Sounds like the low dose of cipro isn't cutting it.  Speak to your doctor about increasing dosage and adding either flagyl or tinidazole, which are both in the same family.  Using this cocktail gives you the broadest spectrum possible of coverage on bad bacteria.  Cipro and flagyl/tinidazole are from different antibiotic families.

Other treatment possibilities are Entocort, pentasa, cortisone enemas, pepto bismol (between antibiotic dosages), elimination of sugar and carbs from your diet, and if none of the above work, biologics (Remicade, Entyvio, Cimzia, etc.) Good luck.

You can also try xifaxim and  Augmentin. Are you taking any sleep aids?  This. could also cause a very deep sleep w the associated issues you are describing. 

I agree with the above suggestions. In addition, you could try Lomotil or Imodium at bedtime, and/or a small fatty meal at bedtime (like a spoonful of peanut butter). Good luck!

Just a question, Scott...

Why the small fatty meal at bedtime? I'm scared to death to eat anything after 7 pm!

CTBarrister posted:

Sounds like the low dose of cipro isn't cutting it.  Speak to your doctor about increasing dosage and adding either flagyl or tinidazole, which are both in the same family.  Using this cocktail gives you the broadest spectrum possible of coverage on bad bacteria.  Cipro and flagyl/tinidazole are from different antibiotic families.

Other treatment possibilities are Entocort, pentasa, cortisone enemas, pepto bismol (between antibiotic dosages), elimination of sugar and carbs from your diet, and if none of the above work, biologics (Remicade, Entyvio, Cimzia, etc.) Good luck.

Thanks for therecommendations. I already take entacort, 2 immodium 2x a day. Flagyl never did much for me and I think may have contributed to my peripheral neuropathy. Pepto bismol does help. I willtry to reduce my carbs and sugar intake. I hope I can get some relief soon

Fat in the stomach slows down the GI tract naturally. As long as the volume is small, many (most?) people won't experience appreciable increase in stool volume overnight. It really does work well for some folks, so it's very likely worth the experiment. 

Maybe try another bowel thickener like benefiber?  I never had much luck w Imodium or lomotil. Some people eat marshmallows to slow down transit but they are loaded w sugar. Sugar definitely aggravates my pouchitis. 

When was the last time you had a scope? Are you sure you don't have inflammation in the pouch? I ask because I had a similar situation, a 14 year great run after surgery. Then out of nowhere, started having nightly incontinence. That was my first sign that something was wrong. Scheduled a scope to find out I had terrible inflammation in my pouch. Stay on top of it. 

I had a scoping about a year ago.

I have requested a scope soon. 

jeane posted:

Maybe try another bowel thickener like benefiber?  I never had much luck w Imodium or lomotil. Some people eat marshmallows to slow down transit but they are loaded w sugar. Sugar definitely aggravates my pouchitis. 

I bought some benefiber. And metamucil.

how many doses of benefiber should I take?

Soluble fiber will let you know very quickly if it's helping, certainly within a couple of days. It's just mixing with the stool and changing the texture and thickness. I take a dose of it as the package directions suggest with meals twice a day (breakfast and dinner), which is exactly what my surgeon suggested 14 years ago. Some people have been told by their doctors to mix it with less water, but I disagree with that advice. 

Thanks Scott  F,

I will try benefiber  2x a day.