Update: How I’m Doing 1.5 Years After SIBO Treatment!

A quick recap of how I treated my SIBO

I recently realized it’s been exactly a year and a half since I was diagnosed with SIBO and treated it. So, I think it’s time for another update on how I’m doing since it’s been a while.

For those who haven’t read about my story, I’d recommend going back and reading my posts about my history, diagnosis, and treatment. And, I also wrote a post about six months post-diagnosis that you can read.

As a quick recap, my doctor diagnosed me with SIBO through a lactulose breath test. That’s the most common, and really the only generally available, method of diagnosing SIBO. My breath test shows that I had an overgrowth of both hydrogen and methane. My hydrogen numbers in particular were very, very high.

To kill the bacteria, I took two weeks of the antibiotics Rifaximin, which works best for hydrogen-producing bacteria, and Neomycin, which works best against methane-producing bacteria. While I took the antibiotics I also took partially hydrolyzed guar gum, which is a type of prebiotic fiber that helps the bacteria reproduce, which is the stage at which the antibiotic can more easily kill them. So, taking partially hydrolyzed guar gum appears (based on at least one study) to possibly make the antibiotics more effective.

After I finished the courses of antibiotics, I followed a low-FODMAP diet for about six weeks. I also take two prokinetics: low dose Erythromycin and Iberogast. I rotate between the two because Erythromycin becomes less effective if you take it continuously for long periods of time. So I take two week periods of “vacation” from it, during which I take Iberogast. I find Iberogast also works well for bloating and nausea.

After this protocol, I felt pretty good. My main symptoms, diarrhea, gas, bloating, and stomach pains, had reduced quite a bit. But SIBO has a very high rate of reoccurrence. One study found a 44% rate of relapse nine months after patients had taken Rifaximin, which is pretty depressing.

So I wondered whether I would still feel any improvement in another six or twelve months. Honestly, after doing all the research on SIBO that I had done, I did not have high expectations. I assumed I would slowly start feeling worse as time went on and end up about the same as before I took antibiotics.

How I’m doing 1.5 years after antibiotics treatment

I meant to do an update at the one year mark, but life got in the way, so here I am at 1.5 years past antibiotic treatment. So far, things are actually pretty good, better than I expected!

I still have a few bad days here and there, maybe one a month, or even less than that. The bad days are usually only bad for about two hours or so. When I have symptoms, it’s almost always in the morning, and often when I’m traveling or something anxiety-inducing or stressful. I don’t have much bloating anymore, and way less stomach pain. In fact, I almost never have random stomach pain at this point, which is great. The nausea I often use to have is also a rare occurrence now.

As for what I do as maintenance, I feel very lucky that my SIBO is now super low maintenance. I still take low dose Erythromycin and Iberogast as prokinetics.

For my diet, miraculously, I don’t really avoid any foods anymore! I ever have started drinking coffee regularly which for me is a BIG change. I’ve always had a love-hate relationship with coffee. I love the flavor, but in the past it would often upset my stomach and cause diarrhea and pain. For years I mostly avoided coffee because it was too much of a chance to take.

But for the past few months I’ve been drinking coffee almost daily, with no ill effects. That’s something I never thought would be possible. After years of avoiding various foods out of fear, without any clear benefit, it’s great to eat pretty much whatever I want and not worry about it.

Overall, I would say I feel about 75-80%, whereas before my treatment I felt about 50%. I doubt I’ll ever feel 100% “normal” though.

What’s next for my SIBO treatment…

Unfortunately, my amazing gastroenterologist recently moved to a new location that is a little too far away for me to justify visiting, given how good I feel now. But I still need to refill my prescription for low dose Erythromycin, so I decided to see a new doctor at the same practice.

Fortunately the new doctor I saw is very educated about SIBO and seemed up to date on it. My main question for her was whether there was any room for improvement given I feel pretty good, but not 100%.

She wasn’t sure, but suggested we repeat the breath test to see what my hydrogen and methane numbers are currently. Some sources correlate that the amount of improvement with breath test numbers, although my doctor says they don’t always correspond.

But, repeating the breath test will give us an idea of whether any further antibiotic treatment might be helpful. If the numbers are normal and don’t indicate any remaining overgrowth, then there would be no point in further antibiotic treatment. If my numbers are still elevated, then a further course of antibiotic treatment might offer improvement. I would have to decide if that’s something I’m interested in pursuing. I don’t know if I would, given I already feel pretty good most of the time.

My new doctor and I also discussed changing my prokinetic. I have no side effects from the Erythromycin or anything, and I feel like it’s working pretty well since I haven’t relapsed, but I wondered if another one might be better.

We discussed the new prokinetic available in the U.S., called prucalopride, brand name Motegrity. My doctor said that insurances will only approve and pay for it if your main symptom is constipation (which is not my case). We looked up the price in Canada, and it was about $135 a month. Given the Erythromycin is about $3 a month with my insurance, and I am pretty happy with it, I definitely will not be trying Motegrity. So, for now I will stick with rotating Erythromycin and Iberogast.

I am curious to see how my breath test compares with my first breath test. My hydrogen numbers in particular in my last breath test (taken before treatment) were very high. Methane was also elevated as well.

So that’s how I’m doing! I feel pretty darn good, and I feel very lucky that my treatment has been fairly successful after TEN YEARS of suffering with undiagnosed SIBO. I will do an update after the breath test sharing what the results were and how they will influence whatever steps I take next.

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