SIBO…did it ever go away?

@hallward I agree with you that the medical world at this point doesn't have much to offer to those of us who suffer from SIBO, its related conditions, and side-effects. Given all that they still don't understand and our very individual physiognomies and genetic make-up, I feel that all we can do is tinker and try things. In the end, we may never be cured and may just have to settle for having something that we can live with as best we can.

I have been messed up since summer 2024. A case of food poisoning in May was probably the culprit. I had a colonoscopy and an endoscopy. The endoscopy revealed that my brush membrane was damaged and that I had developed ASID (Acquired Sucrase Isomaltase Enzymatic deficiency. That is, my body can no longer properly digest these forms of sugar). My symptoms at this point were constipation and also dyssynergic defecation. My stools veered from loose to hard and were often orange in color. I also felt generally unwell and blood tests indicated very low iron (though not quite anemia). This, I believe, caused me to start having multiple tormenting instances of a form of restless leg syndrome centered in my lower spine. I had a special MRI and it indicated pelvic dysfunction. Because of all the bowel stuff I also developed very bad hemorrhoids. In December 2025 I took the breath test and was finally diagnosed with methane type SIBO, which confirmed what I already pretty much knew.

To cut to the chase, where am I now, a year and a half later? I'm on a special restrictive diet guided by ASID diet guidelines (available online). It has some similarities with FODMAP but is different. Basically, I avoid sugar of ALL types, including almost all fruit (except berries, kiwis, and prunes). It's annoying but can be done, though it would be impossible, I think, for vegetarians. I've gotten rid of all supplements and even, when possible, medications that might cause constipation. I did pelvic floor physical therapy and it gave me some useful insights. I elevate my feet on a stool when defecating. I try, as much as possible, to ONLY poop once every morning after coffee and breakfast. I take miralax and a senna laxative daily and try to drink a lot of water. I eat a few olives and a little plain, sugar-free Greek yoghurt for probiotics every day. If I haven't pooped at all for 2 days straight I up the dose of the laxative but it's good for the hemorrhoids to have a break for a couple of days anyway. I just did a 2-week course of Rifaximin (Xifaxan) and we'll see what the long-term results are, if any. Already I have less gas, less dyssyneric defecation, and my poops have become brown again.

But you'll need to tinker to figure out what works for you. I lost 20 lbs from not eating sugar. (The only plus from all this!) I'm at the point where I can live more or less normally but if I have an early appointment somewhere I get up 3 hours earlier to ensure I'll be in condition to leave the house. And because of the hemorrhoids I need to wear a sanitary pad at least a few times every week. And, yes, people think I'm crazy because of the restrictive diet. But this might be as good as it gets.

@rnewman12 Surely you sound like an intelligent person, especially well-versed in an infliction from which you suffer. I know a lot about Crohn’s as well. Those who have to endure sometimes out diagnose the doctor. My fatigue is profound, but CD does that. But it is assisted. Mental states, blood, ferritin, TIBC, iron, immature RBCs, WBCs fighting inflammation, more. After some labs I had done my PCP said, “Well, you’re not anemic because your hemoglobin and hematocrit are normal.” Yes but my iron saturation % was 19.5; 20 being the lowest accepted normal. My iron wasn’t binding for transport. Iron stores were low. I started to read more of course. I am the perfect candidate for NAID (non-anemic iron deficiency). Most clock docs wouldn’t know this. I’m going back in a week with an armory of facts. You know who knows the truth? Will speak at your level? Won’t check her watch? A.I. ever conversed with him/her in chat on iPhone? Try it. Knows a ton of shit. All free. No time limit. No accent. “Ask anything”, they prompt. Do NOT confuse with JustAnswer who will ENT you with a garden hose. A.I. showed poor challenged me anyway, how to take a screenshot, copy & paste it, and send it to myself in text EDITABLE format. And the original can be an entire screen. I’d never say don’t first got to a Dr. but once you really understand a lot about your diagnosis, you can ask A.I. things you forgot to ask. Were embarrassed to ask. And hear this NOW. A.I. is citing its sources. If it uses info from the Cleveland Clinic, a tiny paperclip if clicked will take you to the primary source- to let YOU, the user, determine for yourself how accurate the info is. If you’re a specialist anyway. Otherwise most of us are not researching what we read or who wrote it. But now A.I. at least is sourcing its articles so that often you can read it yourself. And see your doctor.

@sikntired Thanks! Yes, while in the past I steered clear of AI, now I am less leery of it because of the new feature of citations with links to sources. And yes to a multi-pronged approach to dealing SIBO, etc. Yes to doctors and diagnostic tests, as the latter provides useful information. Yes to dealing with issues in a holistic way (e.g., nutrition, medications, supplements, pelvic floor therapy, bowel training, biofeedback, hypnosis) and experimentation. Yes to consulting patient forums like this one for ideas and comparing notes. I'd also like to say that at some point maybe one needs to accept that one might never be "cured." My goal at this point is a normal life, where I don't have to structure every aspect of my life around this thing. After 2 years, I've mostly achieved that. Another thing I notice in these forums is that many people don't pay enough attention to the damage that SIBO might have done to your gut lining. In my case, after I did have an endoscopy I was diagnosed with ASID (acquired sucrase-isomaltase deficiency) I went on the special ASID/CSID diet and it made a decisive difference. It is NOT the same as FODMAP and if you have ASID, FODMAP won't help you. Your gut literally can't properly digest lots of foods permitted on FODMAP, though there is some crossover.