I think I am having pouchitis again. The xifaxin is helping but the gas cramping pains are still painful and annoying. Any one have any food intake helpful hints? And has anyone had any weight issues. I think I am the only one who has gained weight over the years vs lost weight?
History- I had my surgeries when I was 16. I am 33 now. I was just fine until I was 29. Then I met pouchitis. It has been a bumpy road
since. I am great and then I am randomly in pain. The bathroom rules my life. But I am so grateful to be healthy other than this. I just wonder what else can I do to prevent this from happening.

I've gained lots of weight since surgery. I guess I don't have much will power.

When I have lots of gas pain, it means there is bacterial overgrowth and a short course of Flagyl sets me right. I would suspect that the Xifaxan is not doing the trick for you. Have you tried adding probiotics to your regime? You shouldn't take it the same time as the antibiotic, but it may help balance things out.

Jan

This is my first post here. I have had my pouch since 2005 and did well for the first year. I have had terrible BB and itching that brings me to tears but I have been reading a number of the posts about pouchitis and wonder if that is part of the problem. Last check up a year ago - my surgeon said my pouch looked "beautiful." Ha doesn't feel beautiful.However the terrible gas - not only painful but embarrassing when trying to be in social or work situations ..gurgles, undescribable noises, pain and pressure that takes my breath away...and the continual leakage. Could these b symptom of pouchitis. Are symptoms of pouchitis the same for everyone or it is different for everyone? Starting here because my doc is very hard to get in to see.

Hey Nancy,
What you described above about your symptoms of gas, etc. (except for the leakage) that is my exact situation. My surgeon said the same thing at my pouchoscopy last year and kind of dismissed my symptoms. My GI doc is perplexed at this point. I'm actually going to do a capsule endoscopy in the near future to see what's going on in my small intestines above the pouch, just in case. I've also noticed a lot of people on this site talk about the probiotic VSL #3 DS. I'm on one now that is pretty strong which sometimes helps. However, this new one sounds like it may hold some great possiblities, so I think I'll give it a try in the meantime. All this is to say I feel your pain and I hope someone can give us a suggestion.

Keep trying (with your doctor) different antibiotics and maybe try probiotics. I hope that you will eventually find the treatments that work for you. I have not been able to stop taking Flagyl for more than a month, and it's been that way for at least 5 years. I too thought Xifaxan would be the magic bullet--it worked for a while and then just quit.

As for the weight gain, I'm with you on that too. I've never really lost much weight except in the hospital.

I wish I could take Flagyl and see how that helps, if at all. I took it once a few years ago before my j-pouch surgery and I could only tolerate it for a few days due to nausea. I'm glad it seems to work for you though.

I changed my "painfree" name to willi18; especially since I have not been pain free for years! The gas pain is intense and the accidents at night are so bad. I am not on any meds now. I will call my doc on Monday to get on an antibiotic and entocort or something. The VSL3 did not work for me at all...nothing.
The gas pain and urgency ( especially at work) is so annoying. The grumbles are so embarressing, I just say I am hungry during the meetings all day long. It bites!!!
Any luck with gas meds?????
I feel like it is getting worse through the years. My kids know that mommy has belly problems. I am in the bathroom so much. I think I have like 4 fissures at this point? I have to lay down on my stomach to pass the gas. That is the only way? Does that happen to any one????