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Has anyone been diagnosed with an overstretched pouch?

Does anyone know the symptoms?

I have been told that my pouch is larger than it should be.

I am not incontinent; in fact it is quite the opposite - I have a lot of difficulty with bowel movement.

I have nausea (no vomiting) which at times is severe, pain (mild ache and at time spasms) behind my left hip (or perhaps on lower back on left side, and periodic cramps (mild) between belly button and rib cage.

I have difficulty starting the process to have a bowel movement. My body does not respond until I try 3 or 4 times. I would say muscles, but surgeon explained that it is not muscles that cause a BM.

I do get a lot of gas, for which I can only release if I lay down on my stomach.

I find that it is getting more and more difficult to have a BM. Each day it is harder. My surgeon is quite useless as he over prescribes me narcotics (which have had a negative effect on my personality as one of the many side effects). He tells me I probably need physical therapy to learn how to have a BM. This is crap because I can go (although with great difficulty to get process started). Once BM process started, I can actually go with little straining (although with "solid" stool I am "constipated").

I have also been diagnosed with a herniated disc and a pinched nerve. Perhaps this is causing problems with BM's, but it seems unlikely.

Does anyone know when surgery in this situation becomes an emergency or how long a person can survive before it needs to be done (as an emergency)?

I might need to be more proactive with my surgeon as living like this is hell. My current surgeon has explained to me that surgery is the only option remaining (we have tried a lot of things) if I want to change my situation, but he himself will not perform the surgery because he has never done it before. Neither has anyone on his staff. So I am out of luck here.

One of the issues is that I do not have a surgeon who is qualified to do a pouch redo (in Quebec). I am currently in the process of finding a local surgeon qualified for pouch reconstruction. Hopefully something will turn up.

Anyone have any ideas or suggestions? I just want to find something that makes sense that I can tell a doctor so maybe they can help improve quality of life until I actually get operated on.

Any comments would be appreciated.

Thanks in advance.

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I wonder if Luctolose solution USP would help you. I just got this from Dr Bo Shen here at Cleveland Clinic. It has a mild laxative effect. It turns the stool acidic and there are a lot of benefits to it. Anyway, I take it with an antibiotic for bacteria overgrowth so that slows the laxative effect but without it it is pretty runny and food digests a lot better. Perhaps you can see if this would help you.

I have no answers about surgery just commenting on maybe something that can help you get going a bit more.
There have been others here who've had an overstretched pouch and sometimes what happens is that the pouch prolapses or falls over on itself. There are numerous posts here on prolapse. Do a search on prolapse and see if any of the symptoms sound like what you're going through. If it is a prolapse, the pouch can be tacked to the abdominal wall which may alleviate the problem. A pouch re-do (and maybe reduction of size?) might also help.

Have you been checked for a stricture? That can also cause difficulty.

This sounds functional and not necessarily something that can be helped with medications or supplements.

You could PM Jan Dollar - she would better answers and/or solutions than I'm probably giving you.

kathy Big Grin

I have been examined enough (recently) and have taken many tests (which seem to never end!).

I do not have a stricture, nor do I have any ulcers or inflammation. I do not have pouchitis either.

It also does not appear that I have a prolapse pouch as it does not appear that I have those type of symptoms.

I am scheduled for a pouch redo, but the waiting list (in Toronto, 300 miles away) is currently 2 years.

Thanks for the comments. It is much appreciated.

Solomin, Sorry to hear you have still not had surgery. Not sure if doctor was correct but I was told that me getting sick to my stomach had to do with scar tissue and understood bowel obstruction that until 1998 corrected itself. I find that not emtpying as often makes this happen. Not sure if it will work for you but I did find that bands you put around your wrist and it is on a certain pressure point helped and also I used motionease that you put behind each year in certain area. I got the bands from local pharmacy and other I ordered. Not saying it would work for you but I was glad I found out about both after suffering for several yrs. Actually in 98 it did correct itself but then he put me on a bland diet and did surgery for scar tissue and J-pouch prolapse surgery. Other than finding out part of my bowels were attached to female parts when he opened me up after 3yrs. yrs I am finding out surgery may not have been neccessary then anyway. Seems as though one can go to several doctors for the same reason and get three different answers. VERY FRUSTRATING! I hope you get relief soon. I can definitely relate. I see the same thing when I thought I had pouch prolapse but finding out that could is a hemroid I see at times. I finally put my mind to rest on onething. Is it possible for me to have one or not. PA doctor from hospital I had surgery in 1985 said yes it is possible so another reason for me to doubt surgery in 98 b/c that surgeon said not possible. ANYWAY! I praise God the surgery went good and he didn't mess me up to need illeostomy for life.

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