Long story short originally diagnosed with UC when I was 16. I've had a total colectomy which led to my jpouch. I'm 23 now and about 6 months ago got diagnosed with the good old Crohn's disease. It's been a battle since but one of my biggest complaints is the severe watery stools. Nothing thickens my stool. I've tried Metamucil, and every kind of thickening food known to man. However, Everytime I take metro/cipro my stools thicken and become less frequent but, when I go off them we are right back to the explosive gassy watery mess. Can anyone explain to me what is going on? My doctor doesn't listen to anything I say and the closest Specialist is in Chicago about 4 hours away.
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Sounds like a classic case of pouchitis to me...seems to be somewhat antibiotic resistant in the sense that while you are on them you are fine but it does not cure it...your pouch is becoming dependant on them to function properly.
You may need a separate G.I. to follow you for this. Not all surgeons do great follow up.
Sharon
I agree with Sharon, though I'd call it "antibiotic dependent" rather than "antibiotic resistant." It doesn't sound (to me) like Crohn's has anything to do with these symptoms. I'd suggest a few things:
1) Try to find a gastroenterologist who can spell "J-pouch"
2) See if just one ot the two antibiotics is enough. Cipro alone once daily took care of me for years, though I've had to add Flagyl in the past year or so.
3) Even before Cipro, a potenty probiotic called VSL #3 DS was all I needed for a couple of years. It's prescription-only (at least for double-strength) and expensive. Insurance sometimes covers it.
4) If you need to be on an antibiotic long-term many docs recommend rotating three or four antibiotics in a cycle every two-three weeks. If you are able to find several that work for you it's a good method. I had a smaller selection of effective one than some, so I've just stayed on what works. Common choices include Cipro (or Levaquin, its cousin), metronidazole (Flagyl), tindamax, augmentin, Xifaxan (expensive!).
5) Some people can significantly improve chronic pouchitis with a very-low-carb diet. It's worth a try, if you can tolerate it. Just reducing sugar might help a bit.
6) There's an excellent pouchitis article linked to from the very top message on the Pouchitis Forum here. I suggest you print it out and give it to your doctor. Only the best 25-30% of docs will read an article received that way, but you'd like one of those taking care of you.
7) On antibiotics my health is good and my pouch functions perfectly. I can teach martial arts, scuba dive, and do whatever else I want *comfortably*. Off antibiotics my symptoms are like yours. It's no contest.
Good luck!
I've had my J-pouch since 2002. My bms are very watery and I like them that way as long as I have good control.......I do, unless I have pouchitis which is a very infrequent occurrence for me. To me, watery bms are easier to pass. They are no where as watery as they were when I had an ileostomy for a full year. My bag was constantly full! I don't take anything to thicken my bms or control how many I have. I just automatically empty my J-pouch whenever I need to urinate. No biggie!