Hi there. Looking to maybe get anyone’s experience here. I have a very nice gi that I just started working with a couple of months ago; but he is not experienced with pouches unfortunately I think I am his first one. I am 10 months out from takedown. Sorry this is long I’m just at a loss on what to do.
That being said, I started going to him because I was having lots of pressure and discomfort and sometimes spasms rectally. It was enough to wake me at night. No increased urgency or frequency or bleeding etc just this awful pressure and sometimes having to strain to empty then still having this pressure anyway.
While waiting for tests I did 2 weeks Rifaximin with really no change. So he did ct scan and Pouchoscopy in December, both showing Cuffitis and nothing else. When the biopsies came back they showed inflammation in the cuff as expected, but also mild inflammation in the pouch even tho it looked good on scope. So he said I have pouchitis and Cuffitis.
I went on 2 weeks twice a day each Tindamax and hydrocortisone enemas and felt better literally the first day. I felt great that whole two weeks. Unfortunately it all returned within a week of stopping, although to a lesser extent.
Then we moved to mesalamine enemas. After a week I noticed these were making me worse. Still had the pressure but now increased urgency and frequency. Stopped those and that all went away, except the original pressure issue. I told him I don’t think my body likes mesalamine. But he said we should try oral mesalamine anyway. I did, and after 3 days it made me sick as a dog. So now I’ve stopped that and am on nothing. The pressure and straining remain an issue.
So today I tell him I’m stopping the pills and he tells me I’ve exhausted all my options and probably need a biologic. This seems like a big jump. I’ve tried two short term antibiotics only. Apparently I can’t do mesalamine in any form, I get that is limiting. I know hydrocortisone isn’t long term either, but is that really everything?
I will say I can’t do cipro because last time I took it I got c diff which was just 4 months ago so fairly recent. Flagyl and augmentin make me sick. So I know the usual options are off the table for me of cipro, Flagyl, Canasa.
I’m not opposed to a biologic if that’s what I need but again this just seems like a small amount of time dealing with this and a large jump. I see people taking longer terms of antibiotics etc.
Anyone have any advice here? Should I get a second opinion or does this seem reasonable? Thank you if you are still reading all of this!