol.  Once again he said it was highly unlikely and that he wanted her to slowly get back on Asacol as we weaned her off Pred. Everything was going great on the Pred…normally formed stools…no blood…returning appetite…weight gain…normal life style. Well we got down to 15mg of pred and started her back on Asacol.  The GI wanted to start her out slowly just in case I was right, so he recommended giving her one tablet per day for three days and then go to two for three days….gradually working up to 6 or 9 tablets per day. Well, we never got past one tablet.  Then next morning the cramping returned with blood in her stool.  I told her to stop taking the Asacol, but she already took her morning dose.  The rest of the day was pretty bad for her.  It took 3 days for her to get back to where she was before taking the Asacol. The GI is now convinced that my daughter is one of the unfortunate 3% that can’t take Asacol. Is there anyone out there who is in the same boat? Joe

Response:

Joe, I have Crohn’s disease and I’m also intolerant to asacol.  My (bad) experience with asacol was in 1999, when I was definitely diagnosed (at age 48) as having crohn’s disease. I’m glad that you were able to pinpoint your daughter’s intolerance to the asacol.  I also experienced major problems with asacol and thought that I was alomost the only one in the world,who had severe side effects from asacol.  Looking back on my  history, I’m thinking that an entire surgery might have been prevented, if I hadn’t taken the asacol.  The docter prescribed it as an after thought, after I complained about stomach discomfort.  At any rate, I started taking the asacol at the same time I started taking the Cipro.  Within   only 24 hours my symptoms became dramatically worse.  I can remember how much worse my fevers became.  Everyone I spoke to seemed to think that I was probably having a bad reaction to the cipro.  From June 1999 to September 1999,  I was in denial that I had crohns, until a another new doctor convinced  me that I had Crohn’s Disease and he prescribed asacol, which I took.  Again, within 24 hours I developed fevers, seeping/bleeding from my bottom, etc.  This time though, I only took asacol (no anti-biotics or other meds!).  So I reallized that the problems that I had blamed cipro for, were actually caused by aaacol. I really like my current doctor.  He will only prescribe one medication at a time and gradually step it up.  I am currently in (medicated) remission.   Prednisone is the first medication to actually work for me and it worked like magic to say the least. After that the ‘bridge’ treatment plan was used – remicated followed by imuran.  (the remicade lasts a few months and the imuran takes a few months to be effective)  I take 150 mg of imuran per day (2.0 mg/kg). I sincerely wish the best for both you and your daughter. Jonathan

Response:

Joe, …I also experienced major problems with asacol and thought that I was alomost the only one in the world,who had severe side effects from asacol.

Jonathan,    Thanks for the post….I don’t know how many people are on this list, but so far there have been a lot of people who have had adverse reactions to Asacol.   I compiled everyones post into one document and showed it to my daughters’ GI.  He was very shocked.  He also ask me if I would go to the FDA website and fill out the form to report a problem with the use of the drug.  He plans on filling out the physician form. According to the GI, people fail to document and report these findings. For thise interested in filing a report, here is the link: http://www.fda.gov/opacom/backgrounders/problem.html Thank you to all who responded.  I can’t tell you how important it is to connect with people who have had the same experiences. Thank you! Joe

Response:

I’ve had pan-colitis since 1998.  Asacol seems to make my bleeding and uc symptoms worse so I avoid it.  Imuran and (when I have to) prednisone are the only things I’ve tried so far that work.  Of course the sides on prednisone are horrible  - imuran is awesome for me!

Response:

I’ve been on Asacol since 1995 and have not had negative reactions. Guess I am one of the lucky ones. – Hide quoted text — Show quoted text – Joe, …I also experienced major problems with asacol and thought that I was alomost the only one in the world,who had severe side effects from asacol. Jonathan,   Thanks for the post….I don’t know how many people are on this list, but so far there have been a lot of people who have had adverse reactions to Asacol.   I compiled everyones post into one document and showed it to my daughters’ GI.  He was very shocked.  He also ask me if I would go to the FDA website and fill out the form to report a problem with the use of the drug.  He plans on filling out the physician form. According to the GI, people fail to document and report these findings. For thise interested in filing a report, here is the link: http://www.fda.gov/opacom/backgrounders/problem.html Thank you to all who responded.  I can’t tell you how important it is to connect with people who have had the same experiences. Thank you! Joe

Response:

I am glad to see that I am not the only one who has encountered this problem – and the doctors never really accept it – always make me try again. I have had no luck with Pentasa, Asacal, Rowasa or Sulfasaladine. I really think they only worsened the problem. Does anyone know, could this be because of an aspirin component? I think that at least Asacal, and Pentasa are aspirin based? I haven’t heard of the Azathioprine… is that 5ASA? What about budesonide? Is that available as pill form too? Also, is dipentium 5asa? aspirin based? Sorry to ask so many questions in someone else’s post… I am having a flare now and trying a new doctor who of course, wants me to try 5asa again.. but I have a newborn who isn’t well so I can not afford to risk getting even worse and am looking for other options that my doctor might be more likely to agree too.. Thanks – CHristine

Response:

Christine, The 5 ASA medications are very closely related to aspirin.  Chemically there are some differences as aspirin is a no no for IBD’ers and the 5ASA medications are used extensively in CD treatment. I believe Azathioprine is the generic name for Immuran, an immunomodulator.   You can learn more about it at: http://www.rxlist.com/cgi/generic/azathioprine.htm.  Budesonide is a form of steroids.  It is supposed to have less of a side effect profile than prednisone but it is still a steroid and potentially can have the same long term side effects.   HTH, good luck!  mgbio – Hide quoted text — Show quoted text – I am glad to see that I am not the only one who has encountered this problem – and the doctors never really accept it – always make me try again. I have had no luck with Pentasa, Asacal, Rowasa or Sulfasaladine. I really think they only worsened the problem. Does anyone know, could this be because of an aspirin component? I think that at least Asacal, and Pentasa are aspirin based? I haven’t heard of the Azathioprine… is that 5ASA? What about budesonide? Is that available as pill form too? Also, is dipentium 5asa? aspirin based? Sorry to ask so many questions in someone else’s post… I am having a flare now and trying a new doctor who of course, wants me to try 5asa again.. but I have a newborn who isn’t well so I can not afford to risk getting even worse and am looking for other options that my doctor might be more likely to agree too.. Thanks – CHristine

Response:

Many people suffer the ill effects of 5 asa meds(and cannot take them)  such that they are no longer the first line of defense. Your doctor should have been aware that the incidence is much higher than any published 3% figure.

Response:

Joe, I’d think seriously about the 6MP your GI recommended.  Pred causes major complications.  That, and your daughter’s young age, means switching to an immunomodulator will help her avoid the long term side effects.  Having no symptoms is probably a good time to switch her since it does take time to build up to a therapeutic level.  I have had good success with 6MP in controlling my fistulizing CD.  Good luck!  mgbio – Hide quoted text — Show quoted text – Hi Paul….my daughter is 15.  Right now she is off Pred regiment and is without symtoms.  The doctor is a little puzzled by this since she is not on any meds right now.  He mentioned that he wanted her on some maintnenance regiment and mentioned 6mp, but that takes 3 months to kick in.   I think we are just going to coast for a little to give her body a break from the drugs and see what happens.   Right now its summer time and she is enjoying the remission.  She is eating anything and everything with no problems.  She needs another 10-15lbs to get her back to a good weight, but she’s getting there. I have to tell you, I was pretty scared for a while there.  She was going down pretty fast.  That Predazone (sp-?) worked like magic for her.  I’m taking her back to the GI in a week after he comes back from vacation.  I really like this guy….he always answers our calls or calls back in a timely fashion.  Plus he is willing to work with us on getting things back on track.  I like that. P.S….this group is a wealth of information and support….thank you all for your input.  It means a great deal to me to have this outlet. Hi Joe, Welcome to the group. I’m sorry to hear about your daughter. I first took Asacol for my UC when I was diagnosed 2

Question:

That would make sense since the weather keeps going back and forth.  It just can’t make up it’s mind if it’s going to be spring or winter.  : ) — Take Care, Sherry

It could be this weather. Reesie

– Hide quoted text — Show quoted text – No I don’t think so.  I wonder if Cipro can cause headaches. — Take Care, Sherry Could it be sinuses?  UM MOM Susan Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Susan, Avelox is the last antibiotic I took, remember? No one had heard of it at the time, about a month or so ago I did 3 weeks of it?  I had no side effects.  And, I can’t take Cipro because of the side effects it gives me. Reesie

– Hide quoted text — Show quoted text – Probably, the one I am on Avelox I think it is called can cause the norm in the readers.  Headaches, stomach pains, possible rashes and so on.  UM MOM Susan No I don’t think so.  I wonder if Cipro can cause headaches. — Take Care, Sherry Could it be sinuses?  UM MOM Susan Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head. The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in. You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

It could be this weather. Reesie

– Hide quoted text — Show quoted text – No I don’t think so.  I wonder if Cipro can cause headaches. — Take Care, Sherry Could it be sinuses?  UM MOM Susan Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Probably, the one I am on Avelox I think it is called can cause the norm in the readers.  Headaches, stomach pains, possible rashes and so on.  UM MOM Susan

– Hide quoted text — Show quoted text – No I don’t think so.  I wonder if Cipro can cause headaches. — Take Care, Sherry Could it be sinuses?  UM MOM Susan Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

congratulations Linda, hope things remain stable for you. Reesie

– Hide quoted text — Show quoted text – Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

No I don’t think so.  I wonder if Cipro can cause headaches. — Take Care, Sherry

Could it be sinuses?  UM MOM Susan

– Hide quoted text — Show quoted text – Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Could it be sinuses?  UM MOM Susan

– Hide quoted text — Show quoted text – Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Congradulations Linda.    Now remember to continue to go slow.  UM MOM Susan

– Hide quoted text — Show quoted text – Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

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Linda, Pred gives me headaches.  Especially when tapering off. Staci

Response:

Then why am I getting headaches???  I’m not on pred and I’ve had a headache most of the week. : ) — Take Care, Sherry

Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda

– Hide quoted text — Show quoted text – Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

I’ve been having bad headaches daily, too, Linda, and the docs said it’s the Pred.  My blood pressure is still low, but higher than normal for me.  Yes, Pred can cause high blood pressure.  HTH. Reesie

– Hide quoted text — Show quoted text – Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Me too, but no problems with Asacol.         Elizabeth – Hide quoted text — Show quoted text – Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Thank you Odie – Happy Easter to you also    It seems like headaches on pred are "normal".  I dropped down to 20 mg today Hugs,  Linda

– Hide quoted text — Show quoted text – Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

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Reesie – thanks for the info.  They’re annoying, that’s for sure and Tylenol doesn’t help me.  I’ve had to take ibuprofen, but no more than one a day which doesn’t seem to bother my belly. Hugs,  Linda

– Hide quoted text — Show quoted text – I’ve been having bad headaches daily, too, Linda, and the docs said it’s the Pred.  My blood pressure is still low, but higher than normal for me. Yes, Pred can cause high blood pressure.  HTH. Reesie Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Hi Linda…I had headaches with pred…. Get Better & Happy Easter! Odie

– Hide quoted text — Show quoted text – Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Welcome Omeed to the ng…there are lots of wonderful folks here that will do their best to help you. Asacol has a tendency to upset stomachs…even mine and I have a tough tummy!  Ask you doctor about Pentasa…I am on that now and it does not have any effects on me. Have you asked your doc about the cramps?  The reason I am asking is because Prednisone did the same thing with me.  I guess it depleted my calcium and cause "charlie horses" all the time….eat a banana a day…that may help! I wish I could help more…sorry! Odie

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and experience here. I have had some bad reactions to using Asacol and I was wondering of any one else has had similar experiences, here is a brief description of what happened.

I’ve been taking Asacol for over 4 years now.  I’ve tried Sulfasalazine but I didn’t like the sulfur.  I don’t have any problems at all with the Asacol, and before you rule it out I’d try to be sure it’s the problem.  My CD problems came and went, and it could be a coincidence with your problems that you’re starting and stopping Asacol. Michael

Response:

I’ve had a problem with all the ASA drugs. Around October of last year a new drug called Entocort was approved. I’ve had very good results with it.

– Hide quoted text — Show quoted text – Hello all, I am new to this news group but I can see that there is a world of knowledge and experience here. I have had some bad reactions to using Asacol and I was wondering of any one else has had similar experiences, here is a brief description of what happened. Stopped smoking July last year, once the nicotine patch program finished, the attacks started in Nov and Dec, I was diagnosed as having UC in Jan this year, the doctor prescribed 30mg prednisone and Asacol 800mg three times a day. I started the treatment reducing 5mg of the steroid every week, every thing was going okay until I got to the end of the steroids and then another attack episode stared, this time it included severe stomach pain and generally worse than the first attack. I stopped the Asacol as I thought it was causing the problem contrary to what my consultant thought. He put me back on the prednisone this time 40mg a day to sort out the problem and to try to start the Asacol again once things have calmed down, that was couple of weeks ago when I tried Asacol again for three days before it set off another massive attack and this time even worse a stomach pain than the last time, I stopped it immediately, things have started to calm down again since beginning of this week, but still feel tightness in my chest and also seems to have developed cramps in my feet recently which stops me from doing my exercise routine. Here are my questions; Has any one had a similar experience with Asacol, if so what alternative medicine was used instead? What about other 5-ASA based medication, would they have similar effects? I was very close to going into the Accident and Emergency, what would they do if one walks in with these symptoms? My consultant was suggesting using Azathioprine, if the Asacol was not suitable (which seems it is not), any side effects of Azathioprine I should look out for? I am keen to slowly reduce the steroids and then try it without any medicine given that out of the 3 attacks I have had 2 are related to the medicine it self, so any opinions regarding that and what natural medication I could use. I will be grateful for any replies. Many Thanks, Omeed.

Response:

I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!)

– Hide quoted text — Show quoted text – I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Has anyone had headaches with Imuran or Prednisone?  I’ve been having daily headaches for about a month now – right on the top of my head.  The last few times at the drs, my blood pressure has been up, but only a little – around 130/90, but am wondering if one of  these two meds could be causing the headaches and higher bp. Hugs,  Linda

– Hide quoted text — Show quoted text – I also had problems with headaches while on Asacol. Rebecca (Hi Tracy!!) I have never had any side effects of Asacol unless I was on very high doses (4800 mg a day)… and that was terrible headaches.  I do take Aziathropine (imuran).  That can take a month or two to really kick in.  You will need regular blood tests to check your liver function and to check for infection. It can make you very susceptible to illnesses, since it suppresses your immune system.  Good luck. Be well- Tracy CD class of ‘98 my homepage: http://home.talkcity.com/ParadiseDr/goodboie/index.html  : )  smile – it makes people wonder what you’re up to!

Response:

Hello all, I am new to this news group but I can see that there is a world of knowledge and experience here. I have had some bad reactions to using Asacol and I was wondering of any one else has had similar experiences, here is a brief description of what happened. Stopped smoking July last year, once the nicotine patch program finished, the attacks started in Nov and Dec, I was diagnosed as having UC in Jan this year, the doctor prescribed 30mg prednisone and Asacol 800mg three times a day. I started the treatment reducing 5mg of the steroid every week, every thing was going okay until I got to the end of the steroids and then another attack episode stared, this time it included severe stomach pain and generally worse than the first attack. I stopped the Asacol as I thought it was causing the problem contrary to what my consultant thought. He put me back on the prednisone this time 40mg a day to sort out the problem and to try to start the Asacol again once things have calmed down, that was couple of weeks ago when I tried Asacol again for three days before it set off another massive attack and this time even worse a stomach pain than the last time, I stopped it immediately, things have started to calm down again since beginning of this week, but still feel tightness in my chest and also seems to have developed cramps in my feet recently which stops me from doing my exercise routine. Here are my questions; Has any one had a similar experience with Asacol, if so what alternative medicine was used instead? What about other 5-ASA based medication, would they have similar effects? I was very close to going into the Accident and Emergency, what would they do if one walks in with these symptoms? My consultant was suggesting using Azathioprine, if the Asacol was not suitable (which seems it is not), any side effects of Azathioprine I should look out for? I am keen to slowly reduce the steroids and then try it without any medicine given that out of the 3 attacks I have had 2 are related to the medicine it self, so any opinions regarding that and what natural medication I could use. I will be grateful for any replies. Many Thanks, Omeed.

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made me so very nausuas (sp) and anorexic … food did not look good nor taste

Response:

I had an nearly identical experience. I quit smoking and was into UC within 6 months. I was put on asacol and improved for a short period.  Then I noticed what I would call subtle differences in the return of symptoms. Dr. wanted to put me on pred. but I didn’t fill the prescription and I quit the asacol and felt better within two days. However, within two months I was experiencing symptoms again.  I went to a new Dr. and he prescribed Pentasa (same drug different delivery) and I got violently ill within hours, off again then on, and sick again.  Bottom line is that I can not tolerate either drug.  I was subsequently put on Entocort which has been great for me.

Response:

<snip Here are my questions; Has any one had a similar experience with Asacol, if so what alternative medicine was used instead? What about other 5-ASA based medication, would they have similar effects? I was very close to going into the Accident and Emergency, what would they do if one walks in with these symptoms? My consultant was suggesting using Azathioprine, if the Asacol was not suitable (which seems it is not), any side effects of Azathioprine I should look out for? I am keen to slowly reduce the steroids and then try it without any medicine given that out of the 3 attacks I have had 2 are related to the medicine it self, so any opinions regarding that and what natural medication I could use.

Here’s a good link with an extensive listing of most of the therapeutic options available for IBD. http://ibd.patientcommunity.com/features/treatments.cfm From what I understand asacol is the best tolerated of the aminosalicylates. There are other 5-aminosalicylates but most of them have a sulfapyridine component which some people can have negative reactions to. As far as azathioprine goes it is a fairly serious immunosuppressant which requires relatively close monitoring(i.e. regular blood work) and there is the risk of pancreatitis and bone marrow suppression.  It also takes a long time to work…anywhere from 6 weeks to 6 months in some cases.    The good news is that is effective at eliminating the use of steroids in otherwise refractory patients and can induce long term remission. Natural medications, none of which are really proven, may include probiotics, fish oils(omega-3 fatty acids) and probably a few others that people have tried here and could give you more information. – Hide quoted text — Show quoted text –

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Question:

Jennifer,I got lots of info from my question, and your response did help. I now believe it was tthe pred that is causing the hair loss.Hopefully I will be off soon!Thanks Burr

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I had a loss of hair on my head while on Prednisone … but a growth of hair elsewhere !!

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Thank you Maryjo for sharing. I thought I was the only one. Furr on my belly and chin and longer&darker on my forearms.

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It does go away … !!!!   Thank you Maryjo for sharing. I thought I was the only one. Furr on my belly and chin and longer&darker on my forearms.  

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When I first started taking Asacol, I lost hair for about 4 months. (Hair loss is listed as one of the side effects of Asacol.)  I never lost any while on pred though. ~~~~Pat CD Class of 98

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Hi Burr: I had the same thing happen to me. My hair finally stopped falling out after 4-6 months of being off the prednisone. Rebecca

– Hide quoted text — Show quoted text – Hi,I’ve been taking Asacol and pred. for 6 months now, and have lost a noticable amount of hair! I think its the combination of the 2 drugs? Is anyone else having this problem? Im wondering if it could be my body is not absorbing enough nutrients, and hair loss is a symptom of that?I have UC and this is all new to me!Any imput would be welcome.                           Thanks  Burr

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I had this problem too…I think it’s the Asacol.

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I lost my hair when I was on Pentasa (2 and a half years). It stopped falling progressively when I stooped Pentasa. – Hide quoted text — Show quoted text – Hi,I’ve been taking Asacol and pred. for 6 months now, and have lost a noticable amount of hair! I think its the combination of the 2 drugs? Is anyone else having this problem? Im wondering if it could be my body is not absorbing enough nutrients, and hair loss is a symptom of that?I have UC and this is all new to me!Any imput would be welcome.                           Thanks  Burr

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Thank you for the info., it puts me more at ease knowing that this is not my imagination. I thought it was the Asacol, but since I’ve gotten these responses, I think its more likely the pred.!                       BURR

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Hi Pam,Thank you for your response! I now believe that pred. is the culprit! I however have very thin hair anyway and it really makes a difference in my well being,however it its good news that it will come back.Thanks Burr

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Hi Burr, When I was on the prednisone, flagyl and asacol at the same time I lost a signifigant amount of hair.  My hair is very thick and very long.  Since I stopped the flagyl and prednisone the hair loss has stopped. Pam Virginia

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I also felt like I was losing a lot of hair when I was on asacol and pred.  I don’t know which one did it to me; I’m suspecting it was both.  I also noticed the hair loss would be temporarily worse when I was weaning off the pred (whenever I changed doses, that is).  The good news is, even though I was pulling pretty decent clumps of hair off my head, I never got any bald spots.  And the hairloss did stop eventually. I’m now off both of those meds. Hope this helps Jennifer – Hide quoted text — Show quoted text – Hi,I’ve been taking Asacol and pred. for 6 months now, and have lost a noticable amount of hair! I think its the combination of the 2 drugs? Is anyone else having this problem? Im wondering if it could be my body is not absorbing enough nutrients, and hair loss is a symptom of that?I have UC and this is all new to me!Any imput would be welcome.                           Thanks  Burr

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I was on prednisone for about 13 months, and whenever I brushed my hair, I had large amounts come out and it got very thin. I am also on Pentasa, and I believe hair loss is a side effect of that, but since I’ve been off of the prednisone (since December), the amount of hair that comes out now is MUCH MUCH less.  Hi,I’ve been taking Asacol and pred. for 6 months now, and have lost a – Hide quoted text — Show quoted text -noticable amount of hair! I think its the combination of the 2 drugs? Is anyone else having this problem? Im wondering if it could be my body is not absorbing enough nutrients, and hair loss is a symptom of that?I have UC and this is all new to me!Any imput would be welcome.                          Thanks  Burr

Response:

Burr, I have been on both of those drugs (Pentasa and Prednisone). I did not lose any hair. When I am on the Pred, my hair actually grows more. Mark CD c/o 88 – Hide quoted text — Show quoted text – Hi,I’ve been taking Asacol and pred. for 6 months now, and have lost a noticable amount of hair! I think its the combination of the 2 drugs? Is anyone else having this problem? Im wondering if it could be my body is not absorbing enough nutrients, and hair loss is a symptom of that?I have UC and this is all new to me!Any imput would be welcome.                          Thanks  Burr

Response:

Hi,I’ve been taking Asacol and pred. for 6 months now, and have lost a noticable amount of hair! I think its the combination of the 2 drugs? Is anyone else having this problem? Im wondering if it could be my body is not absorbing enough nutrients, and hair loss is a symptom of that?I have UC and this is all new to me!Any imput would be welcome.                                                                     Thanks  Burr

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Question:

I have been taking Pentasa for about 5 or 6 years. Sometime 16/day and sometimes 8/day. But, I also use a Rowasa suppository every night. I also take 1 Lomotil and 1 Librax every morning. I also use a tablespoon of Citrucel in about 4 oz. of cranapple juice every morning. And, I take 3 St. Johnsworts per day. After several years of cronic and severe proctitis, I am doing very well on the above regimen. I know it seems like a lot to take, but believe me, it’s better than the mucous and the trips to the bathroom and the urgency. No side effects!!! at all. Ed

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I too can not tolerate Pentasa, and after initial help Asacol created symptoms similar to my UC.  I had to discontinue both.

Response:

Asacol seemed to help me a lot for about 3-4 months. Then my symptoms came back and also I got shingles at the same time right in my lower left abdominal area which really scared me and was awfully painful. Luckily the shingles cleared up. I have also started getting some reflux, I believe, and was not aware that it may be the asacol. I have noticed that since I started taking a quality multi-mineral that I have had some improvement. I do take a lot of other vitamins as well and try to avoid certain foods such as spicy, caffeine etc. That helps too. – Hide quoted text — Show quoted text – Has anyone here experienced a worsening of symptoms with mesalamine (Pentasa & Asacol).  I seem to be experiencing much more bloating and pain in my ribs since beginning the Pentasa.  I am beginning to wonder if it’s really worth taking 16 pills a day to be in just as much (if not more) pain than I was before I started the meds!  Just wondering if I should continue it anyway to help with the inflammation? Any suggestions or comments? * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

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I began taking 16tablets a day of Pentasa and have slowly (it took a year) decreased dosage to 8 pills a day. Although I do suffer from some side affects, (gas, bloating,) it beats the heck out of major flare ups. Talk to your doctor if these symptoms are just until body gets used to drug, or consider changing drugs. Hope all works out for you.  Linda CD’99

Response:

Asacol helps a lot with my diarrhea, but leaves me with lots of bloating, gas and reflux- some tradeoff, huh?  Those are the most common side effects of asacol (along with headache), and someone here recently said their dr said asacol can cause delayed gastric emptying, which would certainly explain all this.

Response:

Has anyone here experienced a worsening of symptoms with mesalamine (Pentasa & Asacol).  I seem to be experiencing much more bloating and pain in my ribs since beginning the Pentasa.  I am beginning to wonder if it’s really worth taking 16 pills a day to be in just as much (if not more) pain than I was before I started the meds!  Just wondering if I should continue it anyway to help with the inflammation? Any suggestions or comments?

Donna, When I took Asacol, it gave me terrible secretory D, which at first I didn’t realize because my D was so bad when I started taking it anyway. I also got a pain right in my upper abdomen where my stomach is. I stopped taking it after 2 weeks, and all of my symptoms (D, bleeding, etc) cleared up completely within 2 days. My doctor still didn’t think it was the Asacol, so I switched GIs. The next one told me to take just one tablet per day for a few days, and try to build up the dose. After one tablet, the secretory D started up again. I have had much better luck with sulfasalazine, after building up the dose very gradually. The doctors can’t explain why I tolerate the sulfasalazine, (which also contains 5-ASA), but not the Asacol. Janice

Response:

I got off the pentasa because it was giving me the big D and went back to asacol. Lynn in Fl Has anyone here experienced a worsening of symptoms with mesalamine (Pentasa & Asacol).  I seem to be experiencing much more bloating and pain in my ribs since beginning the Pentasa.  I am beginning to wonder if it’s really worth taking 16 pills a day to be in just as much (if not more) pain than I was before I started the meds!  Just wondering if I should continue it anyway to help with the inflammation? Any suggestions or comments? * Sent from AltaVista http://www.altavista.com Where you can also find

related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

Has anyone here experienced a worsening of symptoms with mesalamine (Pentasa & Asacol).  I seem to be experiencing much more bloating and pain in my ribs since beginning the Pentasa.  I am beginning to wonder if it’s really worth taking 16 pills a day to be in just as much (if not more) pain than I was before I started the meds!  Just wondering if I should continue it anyway to help with the inflammation? Any suggestions or comments? * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

Question:

<<was wondering if anyone has had problems with Asacol Asacol worked for me for 4 days, then after two weeks i got really bad flares. I also had internal bleeding consistantly while on asacol, I almost never have gotten bleeding longer than a week, except for asacol. I also bloated like never before. No drug works on everybody FORREST

Response:

I wish those of you who were on Asacol and missed your meds for a while would talk to my son. He is 16 and has decided on his own, that he no longer needs to take his medicine. He has CD and was resectioned about 18 months ago. He says he feels okay and sees no point in taking his meds. We have begged, pleaded and bribed him to take his medicine. He will only take it we constantly remind him. Then we are told we are nagging. His doctor has warned him of the consequences… Big deal he says. We are at to the point of taking away his driver’s license and restricting him from all activities. We are going crazy. Linda

Response:

Maybe he just needs to find out for himself … I did that, too, at about 25. I was fine for about six months and then whammo. At 16 of course he knows everything, so let him find out … Sorry I can’t be more helpful. But my gut reaction (if you will excuse the expression) is to let him go ahead with it and suffer the consequences. Be well, Hadass – Hide quoted text — Show quoted text – I wish those of you who were on Asacol and missed your meds for a while would talk to my son. He is 16 and has decided on his own, that he no longer needs to take his medicine. He has CD and was resectioned about 18 months ago. He says he feels okay and sees no point in taking his meds. We have begged, pleaded and bribed him to take his medicine. He will only take it we constantly remind him. Then we are told we are nagging. His doctor has warned him of the consequences… Big deal he says. We are at to the point of taking away his driver’s license and restricting him from all activities. We are going crazy. Linda

– Dr. Hadass Eviatar   (XX)                       National Research Council of Canada             Phone: (204) 984 – 4535 Institute for Biodiagnostics                    Fax:   (204) 984 – 5472 435 Ellice Avenue, Winnipeg, MB, R3B 1Y6       http://www.ibd.nrc.ca/~eviatar    Obliglatory disclaimer: NRC wouldn’t dream of saying a thing like that.

Response:

- Hide quoted text — Show quoted text – I was wondering if anyone has had problems with Asacol.  For the last 4 or 5 months, I’ve been bloating, had a lot of gas, constipated, "stuff" wasn’t moving through me (it would get caught and my intestines would bulge, I’d hold my breath until something let loose, and then my bowels would gurgle and the bulge would go down).  I had an upper GI series with small bowel follow-through, which showed a very narrowed section.  Doctor put me on prednisone 40mg, which helped at the higher dose, but as I decreased things got worse again.  So doctor started talking surgery, and I was ready to agree. For some reason, I did some research on Asacol on the Internet.  I’d found information on Prednisone and Imuran before, but not Asacol.  Well, what I found this time was that Asacol can "exacerbate" the CD symptoms.  So I stopped taking Asacol.  I figured if not taking it didn’t change anything, I would start taking it again.  On the second day, I felt normal. Absolutely no problems.  Today is the fourth day, and my appetite is great, I’m sleeping well, no pains, lots of energy.  I’m going to call the doctor today and tell him what I did. I’d been on Asacol for 2 years.  Has anyone else had these problems? Brenda — Brenda Best Durhamville, NY, USA (halfway between Syracuse and Utica)

Brenda,         I had the same problems with Asacol.  My GI doctor told me to keep taking it and the symptoms would go away. Well, they didn’t.  I finally went to see my PCP because of some sinus problems and ask him about taking pentasa for my crohns.  He gave me a prescription for them and I have been symptom free for about a month now and it has been great.  No diarrhea, no gas, no nothing.  It’s like I don’t have crohns anymore.  I still watch what I eat though.  Maybe you should ask your doctor about taking pentasa.  It has really worked great for me. Peanut

Response:

I know where you are coming from. I was on asacol for quite awhile. It was working well for me but I did have a lot of bulging. Then I screwed up my meds and had a flareup big time. I figured that I was feeling great without them why take them at all. Well a couple of months later I had a major flareup. No symptoms. I even had a normal BM that morning. that evening I hemmoraged and lost half of my blood. I was put on Steriods (hell on earth) and then when I was healthy enough to come off them I was put on Pentasa. I have been on Pentasa for 4 1/2 years and I feel great. I have really no side effects. Once in awhile a cramp, very minor. But other then that I feel great. I take 4gs a day and won’t screw this up. I am also on a minimal irration diet and that really helps. I hope that you feel better and take care of yourself. LIZ

Response:

I’ve been on Asacol for about 4 months now. I started with 1 tablet 3 times a day and increased it to 2 tablets 3 times a day and I still had problems. I ended up taking 2 tablets 4 times a day for a while but my doctor checked the literature and couldn’t find anything recommending more than 6 tablets a day. Last week I cut back to the 6 tablets a day and I’ve really improved! I had three days in a row where I had an appetite and it was great. I’ve had a little pain since but it has passed quickly. You might want to try cutting down the Asacol a little at a time – you may find a comfort level. Of course as monumental as it is for to have an appetite for 3 days in a row, I realize that tomorrow I may feel crappy again. Hope you find a good balance and start to feel better. – Hide quoted text — Show quoted text – I was wondering if anyone has had problems with Asacol.  For the last 4 or 5 months, I’ve been bloating, had a lot of gas, constipated, "stuff" wasn’t moving through me (it would get caught and my intestines would bulge, I’d hold my breath until something let loose, and then my bowels would gurgle and the bulge would go down).  I had an upper GI series with small bowel follow-through, which showed a very narrowed section.  Doctor put me on prednisone 40mg, which helped at the higher dose, but as I decreased things got worse again.  So doctor started talking surgery, and I was ready to agree. For some reason, I did some research on Asacol on the Internet.  I’d found information on Prednisone and Imuran before, but not Asacol.  Well, what I found this time was that Asacol can "exacerbate" the CD symptoms.  So I stopped taking Asacol.  I figured if not taking it didn’t change anything, I would start taking it again.  On the second day, I felt normal. Absolutely no problems.  Today is the fourth day, and my appetite is great, I’m sleeping well, no pains, lots of energy.  I’m going to call the doctor today and tell him what I did. I’d been on Asacol for 2 years.  Has anyone else had these problems? Brenda — Brenda Best Durhamville, NY, USA (halfway between Syracuse and Utica)

Response:

I’ve said it before, and I’ll say it again.  Even though most "experts" say there are very few side effects to Asacol, there are some.   And they can be doozies. Asacol made my hair fall out a bit, yes.  It also made me so fatigued I could barely get around and couldn’t drive myself anywhere.  It gave me painfully itchy rashes and bumps on my arms and legs. Then I was on Prednisone, and got enormously bloated and puffy. Now, I’m on Imuran.   I’ve lost almost 40 pounds this year, and I feel better than I have in years.  Sure, there’s a chance of side effects, but I get my blood checked often.  I’d rather be on something with a 1 in 1,000 chance of messing me up than being on Pred or Asa, both of which have a 1 in 1 chance of messing me up. Doc

Response:

I just anted to add to your discussion.  I, too, seem to be having an increased number of headaches.  I just got my Asacol Rx upped from 8 pills to 12 pills per day.  I hope my headaches don’t increase as well.  I seem to be taking a lot of ALEVE to cure my headaches. Dan

Hi folks –  FWIW: As I was stepped up to my current level of 10/day, my headaches increased too. I discovered that for me, drinking large amounts of water removes the headache and the need to further medicate. Be Well. Peace John Kenney Boston,  MA   USA – Hide quoted text — Show quoted text – Hi Amber: Yeah, I am wondering the same thing. My doc says that there are two answers people have for the question "when was the last time you took something for a headache?" one group says "I don’t remember, must have been a few years ago" or those who look at their watch! <G For most of my life I was in the first category – now it seems I am popping meds all the time for my headaches. They *did* seem to start around the time I started taking Asacol. That is why I want to try and get off of it. . . . VERY FRUSTRATING!!! Rebecca Hi Rebecca, I have found the past week or so extreme headaches….close to migraines but not the same.  i had stopped taking asacol(I hate medicine!!!!) but the docs wonder if they are connected?  I just started back on it a week or two ago??? coincedence or I don’t know?? amber

Response:

Thank Howard! I took 16 pills per day pentasa and they did not seem to help but my doctor said Asacol may work better so I am trying that???/ WHo Knows??? I think my doctors feel it is all in my head! Amber

Response:

So far Pentasa is the only mesasaline / sulphasalazine drug which I can take without a whole host of ridiculous side effects!  Also the antibiotic ciprofloxacin has been excellent (if you can cope with the drowsiness) – it certainly gets rid of my absesses!!! Catharine * Sent from AltaVista http://www.altavista.com Where you can also find related Web Pages, Images, Audios, Videos, News, and Shopping.  Smart is Beautiful

Response:

I had severe headaches with Dipentum.  Hair loss with Asacol and no problems so far with Pentasa.  I chose to deal with the hair loss, but couldn’t function on the Dipentum, which also caused depression both times I tried it.  All our bodies are different, so I recommend giving every thing a fair shake.  I did find that the hair loss stopped after a while.  Some tiimes the body adjusts.-Lee

Response:

Hi Rebecca, I have found the past week or so extreme headaches….close to migraines but not the same.  i had stopped taking asacol(I hate medicine!!!!) but the docs wonder if they are connected?  I just started back on it a week or two ago??? coincedence or I don’t know?? amber

Response:

I just anted to add to your discussion.  I, too, seem to be having an increased number of headaches.  I just got my Asacol Rx upped from 8 pills to 12 pills per day.  I hope my headaches don’t increase as well.  I seem to be taking a lot of ALEVE to cure my headaches. Dan

– Hide quoted text — Show quoted text – Hi Amber: Yeah, I am wondering the same thing. My doc says that there are two answers people have for the question "when was the last time you took something for a headache?" one group says "I don’t remember, must have been a few years ago" or those who look at their watch! <G For most of my life I was in the first category – now it seems I am popping meds all the time for my headaches. They *did* seem to start around the time I started taking Asacol. That is why I want to try and get off of it. . . . VERY FRUSTRATING!!! Rebecca Hi Rebecca, I have found the past week or so extreme headaches….close to migraines but not the same.  i had stopped taking asacol(I hate medicine!!!!) but the docs wonder if they are connected?  I just started back on it a week or two ago??? coincedence or I don’t know?? amber

Response:

Amber There are several other meds that deliver the same dedication, mesalamine, as Asacol. I have been on Pentasa for about 3 years with no side effects. (To give the other side, Pentasa has been talked about here from time to time, and some people do have problems taking it.) I’m not pushing Pentasa, I’m just saying that there are options that will deliver the same medication. Howard – Hide quoted text — Show quoted text – Hi Rebecca, I have found the past week or so extreme headaches….close to migraines but not the same.  i had stopped taking asacol(I hate medicine!!!!) but the docs wonder if they are connected?  I just started back on it a week or two ago??? coincedence or I don’t know?? amber

Response:

Hi Amber: Yeah, I am wondering the same thing. My doc says that there are two answers people have for the question "when was the last time you took something for a headache?" one group says "I don’t remember, must have been a few years ago" or those who look at their watch! <G For most of my life I was in the first category – now it seems I am popping meds all the time for my headaches. They *did* seem to start around the time I started taking Asacol. That is why I want to try and get off of it. . . . VERY FRUSTRATING!!! Rebecca

– Hide quoted text — Show quoted text – Hi Rebecca, I have found the past week or so extreme headaches….close to migraines but not the same.  i had stopped taking asacol(I hate medicine!!!!) but the docs wonder if they are connected?  I just started back on it a week or two ago??? coincedence or I don’t know?? amber

Response:

Hi all, I think I’m having problems wit the high dose of asacol I’m taking.  Ten days ago the doc up’ed the dose to 12 pills a day (from 6).  Since then, I had a CT scan which indicated a 1cm lesion on my kidney.  I think this may be from the asacol.  My doc still hasn’t returned my calls.  Has anybody else had lesions on their kidneys?  If I lower the dose of asacol, will it go away?  Will I be forced to switch meds? Also, I’ve had lots more hair in my comb after I shower.  My hair doesn’t look or feel thinner (yet) but I can see it in the comb.  Does this stop after a while or should I prepare to go bald?  IS there anything I can do to help out my hair? I’m really worried because I think the side effects of the other drug therapies are worse than mere hair loss.  Welcome all comments.  Thanks. SLO

Response:

Hi Ray: Can’t help you with the kidney question but I have noticed that my hair is thinner since I have been on Asacol (3 years). I also have a fine rash on my face that was never there before. I also have been getting pretty bad headaches since I was dxed with IBD and put on Asacol (perhaps they are age related or stress related or med related or all three). I have been on doses as high as 12 and as low as 4 (flared big time). Are you on prednisone as well? Hair loss is a pretty common side effect of steroid withdrawal and I lost handfuls the last time I came off pred. In the new year I am going to try once again to get off the Asacol. The reason being that I am now taking Questran for the diarrhea and it has helped a lot! I haven’t tried it without taking the Asacol though and I would like to be on the minimum number of drugs that keep me in remission. Good luck, Rebecca

– Hide quoted text — Show quoted text – Hi all, I think I’m having problems wit the high dose of asacol I’m taking.  Ten days ago the doc up’ed the dose to 12 pills a day (from 6).  Since then, I had a CT scan which indicated a 1cm lesion on my kidney.  I think this may be from the asacol.  My doc still hasn’t returned my calls.  Has anybody else had lesions on their kidneys?  If I lower the dose of asacol, will it go away?  Will I be forced to switch meds? Also, I’ve had lots more hair in my comb after I shower.  My hair doesn’t look or feel thinner (yet) but I can see it in the comb.  Does this stop after a while or should I prepare to go bald?  IS there anything I can do to help out my hair? I’m really worried because I think the side effects of the other drug therapies are worse than mere hair loss.  Welcome all comments.  Thanks. SLO

Response:

Question:

Hey y’all, speaking of hair loss, I need some advice.  I have to wear my hair very short because it never takes a curl (even before IBD).  It is very thin and when I use a curling iron it gets frizzy.  My hair loss is near the temples.  I am trying to keep it covered by growing my bangs long but the bangs fall in front of my eyes and won’t lie flat on either side. Does anyone have any suggestions as to hair styles to solve this problem.  I also cannot use any heavy duty sprays, makes me real itchy. Remember I live in a hick town with only one beauty salon and these people are no help really. Thanks for any advice.  I never had this problem before, always had a full head of hair that rarely even needed combing or brushing.  I am at a loss. Eileen

Response:

I don’t know why crohns would be rare in parts of the world where infectious dysentery is common, except that they have more to worry about with the dysentery and just wouldn’t have the time to worry about crohns.  I think dysentery would be a diversion and any good diversion will eliminate crohns. Gail

Response:

eileen, what about a cute short bob hair cut or a pixie cut where it is longer on top but really short everywhere else (kinda like gwenyth paltrow had about 2 years ago)??  just some suggestions.  i am trying to grow my hair out– got a bad layered hair cut 4 months ago and now i want my long hair back (used to be below my butt and now it is above my shoulders)… gunna grow it to mid-back for my wedding!!  -leighann

: Hey y’all, speaking of hair loss, I need some advice.  I have to wear my : hair very short because it never takes a curl (even before IBD).  It is : very thin and when I use a curling iron it gets frizzy.  My hair loss is : near the temples.  I am trying to keep it covered by growing my bangs : long but the bangs fall in front of my eyes and won’t lie flat on either : side. : Does anyone have any suggestions as to hair styles to solve this : problem.  I also cannot use any heavy duty sprays, makes me real itchy. : Remember I live in a hick town with only one beauty salon and these : people are no help really. : Thanks for any advice.  I never had this problem before, always had a : full head of hair that rarely even needed combing or brushing.  I am at : a loss. : Eileen

Response:

it was either dr. stephen steinberg from north shore medical center or dr. david eskreis who spoke about ibd research.  i can’t remember which it was, but my finace thinks it was the second guy.  sorry, i didn’t write down what his affiliation is. also for anyone else interested, i found my notes and the most effective remicade dose was 5mg/kg.   hope this helps.  good luck with your doctor’s appointment tomorrow, leighann

: I find the info. on the dosing of Pentasa interesting. Since going into : "remission" from surgery my Pentasa was lowered.  With my first fistula it : was raised 1g.  I see my GI tomorrow for another fistula and will discuss : this with him.  Do you know who made the statement?  I want to be able to : tell my Dr as much info. as possible. : Thanks! :  mgbio

: hi everyone!  last sunday my finace and i attended a educational meeting : sponsored by the ccfa.  there were five speakers and topics included an : overview of crohns and uc (etiology, etc), extraintestinal manifestations : of ibd, laproscopic surgery, current research, and diet.  it was very : well prepared and informative for people who know very little about ibd. : i knew most of what they talked about (and so did kevin because in the : last year i’ve taught him a lot), but regardless it was worth attending. : i did learn something that i hadn’t known before and i will share it with : all of you in case you are facing a similar situation… if you are : taking pentasa or asacol (or any 5-asa), the dose the gets you into : remission (or feeling better) should be the maintance dose as well. : therefore, i take 4000mg of pentasa a day.  i am starting to feel better : and my old gi doctor said that since i feel better, i should taper my : dose.  the speakers disagreed.  they said that since these drugs are : relatively harmless, the max dose should be maintained.. studies have : shown that doing this prolongs remission (or the decrease of symptoms). : that was interesting to know.  besides for me what is the difference : between 16 pills a day and 12??  nothing really.  oh the other thing i : learned for all of you thinking about remicade… a study done a cedar : sinai showed that the efficacy of the drug decreases at higher doses… : therefore the lowest dose was the most effective (5mg/kg… if i remember : correctly.. but i’d have to look at my notes which i don’t have right : now.. i’ll check on that for anyone who is interested).  anyway, it was : good to go to and it gave me a chance to sign up to do volunteer work for : the ccfa (like my life isn’t busy enough as it is!  i just feel pretty : good right now and i want to cram as much as i can in… i know, i know, : i will probably end up paying for it, but you only live once!).  be well : everyone!!! love,leighann

Response:

really??  i was the one who asked the short girl in the middle who asked the question about whether remicade was fda indicated for non-fistulizing crohns!  wish i knew you were there… could’ve met.  oh well! -leighann

: x-no-archive: yes : Leighann – I was there!  I was the woman sitting in the front row who : asked Dr. Levine (the one wearing the yarmulke) about the demographic : stuff he mentioned (about IBD being rare in parts of the world where : infectious dysentery is common). : — : MG

Response:

I find the info. on the dosing of Pentasa interesting. Since going into "remission" from surgery my Pentasa was lowered.  With my first fistula it was raised 1g.  I see my GI tomorrow for another fistula and will discuss this with him.  Do you know who made the statement?  I want to be able to tell my Dr as much info. as possible. Thanks!  mgbio – Hide quoted text — Show quoted text – hi everyone!  last sunday my finace and i attended a educational meeting sponsored by the ccfa.  there were five speakers and topics included an overview of crohns and uc (etiology, etc), extraintestinal manifestations of ibd, laproscopic surgery, current research, and diet.  it was very well prepared and informative for people who know very little about ibd. i knew most of what they talked about (and so did kevin because in the last year i’ve taught him a lot), but regardless it was worth attending. i did learn something that i hadn’t known before and i will share it with all of you in case you are facing a similar situation… if you are taking pentasa or asacol (or any 5-asa), the dose the gets you into remission (or feeling better) should be the maintance dose as well. therefore, i take 4000mg of pentasa a day.  i am starting to feel better and my old gi doctor said that since i feel better, i should taper my dose.  the speakers disagreed.  they said that since these drugs are relatively harmless, the max dose should be maintained.. studies have shown that doing this prolongs remission (or the decrease of symptoms). that was interesting to know.  besides for me what is the difference between 16 pills a day and 12??  nothing really.  oh the other thing i learned for all of you thinking about remicade… a study done a cedar sinai showed that the efficacy of the drug decreases at higher doses… therefore the lowest dose was the most effective (5mg/kg… if i remember correctly.. but i’d have to look at my notes which i don’t have right now.. i’ll check on that for anyone who is interested).  anyway, it was good to go to and it gave me a chance to sign up to do volunteer work for the ccfa (like my life isn’t busy enough as it is!  i just feel pretty good right now and i want to cram as much as i can in… i know, i know, i will probably end up paying for it, but you only live once!).  be well everyone!!! love,leighann

Response:

me too eileen!  the pentasa seems to be working without any bad effects (although i do see a lot more hair in the drain than i used to, but i’ve got enough to spare!).  hope you are well!! love,leighann

: Leighann, thanks for that info.  That misinformation about tapering : caused my last flare.  Since I don’t seem to be having any side effects : from Asacol I am sticking with it.  I am thankful that I can take it and : that something like that is available. : Eileen

Response:

Thanks very much for the readout on the meeting.  Very interesting about the maintenance dose.  SLO

– Hide quoted text — Show quoted text – hi everyone!  last sunday my finace and i attended a educational meeting sponsored by the ccfa.  there were five speakers and topics included an overview of crohns and uc (etiology, etc), extraintestinal manifestations of ibd, laproscopic surgery, current research, and diet.  it was very well prepared and informative for people who know very little about ibd. i knew most of what they talked about (and so did kevin because in the last year i’ve taught him a lot), but regardless it was worth attending. i did learn something that i hadn’t known before and i will share it with all of you in case you are facing a similar situation… if you are taking pentasa or asacol (or any 5-asa), the dose the gets you into remission (or feeling better) should be the maintance dose as well. therefore, i take 4000mg of pentasa a day.  i am starting to feel better and my old gi doctor said that since i feel better, i should taper my dose.  the speakers disagreed.  they said that since these drugs are relatively harmless, the max dose should be maintained.. studies have shown that doing this prolongs remission (or the decrease of symptoms). that was interesting to know.  besides for me what is the difference between 16 pills a day and 12??  nothing really.  oh the other thing i learned for all of you thinking about remicade… a study done a cedar sinai showed that the efficacy of the drug decreases at higher doses… therefore the lowest dose was the most effective (5mg/kg… if i remember correctly.. but i’d have to look at my notes which i don’t have right now.. i’ll check on that for anyone who is interested).  anyway, it was good to go to and it gave me a chance to sign up to do volunteer work for the ccfa (like my life isn’t busy enough as it is!  i just feel pretty good right now and i want to cram as much as i can in… i know, i know, i will probably end up paying for it, but you only live once!).  be well everyone!!! love,leighann

Response:

 gi doctor said that since i feel better, i should taper my dose.  the speakers disagreed.  they said that since these drugs are relatively harmless, the max dose should be maintained.. Leighann, thanks for that info.  That misinformation about tapering caused my last flare.  Since I don’t seem to be having any side effects from Asacol I am sticking with it.  I am thankful that I can take it and that something like that is available. Eileen

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hi everyone!  last sunday my finace and i attended a educational meeting sponsored by the ccfa.  there were five speakers and topics included an overview of crohns and uc (etiology, etc), extraintestinal manifestations of ibd, laproscopic surgery, current research, and diet.  it was very well prepared and informative for people who know very little about ibd.   i knew most of what they talked about (and so did kevin because in the last year i’ve taught him a lot), but regardless it was worth attending.   i did learn something that i hadn’t known before and i will share it with all of you in case you are facing a similar situation… if you are taking pentasa or asacol (or any 5-asa), the dose the gets you into remission (or feeling better) should be the maintance dose as well.   therefore, i take 4000mg of pentasa a day.  i am starting to feel better and my old gi doctor said that since i feel better, i should taper my dose.  the speakers disagreed.  they said that since these drugs are relatively harmless, the max dose should be maintained.. studies have shown that doing this prolongs remission (or the decrease of symptoms).   that was interesting to know.  besides for me what is the difference between 16 pills a day and 12??  nothing really.  oh the other thing i learned for all of you thinking about remicade… a study done a cedar sinai showed that the efficacy of the drug decreases at higher doses… therefore the lowest dose was the most effective (5mg/kg… if i remember correctly.. but i’d have to look at my notes which i don’t have right now.. i’ll check on that for anyone who is interested).  anyway, it was good to go to and it gave me a chance to sign up to do volunteer work for the ccfa (like my life isn’t busy enough as it is!  i just feel pretty good right now and i want to cram as much as i can in… i know, i know, i will probably end up paying for it, but you only live once!).  be well everyone!!! love,leighann

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Question:

Yes Chris look up www.kcmetro.net under Le-Gume for all natural relief

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Hey "Rich", "Flaveins" or whatever… can those Le-Gume capsules be rectally inserted? If so, you know what to do with them. Keep your advertising out of this newsgroup. -Joe Yes Chris look up www.kcmetro.net under Le-Gume for all natural relief

Have a nice day, and don’t forget to wear some pants.

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I have UC, and was taking dipentum (also a 5-ASA compound) for about 5 weeks. Every day, I was having terrible diarrhea. One day, I, too, noticed the side effects listing on the information insert — so I decided to stop taking it, just for a while. If I got worse, I would start taking it again. If I got better, I would stop for good.

Dipentum gave me worse diarrhea, at least it didn’t help any. Asacol put me into a remission that has lasted 4 yrs, cross fingers. I had diarrhea and bleeding for 2 1/2 yrs prior to that, on prednisone most of the time. Now I am off it. Kathi

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I had a similar experience, with a slightly different (but related) med. I have UC, and was taking dipentum (also a 5-ASA compound) for about 5 weeks. Every day, I was having terrible diarrhea. One day, I, too, noticed the side effects listing on the information insert — so I decided to stop taking it, just for a while. If I got worse, I would start taking it again. If I got better, I would stop for good. There was a noticeable improvement within 24 hours! And within 1 week, I was able to eat foods that I wouldn’t have dared to eat (pizza, some mexican food) just a week beforehand. Still having general colitis problems, but my colon is FAR less "angry" than when I was on the dipentum. Hi Chris, Well I have pretty strong opinions about Asacol !  I was on it for about 10 years (on and off) and finally decided last January that it wasn’t helping at all.  So I took myself off it and ever since I’ve been heaps better.  No more D, no more tummy pain – take a look at the side effects of Asacol written on the info insert in the packet – diarrhoea and abdominal pain! A word of caution though – my CD is moderate in severity.  My main symptom is pain and bleeding and every now and then the CD likes to remind me that it’s still around and I’ll bleed for a couple of days and then be ok again. I would suggest you talk with your doctor about whether Asacol may be giving you D. Best wishes, Nikki

Have a nice day, and don’t forget to wear some pants.

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Hi Chris, Well I have pretty strong opinions about Asacol !  I was on it for about 10 years (on and off) and finally decided last January that it wasn’t helping at all.  So I took myself off it and ever since I’ve been heaps better.  No more D, no more tummy pain – take a look at the side effects of Asacol written on the info insert in the packet – diarrhoea and abdominal pain! A word of caution though – my CD is moderate in severity.  My main symptom is pain and bleeding and every now and then the CD likes to remind me that it’s still around and I’ll bleed for a couple of days and then be ok again. I would suggest you talk with your doctor about whether Asacol may be giving you D. Best wishes, Nikki

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Bad diarrhea is a common side effect of Flagyl, and no amount of acidophilus unfortunately will change that.  Ask your dr about dropping the flagyl and seeing how things go. – Hide quoted text — Show quoted text -Until my last change in medication, I’d been having frequent diarrhea, in the form of soft, poorly-formed stools. Two weeks ago, about a day to a day-and-a-half after the doctor changed my medication, the situation worsened. I now have stools 2-3 times a day (previously I’d been doing 1- 2), and the consistency is almost completely liquid. My previous medication had been Pentasa; he changed my to Asacol, Flagyl, and Cipro. I am wondering if the new medication is what’s causing the diarrhea, due to the timing of the change in drugs vs. change in stools. Since Asacol and Pentasa is basically the same stuff, this shouldn’t have anything to do with it. However, I wonder if one or both of those two antibiotics might be the cause of my trouble. Does anyone out there in Crohn’s Land have any experience with this? Chris Wuestefeld

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Chris, The antibiotics may be doing it.  It would probably be a good idea to take acidophilous while you are on antibiotics, as they kill the good intestinal flora, as well as the bad, and that may account for your increased BMs. Personally, if I was having BMs less than five times a day, I would consider it remission….it would be for me anyways.  I go 20+ times per day, and frankly, I am sick of it.  If I am on antibiotics and I don’t take acidophilous, I have been known to have more than 50 BMs per day, which basically meant that I was living on the john…..well I guess that you can’t really call that living.  *LOL*  If I take acidophilous with the antibiotic, my BMs don’t become any more frequent than they are normally. I hope that if you try the acidophilous it works for you. *HUGS* Ann – Hide quoted text — Show quoted text – Until my last change in medication, I’d been having frequent diarrhea, in the form of soft, poorly-formed stools. Two weeks ago, about a day to a day-and-a-half after the doctor changed my medication, the situation worsened. I now have stools 2-3 times a day (previously I’d been doing 1- 2), and the consistency is almost completely liquid. My previous medication had been Pentasa; he changed my to Asacol, Flagyl, and Cipro. I am wondering if the new medication is what’s causing the diarrhea, due to the timing of the change in drugs vs. change in stools. Since Asacol and Pentasa is basically the same stuff, this shouldn’t have anything to do with it. However, I wonder if one or both of those two antibiotics might be the cause of my trouble. Does anyone out there in Crohn’s Land have any experience with this? Chris Wuestefeld

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Until my last change in medication, I’d been having frequent diarrhea, in the form of soft, poorly-formed stools. Two weeks ago, about a day to a day-and-a-half after the doctor changed my medication, the situation worsened. I now have stools 2-3 times a day (previously I’d been doing 1- 2), and the consistency is almost completely liquid. My previous medication had been Pentasa; he changed my to Asacol, Flagyl, and Cipro. I am wondering if the new medication is what’s causing the diarrhea, due to the timing of the change in drugs vs. change in stools. Since Asacol and Pentasa is basically the same stuff, this shouldn’t have anything to do with it. However, I wonder if one or both of those two antibiotics might be the cause of my trouble. Does anyone out there in Crohn’s Land have any experience with this? Chris Wuestefeld

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