Small Bowel Bacterial Overgrowth (SIBO)
A few years ago, one gastroenterologist suggested that in addition to my irritable bowel-C, acid reflux, and celiac disease, I was also experiencing SBBIO. No testing was done. The recommendation was to take a combo of Metamucil and Restoralax (miralax) to deal with the constipation and probiotics and a FODMAP diet. (Restoralax now exacerbates my irritable bowel symptoms so I have stopped using it, as did the Metamucil). I took a specific probiotic recommended by the gastroenterologist for two years and found it didnt do much for me. When I read about Small Bowel Intestinal Bacterial Overgrowth, I see there is a breath test and there are specific antibiotics used to treat this condition. I also have read that probiotics can also make the condition worse until it is cleared up. Anyone out there with this condition who has treated it and is feeling better?
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I was first diagnosed with SIBO about 10 years after my colon surgery so it’s been many years of trial and error. On a similar note, a friend with SIBO told me this morning about reuteri yogurt which she says has given her more relief than anything she’s tried. It’s fermented for 36 hours thus neutralizing the lactose. I’m going to make it - turns out you can make yogurt in an InstaPot! - and will report back.
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2 Reactions@dt61 I too am coming around to the realization that SIBO might not completely ever go away but might be managed to the point when it's tolerable. Right now, that's where I seem to be, for the first time since becoming afflicted with it (SIBO with constipation) in summer 2024. Other symptoms: dyssynergic defecation, bad internal hemorrhoids. Here are some things that have helped me. Everyone will be different, but maybe some of this will give you some ideas to try. Keep in mind that it's taken me almost two years to get to this point! It's a process:
1) A little pelvic floor therapy to give insight on the best ways to poop. (Even just consulting online tutorials -- there are plenty.) And a poop bench.
2) Realization that you don't actually need to poop every single day. Try to aim for one BM in the morning, let's say, and don't interpret every bit of gas as a sign you need to go. Wait it out a bit, maybe it's just gas.
3) Nightly senna, magnesium. Docusate sodium (100 mg) at night after 2 days with no poop. Miralax every single day and trying to drink as much water as possible.
4) Diet: this is really important. I would urge everyone to go and get an endoscopy to determine whether your brush membrane has been damaged. I did and was diagnosed with ASID (Acquired Sucrase Isomaltase Deficiency). This means that your body can't digest certain kinds of sugar. It's why the FODMAP diet might help but is not enough.
5) So now I'm on a really restrictive diet. Pretty much no sugar, which is great for helping to starve the bad bacteria. And I lost 20 lbs just from not eating sugar, which, in my case, is a good thing. Everyone needs to tinker for themselves but here's pretty much what I eat right now: sourdough bread, aged cheddar or Swiss cheese, almost all animal proteins (e.g., fish, chicken, eggs), some spices, coffee, tea, berries, prunes, certain vegetables, tahini, avocados. If you are a meat-eater, a good standby in a restaurant is a hamburger. Japanese udon/ramen noodle soup is good, too, because it doesn't have a lot of additives (e.g., garlic, sugar). If there is a trace of some "bad thing" in something you eat it once or twice it probably won't have any effect (e.g., some sugar added to the challah dough).
6) Counter-intuitively: I discovered that whole grains and some high fiber vegetables are NOT good for me. Huge improvement once I figured this out. White-flour bread, even if there is a touch of sugar in it is tolerated. The best is sour dough bread, which is highly digestible.
7) No probiotics.
8) I did do a 3-week course of the Xifaxin and I didn't see any immediate change. I also didn't experience any side effects from it. However, about a month later (a few weeks ago) I had a terrible week that I think might have been a die-off of the bacteria (endless pooping, sometimes in middle of night, some diarrhea, rashes).
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Where am I at now: mostly regular BMs (sometimes loose, sometimes formed, a good brown color and not orange as they were for a long time), much less gas. Mostly just once a day, though sometimes still needing to return to the toilet once or twice more to finish.Some good stretches where my hemorrhoids don't bleed, don't prolapse, and don't hurt. I feel better, in general. When I first developed the SIBO I felt really sick, with strange numb sensations in my arms and legs, and had very low absorption of iron (leading to restless leg syndrome, insomnia). I'd like to experiment and see if my intestines have repaired themselves and I can tolerate a wider range of foods -- but not just yet. In short, it's possible for me right now to live a normal, functional life and not have to obsess every minute about this condition.
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6 Reactions@rnewman12 excellent..thanks for writing all of this ! One does have to be very patient with diet for many digestive problems…and don’t forget to hydrate, it really helps ! Hope you feel much better soon.
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1 Reaction@dt61
I started a new round of medication Friday and the fatigue, fog and dizziness is worse this time around on the medication. I’m seriously regretting this new round of medication.
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4 ReactionsI have yet to find any medical provider who was of much help. What has helped me is the FODMAP diet. I've done it on my own using a lot of on line research. I'm now starting to slowly add foods back in and having a lot of success. One thing I didn't know and hope others do is that OTC meds like Prilosec can be a factor in developing SIBO. I had been taking Prilosec for quite a few years. I stopped cold turkey once I learned that and I wonder if that has helped me. Unfortunately a lot of us really feel we are on our own with SIBO. My insurance won't even cover a nutritionist.
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4 Reactions@hallward
I was on Prilosec for many years. After having para esophageal hiatal hernia surgery a few months later they put me on a different PPI because of intestinal metaplasmia. I was so upset. I had to weight out the pros and cons with the Drs. I feel like it’s not a win situation either way.
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2 Reactions@hallward same with my coverage and the GI dept suggested a nutritionist. The very few I have found in my area aren’t taking new clients.
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1 Reaction@hallward
I've been lucky to have a gastroenterologist who ordered tests (colonscopy, endoscopy w/biopsy, MRI defocography, SIBO breath test) and to have insurance that paid for them and also a course of Xifaxin (expensive drug). But, yeah, we're on our own. We're learning along with the doctors. I will say, though, that even since summer 2024, when everyone with SIBO was basically being diagnosed with "IBS," I've seen a big increase in information about SIBO on doctor/medical sites. But it will all be trial and error and essentially, self-doctoring. I've thought for a long time that what Western (or at least US) medical care is good at is diagnostic tests, but not really "care." But those diagnostic tests can be very informative and useful. And yes, do have a look at any supplements and medications you are taking that might be contributing to symptoms.
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3 Reactions@mbusch12 each and every time, no matter the Doctor, no matter the recommendation. What works for one may or may not for another as I can fully testify to and in some instances may make things worse.
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2 Reactions@dt61
Yea I can honestly say I’m learning after surgery that it definitely isn’t a a one size fits all with anything. So much trial and error. I have been fortunate also having so many Drs being very attentive and on top of my scenario. I have had the same family Dr for 48 years and she suddenly became sick and died. One of the best Drs in our city. She was like family. This makes it so tough working with different Drs especially with different approaches. One day at a time.
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3 Reactions