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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!

Joe

 

Last edited by J.T.
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