Hi everyone,
just found this forum today and read through the pouchitis section for hours. Yet I've just been part of some smaller local german facebook groups, it seems that german guidelines for fighting pouchitis act slightly different. I hope to get some new advise here.
Well, my story:
- German, 24 yrs old
- UC started in 2010
- soon became a Pancolitis, nothing worked
- ostomy surgery in October 2013
- pouch surgery in April 2015
Just got my first Pouchitis 1 week after I was discharged from hospital. Surgeon told that is quite normal after the surgery. Had to take Flagyl (1-1-1) and Cipro (1-0-1) for 4 weeks. I was feeling so well after 2 oder 3 days, had about 4-5 stools a day and no side effects from the ab. I started taking VSL 3 times a day.
Everything was quite fine until mid of June, when I got slightly worse. But not too bad. As I had planned to go to China for 5 Months (for work) I visited my surgeon once again in August, just before my departure in August. He was able to see a moderate pouchitis again and prescribed me flagyl and cipro again, as well as an additional 2 month supply, .. just in case. I also took lots of VSL with me.
Well, the first days in China have been quite awful. Pouchitis didnt change, it appears that I just got some side effects like nausea, tiredness, dizziness, feeling faint, and no hunger. I changed Flagyl myself to twice a day, as I hoped this might reduced my nausea. I lost about 5 pounds during the first weeks. Well, even tough the pouchitis didnt get better, it was "ok", I could live with it as I did in Germany as well. About 8 stools a day and the ability to hold it for a while.
As it didnt help and side effects were so bad, I stopped taking both after 3 weeks. Than I just become worse after a week or so and I started taking them again for nearly 5 weeks. I fought everyday with the side effects, and pouchitis was..well, tolerably, but not for everytime.
Mailed my surgeon and got Xifaxam my air mail. Took 400mg three times a day for 9 days now. No improvement (as well as fortunately no side effects), I have even become worse. Tried to combine it with Cipro 3 days ago, which made my go out of action totally. Went kind of in a depressive mood, nausea, headache and pain in my back and chest. Was scared it might be my pancreas (had troubles earlier with biologics I took because of UC). But I read about those side effects belonging to Xifaxam. I am bound to bed right now.
Well, what now..
Just ordered Pepto Bismol online (imported from Canada, for an insane price), after I read of it in this forum. Will get it in a few days. Also mailed my surgeon, who will probably answer the next 2 days.
What I do have now : Flagyl, Cipro and Xifaxim
- does it make sense to continue taking Xifaxim, as it did not improve my pouchitis the last 9 days
- does it make sense to try another AB alone? like just flagyl, and no combination?
- can I just stop taking Xifaxim right now and start taking another one?
I now it is impossible to give me any advise, as everyone is individual, but maybe you guys can just tell me from your own experience.
If I wont get better the next day, I'd have to stop my work and go back to Germany, which is of course leading to some problems concerning costs takeover by my employer. In 28 days I'd be finished and start a 1 month tour through asia, which is all payed yet.