Back in 2016 I wrote one post about my battle with SIBO – Small Intestine Bacterial Overgrowth – and nothing since. Little did I know then that I’d be diagnosed with a bone tumor and life would change in dramatic ways.
At the time of my post I was seeing a nutritionist who had me on a strict diet regimen, and it appeared that it was working. However, my weight continued to drop. I reached 130 pounds. One of our clients, a doc at a local hospital, expressed extreme concern over my condition, and even asked if I’d had an HIV test. My clothes hung on me loosely, my face was sunken, my pallor made people uncomfortable. I looked desperately ill.
My attempts to lead a semi-normal life proved to be dangerous. I had no reserves, my constitution was nil. I’d fall out exerting the slightest of efforts – literally nearly collapsing. I wound up in the hospital after an attempt at a casual mountain bike ride, bonking out and wrecking a mere mile and a half into a trail I used to ride without giving it a second thought.
Finally, I took another SIBO breath test… and my numbers came back higher than they’d been before treatment had begun. I wasn’t cured of SIBO. My lack of symptoms was due to the fact that I wasn’t feeding the bacteria – because I also wasn’t feeding me. I went back to my nutritionist with the results. She was buffaloed – her regimen usually worked, she insisted. She also seemed to look at me with fresh eyes. Even though I’d been seeing her at least every other week during my process of wasting, it was if she was seeing what I’d become for the first time. “Eat,” she said. “Eat anything. Eat everything. Don’t worry about your SIBO. You need to put on weight. Eat.”
“Then,” she continued, “we’ll start again.”
I couldn’t imagine that. I couldn’t imagine doing this again. I went home and looked at pictures of myself from a year prior and compared my now-skeletal face with what I saw. If this was the cure, I thought, it may be worse than the disease. And what if we did this all over again and my numbers still didn’t go down? I spoke to her about my concerns. How could she explain the rise in my numbers when we had been starving the bacteria? How would repeating the process prove any different from the first results? What was I doing to myself, to my greater health, in the process?
She had no answers. She was, effectively, a one trick pony. She had this regimen, and most of the time, according to her, it worked. But it was clear that if it didn’t work, she had nothing else up her sleeve. No other ideas, no other options, no other wisdom. To her credit, I suppose, she didn’t pretend to have answers. She simply didn’t know why it hadn’t worked, and her only recourse was to do it all over again.*
I cancelled all my future appointments with her. I couldn’t do it again.
Since then I’ve basically continued to, with varying levels of success and failure, manage SIBO. I still have it. Stress still effects it. I still have to be very, very careful with my diet. And often, it doesn’t matter – by the end of the day I’m a wreck. But I’m back up to 150 pounds. I don’t look like I’m dying. I’m able to engage in modest exercise and physical activity, usually. I’ve given up on taking most of the herbals and supplements I’ve been prescribed over the years – I have a basket in my office with literally thousands of dollars worth of them, and I can’t bring myself to throw them out.
Roughly a year after my lowest point I was diagnosed with a Giant Cell Tumor of the tibia (the journey of which is extensively documented on this site). I won’t lie; because the origins of GCT are unknown, but some think it’s hormonal, I’ve wondered if the process that turned me into a walking skeleton might have contributed to its development. Obviously I can’t know.
What I’ve learned, going through my SIBO journey and joining SIBO support groups on social media, is that I don’t believe that SIBO can be cured. Not right now. Not yet. Quiz anyone who says they’ve been cured and you’ll discover that they have to maintain a strict diet. They’ve had to change their life permanently. I have never – ever – come across a person diagnosed with SIBO who can now eat whatever they want, whenever they want. They’re not cured – they’re successfully managing the bugs in their gut. I quickly stopped making this distinction on support pages because people get angry and defensive. They desperately want to be cured. They want to believe they’re better. And I understand that. But they aren’t. It just isn’t so.
*Understand, I didn’t just use this nutritionist in my journey to defeat SIBO. I’ve seen traditional western doctors, acupuncturists, Ayurvedic practitioners, chiropractors, holistic witch doctors – I’ve been poked, cupped, cracked, soaked, rubbed, hypnotized, I’ve had someone ring fucking bells around my body for some shit with my chakras – you name it. I’ve taken specialty antibiotics that cost hundreds per pill to capsules filled with what’s essentially bark. I’ve abandoned veganism, and then briefly vegetarianism, in the pursuit of a cure. I could easily write a dozen other posts covering all I’ve done thanks to SIBO, but I’d rather not. Writing this one seemed like a necessary part two for the post back in 2016 when at the time it seemed like I was finally getting ahead of this condition. Turns out, I wasn’t.