Skip to main content

Can anybody give me an idea what the symptoms are of new pouch failure?
I have a pouch and it does not seem to work right.
Every week.....day.....is an adventure.
I have had it about six months and it seems to me I would not have these weekly ups and downs.
I just lost five pounds this past week from a blockage.
it took me months to get the weight on and days to lose it.
I used to weigh 176 and dropped to 132 after the surgery and three hospital stays.
I weigh 133 now.....
any info will help.
Thanks you.
Richard

Replies sorted oldest to newest

I'm sorry you're having a difficult time. Without knowing what your surgeon (and perhaps your GI, too) are saying about this, it would be extremely premature to jump to pouch failure, I think. Do you have pouchitis? Cuffitis? A stricture? Bacterial overgrowth? These are all treatable, but only when they are diagnosed.

Blockages are generally not caused by the pouch. Anyone who has any sort of abdominal surgery can develop adhesions, and anyone with adhesions can develop blockages. J-pouchers with blockages often congregate here.

Pouches can fail, but they should never fail from neglect. If you're not getting this attended to, I hope you'll get started soon.
Scott F
Thank you for the reply.
No....no problems at all.
well....its healthy but it just does not want to work right.
like the past two days.
I have partial solids and feel as if it is full but when I go only a lttle bit come out.
Weird.
it is hard to explain.
last week as I mentioned above a blockage and weight loss.
Now I have this going on.....alot of gas and tightness....gurgling. ...pain from the cramps
all the time.
I am just confused and I do not know what to do.
I eat right.
I can eat lets say spagetti one week and it won't bother me.
If I eat it two weeks later I will have a blockage.
I am at wits end.
I am not really getting an answers.
From the surgeon anyways.
I need to see my gastro Dr.
Maybe he has some answer.
I do go see the surgeon every other week.
Thank you.
Richard.
Mysticobra
It is true that food may become stuck, starting the actual obstruction. However, it is the fact that there is a narrowing, usually from adhesions (scar tissue) that is causing a kink. It is similar to a kink in a hose, and that is why they can come and go for no apparent reason. The intestines are in constant motion, not stationary like your house plumbing.

That is why you can eat the same food a hundred times with no problems, then have an obstruction out of the blue. Anyone who has had abdominal surgery, and intestinal surgery in particular, is at risk. It may have nothing to do with your j-pouch.

Jan Smiler
Jan Dollar
Richard,
I sympathize with how you feel. I can only counsel patience. I had inconsistent behavior for a long time (years) until I slowly (some of it my own fault) found and stuck to the things that work for me. There are foods I just don't eat anymore, and some foods I did fine with when I had UC I can't tolerate now with a J pouch. There are times of the day when I don't eat; I have a routine I follow now. If I stick to my 'schedule' of what works for me, I have fewer and fewer problems. My takedown was January 2007, and I'm pretty happy these days, but it took a long time to get there. Don't be discouraged, but be patient. All that being said, you best know how you feel and sometimes one has to keep after the docs until they get it right, or until you are sure they are adequately aware of how you are doing.

Hang in there,

Mark
Minn Mark
It's much clearer to talk about leakage than "pouch failure." Have you tried a thickener to add bulk to the stool? These include things like Metamucil, Konsyl, Benefiber, and Citrucel. Are you using a bowel slower, like Imodium or Lomotil? Have you done kegels regularly? Have you noticed any connection between your diet and leakage?
--Scott
Scott F
About your butt burn, the big BB, and leakage, has your surgeon given you any suggestions for this? Have you been or do you use Metamucil, or something like it, and/or Imodium, or something like it?

I won't go into any details about using them now as am assuming that your surgeon, like mine, did have you use them. I have all of my follow-up care with my GI and am still taking up to 8 Loperamide's daily, which is prescription Imodium, as I have IPS - which is like IBS. I think it is a good thing you are going to see your GI.

My local GI ended up referring me to an IBD GI specialist at the Mayo Clinic when he could not help me get my cuffitis under control. That is where I found out I also have IPS. (My local GI said that he is a generalist that takes care of the entire digestive system and I needed a specialist.) Please remember this as you go forward. You have many avenues to explore until you "settle" with your j-pouch problems.
TE Marie
I have taken all those.
metamucal give me diarrhea and more leakage.
Right now I am in a great deal of pain.
It feels like a blockage although small amounts are moving thru.
If I stand the pain is worse and I double over.
I have not noticed any changes in what I eat compared to my leakage.
I seem to....no other way to say it....I feel like a poop conveyor.
It's constant.
Sorry to bug you guys with my problems.
I don't know what to do.
I have and am taking lomital.
Surgeon has given me codeine but it stopped everything from moving
thru.
I tried fiber products but they seem to make it worse.
Makes the burn worse.
Richard
p s
sorry about my cluttered responses.
I know alot of people are very educated on the whole pouch
subject.
I am not.
as you can tell.
I just need to go see my gastro dr.
maybe he can help.
Mysticobra

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×