It's interesting to hear about your life with a J-pouch; I recognize so much from my own life!
I got Xifaxan and it works well on my pouchitis! So that's great. Now I just have to convince the doctor to prescribe some other antibiotic too to rotate with next time I see him.
I did see on the forum that people talk about how expensive Xifaxan but Jesus I couldn't imagine! It's equivalent to 300 USD for 56 pills in Sweden. Fortfunately for me the government subsides medicine costs (and other aids such as stoma bags etc.) for everyone. So there's a cap of about 200 USD per year per person that you have to pay yourself and everything that exceeds it is paid by the government. So say I take a couple of rounds of Xifaxan per year it can easily cost more than 1000 USD. That is 1000 USD that Big pharma extorts mostly from the government. I do know that there are medicines that cost much much more but still... this is an antibiotic, no custom made miracle drug. I have no words...
It still doesn't seem to have solved my butt burn though but we'll see what happens after two weeks of calmer bowel movements. I have a theory. I have suspected the irritation to be because of fungi, ileal content but maybe it's nerves?
I remember my first surgery, my total colectomy. When my scars were healing they eventually started to itch and tickle. I was told it was the sensation of nerves growing back together after being cut. So a couple of weeks ago, when I was in Japan I had a some butt burn because of pouchitis, many bowel movements and many wipes. I was very soar to the point where water would sting like hell. The reason I mention that I was in Japan is because I learned that from trying the water spraying function on one of those super hi-tech Japanese toilets form the future. Shower water would also sting. So maybe the skin was very raw to a point where the nerves would have been damaged. In this scenario the nerves are now growing back and that is what causes the itching...
I know. VERY far fetched... but maybe? What do you guys think?
P.S. many thanks to everyone on the forum who's there for anyone with J-pouch related questions! This means so much for me and I am certain that countless people have found important answers, guidance and encouragement in times of need and difficulty.