I have had my pouch for 16 years now. In that time, I have had chronic pouchitis and off and on cuffitis which are treated with rotated antibiotics and, more recently, Humira. I have developed an allergy to mesalamine. 

I have been having issues with the cuff off and on and my doc says I have ulcerative proctitis. This past two months, it has escalated and I had a scope yesterday. The pouch looks good, but my gastroenterologist referred me to a colon-rectal surgeon due to a polyp and she said something about taking out the mucous layer or ????? of the cuff. I kind of panicked and did not remember exactly the term she used. I did not know if she was talking about the cuff or just a surface layer. No clue. My understanding is that removal of the cuff leads to incontinence. Even though I hated the bag and had a lot of issues with allergies to products, I would prefer the bag to incontinence. 

Any advice or knowledge would be greatly appreciated.

I consult with the surgeon next Friday and should know more by then. It would be nice to go in with some first hand knowledge from those of you who have been through it.

Original Post

The procedure is called a mucosectomy, and it removes the lining (“mucous layer”) from the cuff. It’s not risk-free, and does sometimes reduce continence, so you ought to have a frank conversation with the surgeon about the likely outcome and the risks. A more aggressive surgery for uncontrollable cuffitis combines mucosectomy with pouch advancement, which removes almost all of the rectal cuff and pulls the pouch up to the anal canal, where it is attached using a delicate and technically difficult hand sewing technique.

I hope all goes well.

Thank you, Scott. I remembered the mucous word, but googling it didn't help. We are dealing with pretty specialized stuff.

What did you find out.  I have the same problem with what they call cuffitis at my GI office.  Or he has said UC in your cuff.  I’m so miserable.  I’d love to know what you found out please.  Any information would be great.  Thank you.  

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