Sibo treatment, long term success??

@mbusch12
3 weeks of antibiotics, then supplements? Am I understanding that when you stopped treatment and started adding food back in, the symptoms came back? If you don't mind me asking, were your symptoms as bad as before the treatment or did they get a little better? Or the same? Do you mind sharing what type of antibiotics? Did you have hydrogen, or methane dominant or the new one hydrogen sulfide? Thanks for sharing your experience.

@mbusch12
3 weeks of antibiotics, then supplements? Am I understanding that when you stopped treatment and started adding food back in, the symptoms came back? If you don't mind me asking, were your symptoms as bad as before the treatment or did they get a little better? Or the same? Do you mind sharing what type of antibiotics? Did you have hydrogen, or methane dominant or the new one hydrogen sulfide? Thanks for sharing your experience.

I had SIBO a few years ago caused by antibiotics according to my doctor because they not only kill the bad bacteria but the good bacteria as well in your upper GI tract. I was put on a prebiotic followed by a probiotic to build back the gut microbiome. With the help of a nutritionist my doctor had on staff, she guided me with changes to be made in my diet. I omitted sugar as bacteria love to feed on sugar and used stevia instead for a sweetener, omitted dairy and switched to sheep and goat milk products like yogurt and cheeses as those are easier to digest, switched to nut milks instead of using any dairy products for adding to coffee or other drinks, eating or cooking and omitted gluten products as I tested positive for gluten intolerance (gluten destroyed my gut lining). There are plenty of gluten free breads, etc.
It takes commitment to these changes to get to feeling better again and it also takes commitment to continue with these dietary changes. But it worked for me tremendously!

@gigi4
I have a somewhat rare genetic disease, AFAP, which dramatically increases my risk of colon cancer (100%). I had a subtotal colectomy and in removing my colon, they also removed my ileocecal valve which is why my SIBO is chronic. I tried all sorts of diets and for the past 4-5 years have been on a SIBO diet I found on the Cedars Sinai website (lots of good info there!) with some minor modifications. I can tolerate lactose free dairy which helps with my protein intake and I also have a B-12 shot every month because of malabsorption issues. I like to bake and converting recipes to GF isn’t difficult (I use monk fruit as a sweetener). Still trying to master the art of good GF bread and in the meantime order Franz GF bread which is the best I’ve found.

I am sure there is some one reading this who can say as I can that I have had SIBO so many times that I don't need a breath test to identify it anymore. It is my thought that at least for myself, it will never "go away" so it is simply managing through come what may. My diet is extremely narrow and has been for years now but, there are times that I will eat "to my craving" (controlled) and I have found that there is something in those items that I crave that my body wanted, needed required - whatever it helped me develop some of the good bacteria as opposed to the over growth of bad.
My experience.

@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).

***
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.

I am sure there is some one reading this who can say as I can that I have had SIBO so many times that I don't need a breath test to identify it anymore. It is my thought that at least for myself, it will never "go away" so it is simply managing through come what may. My diet is extremely narrow and has been for years now but, there are times that I will eat "to my craving" (controlled) and I have found that there is something in those items that I crave that my body wanted, needed required - whatever it helped me develop some of the good bacteria as opposed to the over growth of bad.
My experience.

I 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.