Posted 11/22/2015 6:29 PM (GMT 0)
Hi Folks,
Unfortunately, I'm flaring for the second time (since DXed) for a couple of months now, +5 BM/day with rectal bleeding, urgency... Yesterday I had endoscopy test which confirmed rectal inflammation up to 15 cm high. GI gave me a course of Betnesol retention enemas 3 times a week for two weeks long and then tapering off slowly. Same method applied in my first flare but with higher dose.
I find it very easy toward healing with steroids and extremely difficult to find the right way maintaining remission. I am so convinced that once I'll be off steroids inflammation will return slowly again, something I desperately would like to avoid in any manner but without magic meds.
I thought of the following plan:
(1) Tapper off Betnesol retention enemas to heal the entire rectum completely and be symptoms free.
(2) Continue with 5ASA enemas/supps/pills as usual (they're used as maintenance - always).
(3) Do FMT course for 2 months (about 2-3 times a week) - they have worked like magic for me.
(4) Take LDN (low dose naltrexone) pills 4.5mg/day - I'm working to get a doc prescription for that.
(5) Adding slippery elm bark powder.
I'm a bit concerned adding slippery elm bark as I heard it coat the colon and may prevent nutrients absorption.
I see no good using steroids every 2 years cycle - this is wrong, I know it, GI knows it but currently there is no better choice.
Really appreciate if you could share your experience with me,
Any feedback will do.
Thank you.