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Posted 10/12/2014 9:53 AM (GMT 0)
Hello. I had an ileostomy for 6 months and they were by far the worst of my life. I've had a j pouch now for almost 7 months and sometimes find myself missing not having to run to the bathroom constantly. I had major problems with my bag so I don't want it back, but I also can't function like this for another 50 plus years. So conflicted...
Posted 10/12/2014 10:53 AM (GMT 0)
What's going on? Have you seen a doctor? After seven months you shouldn't be constantly running to the bathroom unless something is wrong that needs to be addressed.
Posted 10/12/2014 11:48 AM (GMT 0)
Yes I have chronic cuffitis been on abx and now on more.
Posted 10/12/2014 1:53 PM (GMT 0)
That stinks, sorry. I hope you can find a medicine that will give you some relief. I didn't think cuffitis was treated with antibiotics but with something like a cortifoam.
Posted 10/12/2014 7:39 PM (GMT 0)
I agree with Marianne, your doc should be trying other stuff besides antibiotics for chronic cuffitis. Canasa would be a good start, or steroid foam (proctofoam) or suppositories (anucort).

Are you being treated by a surgeon or a GI right now? Would it be possible to trade up to a more experienced GI who could be more aggressive in treating your cuffitis? There are so many treatment options in between where you are now and the idea of going back to an ileostomy, but you need a doctor who will be a good partner to you in exploring them.
Posted 10/17/2014 6:26 PM (GMT 0)
I've tried every rectal therapy and oral and I'm totally miserable. Didn't think it would be this awful after all 3 surgeries. Seriously not sure what to do now.
Posted 10/18/2014 11:44 AM (GMT 0)
Have you been tested for C. diff and CMV?
Posted 10/18/2014 11:53 AM (GMT 0)
Yes been tested for c diff many times and always negative. Never for cmv. At this point I may go to the Cleveland clinic for another consult. I really wish there was a minor surgery that could just open me up, see what's going on, clean me up and be done. I do not want a colostomy, I'm going to start soluble fiber and this new crazy expensive probiotic to see if there's any change.
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