I wanted to give my story in the off-chance that it could be helpful to someone (or if someone has advice for me even!). Surprisingly, unlike most of you it seems, I had my ICV removed due to Crohn's Disease inflammation in the terminal ileum and cecum. Despite no apparent CD after that, I have had nonstop issues since the surgery (8 years ago). A new GI suggested I try a round of Rifaximin since my symptoms lined up with SIBO. For ~10 weeks I felt ON TOP OF THE WORLD, I could literally eat anything and had boundless energy. But then it came back. Rifaximin a second time ... but this time the benefit was only ~6 weeks. A third time. Even shorter benefit. A forth course, no benefit anymore. Sad times.

As doctor "logic" goes, since Rifaximin wasn't helping anymore, it "couldn't be" SIBO anymore, so colonoscopy time. Lo and behold, they discovered that the connection between my ileum and cecum was done in such a way that I had about 8 inches of unused colon just flopping around (the two tubes were not joined to be "flush" way, rather they sealed the colon and put the connection nearly 8 inches away because surgeon reasons (the guy retired, nothing in their notes explained the decision, it will forever be a mystery. Lesson learned: if you're going to get a surgery done, ask you surgeon who THEY would have operate on them, and go to him or her).

After this "discovery", I consulted with all the big-wigs in the Crohns/GI world including Stanford, UChicago, and Cleveland Clinic, and they all seemed to think that this unused "blind loop" colon was probably harboring bacteria which would flow upstream into my small bowel, making it extremely difficult to eradicate SIBO since there was a constant replenishment of the starting culture. So off to yet another surgey ... this was last year.

I forgot to mention that the SIBO diarrhea itself was not the worst part of this issue. What was absolutely DESTROYING my quality of life was that I was actually getting terrible insomnia due to GI "distress". Not pain, not really "bloating", not cramping (thankfully), just every single ****ing night at 3 to 5am my gut would kick into overdrive, and I would not be able to go back to bed until I past a (usually terrible) bowel movement, which usually took 2 hours. And of course the insomnia took over my life just at the start of the pandemic lockdowns so every doctor was telling me it was ALL PSYCHOLOGICAL, ALL IN MY HEAD, JUST LMAO FIND A WAY TO DE-STRESS MY DUDE. I think what may be happening is that my MMC is kicking into overdrive to try to clean the intestines (unlike some of you who seem to suffer from a lack of MMC), to an extent that I could not sleep through it. No doctor has provided a good explanation, alas.

After the surgery, I stopped having the worst of the "diarrhea" (actually more of a sludgey mess TMI sorry), but the insomnia and bloating was still there. So we tried Rifaximin ... nothing. But then we cycled through a bunch of conventional antibiotics: cipro, doxycline, flagyl. Each time I achieved remission, but after 10-14 days, symptoms came right back. I told my doctor I was done cycling antibiotics so this time they gave me neomycin (500mg 2x day 30 days) (similar to magical rifaximin, neomycin is not taken up into the body so it is only active in the intestines. Unlike rifaximin, neomycin is pretty active in the colon which gives its own side-effects, and the small amount that is absorbed is very toxic to your kidneys and your hearing, so I cannot be on this my whole life, I believe). I have 5 days left in this present course, but I feel fantastic again. Complete remission. Killing each day. I have no clue what's going to happen once I come off, but at least this really does seem to suggest that the issue is SIBO and I need to figure out a way to keep the critters away.

Apologies for the diatribe. Some key points that hopefully are helpful to fellow suffers:
- If you haven't had a colonoscopy in a while, consider having one and tell them to really examine your anatomy and make sure the anastamosis is optimal and that there are no irregularities or issues. My MRIs (I've had several) always showed some kind of "thickening" near the anastamosis which they "assumed" was inflammation or scar tissue, but it actually turned out to be a length of colon just chilling. Yikes.
- If you respond to antibiotics, it is probably SIBO. If you stopped responding to Rifaximin (or never did), try getting on another one like neomycin or cipro (if appropriate for your situation, of course), and see if it moves the needle at all. If you do not feel better or at least "different" after blasting your microbiome, seems unlikely that it's SIBO (but maybe could be SIFO or some other critters, who knows).

Anyway, again hope this helps someone or at least starts giving them ideas. By no means have I "solved" my issues but I think I am making progress, and I hope that working together we can make progress for everyone. Peace.