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Hi All,

I’ve had my pouch for around 8 years and have struggled with pouchitis for the majority of that time. I’ve had a call with my nurse following a recent camera test on my pouch and have just been diagnosed with cuffitis following analysis of biopsies by a histologist  

im responding to prednisolone suppositories but always seem to flare again when I taper off. I’ve been told I can’t rely on them forever and if I flare again this time will need to be referred to a surgeon to look into my options. These include permanent stoma or a pouch resection. My question is has anyone had cuffitis and achieved long term remission? Or has anyone had a pouch resection? And can they give me any information on the process and recovery etc.

Any information would be much appreciated



(based in the UK)

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Hi, @AliceMay. Have you tried rectal mesalamine, such as Canasa suppositories or by enema? It can take a while to work, but if you respond well to that you might be able to taper the prednisolone successfully. I’d much rather have mesalamine side effects than prednisolone. If you really do continue to need steroids long-term you would likely have fewer side effects with budesonide (Uceris rectal) than prednisolone. The drug brand names may be different in the UK.

The surgical treatment for cuffitis is pouch advancement surgery.

I’ve read about pouch advancement - fortunately for me my experience is vicarious. It involves (more or less) detaching the pouch from the (troublesome) rectal cuff, removing the rectal cuff, and hand-stitching the pouch to the anal canal. It’s often accompanied by a mucosectomy, which is scraping off the inflammation-prone mucosa. This is a technically difficult procedure to perform well, so if at all possible it’s best to find a way to obtain the services of a surgeon with plenty of experience doing these.

@AliceMay posted:

Hi Jan,

Pleased to hear remicade worked for you! I tried it a couple of years ago but had signs of anaphylactic shock on my second infusion so had to stop, very frustrating as I’d heard it can work really well.



@AliceMay Remicade is the biologic medication most likely to create an allergic response, due to the mouse antibody it’s derived from. That bad reaction to Remicade sounds quite scary, but probably wouldn’t occur with a different biologic. Trying other medications is less risky than surgery.

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