Pouches are sometimes removed, but it's very important to find out why you're suffering, if you haven't already. Many problems are quite treatable, and some problems are not improved by pouch removal.

I think you must mean they left a small piece of rectum (the "rectal cuff").  If that's your trouble spot, and the trouble is inflammation, it's generally called cuffitis. Have you tried the various medical treatments for cuffitis? The surgical treatment for cuffitis is commonly pouch advancement with mucosectomy.

You should still have all of your ileum, though some of it will have been turned into a J-pouch.

Scott,

can you explain more what pouch advancement with mucosectomy is? I have Cuffitis and its not improving even with 2x day cortifoam and 12 weeks on Entyvio. I am tapering down from Prednisone to 30 so things are actually getting worse. I will see gastro and surgeon next week but am preparing for them to suggest ostomy again. From what I've read , does the pouch advancevent remove more  of the rectal  cuff - guess mine is very small and I'm concerned about incontinence. Now I have frequency but only incontinence every other day for short time, more like leakage when I can't empty completely. If I'm home my squirt bottle with warm water remedies it, but it takes time. I'm also going to look into BCIR but not sure if it's an option for me. Have ulcers in anus, possibly indicative of Chrohns.

Is that pouch advancement done in most places that do j-pouch surgeries or only Cleveland Clinic and Mayo? Not sure how long I can go on living with this Cuffitis! Thanks so much for sharing your expertise! Any other suggestions/options welcomed!!

laurie

Laurie-

As you surmised, pouch advancement removes that troublesome bit of rectal cuff, and the pouch is then hand-sewn to what remains. Mucosectomy is the removal (essentially scraping, I believe) of the innermost layer of the remaining outlet, which is also prone to UC. Mucosectomy carries a higher risk of true incontinence, wich is why it now isn't routinely performed in the first place, but many folks here have had successful mucosectomies.

IMO pouch advancement should only be performed by a very experienced surgeon. The hand sewing is delicate, and mobilizing the pouch is tricky, too. If I needed it I'd simply go to Cleveland, unless I had very good evidence that my local surgeon had the necessary experience and success.

A Crohn's diagnosis might change things, though. I had J-pouch surgery with a probable Crohn's diagnosis over ten years ago, and I knew what I was doing. Several surgeons turned me down for a J-pouch, and the odds were certainly less favorable, though things have turned out even better than I expected. The story is likely different with pouch advancement or BCIR, both of which may simply be a bad idea if Crohn's is confirmed. In particular, pouch advancement seems best suited to people whose problems are limited to the rectal cuff.

Thank you Scott for clarifying those terms for me. That helps a lot and I'll be able to discuss it with doctors next week. My surgeon has good reputation and does lots  of pouches, but will have to see what experience he has fixing things. Not sure if my insurance would pay for Cleveland Clinic, but if needed I may have to switch insurance in June in order to have coverage there. Big decision to go that route with possible I ncontinence looming. If I have Chrohns, it is only showing in the anus-appears pouch and everything above are all good so maybe a BCIR would be considered. Will try to pursue that more next week. Thanks again! Glad you  are happy  with your results!

Laurie

Laurie,

If it turns out that your surgeon does not have experience (along with a good track record) in dealing with pouch problems, Cleveland Clinic would be a very good choice for you.  In the event CC is not “in network” for your current insurance, you should request out-of-network coverage on the basis that no in-network provider is qualified to treat your condition.  A well-worded statement from your surgeon would need to accompany your request.  You certainly want to make every effort to save your j-pouch before opting for an alternative such as the BCIR.

Bill

I had my pouch removed in 2003 and it was the single best decision of my life.  No drugs, no diet restrictions, no activity restrictions.  Had two babies post pouch removal - they are now 9 and 6 1/2.  I am co-chair of the PTA, work full time, travel a lot (I'm a Disney Travel Agent) and live the life I want without a thought to my GI system.

Jill jpouch in 2 steps 1998, disconnected pouch in 2001, removed pouch in 2003

Question about reversal from jpouch to an Ileostomy...

do they always remove the j pouch during this surgery?

do they always sew butt shut?

do they do it all at once? Long hospitalization and recuperation?

I realize these are both big surgeries, but do not know if they are the norm for reversal or optional. I know if I were to revert to ileostomy, I wouldn't want to deal with any mucous or other leakage like I had with loop ileostomy before my takedown.

thanks!

I'm an ex-poucher, too. They don't always remove the pouch, for instance if you're very ill or not up to that much surgery at once, but it's advisable to remove it eventually as it's considered "dead tissue" (I think?) I had mine removed, rectum removed, anus sewn shut and shop closed back there. This surgery was not as difficult as I'd expected, maybe because I was so ready for it. Percocet helped with the anal discomfort for a few weeks, then the pain just went away. I could sit from the start; it was the fatigue that limited it and I needed to lie down. Some leaks as my stoma changed shape as the swelling in my belly went down, but everything is under control now and it's a relief to not be a slave to the j-pouch anymore. No more meds, no more guesswork, I'm eating healthier than I have in years, and I have my color back and five extra pounds. My stoma and I are good friends now. It was the best decision for me. If anyone has questions, I'd be more than happy to answer.