Hi, I have been suffering with pouchitis since day one, in 1993. I have searched high & low & have tried everything for this pouchitis. I toughed it out for so long because I did not / do not want a permanent ileostomy! After about 10 years of cycling through all the biologics, my GI & I decided to stop them as they were not doing anything for the pouchitis....or pouch in general.
Last winter, my GI & Surgeon started pushing me to have the pouch removed. I have been trying to get my head right before I made the leap. So I have been doing a lot of soul searching the last 6 months. I also decided to see a functional medicine doctor starting in 2016, and we went right to work with diet. I identified the foods that I am allergic to. I was diagnosed with SIBO 5 years, and I had already been playing with diet to control the pouchitis (before I saw the functional medicine doctor). The dark circles under my eyes disappeared after I eliminated the food I was allergic to.
My functional medicine doctor recommended I ask my GI to write a script for short chain fatty acid enemas. I figured, what do I have to lose. I was going to try everything & everything. I was not going to have this pouch removed without trying everything. And I mean anything. I actually begged my GI to tell me give me anything that was experimental or may help. I heard crickets. I get the enemas at a local compounding pharmacy.
Well, I have been off Cipro for 2 1/2 weeks now,and I am doing well. I have not been able to get off antibiotics for 24 years! My history has been that after a day or 2 of finishing a course of antibiotics, my gut would start acting up again.
It may be too early to know if the enemas are doing the trick, but I am happy & feeling great. I have little to no bloating & my stools are perfect (for a j pouch). Other things I am doing:
- Glutamine Powder (for 1 year)
- VSL#3 DS probiotic - 2 packets a day
- Digestion PB by Metagenics 2 with each meal (for gallbladder support, a recent xray showed I had gallbladder sludge) This helps immensely for my SIBO!
- Pancreatic digestive enzymes by Metagenics - 1 with each meal.
- Acacia Fiber, intermittently for soluble fiber.
OH, did I mention no more biologics!
I hope this helps someone out there!