You'll get the best overall result if you can reduce the gas. Do you drink soda? Eat quickly (and swallow air)? Eat beans, cabbage, or their cousins? Is it possible that the Chinese herb is increasing it?

I wonder if a course of Cipro might reduce the intestinal flora that produce the gas. It doesn't sound very much like cuffitis to me, but there might be a pouchitis component. SIBO is even more likely, based on what you're describing. A couple of months of doxycycline cleared that up for me.

I wouldn't guess that the Remicade is the problem, but that's just a guess. Good luck!

Thanks for replying Scott, I appreciate your words of wisdom. 

I don't drink soda or even eat ANY vegetables very often due to my crohn's, they don't seem to agree with me. Just started the Chinese herbs, so I know it's not that, (I expect things to happen immediately).

If it were pouchitis, wouldn't the Zifaxan take care of it. The doctor also had me on VSL for a few weeks to see if it was SIBO, nothing.....could it be total stress? I go to see my GI on Thursday, so I'm hoping that he can figure it out, but, and I'm not thinking positively and I hate when I do that, I find it unlikely that he'll have a clue. Doesn't cuffitis produce similar symptoms to pouchitis? It will be interesting to see what he has me do this time. 

Thanks again for your response.

Xifaxan helps some people with pouchitis, but it did nothing for me except lighten my wallet. I've not heard of VSL as a treatment for SIBO. In any case, I'm pretty confident that the fact that you didn't get better on VSL says *nothing* about whether it's SIBO or not. Anxiety can sometimes cause people to swallow plenty of air, but you should be able to pay attention and notice if you're doing that. Cuffitis doesn't have to bleed, but it also doesn't increase gas. Can you tell, do you think, if you've got increased amounts of gas, vs. increased sensitivity to normal amounts of gas?

You probably are on the wrong antibiotic. Sometimes you have to try different ones, or take two together. Xifaxin is new and expensive, but that does not mean it is better. 

I do get increased gas with cuffitis, but I probably have pouchitis at the same time. 

Jan

Thanks goodness the doctor gave me samples of both the Xifaxan and the VSL....there's no way that I would be able to pay the $2,000 amount for a month for the drug. I'd be especially cursing if it didn't work and it hasn't. What a waste of money.

I don't think I'm swallowing air in the middle of the night. That seems to be when it hits me quite often, so I don't if that's the cause, and I don't thing my increased sensitivity to the gas is waking me up either. 

Interesting, Jan, that you said you do get gas with cuffitis. I hate having to go on another antibiotic, because I'm constantly getting yeast infections when I do, but if that's what I have to do, I'll do it. I can't deal with this pain any more, have to many other problems to deal with.

Thanks so much for your input, I don't know what I would do without the support of this group. I don't usually contribute to people's questions because I don't know the answers, but I love each and every one of you and always feel so sad when you are going through the daily life living with a pouch that does not function well. 

I recently met a guy who had his surgery a month after mine, same surgeon, same hospital and he doesn't take one drug or even go for scopes any longer and feels absolutely great. How I envy him! Wonder what it would be like to feel good every day?

Hi Mema,

not to give you an over-simplified answer, but I had a great luck reducing my gas and discomfort by doing the FODMAPs elimination diet. I worked with my GI's dietitian and was able to identify which foods can really make me uncomfortable. I realize there's more that might be going on, but it might help some. Best wishes to you!

Hi Iholdem,

With me it doesn't seem to matter what I eat....personally I think that stress is the major factor in my case, although not to say that I don't have a finicky pouch, I know that I have had one all along. Just wish they could figure out what to do for me since I can't get a full night's sleep....was up 4 times during the night, and until I can empty my pouch fully, the gas just keeps on coming with little output.

Going to see my GI today, and have the feeling that he will put me on an antibiotic, but we'll see. I'd take poison at this point if it could make me lead somewhat of a better life.