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20  years on the time has come for DH's pouch to go, due to a combination of strictures, ulceration & sepsis. We knew about the sepsis - he's been struggling with abscesses / fistulae for a couple of years.   The strictures and ulceration were new news on Tuesday, when he had an endoscopy with the new surgeon he'd been referred to deal with known problems.  Let's just gloss over all the endoscopies other people have done and told us 'the pouch looks fine'.

Anyway, new-surgeon-who-does-his-own-endoscopies-and-does-them-properly told him on Tuesday that the pouch is beyond saving but also said that he would leave it in situ and create a new ileo above it.

We have a follow-up phone call tomorrow morning.   I want to understand more about the intention to leave the pouch in situ and I'd like your opinions / experiences please.

Given that the existing fistula now seems likely to be a result of the ulceration rather than an unfortunate coincidence, I'm concerned about the chances of that healing with the pouch in situ and the likelihood of DH continuing to experience pain with it and having to continue with the seton, which has been an ongoing nightmare for him.  I have a lot more confidence in the new surgeon but no confidence that there'll be a hospital bed available this winter if problems arise (thanks COVID).

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I had a J pouch for 30 years that had to be removed due to recurrent high grade dysplasia and a malignant polyp near the anal sphincter.  I would suspect with what you posted about the condition of your pouch that it would be best to have it removed to prevent problems later on.  Your surgeon should be able to advise you about that.  Have you inquired about having a new J pouch constructed?

In my case, the option of going to an end ileostomy was suggested in a second opinion consultation, but I did not want that procedure with its associated issues. Fortunately, I researched my options and elected to get a BCIR (similar to a K pouch) that does not require having an external bag.  During the 30 years I had the J pouch, numerous dense adhesions had developed that lengthened my surgery time by 3 hours.  The surgeon removed my J pouch and sewed up my bottom.  Everything went well and I have had excellent results with my procedure.

I have become very active in the continent ileostomy community and am a columnist in UOAA’s magazine, “The Phoenix”. One of my articles is entitled, “Researching My Options” which can be viewed at: .  This article is also available on the website of the Quality Life Association (  This website contains additional information about the BCIR procedure as well as a list of surgeons who perform continent ileostomies.  I would be pleased to provide more information if you are interested.  Just send me a PM.  Bill

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