Mucosectomy for chronic pouchitis?

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DZAtl

I've moved and have started seeing a new gastro. I've had chronic pouchitis for about 3 years and have mostly been on flagyl with bouts of prednisone suppositories. Right after I got here a gastro told me to take cipro orally as it's just as good or better than the suppositories. After a couple of months i developed pretty bad pouchitis and have been on prednisone supp for 2 months to get it under control. I'm now about to go back onto flagyl suppositories.

At the same time my gastro suggested doing a mucosectomy to strip away the 1 inch of original colon mucous layer that's still left - where the pouchitis gets bad. Has anyone else had this and are there any lingering effects?
Thanks

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Scott FMember

I thought mucosectomy was for cuffitis rather than pouchitis. What am I missing? FWIW, prednisone suppositories would also be more commonly used for cuffitis. Are you sure you don't have cuffitis?

2/10/149:15 AM

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clz81Member

Agreed...this treatment seems more in line with cuffitis.

2/10/1410:28 AM

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DZAtlMember

I have both. Much of the action is at the cuff with strictures at times (need digital dilation). But also the pounch is inflamed. But it's generally more active in the cuffitis. So yes it'd be for the cuffitis - sorry for the confusion.

Does anyone know if this actually helps and are there any lingering effects?

2/10/1412:56 PM

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Jan DollarModerator, RN, retired

The main complication with mucosal stripping or pouch advancement is damage to the nerves of continence, meaning possible permanent incontinence. So, be sure that the surgeon that would be doing this surgery is experienced and skilled for this procedure. In the right hands, it can be quite successful and actually salvage a pouch that is headed for the scrap heap!

Jan

2/10/141:37 PM

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AllyKatMember

I had it done, I still suffer with pouchitis.

2/19/145:56 PM

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boy's momMember

Ally Kat,
Did the pouch advancement help you at all? Do you regret it? Thank you.

2/19/149:32 PM

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dtmackMember

I had the process done at Cleveland Clinic.

If you would like specific info on the surgery, let me know and i will elaborate as much as possible.

Mine was completed due to finding a small tumor during step 2. They wanted to make sure they got it all during removal.

The surgery was extremely painful, but i have had zero lingering effects.

2/20/149:23 AM

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AllyKatMember

I have always had to be on some drug or another. See my signature. In and out of remission. I guess some people do well with it otherwise they would stop doing it? I'm not one of them and in looking back although I really don't want the bag, my health and life would probably be so much better. And now I'm totally terrified of any more surgery. I'm sorry your son is going thru this.

2/20/1410:23 AM

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