My 17 year old son had his takedown 6/2016. Did great his first year, but now has a stubborn case of pouchitis. He tried Cipro for 1 week which did not help and then Cipro and Flagyl for one month which did not help. Going to GI today to ask about Rifaximin and possibly Cortifoam as the next step to try. Has anyone had no luck with Cipro or Flagyl but then found that Rifaximin did the trick?
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It’s sure worth a try, Roberto. Did the GI rule out things like C. Diff or ischemic pouchitis? Have you introduced VSL at a substantial dose? VSL makes Cipro and Flagyl work much better for me.
Good luck!
He takes the VSL capsules. Although Dr said to wait until he is off the antibiotics and use it for maintenance since the abx will kill it anyway. Then he said he will prescribe the double strength (hopefully ins will cover it). He did not think a cdiff test was needed. What is ischemic pouchitis?
Ischemic pouchitis is inflammation caused by a reduced blood supply to part of the pouch. It has a characteristic appearance (to experienced eyes).
VSL at a high dose helps me even when I’m on antibiotics. I take the VSL with breakfast and dinner, and the antibiotics at bedtime. Spacing them well apart reportedly helps. I take 4 DS packets per day, which costs a lot. My insurance now covers it, after a year-long battle.
How did you ultimately get it approved?
How did you ultimately get it approved?
After exhausting my appeals to the insurance company, I went through my state’s insurance regulator. The insurer fended me off for a while by treating it as a *coverage* appeal, but once I was able to force it to be treated as a question of medical necessity they ultimately caved. They even wrote up a very appropriate policy about covering it for other J-pouchers in the future. It took over a year and plenty of persistence. An evidence-rich letter from my doctor helped. I’ve posted all of this previously, including the letter and the insurance company policy, so a search on this site should turn up the details. Good luck!
Xifaxin is a great antibiotic if you can get coverage for it. I rotate it with cipro and flagyl and tinidazole. The only problem is my insurance only covers limited quantities of it so it’s only good for about a half dozen rotations and then on to the others. The other positive is that Xifaxin isn’t systemically absorbed and thus gives your skin bacteria a reprieve, lessening the chances of yeast infections and warts and other skin issues due to prolonged or chronic antibiotics usage.
My cost is $60 for 60 pills (1 month supply). How many per day do you take? How long have you been on it? Cipro or Flagyl didn't help my son. He's been on Xifaxin for 4 days and feels better already. I'm cautiously optimistic. I do not know how long he will stay on it yet. I am hoping not it's not permanent. When you go off the antibiotics your pouchitis comes right back again?
Most people do fine when they stop antibiotics after a couple of weeks. Some need a longer course, and some of us can’t stop them at all.
Xifaxin is the only antibiotic that helps me. I am usually on a 10-day course three or four times a year.
I have had a chronic low-level pouchitis infection for the past year or so. I've been doing repeated courses of cipro/flagyl, at a lower dose. Sometimes I take VSL, sometimes I don't (right now I'm sort of broke, so I'm not taking it). I was off the antibiotics for the entire month of November because my guts were cooperating, but then I started having symptoms (increased frequency, cramping, etc.), got dehydrated, went to Emerg to get a fluid buff, and went back on the cipro/flagyl. It's been over a week since I've been taking them and I still feel pretty crappy. My guts are slowing down, but I've been in a persistent brain fog, my lower back is killing me, and my ears have been ringing. It's hard to tell which things are the inflammation and which are related to the treatment. But all those symptoms I describe are known side effects of cipro as well. I have an appt with my GI in Feb, and I fear I'll have to find an alternative. I'll have to make a special request with my insurer to have Xifaxan covered, if I want to try that.
I keep telling myself this merry-go-round is better than the colon that was poisoning my body and likely would have killed me, but sometimes I wonder...
It can be very hard to figure out side effects when you combine drugs. Effective treatments are very, very precious when dealing with chronic pouchitis, so figuring out exactly which drug is causing the problem(s) is worth the trouble. I don’t see ringing ears (tinnitus) as a listed side effect of Cipro or Flagyl. Did you have any of these symptoms before you started the Cipro/Flagyl?
If I were you I’d get started on the request for Xifaxan approval.
Like I said, a lot of these symptoms seem to be characteristic of both the condition (inflammation in the pouch and consequent dehydration) and the treatment. No, I've never taken them separately. My dad has a pouch too, and he takes flagyl alone, I believe, when things flare up (rarely, for him).
I was initially reluctant to go on cipro/flagyl for this increasingly chronic issue. I know the dangers of antibiotics generally, and cipro/flagyl specifically. But they work(ed), so I was willing to take the risk.
Ringing in the ears is noted in the side effects list for cipro in drugs.com. Also if you do a google search for cipro and ears ringing, there is some anecdotal evidence. No, I don't believe I experienced that before the long periods of cipro this year.
With every medical intervention I've tried since I got my UC diagnosis, if there was a nasty side effect to be had, I had it. I guess I'm just lucky that way 
My insurance company was on strike until just a few weeks ago, so getting information from them was very difficult. I'll make the inquiry about Xifaxan.
