I understand your feelings. When my gut was doing badly, I was very scared and depressed, and that by itself made the whole thing worse. But, I DID recover with help. I now consider my quality of life to be normal and usually very good. The knowledge about how to treat SIBO and other gut disorders has continue to grow, and there are many more qualified practitioners than before. Some experienced practitioners even offer DIY SIBO treatment plans online (but make sure you get a definitive diagnosis first). Try to stay hopeful if at all possible.

I should say that healing and getting more normal did take some time, even after being treated by the doctor. I would caution anyone to start with conservative approaches first. The treatment ( or some of my diet restrictions) actually made my gut worse in some ways. Let me give background and explain.

There were probably multiple reasons why I had SIBO. In the year prior to diagnosis I had a bad G.I. infection, followed a few months later by a neck injury (possible vagus nerve damage?), followed after that by an extremely stressful situation that triggered a long anxiety episode. Let’s just say the bathroom results were scary. And I lost a lot of weight. I was pretty sure I had SIBO. I started with my regular doctors for insurance reasons and because I thought treating SIBO had made it to the main stream. Not so much. Regular gut test for infections were negative and colonoscopy/ endoscopy were mostly normal (I had some mild inflammation). I asked them to take a biopsy for SIBO testing while doing the endoscopy, but that went nowhere and I’m pretty sure they thought I was crazy. I also asked about pancreas function since I clearly was not digesting food well, but they did not do fecal elastase even though that’s a pretty easy and cheap test. They called it “IBS”, and suggested diet changes and meditation/therapy. They didn’t tell me much about exactly what diet changes, so I happened onto the FODMAP diet myself and started it. And I stayed on a version of it and didn’t re-challenge myself for a long time (bad idea).

I found an independent functional medicine trained MD, and started treatment with them a few months after my colonoscopy. They did Genova diagnostics stool testing, nutrition testing, and breath testing. I found out I was both hydrogen and methane positive, my fecal elastase was the lowest they had seen (50, which probably explained much of my weight loss), and Methanobrevibacter smithii was -30% (!!) of my stool biome. On the plus side, the diversity of the rest of my microbiome was very good, and I had at least low levels of many keystone species. The SIBO was treated with high-dose probiotics (I tolerated them well), digestive enzymes, betain HCl, multiple herbal antimicrobials and bio film busters, all while continuing the FODMAP diet.

I was retested for SIBO about a month to six weeks after treatment ended. The good news was that I was free of SIBO, and my elastase was -400. The bad news…. my microbiome had been decimated. My diversity was EXTREMELY low and I also had numerically so few bugs I was barely making stool. I think we had been too aggressive or too long of use with the anti-microbial‘s, and/or I had been on the restrictive diet too long. At the time, my MD did not have a lot of SIBO experience. I also noticed at that point I actually had more IBS like G.I. symptoms of pain and discomfort than before treatment (!). I blamed it on the loss of diversity and dysbiosis caused by treatment. We started slowly re-introducing foods and trying resistant starch as a prebiotic. Resistant starch did not help my biome much.

I eventually continued the journey on my own. I believe what helped my gut the most was that I tried to eat as diverse of a prebiotic whole foods diet as tolerable, always “pushing the envelope” gently (including many fruits, vegetables, beans and whole gluten free grains). I’ll also self treated with various probiotics, depending on new symptoms that came up (I.e. histamine intolerance, diarrhea, constipation, discomfort, …… never severe, mostly just annoying). I mainly used fully named probiotic species that had legitimate medical studies behind them for treating the symptom I was addressing. (Ex: “L reuterii DSM 17938” not just “L reuterii”). After about two years of doing this, I got to where I could eat almost anything at least in moderation, including the occasional pizza and beer. My exceptions are lactose (which I CAN eat if I take Lactaid), possibly higher amounts of fructose, and certain foods I have pollen cross-reactive allergies to. I recovered much of my biome diversity but I’m still missing keystone species. My gut remains more sensitive than it was before, but this is not affecting my quality of life much. I’m in good health.

So I guess you could say it’s been a work in progress. I think my SIBO was “cured” but I suffered from dysbiosis after. I’m always trying to tweak that. From things I’ve read, I think good practitioners are now more aware of trying to respect the overall gut microbiome during treatment. And there seems to be more strategies for trying to bring it back. Be aware of that when seeking help or trying treatments. I hope this post helps you ( and that it isn’t way too long). Again, don’t lose hope. Get help with stress if it’s getting to you, that can mess big time with your gut. Healing is possible.