My SIBO Story

During my last two years of college, fitness became a goal of mine—no specific goal other than to become a more fit individual. In my junior year, I would go to the gym three to four times a week with a close friend of mine, but my body never changed. Senior year started off similarly until I read Bigger, Leaner, Stronger and Strength Training Anatomy. My view on fitness completely changed. It was no longer a series of random movements but an engineering problem. Muscles were no longer these blobs hidden under skin but were a series of cells that connected to bones. Lifting became a science. The path to a fit body was clear. I started calorie counting at the same time but had one issue. I struggled to eat.

What I didn’t know at the time was that I’ve been struggling to eat for most of my life. I weighed 115 pounds at 5’6”. I thought it was normal to feel stomach discomfort all the time. I thought it was normal to happily eat half a meal and then force the second half. I assumed everyone did this. My one hint during this period of time was that I never craved food. If someone asked me what I would like to eat, I would lie.

For the next two years, fitness became my primary goal; everything else was second. My routine involved waking up at 5:00 a.m., having breakfast, reading for an hour, exercising for an hour, and getting into the office at 9:00 a.m. Every evening, I would stretch. The weekends were kept for other types of physical activity, like rock climbing, trail running, and hiking. I created the most scientific workout routine possible. I even took a DNA test to figure out my ratio of type 1 to type 2 muscle fibers just so I could figure out the ideal rep range. I timed my food to the hour and made sure I was getting all the macro and micronutrients. I wasn’t messing around; this was science. My goal had become clear: I wanted to hit 150 pounds with 10 percent body fat. I bought calibrated calipers to measure my body daily and went in for bod-pod measurements every three months. However, my numbers didn’t move outside of measurement error. 

On the eleventh of October 2018, around 3:00 a.m., I woke up in excruciating stomach pain. I dragged myself to the bathroom, but the toilet didn’t help subside my pain. I ended up lying on the cold tile floor while sweat dripped from my forehead. The cold tile created such a sensory shock that, for brief moments, I could forget about the pain in my gut. A few hours later, I was in the doctor’s office, and after going through a couple of tests, the doctor told me that I wasn’t going to die and should go home.

That wasn’t good enough for me.

The next six weeks were spent going to an allergist and researching possible allergens that could have caused this. My blood test had shown a highly elevated IgE (immunoglobulin E) value, which is normal for people with an allergic reaction. This turned out to be a useless path. But a null result is still a result

A few weeks later, I met with a GI specialist. I shared my story, and he did exactly what a doctor should do. He started to test me for the worst things that could result in these symptoms. By the way, when a doctor asks if you have lost weight recently, what they are really checking for is cancer. The first exams he recommended were a colonoscopy and an endoscopy. The exams had come back clean except for a diffuse inflammation on the lining of my stomach, which backs up the allergy theory from earlier. At the same time, we got back the results for a series of blood and stool tests, which had shown nothing interesting. At this point, I was praying for celiac disease just so I could move on. We then tried a gastric emptying exam (AKA eating a radioactive sandwich) and a CT scan. These also came back normal. 

Before each of these exams, I would watch videos of doctors performing them. I would read everything I could find, and as it turns out, the internet gives you access to everything. I got to the point where I knew the names of the tools, the checklists that were used, and all the possible complications. The doctor’s office became less of a mystery and much more of a science. It was honestly pretty enjoyable for me. My GI doctor likes to make fun of me because I’m his only patient who has ever spoken about the color calibration of the lights in an endoscope. Even the nurses know that I will always ask for the raw data. 

There was also a dark side to this. It made me impatient. Not only did I want to find a cure for my pain, but the knowledge of these exams exacerbated my impatience. If the exam were simple, like the breath test, I would run loops in my mind of how the doctor could production-line this test. This was honestly a great distraction from the pain I was dealing with. This impatience would manifest itself as a call to the doctor’s office at 9:00 a.m. every morning asking if there were any last-minute cancelations. For me, if this process would save me from another day of pain, it was worth it.

At this point in time, I had my fitness on hold. I still went to the gym and counted calories, but I didn’t push myself as hard. I knew it wasn’t worth it. I did, however, try experimenting with some less than scientific theories. The internet not only has details on the color calibration of the LEDs in an endoscope, but it also contains hoaxes. When you’re as desperate as me, any solution is a solution. I tried probiotic pills, yogurt diets, licorice root, and caffeine pills. Some of these had a great placebo effect, but unsurprisingly, they were short-term solutions. 

One of the last tests we conducted was the hydrogen breath test, which came back positive for SIBO (Small intestinal bacterial overgrowth). This test involves fasting for twelve hours and then drinking a specific sugar. As the sugar goes through your body, the overgrowth of bacteria will create an excessive amount of hydrogen that can be measured through your breath. During the test, I was marking down the numbers with the nurse and comparing them to my research. I was proud to have made the diagnosis based on all my reading. A little while later, my doctor prescribed me the best antibiotic that is supposed to cure SIBO, and it worked . . . for five weeks. Slowly my symptoms came back. 

The GI tract is the second-most complicated part of the body, the first being the brain. In terms of bacteria and the actual chemistry, there is very little that we know about it. Doctors have found one technique that helps people live pain-free. It is their last-ditch solution. It’s called a low FODMAP diet. FODMAP stands for five types of short-chain sugars that are found in nearly all foods. The diet consists of removing all of them and slowly reintroducing them back. I started this diet on 10/18/2019, a little over one year after my first doctor’s visit. I’ve been pain-free since. The size of my torso also decreased; apparently, I had been continuously bloated for years. Through trial and error, I found that I’m able to eat a high FODMAP meal about once every two days without any pain. Any more frequently, and I’m back in pain. The first few weeks of this diet were tough, but after some time, it becomes normal. A nice side effect of this diet is that it reduces the amount of junk food I can eat. Nowadays, my diet consists of rice, potatoes, meat, and some fruits and vegetables. I’m able to eat full-sized meals without pain. I’ve even started craving food again. 

Pain is an interesting sensation. We can’t actually share pain; at best, we can use analogies to describe the pain, but the true sensation is deeply personal. I spent years hiding my pain, and no one realized it. Now that I’m pain-free, I struggle to fully remember what that pain felt like, but it still happened. Throughout this process, I had to keep reminding myself that it was real and not just in my head.

In November of 2019, I pushed my doctor to give me a hydrogen/methane breath test. The methane part of the test helps identify the specific type of SIBO. I took the test in December. It took a few weeks for me to get the results, and it came back positive for both. No one ever wants a positive result, but, god damnit, it is deeply satisfying to get one. My research found that Neomycin and Xifaxan were the best antibiotics for SIBO. My doctor agreed and put me on them for two weeks. Xifaxan is a pretty easy drug to swallow. It’s a little large, but nothing too bad. Neomycin is the worst thing I’ve ever put into my body. It’s a large pill that tastes like metallic sand. Its number one side-effect is vomiting. The second-most common side-effect is diarrhea. My doctor gave me cancer-grade anti-nausea meds. Everything about those two weeks sucked. Once that ended, I was absolutely terrified to try normal food. But slowly, I did. One bite at a time.

It took me so many years to admit to myself that I was in pain. It then took an intense year of describing my pain, researching my pain, testing my pain and finding a cure that I can finally eat a completely normal diet. I love life. I love that don’t need to check the ingredient list anymore. I don’t need to track my bowel movements. I don’t need to read research papers every night. I can finally live a normal life.

This was in February of 2020, just before COVID-19 hit.

My relationship with food has changed a lot in the last year and a half. I briefly hit 160 pounds in January 2021, which was weird. I’ve never actually felt fat before this. This was a new experience. I went and purchased medium-sized clothes, which are so different from the extra- small that I would normally purchase.

Here we are in August of 2021. I’ve stabilized at 145 to 150 pounds and am restarting exercising. I have gone through three or four waves of exercising in the past year and a half. However, COVID-19, moving, work, gym openings, and muscle imbalances have made it difficult to maintain a routine. I’m hoping to achieve my goal of 145 pounds at 10 percent body fat. I can see the finish line.

*This is not intended to have any medical advice, please seek proper medical advice*

Research: Johns Hopkins, NCBI - Alcohol’s role in GI disorders, Hydrogen/Methane Breath Testing, Use/Abuse of Hydrogen Breath Testing, How to Interpret Hydrogen Breath Tests

FODMAP: iOS App, Benefiber, IBS Diets

Hoax Sites: Amy Myers MD, Dr. Jolene Brighten

[Last Updated: August 2021]