So I had my J pouch for 3 years and it worked fine. I always ate and drank whatever I wanted. If I had too much candy, junk food, soda or alcohol then the next 24 hours were bad. I went to the bathroom a lot and urgently but after a day it always passed as I resumed to a normal diet. At one point, at a regular check-up my doctor saw I had pouchitis. I got ciprofloxacin, did the 2 week regiment and badaboom, I was back to normal for months until next time I might have overdone it with dietary junk of some sort.
The year 2018 has been a Low point. I have had to go on cipro before when I had pouchitis but throughout this year the bouts came more and more often. Long story short, now I take cipro for two weeks (and it even takes longer to kick in than before - at the beginning I was going to the bathroom like a pro within hours) and within a few days I'm on the crapper constantly until I give up and start taking cipro for two weeks.
The reason I haven't been able to take any other course of action than cipro has been because I have been traveling the world most of the summer. I have not been able to get a hold of my doctor at home.
I have had rashes this year in different places which I figure is a side effect of the constant bombardment of antibiotics. The rashes went out of control a couple of weeks ago and something made me believe it was Candida. So I went to a back alley pharmacy i Taiwan and got a fungal cream and it worked like a charm on my rashes (but naturally it did nothing with the pouchitis). So maybe the pouchitis is fungal?
Of course during vaction times it is hard to stay away from junk food and alcohol. But it really bugs me that I was able to handle it just a year ago but now I think it might be what kick starts the pouchitis again everytime after just one course of junk or one drink of alcohol. Can somebody explain this to me?!
So right now, my main issues are:
- Rashes... my whole body is itchy. The worst is probably the butt... whatever I do; fungal cream, my usual go to barrier cream, lidocaine cream or any type of cream has no effect and it has been weeks now.
- Recurrent pouchitis - comes back within a few days, but the nature of it is still unknown because I have not been to the doctor...
- Diet seems to matter a million times more than a year ago (seriously WHY?!)
- Anxiety and worry; can the doctor do anything to kick recurrent pouchitis, besides experimenting with different antibiotics? I find very little about success stories on the web
Long post, but if somebody takes the time and reads it and offers some useful advice I will be ever so greatful!
- A fellow J-pouch warrior from Sweden