Why is it so strange? Organic matter can adapt to the circumstances. And the pouch and maybe the last part of the small intestine (if the pouch is smaller than usual or simply full) has to do the job of a colon partially, i.e. hold stool and get along with the bacteria growing over some hours or occupying the mucosa.
The hospital where my surgeries were done did a scope of the pouch and terminal ileum some years later, and they doubted that all of the colon had been removed because the biopsy also looked like UC inflammation (I suffer from chronic inflammation ever since UC times). Luckily they still had their own surgery report.
A UC-like inflammation of the pouch can be treated with antibiotics without worrying too much about the bowel's microbiome, as you probably would with a colon still there. If your gastroenterologist is a little creative, he can swap between a UC- and Crohn's-like inflammation diagnosis and try different biologicals if other meds should not help you any more.
You can also use budesonide to calm inflammation, as it takes effect in that part of the bowel and it has little 'systemic' side effects. But it is quite expensive if it's not covered by insurance.
Have you already tried the combination of Cipro and Flagyl as I suggested in your Xifaxan post? Antibiotics can get infeffective, especially if only one is used for a longer time. That's why some people rotate antibiotics.
Cuffitis, which is essentially UC of the remaining bit of colon, is more typically treated with mesalamine than antibiotics. Canasa suppositories are one fairly easy way to use mesalamine. It can take a while to work, but sometimes works well. As SteveG wrote, though, when one antibiotic fails then adding another can do the trick. When Cipro failed for me adding Flagyl worked (and the combination has worked well for at least 8 years), even though Flagyl alone never helped me.
yes, in some respects they are treated differently. When I had UC my treatments were mesalamine pills, enemas and suppositories, plus the occasional uceris foam. I would have gone to a biologics;(remicaid, humira, etc), but dysplasia formed and with that I lost my colon.
I do not yet suffer from pouchititis, but I do suffer from cuffitis., so I am back on the canasa.
some folks do well with antibiotic’s, combos, and rotations as well as biologics. You need to work closely with your care team to improve your QOL.
It really does not matter what we call it at this point. If you are suffering, you just want relief and the feeling that your pouch will function well for years to come.
So interesting reading these. I’ve suffered yearly bouts of pouchitis. My insurance won’t approve Xifaxan . I get letters saying that’s only used for IBS and some liver disease. So I’ve had to use the Cipro & Flagyl for every bout. I remember when they first took out my colon. They said your colitis is cured! Whopee! I’m grateful I only suffer once a year I guess and I’m not messing myself. I got to come more often to learn more of what can be done!!
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