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Reply to "everyone list best trick to enter full/tight pouch"

My specific reply to Jan is below -- Jan, please read thru this first.

Leaking is caused by a valve problem. It is when a significant amount of gas or liquid or solid semi-liquid output comes out of the stoma when not intubated. This happened to me starting a year ago, infrequently at first, almost at random, but progressively more frequently and now many times a day. My pouch was before that 100% completely continent for 16 years (except for one period when I was taking SSRI antidepressants, which made her leak and caused terrible pain -- I've posted about that but if anybody needs it let me know, I'll post it again.)

Having mucous come out of the pouch is totally normal and a sign of good health because the intestinal (pouch) tissue should never be dry. Having a little gas or water escape is also considered quite normal. For output to flow out of the stoma -- more than a spoonful -- is not ideal, although my doctor has told me that some people's pouches are never 100% continent and they normally have some "leakage" of small amounts from time to time. As long as the amount and frequency of leakage is tolerable and stable, he tells me, many people just live with it and its not cause for surgery, which always has risks.

In my case, however, the amount and frequency of the leakage kept increasing over the course of a year from small spots of less than half a mL on my Ampatch to where it was 3-to-5 mL at a time coming out at once, then again in another few minutes if I didn't empty her... and that would happen several times a day. I never had a fever or body aches or any of the other signs of pouchitis, and none of the thousand rounds of antibiotics I took for nine months made any difference. The famous pouch surgeon who did the pouchoscopy and gave me that diagnosis said the valve looked fine and he had no problem entering the pouch with the scope; the valve problem was not as severe then (a year ago) and my lying down must have straightened it out enough that he couldn't tell there was a problem. The pathologist's report did NOT indicate pouchitis and I never ran a fever or had body aches. I kept careful records of everything -- looking for patterns -- and the type of food I ate made no difference, but I would ALWAYS leak an hour or two after I'd consumed 6 - 8 ounces of liquid in a short period of time.

I was having progressively more difficulty intubating and the next surgeon I went to was sure it was a valve problem and shocked that my famous surgeon said it was pouchitis. He didn't have enough experience with continent ostomies (and lied about it), so I went to Dr Pokala Ravi Kiran at  New York-Presbyterian/Columbia and I'm very very lucky to have found him. He told me after a pouchoscopy, biopsy and CAT scan that I did NOT have pouchitis, that my valve had developed a "kink" -- and that is exactly what it felt like when I was having problems intubating. This can happen with "older" pouches --- many people (but certainly not all) need valve "revisions" after about 15 - 20 years.

My surgery is on October 3rd, 2018 at Columbia Presbyterian Hospital in New York City (thanks for asking, Jan!) and in the meantime I either don't eat during the day at all or have just a little cheese and crackers and no liquids till I get home -- that regimen is just what I've learned from experience at this point.

Jan, I was lucky to have a completely continent pouch, but not all of them are, and I can't tell whether you've always leaked this much or if its a recent thing. It sounds like a lot of leaking, however. If you can accommodate it by emptying and changing covers more frequently (I use Ampatches from Austin Medical, they come in various absorbencies and most insurance covers them) and the amount and frequency are stable -- not getting worse -- it might be something you have to live with. I would suggest that you (1) keep some kind of records to monitor it to see if its stable, (2) try a high-absorbency Ampatch if you haven't already tried them (call Chris there for help selecting) and then a Kendall or similar "island barrier" on top of that if necessary, and (3) if its getting worse and your doctor isn't responding (and tell him my story, too, that the valve problem was not obvious at the first pouchoscopy), get a second opinion from one of the surgeons mentioned on this site or from the QLA site's list

There are a LOT of quacks out there who will tell you you need surgery who are NOT qualified to diagnose you or operate on you. Don't rush into anything -- I know this is an annoying situation but its not life-threatening. And hopefully some or many of the "tricks" listed here will help you with the intubation problem for now.

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