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I'm looking for any suggestions 

Nothing seems to be working any longer. Pepto bismol, immodium, Vicodin, Konsyl fiber, digestive enzymes. Past 3 weeks just can't seem to get it under control. I'm very careful with my diet, lately I've just been eating rice seems to help a little bit, but can't live on rice forever. I'm allergic to both antibiotics that help pouchitis, my doc doesn't know what to do with me anymore.  Living with this for 37yrs, always have been able to control, but lately it's getting worse and the docs have no advice for me. 

Thanks

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Have you tried all of the antibiotic options? I can't tell whether "both antibiotics that help..." means you've tried them all and only those two helped you, or something else. There are a fair number of antibiotics than can sometimes do the trick. In some cases a combination will work when the individual ones don't.

Have you tried a high dose of VSL #3? I take 4 double-strength packets per day. That has made a big difference for me.

Have you tried a very-low-carbohydrate diet? Rice is a high carbohydrate food.

Have you tried Deodorized Tincture of Opium (DTO)? It's a nuisance to get prescribed and filled, but it's the gold standard for ultra-powerful anti-diarrheals, more effective (and more appropriate, IMO) than Vicodin.

Have you been tested for C. Diff? CMV? Giardiasis? Amebiasis?

Scott F

Thank you so much for your response. Tincture of opium is something I do have, it's my last, last resort, oh how I hate that stuff so much, but it's looking like I may have to start taking that  

I'm allergic to flagy & cipro. 

Probiotics don't agree with me, digestive enzymes seems to be all I can handle. Rice & potato is the about the only carb I eat since I'm allergic to soy & egg. They always test me for c-dif, never had it, thank god. I've never heard of the other ones.

 

 

 

 

 

 

Y

If pouchitis is cause, another possible antibiotic is Levoquin.  I'm allergic to Flagyl and Cipro didn't work, but Levo does (I alternate it with Xifaxan).  I also take Immuran, along with the antibiotics.  Before this regimen, I also had good results with budesonide and even steroid suppositories. 

Thickening the stool help for better control-for me that's lots of psyllium fiber, immodium, and codeine (I used to use paregoric-like Tincture of Opium).

J

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