Biologics

Ulcers in the pouch tend to be a sign of significant pouchitis. There is a murky relationship between pouchitis and ulcerative colitis, but they definitely aren’t the same thing. Ulcers on the rectal cuff, though, seem to be the same as UC, but that’s called cuffitis rather than pouchitis. If your symptoms are responding to Cipro then there’s a good chance the ulcers will respond, too. That’s how it went for me. In most cases if the treatment is adequate the antibiotic can be stopped.

Unremitting pouchitis can be a cause of pouch failure, and pouchitis is sometimes treated with biologics, but both of those are “what if” scenarios. Right now you seem to be on the right treatment, and it seems to be working.

I have had ulcerated areas in the Pouch for 25 years. Your fears are unfounded. Whether you call it Crohn’s or Pouchitis makes no difference as the treatments are the same and all that matters is how you respond to them. I used antibiotics alone for around 22 years and over 3 years ago added Remicade which really improved things. I should note that I have probably had, in 25 plus years, two scopes that didn’t show ulcerations. Clean up your diet, see how the antibiotics work, get scoped regularly, and if it doesn’t clear then incorporate biologics. You will not likely lose your Pouch unless you do not respond to treatment and dietary changes, and most with same these issues do respond to treatment, so it’s premature to be worrying about Pouch failure.

Thank you for your response.  Not quite as worried. Am going to try and cut the sugar, and moniter any carbohydates.  Does anyone know of a good dietary site on diet for people with pouches.  I know it is mostly trial and error but would like a strong starting point.

Mary

The UMass IBD-AID diet is the only diet out there developed by medical professionals (at UMass) specifically for persons with IBD:

https://www.umassmed.edu/nutrition/ibd/ibdaid/

Some of the recipes on that menu sound delicious. 

CT

Thank you for that web site, that is exactly what I was looking for, will start on their recipes.

Mary