Posted 7/21/2020 12:05 PM (GMT -6)
I finished the FMT clinical trial for crohn's about a month ago. There was a hospital near me and my gastro was involved with (most are not and know little about FMT for crohn's, the trials are rare) the trial and since there was little left for me to try and I qualified he enrolled me. The whole trial is an experiment to see whether FMT might for some be a viable option for long term crohn's treatment, like biologics it might work for some, not others, I am simply relating my experience here. I went to the hospital for about an hour once a week, the first fecal matter transfer was by colonoscopy (by far the most effective) and then 7 more weeks of (an hour visit) to swallow 20 FMT pills/wk (in an office, pills didn't seem quite as effective but still good), stool, blood, urine, weight tests, questionaire about eating. It was a "blind test", I could have either received FMT or a placebo (water) in the trial, if I had received the water I was eligible after the trial to automatically receive the FMT. I knew after the first transfer (via colonoscopy) before I left the hospital that day that I received the FMT (I could feel it, gassy/bubbly etc..), the next day and the next week the effect was immediate and amazed me. To check if there might be a clinical trial for crohn's near you (this covers U.S. too) https://clinicaltrials.gov/. They do not know if I will stay in remission (first time ever remission except for right after resections, even then I always had diarrhea and pain. I generally don't "flare" like others, (I always/continually have ongoing med.grade disease progression until my bowel becomes completely blocked) or if the FMT effect will eventually wear off in a year or so as I can only receive this through clinical trial and it is not approved for wide use for crohn's or anything but C-Diff yet. They recommend not doing do-it-yourself FMT at home (for a variety of safety reasons, the most pressing is the screening of donor feces) but the procedure is all over the net, relatively easy and had such a profound effect for me I may risk it (I don't have many options left, and don't believe I have enough small bowel left for a 4th resection), at this point if I am told that if I stand on my head and eat a lizard and I find it works for me, I am not only standing on my head eating a lizard but hunting down his family to eat also in order to gain some peace, body and mind). I am not currently on any other crohn's medications and feel great. I have been on codeine, cipro/flagyl, budesonide, Remicade, Enytvio, as well as various supplements (including probiotics), none of which really worked for me. It was the 2x day magnesium glycinate pills a day that completely got rid of my joint pain, not the vitamin D, ask your doctor about your magnesium levels to see if this might be your problem also. Any sinus issues I had, had to do with the codeine. I do have short bowel from the resections, what you describe sounds a lot like me. My last resection (3rd, followed closely by 3 more surgeries to correct the anastomotic leak and complications, I was hospitalized for 2 months and almost died twice, I totally get how frustrated and mentally drained you must be (not just physically), a lot of your experience sounds very similar to mine and while I am feeling great right now, (and I have actually had periods in my life where I just tried to ignore the pain and diarrhea and other complications and just get on with life/job), regular bowel movements and all, its very recent and I too just wanted to live a somewhat normal life with little pain, little diarrhea, and with some mental peace. I sincerely hope you find some peace, some way, with your body and mentally, this is an absolutely brutal disease for those who have it severely.