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6 replies

What is going on with me?

G grandmaof1Member
I am about a year a half out from my take down and was doing pretty good I think. I am still on all my meds. But lately I have had lots of issues. No cramps but noisy stomach right after I eat and the urge to poo and the pain that goes with it. I can't go pee without pooing. I don't get it. The pain is something else when I go. I have to then get on my heating pad for relief. I do also use my creams on these bad days.

I have a scope in October. But I can't figure out what is going on. I hate eating now and yet I am starving. But we have all been through this, right? I have had pouchitis since my second surgery and have been on Cipro one tablet a day. I am wondering if that is done working. Does it ever get better where you won't need meds and you can live a normal life? Am I still in the new phase? My surgeon told me at a year is what I will be for the rest of my life. Well that wasn't great news. Any ideas? Or is anyone else having issues? Sure can be depressing.

Thanks so much. Any help would be great. Anything....
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Scott FScott FMember
The scope should tell whether you have active pouchitis. Some folks change the antibiotic every few weeks to maintain effectiveness. I have to stay on Cipro, but that doesn't bother me as long as I feel good. I hope you have a good gastroenterologist you see periodically - that usually works better than seeing a surgeon to manage medicine (as long as the GI knows about J-pouches).
Jan DollarJan DollarModerator, RN, retired
I could be worsening of pouchitis. Sometimes when you are on a low dose of the same antibiotic, it does not suppress the bacteria enough to take care of the real bad actors, and actually can promote mutations to resistant strains. Also, constant exposure to antibiotics can cause proliferation of pathogenic C. difficile (that produces damaging toxins).

Call your GI and see if you should be tested for C. difficile before your next visit. Cipro may be the exact thing you should NOT be taking if you have this.

Jan Smiler
Jan DollarJan DollarModerator, RN, retired
Yes, call your GI. He may suggest increasing the dose of Cipro. If your symptoms stay the same or get worse, then more of a chance it is C. diff. He might have you start Flagyl instead.

Anyway, there are multiple ways to approach this, and best to touch base with your GI, even if it is just to tell him what is going on and what you planned to do.

If you do decide to stop the Cipro, I'd give it a few days before starting the Pepto Bismol, just so you can tell what effect each change has.

Jan Smiler

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