I see you're in Canada. Isn't there some process to enable you to try a biologic medication, even if they're careful to make sure that it's strictly necessary?

Hi Scott. I am not interested in biologics.I do not like the side effect profile ie. lymphoma. I have a chronic lung disease for two years now as well and don't want my immune system further compromised, thereby risk of lung infection.  My GI is sending Hydrocortisone suppositories to the pharmacy to try. My worse problem is the last few inches; mostly my anal tissue. I don't think it is cuffitis; no bleeding apart from my raw perianal skin. Very pai full down there.

Hi,

So sorry to hear about all your problems. I too suffered with pouchitis.  I have used Proctofoam in the past for anal pain and it worked well. I think there is a generic here in the states. VSL is expensive, although I do take daily. I found relief with Budesonide. I took 9mg daily for a couple months before I weaned off. I also eat Metamucil wafers daily.

I wish you all the best!

@GEB56, I've  got the same symptoms as you do along with frequency/leaking & occasional bleeding all from inflammation of  the "Anal Transition Zone", and not cuffitis because mucosa was removed, so no "cuff."  The rest of my pouch has no inflammation.

I've been juggling antibiotics. Like others here I found relief with Cipro but then it stopped working.   Rifaximin (ordered from India through one of your Canadian pharmacies) seemed to work until it didn't.  

Desperately need the relief of antibiotics, though. When they work I almost forget I have the pouch.  Without I am pretty miserable and lack of sleep makes me dysfunctional during the day.  So back to Flagyl, which has worked recently but can't stay on it long term.

I was just prescribed Tinidazole, a next-gen version of Flagyl.  Doctor says this can be used at low dose for maintenance. Still waiting on the pharmacy - hoping insurance covers it & that works.  

I've wondered about cortisone foam or suppositories.  Please let us know how it goes.

Hi AMB.  Sad you have had simar issues, but feel better that I. Not alone in my battle.  I will be picking up Hydrocortisone suppositories today at local compound pharmacy and will let you know how that goes.  In the meantime, I am partially improved on Augmentin.

Thanks for your reply to my post.  Much appreciated.

Sorry to hear your really struggling, please read Physillum Powder. Maybe that might help you.
jpouchlolly

Thanks. I use psyllium powder three times a day and think it is a great product. Gives my stool some form/bulk.