I have had a pouch since 2001. I had a refractory case of UC in 2000 which responded to nothing, never had remission, colon ruptured, basically went from diagnosis to emergency surgery in less than a year. Had successful surgery in 3 stages. I initially struggled with chronic pouchitis requiring long term Cipro/Metro, but have not had a flare up in 8-9 years. Had a routine scope yesterday and what was characterized as moderate serpentine ulcerations in the pouch inlet (proximal limb of pouch) were detected and biopsied. The rest of the ileum, the rest of the pouch, and the rectal cuff were all normal in appearance. The doctor said theres always a possibility of Chron's even though the original diagnosis was UC. I am awaiting biopsy results but am terrified at the thought of losing my pouch if this is in fact Chron's or worse. I have had zero symptoms of pouchitis and no evidence of blood in my BM's. Does anyone know if pouchitis can present cliinically like this without symptoms? Anyone with a mature pouch ever had finidngs like these? Not sure how long it will take to receive biopsy results, but needless to say I'm anxious and praying that this is not the beginning of the endo of my pouch.
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You aren’t going to lose your Pouch. Answer is yes it presents clinically like this with either a Crohn’s diagnosis or an uncertain diagnosis and no or minimal symptoms and life goes on. The chances of the biopsy results being positive for something other than inflammation are slim. I do not understand how or why people consistently come on this board and equate a Crohn’s diagnosis with the sky falling and loss of the Pouch. It is nonsense. You treat the inflammation and live with it. I have been doing it for 25 plus years and the last 10 under a Crohn’s diagnosis. Nothing has changed! BTW I also have scattered inflammation in the neoterminal ileum, the J Pouch inflammation mostly cleared up after I started Remicade. Remicade may be in your future but loss of the Pouch is not.
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As CT wrote, the biopsies are unlikely to be informative. It’s worth trying to get the inflammation under control, but the fact that you feel good is much more important. Like you I’ve been on Cipro and Flagyl for a long time; I recognize that this combination may fail at some point (later better than sooner), and I’d have to find another treatment (such as a biologic). That’s true regardless of the underlying diagnosis. Ulcers in the pouch aren’t generally evidence of Crohn’s, anyway. I don’t think you’ll lose your pouch from asymptomatic ulceration.
Thanks for the reassurance.
I’m on Entyvio for 3 years and I still have my 19 year old pouch, pouchitis since day 1! No you won’t lose it. Lots of things out their now.