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SIBO…did it ever go away?

Digestive Health | Last Active: Apr 30 8:31am | Replies (90)

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Profile picture for rnewman12 @rnewman12

@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.

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Replies to "@hallward I agree with you that the medical world at this point doesn't have much to..."

Your story is all too familiar. We are pretty much left to figuring this
out on our own. I also have figured out a way to manage SIBO. It’s not
great and there are many limitations but it seems to be the best option for
the moment.
Good luck to you.

@rnewman12
Very familiar story. I feel like sibo is a chronic condition more than not. I had a small bowel resection a few years ago and have been dealing with this ever since. My initial diagnosis was methane+ hydrogen. I worked with a nutritionist for over a year. The methane was eliminated with Alimax (garlic) therapy. I took one round of rifaximin for hydrogen, but I don't think it completely eliminated the hydrogen. My doc had me do the biofeedback and pelvic floor stuff which has helped. My biggest issue aside from bloating is almost constant gas. I was thinking of trying simethicone (gasx) for this. Has anyone had any luck taking this? My wife is after me to go back to the gastroenterologist, but I think its a waste of time.