May 19, 2024

We Are Entering an Age of IBS Empowerment

According to Dr. Sanghavi, this treatment works fully about 60 percent of the time; 40 percent of patients have partial or no response to the drugs. Frequently, even a successful round of antibiotics offers only temporary relief. Dr. Sanghavi estimates about 40 percent of her patients have their SIBO return after three to six months. Many more see it recur after a year.

Another common treatment for IBS/SIBO is the low-FODMAP (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) diet. But it’s so restrictive (no dairy, wheat, beans, and more) that both Dr. Sanghavi and Dr. Pimentel note it’s unhealthy to stay on for more than a few months.

Even though there is no cure for IBS right now, and the possibility of needing repeat SIBO treatments is high, receiving a diagnosis with clear next steps can be its own form of therapy.

When Dr. Sanghavi told me I had SIBO, I was relieved to be neatly placed in a category with other patients I could potentially seek out for support.

«It’s this fear that my body’s rotten on the inside and if people see that inner rot, they’re not going to like me anymore. »

One of those patients is Lisa Hanawalt, a writer and illustrator who created the animated series Tuca & Bertie. In 2019, around the time I was diagnosed, she posted a comic based on her own experience of being diagnosed with the condition. Two of the slides read, «Damn, feels good to know I’m not just insane. This isn’t all in my head, or all my fault. » It can be very lonely to have a chronic illness, especially if yours comes with a side of anxiety that makes it feel impossible to ask for accommodations from friends, coworkers, and family. As Hanawalt tells me, «It’s this fear that my body’s rotten on the inside and if people see that inner rot, they’re not going to like me anymore. »

Her fear is not entirely rational. But it’s not entirely unfounded either. There remains a sort of public weirdness around IBS. «[IBS is] still sometimes made fun of in movies and TV. You don’t see people making fun of Crohn’s disease,» says Dr. Pimentel. «You don’t see people making fun of ulcerative colitis, but IBS, they do. »

And I get it. I can appreciate a good poop joke, and IBS is genuinely not as serious as many other chronic illnesses. «IBS is not life-threatening,» says Dr. Pimentel. «It’s not cancer or heart disease. » If you, like Hanawalt did, bring hot soup to a friend’s summer party because you’re having a bad flare-up and can’t tolerate any other food, people are probably still going to say «are you eating fucking soup? ! » to you.

A Brighter Future for People With IBS

But perhaps we’re entering a new era. These days, plenty of people are making videos about their bowel movements and severe bloating to share on social media. («Happy to be an IBS influencer in any way,» Hanawalt jokes when I thank her for taking my call. ) The Reddit community r/ibs has almost 80,000 members; there, if you ignore the occasional fear-mongering «advice,» you’re sure to find someone else who experiences gas pain that is akin to sending a thousand blades on a self-propelled fidget spinner through your intestines.

When even a definitive diagnosis brings up more questions than answers, it makes me feel like I’m a part of something to know I’m not the only one who’s sat sweating on the subway trying to figure out how everyone would react if I just shit all over the train.

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