Question:
P. Campbell <az…@FreeNet.Carleton.CA
wrote in message
I don’t understand why you think your output would change with a reversal. You will still experience yellow/green stool, you will still have the same frequency in output, you will still have a problem with the stool irritating your skin. The only thing that changes is the location of the exit for your stool. You will still have problems managing your reversal just like you have now with an ostomy…skin issues, output, smell,…etc. I believe what is at issue is your mental well-being. Work on these issues and the rest will fall into place (ex. gain confidence and pursue a doctor who will help you…like yourself just the way you are and accept what you may not be able to change). You can pick how you want this to end up but it will feel better accomplishing it with self assurance and self love. Just my two cents. I wish you well in getting what you are hoping for. — Susan R. Manassas, VA
Response:
In article <83mjrg$j5…@freenet9.carleton.ca
,
az…@FreeNet.Carleton.CA (P. Campbell) wrote:
How do you word a request/demand for a reversal op ? The doctors concerns are : repeated ops leaving scar tissue ,
repeat
crohns , shortened blood vessels , and short bowel syndrome .
Mr. Campbell, I waited a few days before responding because I didn’t want to respond with a blast because that isn’t what you need. But I do think you can leave the sarcasm somewhere else. Some of us don’t get here very often not by choice, but because, like me, we have to work too much. Being self-employed, I put in up to 15 hours a day. But I get over here when I can and help out when I can. That being said, I would like to encourage you to hang in there. I know it’s not what you want to hear, but if you go demanding your doctors do the reversal before your body is medically ready, then you could be causing yourself a whole lot of other problems. Your doctor has some valid concerns. Even though your tests show you "sufficiently healed," it might not be enough given the Crohn’s and cancer background. A little more healing will be of more benefit in the long run. I’m not saying this because I have an ostomy, can live with it just fine, and you should too. On the contrary, that’s not why I help people. Unfortunately there are some that don’t come to terms with having to live with an ostomy, and there are some whose ostomy hasn’t adapted as well as others. This is very sad because this is something that isn’t too easy to have to deal with being our digestive systems and the resulting output isn’t something that makes dinner conversation! I’m sorry yours isn’t working out for you. It makes life very unpleasant at best. But again, I just want to encourage you to hang in there just a bit longer. Your doc hasn’t given you an absolute "no" now has he? If the plan is the reversal in the future, just hang on. He is doing this, not to aggravate you and make you mad at him, but to be absolutely, completely certain that you are healed sufficiently and your body will take to the reversal. Heaven forbid you have the reversal and something wasn’t healed sufficiently to cause major problems and then end up with a permanent ostomy! Now you don’t want that to happen, do you?! When the time is right, it will be perfect, and then everything will go smoothly. Hang in there, and take care. I hope it all works out for you. Crystal — Crystal Scotti Ileostomy 15 1/2 years, married 14 years, and 2 children. I can also be reached at: csco…@ptialaska.net Sent via Deja.com http://www.deja.com/ Before you buy.
Response:
Can anyone suggest a better newsgroup for P. Campbell? One where one can solicit sympathy by pissing, moaning and whining? Earl (U)
Can’t recommend a catalog that would help him?
Response:
P. Campbell, 1. You are in a very difficult situation. 2. You are entitled to anything and everything you are feeling. 3. You are entitled to these feelings without explanation to others. 4. You are the only person who knows what you are going through. If he can’t talk through things here, where is there? This is the only place that has the awareness and knowledge related to what he is posting. It doesn’t matter if no one knows what to say. Or agrees or disagrees. Everyone should be allowed to voice their feelings without being belittled. NG’s are for support and advice. If we want a place of no compassion, we’ll go to a doctor’s office. (That is a joke – just trying to lighten up a bit…..) Lane
Response:
"Lane" (lwe…@NOSPAMsan.rr.com) writes:
P. Campbell, 1. You are in a very difficult situation. 2. You are entitled to anything and everything you are feeling. 3. You are entitled to these feelings without explanation to others. 4. You are the only person who knows what you are going through.
Thank you Lane , at least someone knows how I feel .
If he can’t talk through things here, where is there? This is the only place that has the awareness and knowledge related to what he is posting. It doesn’t matter if no one knows what to say. Or agrees or disagrees. Everyone should be allowed to voice their feelings without being belittled. NG’s are for support and advice. If we want a place of no compassion, we’ll go to a doctor’s office. (That is a joke – just trying to lighten up a bit…..)
My quality of life was much better this summer , up until the intestinal bleed . I was very active , I’d put on weight without my prescribed dietary supplement ( ReSource ) I was full of energy . I felt the best I have ever felt since being diagnosed with small bowel Crohns 24 years ago ! Since the ostomy op , My health has deteriorated . The ostomy is causing my body to dehydrate , and creating mega-fluid output ( try once every two hours ) It has destroyed any sleep pattern I had , leaving me perpetually tired , and with barely enough energy to do much more than my job . The output is also destroying wafers , and at 6.50 a pop , three days wear-time is NOT ok . The output is mainly yellow/green and from what I was told , that is NOT good , though no-one seems to care . I’ve on my second sinus infection in 5 weeks , and if I get pneumonia a third time , I’m toast . My health is MORE at risk if I do NOT have this ostomy reversed as soon as I’ve healed enough . If the surgeon cannot see that , I should be looking for another . I’m sure my GI doc can convince him if I cannot . I’m NOT on Prednisone , Pentasa , Asacol , or any other Crohns prevention meds ( I havent been since march ‘92 , apart from the brief shot during the bleed this fall ) I’m only on Zantac to prevent any possible bleeding . My arthritis and damaged vertabrae ( L3 ) do not inhibit my activity at present but it soon will . My lungs are on the downward slide too ( I’m a cough or two away from full-blown asthma ) My colon and ilium still function normally ( or did before the bleed , and that was 8 years worth ) And I’d like to use what is left of them while they last , so I can make the best of what time I have left . If you cannot understand that , please keep your cynicism to yourself . You have not lived my life , so cannot know what I’ve been through . My family stands behind me 100 % , as do my family , my landlord of 7 years . ( she takes care of my kitties while I’m in hospital ) and my friends . If you choose NOT to honor my request to keep negative comments to yourself , I’ll have to assume you gain power by pushing others down . I always try to give either positive contributions , or keep my digits off the keyboard . Isn’t this alt.SUPPORT.ostomy ? I don’t see much in the way of support here , though everyone else gets support for their reversal ops . I’m NOT looking for sympathy or pity , but positive contributions to my reversal decision . Thats SUPPORT for those of you that are understanding-impaired . Again , Lane , thank you , and I hope you have a better life than mine . The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
Response:
Hi there I’m truly sorry you feel the way you do about your ostomy – I’ve had my ileostomy for 23 years since I was 10 years old and have no chance of a reversal. The short answer is "you don’t have to like your ostomy, but you do have to learn to live with it". I think the reason you think you’re not finding much support here is because you have your mind set on a reversal despite your doctor’s warnings. You can’t really expect the people here to be supportive of your decision if there is a very real chance that you’re not ready for the reversal yet. How do you think they will feel if all does not go well? A responsible person cannot say to you "who cares what the doctor says – go ahead and have it anyway". We are not your doctors and as such cannot say go ahead and demand the reversal despite what your doctor thinks and pretend that we’re giving good advice. I truly hope that you do get your reversal BUT only when your body is good and ready for it which, although may not be for a while, will be for the best for you in the long run. Take care Shaz http://www.geocities.com/HotSprings/Spa/8089/ – Hide quoted text — Show quoted text -"P. Campbell" wrote:
If you cannot understand that , please keep your cynicism to yourself . You have not lived my life , so cannot know what I’ve been through . My family stands behind me 100 % , as do my family , my landlord of 7 years . ( she takes care of my kitties while I’m in hospital ) and my friends . If you choose NOT to honor my request to keep negative comments to yourself , I’ll have to assume you gain power by pushing others down . I always try to give either positive contributions , or keep my digits off the keyboard . Isn’t this alt.SUPPORT.ostomy ? I don’t see much in the way of support here , though everyone else gets support for their reversal ops . I’m NOT looking for sympathy or pity , but positive contributions to my reversal decision . Thats SUPPORT for those of you that are understanding-impaired . Again , Lane , thank you , and I hope you have a better life than mine . The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
sharon.vcf
< 1K Download
Response:
We got the message shortly after his first message, and realized he doesn’t want to hear from us. Sounds to me like he is on his own. This group can only do so much. Phil
No, you didn’t get the message. One has to walk in his shoes before they make harsh judgements, He is asking for help and understanding. If you can’t be kind – say nothing.
Response:
You know, if you had only stated all of this in your previous posts none of this would have transpired and I’m sure EVERYONE would have had the same advice as I’m going to give you-FIND ANOTHER DOCTOR and take with you the post I am replying to where you describe it all. If that doesn’t convince someone SOMEWHERE to help then maybe the reversal just simply should not be done. Not everyone’s health improves after a major illness and maybe this is the area you need support with. David – Hide quoted text — Show quoted text -P. Campbell wrote in message <83pkda$g…@freenet9.carleton.ca
… "Lane" (lwe…@NOSPAMsan.rr.com) writes: P. Campbell, 1. You are in a very difficult situation. 2. You are entitled to anything and everything you are feeling. 3. You are entitled to these feelings without explanation to others. 4. You are the only person who knows what you are going through. Thank you Lane , at least someone knows how I feel . If he can’t talk through things here, where is there? This is the only
place
that has the awareness and knowledge related to what he is posting. It doesn’t matter if no one knows what to say. Or agrees or disagrees. Everyone should be allowed to voice their feelings without being
belittled.
NG’s are for support and advice. If we want a place of no compassion,
we’ll
go to a doctor’s office. (That is a joke – just trying to lighten up a bit…..) My quality of life was much better this summer , up until the
intestinal
bleed . I was very active , I’d put on weight without my prescribed
dietary
supplement ( ReSource ) I was full of energy . I felt the best I have ever felt since being diagnosed with small bowel Crohns 24 years ago ! Since the ostomy op , My health has deteriorated . The ostomy is
causing
my body to dehydrate , and creating mega-fluid output ( try once every two hours ) It has destroyed any sleep pattern I had , leaving me perpetually tired , and with barely enough energy to do much more than my job . The output is also destroying wafers , and at 6.50 a pop , three days
wear-time
is NOT ok . The output is mainly yellow/green and from what I was told , that is NOT good , though no-one seems to care . I’ve on my second sinus infection in 5 weeks , and if I get pneumonia a third time , I’m toast . My health is MORE at risk if I do NOT have this ostomy reversed as soon as I’ve healed enough . If the surgeon cannot see that , I should be
looking
for another . I’m sure my GI doc can convince him if I cannot . I’m NOT on Prednisone , Pentasa , Asacol , or any other Crohns
prevention
meds ( I havent been since march ‘92 , apart from the brief shot during
the
bleed this fall ) I’m only on Zantac to prevent any possible bleeding . My arthritis and damaged vertabrae ( L3 ) do not inhibit my activity at
present
but it soon will . My lungs are on the downward slide too ( I’m a cough or two away from full-blown asthma ) My colon and ilium still function
normally
( or did before the bleed , and that was 8 years worth ) And I’d like to
use
what is left of them while they last , so I can make the best of what time
I
have left . If you cannot understand that , please keep your cynicism to yourself . You have not lived my life , so cannot know what I’ve been through . My family stands behind me 100 % , as do my family , my landlord of 7 years . ( she takes care of my kitties while I’m in hospital ) and my friends . If you choose NOT to honor my request to keep negative comments to yourself , I’ll have to assume you gain power by pushing others down . I always try to give either positive contributions , or keep my digits off the keyboard . Isn’t this alt.SUPPORT.ostomy ? I don’t see much in the way of support here , though everyone else gets support for their reversal ops . I’m NOT looking for sympathy or pity , but positive contributions to my reversal decision . Thats SUPPORT for those of you that are understanding-impaired
.
Again , Lane , thank you , and I hope you have a better life than mine
.
The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
Response:
Glad you said this before I did Earl. I have read his posts now for two weeks, and have felt that perhaps he isn’t real. If he didn’t want to accept advice once given from genuinely good thinking ostomates (ostomists), then why did he continue to come in here and pound us with his tale of woe. We got the message shortly after his first message, and realized he doesn’t want to hear from us. Sounds to me like he is on his own. This group can only do so much. Phil "In beer there is strength. In wine there is wisdom. In water there is bacteria." ~German proverb Earl <cen09…@centurytel.net
wrote in message
news:N.122199.093309.51@Default… – Hide quoted text — Show quoted text -
Can anyone suggest a better newsgroup for P. Campbell? One where one can solicit sympathy by pissing, moaning and whining? Earl (U) ————————Reply Separator—————————- On 12/20/99 7:06PM, in message <83mjrg$j5…@freenet9.carleton.ca, P. Campbell <az…@FreeNet.Carleton.CA wrote: You all know on my problem by now . Hell , anyone that doesn’t : you dont get in here much , do ya ! Sorry , I’m TRYING to keep my spirits up . I’ve gone from depression , to anger , to determination now … So I’m here to ask any who have been in this situation before , or any medical staff : How do you word a request/demand for a reversal op ? Before you say " don’t " , this is conditional on the GI series and
the
colonoscopy BOTH showiung me as sufficiently healed . I’ve only lost about a foot of my colon ( to cancer & the rare crohns ) and the other 7 or so feet in my ilium , mostly upper ( regular crohns), but about a foot at the small-large bowel junction ( the cancer and rare crohns ) NOTE : he has ordered the GI series/scope to determine the healing , but if he is not going to re-connect , whats the bloody point ,
right ?
The doctors concerns are : repeated ops leaving scar tissue , repeat crohns , shortened blood vessels , and short bowel syndrome . My return arguments so far are : If the scar tissue is a problem , take it out . I have a bit of a " beer gut " as it is . I’ve been normal
crohns
free for 8 years , as for the rare version , its RARE ! The SBS is not
a
factor ( in my opinion ) as I’m supposed to be taking a dietary supplement anyway ( I mal-absorb fats ) and I’ve always been more toward constipation anyway . The blood vessels , well , take some from the removed scar tissue , or out of my thigh like they do in heart ops ! If I have to , I’ll tell the doc I’ll sign an " against medical
advice "
form if he needs me to , and if that is not enough , go shopping for a new surgeon . My main point behind all of this is : QUALITY OF LIFE . Do I have all my arguments lined up ? Those who wish to try to convince me otherwise , and side with my doc , do not bother . NOTHING will change my mind . I apologise if this offends you but it IS my choice untimately . The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
Response:
Your request for a reversal sounds almost just like wanting to walk into a doctor’s office and demanding he cut off a leg when there is nothing wrong with it! Get a life and get used to having your ostomy!!! It sounds like you have enough problems without asking your doctor to do something he obviously thinks it is in your best interest to avoid! JEESH!!! You say you had cancer, Crohns, etc and you’re talking about improving your ‘quality of life’? I would think having an ostomy has already improved your ‘quality of life’, hasn’t it? Sometimes we just have to accept what life deals us! David (C) – Hide quoted text — Show quoted text -Earl wrote in message …
Can anyone suggest a better newsgroup for P. Campbell? One where one can solicit sympathy by pissing, moaning and whining? Earl (U) ————————Reply Separator—————————- On 12/20/99 7:06PM, in message <83mjrg$j5…@freenet9.carleton.ca, P. Campbell <az…@FreeNet.Carleton.CA wrote: You all know on my problem by now . Hell , anyone that doesn’t : you dont get in here much , do ya ! Sorry , I’m TRYING to keep my spirits up . I’ve gone from depression , to anger , to determination now … So I’m here to ask any who have been in this situation before , or any medical staff : How do you word a request/demand for a reversal op ? Before you say " don’t " , this is conditional on the GI series and
the
colonoscopy BOTH showiung me as sufficiently healed . I’ve only lost about a foot of my colon ( to cancer & the rare crohns ) and the other 7 or so feet in my ilium , mostly upper ( regular crohns), but about a foot at the small-large bowel junction ( the cancer and rare crohns ) NOTE : he has ordered the GI series/scope to determine the healing , but if he is not going to re-connect , whats the bloody point , right
?
The doctors concerns are : repeated ops leaving scar tissue , repeat crohns , shortened blood vessels , and short bowel syndrome . My return arguments so far are : If the scar tissue is a problem , take it out . I have a bit of a " beer gut " as it is . I’ve been normal
crohns
free for 8 years , as for the rare version , its RARE ! The SBS is not a factor ( in my opinion ) as I’m supposed to be taking a dietary supplement anyway ( I mal-absorb fats ) and I’ve always been more toward constipation anyway . The blood vessels , well , take some from the removed scar tissue , or out of my thigh like they do in heart ops ! If I have to , I’ll tell the doc I’ll sign an " against medical
advice "
form if he needs me to , and if that is not enough , go shopping for a new surgeon . My main point behind all of this is : QUALITY OF LIFE . Do I have all my arguments lined up ? Those who wish to try to convince me otherwise , and side with my doc , do not bother . NOTHING will change my mind . I apologise if this offends you but it IS my choice untimately . The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
Response:
Can anyone suggest a better newsgroup for P. Campbell? One where one can solicit sympathy by pissing, moaning and whining? Earl (U) ————————Reply Separator—————————- On 12/20/99 7:06PM, in message <83mjrg$j5…@freenet9.carleton.ca
, P. Campbell
– Hide quoted text — Show quoted text -<az…@FreeNet.Carleton.CA
wrote: You all know on my problem by now . Hell , anyone that doesn’t : you dont get in here much , do ya ! Sorry , I’m TRYING to keep my spirits up . I’ve gone from depression , to anger , to determination now … So I’m here to ask any who have been in this situation before , or any medical staff : How do you word a request/demand for a reversal op ? Before you say " don’t " , this is conditional on the GI series and the colonoscopy BOTH showiung me as sufficiently healed . I’ve only lost about a foot of my colon ( to cancer & the rare crohns ) and the other 7 or so feet in my ilium , mostly upper ( regular crohns), but about a foot at the small-large bowel junction ( the cancer and rare crohns ) NOTE : he has ordered the GI series/scope to determine the healing , but if he is not going to re-connect , whats the bloody point , right ? The doctors concerns are : repeated ops leaving scar tissue , repeat crohns , shortened blood vessels , and short bowel syndrome . My return arguments so far are : If the scar tissue is a problem , take it out . I have a bit of a " beer gut " as it is . I’ve been normal crohns free for 8 years , as for the rare version , its RARE ! The SBS is not a factor ( in my opinion ) as I’m supposed to be taking a dietary supplement anyway ( I mal-absorb fats ) and I’ve always been more toward constipation anyway . The blood vessels , well , take some from the removed scar tissue , or out of my thigh like they do in heart ops ! If I have to , I’ll tell the doc I’ll sign an " against medical advice " form if he needs me to , and if that is not enough , go shopping for a new surgeon . My main point behind all of this is : QUALITY OF LIFE . Do I have all my arguments lined up ? Those who wish to try to convince me otherwise , and side with my doc , do not bother . NOTHING will change my mind . I apologise if this offends you but it IS my choice untimately . The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
Response:
You all know on my problem by now . Hell , anyone that doesn’t : you dont get in here much , do ya ! Sorry , I’m TRYING to keep my spirits up . I’ve gone from depression , to anger , to determination now … So I’m here to ask any who have been in this situation before , or any medical staff : How do you word a request/demand for a reversal op ? Before you say " don’t " , this is conditional on the GI series and the colonoscopy BOTH showiung me as sufficiently healed . I’ve only lost about a foot of my colon ( to cancer & the rare crohns ) and the other 7 or so feet in my ilium , mostly upper ( regular crohns), but about a foot at the small-large bowel junction ( the cancer and rare crohns ) NOTE : he has ordered the GI series/scope to determine the healing , but if he is not going to re-connect , whats the bloody point , right ? The doctors concerns are : repeated ops leaving scar tissue , repeat crohns , shortened blood vessels , and short bowel syndrome . My return arguments so far are : If the scar tissue is a problem , take it out . I have a bit of a " beer gut " as it is . I’ve been normal crohns free for 8 years , as for the rare version , its RARE ! The SBS is not a factor ( in my opinion ) as I’m supposed to be taking a dietary supplement anyway ( I mal-absorb fats ) and I’ve always been more toward constipation anyway . The blood vessels , well , take some from the removed scar tissue , or out of my thigh like they do in heart ops ! If I have to , I’ll tell the doc I’ll sign an " against medical advice " form if he needs me to , and if that is not enough , go shopping for a new surgeon . My main point behind all of this is : QUALITY OF LIFE . Do I have all my arguments lined up ? Those who wish to try to convince me otherwise , and side with my doc , do not bother . NOTHING will change my mind . I apologise if this offends you but it IS my choice untimately . The Great White Wolf — * Knowing when to abandon those who care * * * too little or too much about themselves * * * * * * * * * * * * * * * * * – The Great White Wolf - * * * * * * *
Response:
. Prednisone also causes calcium loss, so you should be sure to take calcium supplements of some sort. It’s also very important to drink a lot while on Prednisone – at least 2 litres (about 2 quarts), or even more than that if you live in a hot climate. Be well, Daniel Pfeffer 
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