Fingers crossed for you. I figured this was the case because of how resilient the inflammation in your pouch has been. The previous time you were scoped, it was while you were on antibiotics. It will be interesting to see how the FT works out for you - and thank you for participating in the trial. Perhaps you will help to pave the way for FT as an approved treatment for pouchitis. Now that you have the diagnosis, you have more options, whether doing longer-term antibiotics with breaks, or biologics, or perhaps something like uceris. It's not what we wanted to hear but knowing is the first step to healing. There are a lot more people on j-pouch.org who may have suggestions. I think for holding in the enemas, when you're at your worst, often prednisone was the only thing that would get me in a shape where I had a chance. When it was moderate, breathing and relaxing with the best thing I could do, but it's really hard to retain anything in an inflamed bottom.
Thank you NSSG it has been a long long road and I am willing to try almost anything. If this doesn’t work then I will go straight to biologics.
I remember you talking about
it would be interesting to see what my scope showed once off the antibiotics... Well I guess we got the answer. Because while I was on the antibiotics he said I only had cuffitis about
5 cm inflamed now it’s pouchitis. Yet I was in more pain during that time compared to now.
Will let you guys know how it went
Thanks for the tips on breathing and relaxing I will certainly try my best.