Over several years I've been posting in this thread about my condition and actions I've taken. Some background is in
this post, which also spells out a multi-donor FMT I had done. But in short, I've had UC a long time and it's been mostly under control using 5-ASA's, but when they quit working, instead of down-regulating my immune system, I started exploring alteration of my gut microbiome. Results
13 months later were not promising, though.
But this post is good news. I'm feeling better than I have in years and I'm not taking the 5-ASA (mesalamine) any more. I'm not suggesting any one do this or anything like it, I'm just telling you what I've done.
About one year ago, I decided to do a food allergy test. It wasn't something I did under the instruction of a doctor. I can't recall where I even read about the test (maybe on this forum?), but I did the E95 and A95 food panels (after eating everything under the sun so as to cause the markers to show-up). It said "no eggs". I've never noticed any problem with eggs, but I quit eating eggs themselves. I severely cut back on things that were made with eggs, but eggs are everywhere (mayo was tough to give-up). The panel also had me limited to once every 4 days on soft dairy, some kinds of beans, and a few other things. The E95 indicated wheat was fine, but an earlier Cyrex wheat panel (a more detailed analysis) showed sensitivity on a few gluten variations, so I go without bread and most products with obvious wheat (but still drink beer).
So that's one thing I changed: no eggs.
The next change was about 8 months ago, I took a box (60 capsules) of "Mutaflor" (E coli Nissle 1917 in a pill). I tried to follow the same procedure as in a
paper I read. I ran out of Mutaflor and didn't replenish right away; it's kind of expensive and I had to order it from Canada. Then, in an unrelated heath monitoring action, I noticed that I had high creatinine (blood test). Figuring that was caused by the maximum dose of Lialda for so many years, I quit that 5-ASA in June (five months ago) and started with a maintenance dose (1 capsule per day) of Mutaflor. I went off Mutaflor for over a month without noticing a big difference in health, but I just ordered some more; I don't want to change anything while I'm feeling good!
So although I'm not in perfect GI health, I feel better than I've felt in a long while. Certainly no overt UC symptoms (no blood). I'm not sure if getting rid of eggs helped, using Mutaflor helped, both together helped, or if it's just a conincidence. I'm also a few years past a life change, so maybe even stress has gone down some.
I'm not completely discounting the multi-donor FMT I had done almost 3 years ago either. One just never knows how this stuff works. I've had my gut biome checked three or four times by ubiome, and answered hundreds of health questions...not so I'm not learn anything from that, but with our help, they might put together the puzzle. I encourage everyone to help ubiome, by the way. The more data, the better.