This is probably a repeat post that has been viewed by others in the past. I am now a year since takedown and virtually cannot function more than a few days max without antibiotics (augmentin to be precise--875 x 2 per day).
I am extremely discouraged as without the meds, I have incredible anal pain and irritation and pain emptying my pouch along with all the other symptoms that go with pouchitis and I have been fighting ongoing cuffitis as well with canasa really doing nothing. I find it so odd that when I am on the antibiotic, the cuffitis also subsides.
I cannot understand how I can falter without these meds to the point of requiring multiple passes each time I empty my pouch, extreme anal irritation and pain, diarrhea and just a total lousy feeling with constant muscle aches and pain since having this surgery.
I have tried diet changes, probiotics daily etc. to no avail. My recent scope shows chronic inflammation mostly in the distal pouch and at the anastomosis and cuffitis and my GI tells me I should not be concerned about losing my pouch as I am antibiotic responsive. He also has had me try and go without the antibiotics to get a two week clean up and I am never manage to get through a few days.
I am so uncomfortable about long term antibiotic use due to the breast cancer risk I have read about and the link to crohn's and colitis and fear I may eventually end up the the crohn's diagnosis after being on constant antibiotics.
Is my only next option to move to biologics or remove the pouch? Am I being delusional in thinking I may ever be able to function without antibiotics? Has anyone been on them long term and been able to successfully get off them and maintain a healthy pouch? My GI doc is now telling me he has patients that have been on them for even as low as four months and are no longer responding to them which is another concern I have.
I guess I am having a hard time coming to grips that I fall in the 10 /20 % range where my pouch is not working out like I thought it would and should I continue to be on the drug path and still suffer or bite the bullet and be done with this nightmare.