Pouchitis or Prolapse...or both?

There are two basic kinds of pouch prolapses: full-thickness prolapses and mucosal prolapses. Both kinds can vary significantly in degree/severity. They can sometimes be tricky to diagnose, requiring a special x-ray study called defecography (embarrassing but not painful). You might be able to manage a mild prolapse with pelvic floor PT, essentially learning how to empty the pouch with so little straining that the prolapse doesn’t get pushed in way that blocks the exit. To actually repair a prolapse is usually surgical, though folks here have described some procedures that Dr. Shen has done - I’m guessing these were for mucosal prolapses.

Prolapses are rarely an emergency as long as you can find a way to empty your pouch. And there are other things that can cause difficulty emptying.

Good luck!

Send me a private email and I'll tell you about my prolapse experience with Dr. Shen.  And it's probably not an emergency.

@ScottF What are the other causes for difficulty emptying?

A partial list would include an outlet stricture, pelvic floor dysfunction, solid or too thick stool, anal spasm, and maybe severe hemorrhoids. @CTBarrister recently wrote that pouchitis flaring up causes him difficulty emptying. That whole thread might be salient: https://www.j-pouch.org/topic/...8#693899972915976498

Ah thank you! Good to know that pouchitis can be a primary cause of this. I have antibiotic dependent pouchitis like you do. I take Flagyl.

Things get complicated from here because I want to get pregnant. That is of course a separate topic. =)

I just had a scope, so probably they'd have told me if it was a stricture or hemorrhoids. My stool might also be too hard which happens when I eat too many meals containing meat and cheese in a row. Pelvic floor dysfunction seems possible.

Okay, this helps give me SOME peace of mind because it at least gives me something for my worried brain to latch onto that is a little less dire than having to get on a long waiting list for surgery. It's increasingly hard to get any kind of doctor's appointment these days and I ain't getting younger.

ok - so here is my saga.   I had my pouch re-done in 2001 by the great Victor Fazio at the Cleveland Clinic. Dr. Shen was my g.i. doc there.   My pouch has never functioned well and I have ALWAYS had trouble. emptying.   If I remember correctly, Dr. Fazio's nurse told me that the pouch does not have peristalsis and therefore cannot empty as easily as a colon.   

In any case, when I saw Dr. Shen in 2013 in Cleveland the manometry showed that I had paradoxical contractions (for the first time).  He wanted me to spend 2 weeks in Cleveland doing biofeedback and pelvic floor PT.  I didn't do that, but did do lots of pelvic floor PT here in the Bay area.   It only helped me marginally.

In 2019 I realized my pouch was beginning to function very poorly - lots of trouble emptying, lots of anal burning, high frequency.   I scheduled a visit to Dr. Shen at Columbia but then the pandemic intervened.

By the time I got to Columbia in June 2021 my pouch function had deteriorated further. As Scott said, it was diagnosed with decography and confirmed during the pouchoscopy.  During decography they inject a dye into your rear end and then you sit on a pseudo-toilet, which has a camera inside it that photographs you pushing out the dye.   (It's embarrassing because you're essentially pooping with company.). I could only push out about 1/2 the dye.  The rest was going into little outpockets or pouch-o-celes, which are indications of a prolapsed pouch.

Dr. Shen's procedure involves wrapping bands (like rubber bands) around the pouch during the pouchoscopy to intentionally irritate the tissues and cause the formation of scar tissue.  The scar tissue in turn works to support the "floppy" pouch.

Dr. Shen told me he would be putting in 2-3 bands and then if this helped I might need to return to get 2-3 more bands.  He also told me there are no side effects to the procedure.

He confirmed the prolapse during the pouchoscopy and it was so severe that he inserted 6 bands.   Ever since then I have had chronic, sometimes severe pain in my rear end.   It is bad enough that I am considering a pouch excision.

Dr. Shen denies that his procedure caused my pain.   However, the timing was clear - the pain started right after the procedure.   At his urging, I returned to NY in August and did 2 weeks of biofeedback with his staff.   It was not very helpful and the way they did it was incredibly painful and unpleasant.

I have discussed all of this with Dr. Remzi (top notch j-pouch surgeon, trained by Fazio and former colleague of Shen).   He thinks that if I needed 6 bands I may have needed surgery - not sure what kind.  He wants to do all kinds of tests on me (gastrografin enema, pouchoscopy under anesthesia, pelvic MRI).  I don't know if I want to do this.   He also suggested that I might need yet another pouch redo. 

I am doing biofeedback and PT locally and finding them to be at least somewhat helpful.  I am experimenting with a home electrical stim unit which may be helping.

To address Gina's concerns:

I clearly lived with a prolapsed pouch for several years.   Dr. Remzi was much more casual than Dr. Shen about the significance of a prolapse.  I think it is rarely an emergency.  The one serious concern raised by Dr. Shen is that my prolapse was so severe, it was increasing my risk of a fistula.

Dr. Shen did the definitive diagnosis of a prolapse during the pouchoscopy.   I don't think that all g.i. docs know how to make this diagnosis visually.

I cannot say that I would recommend the banding procedure but it's possible that my situation was more severe than most.

I have no idea if my prolapse was mucosal or full thickness (I haven't heard of this before) but given the severity I suspect it was full thickness.

Scott -- What kind of surgery would be done to repair a prolapse?

I hope this helps.

Debbie

I believe a full-thickness prolapse can be treated by better securing the pouch into the pelvis. I don’t know the various ways a mucosal prolapse can be treated - perhaps a mucosectomy is one?