Welcome to the age of IBS empowerment (and it's all thanks to social media)

"Ah, estás embarazada!" My partner's aunt exclaimed, gesturing to my stomach, which I'd been rubbing inconspicuously (I thought) since we sat down at her family's kitchen table. I was not, in fact, pregnant with my first child, though the confusion was understandable: My stomach was bloated to second-trimester size, and even if my Spanish was perfect I wouldn't have been able to explain why.

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For a woman in her 30s in the year 2023, having a messed-up belly is hardly a unique occurrence. An estimated 40 percent of the global population has some sort of functional gastrointestinal disorder (FGID), the most well-known of which is irritable bowel syndrome (IBS). These disorders present in women twice as often as men. FGIDs are basically any type of tummy troubles that have vaguely mysterious origins and don't show up as abnormalities in standard blood tests, X-rays, or other diagnostic tools. IBS usually presents as chronic, extreme stomach pain and abnormal bowel movements; you can have IBS- C(onstipation), IBS-D(iarrhea), or IBS-M(ixed).

People have been feeling sick to their stomach for centuries, but thanks to social media it seems like everyone’s finally talking about it. (TikTok's official declaration is that all hot girls have stomach issues.) And since FGIDs disproportionately affect women, some might even call it a feminist act to post about poop.

For most people with IBS, the road to a diagnosis is long, uncomfortable, and can start only when you do something many don't: Ask your doctor for help. While it used to be widely accepted that IBS and other FGIDs were caused by neurological disorders, doctors now are less convinced this is the case. However, people with IBS still tend to be people with anxiety. "Two-thirds of the anxiety among patients with IBS happens after the disease starts," says Mark Pimentel, MD, a gastroenterologist, and the executive director of the microbiome-focused Medically Associated Science and Technology (MAST) Program at Cedars-Sinai in Los Angeles. A large part of this is due to what might be the most frustrating feature of the disease: its unpredictability. If I knew that my flare-ups would come every time I ate pizza, I'd probably just stop eating pizza (...probably). But sometimes I eat pizza and I'm totally fine in the morning; other times I eat the exact same pizza from the exact same pizza shop, wake up with debilitating stomach pains, and have to spend the better part of the day having explosive diarrhea. "That's classic IBS," Dr. Pimentel assures me when I tell him this. "Your symptoms are irregular and unpredictable…[Patients with IBS] can't plan and that's also anxiety provoking." So while it's possible that anxiety could also make GI symptoms worse (the connection there has yet to be proven), "IBS makes people anxious because they can't just be relaxed," he says. In my case, this symptom rollercoaster combined with anxiety about bothering anyone (including my doctor) over something that felt like it could be a fluke delayed my seeking formal treatment. 

But, eventually, there comes a point when you decide you've come close to soiling yourself one too many times (I could tell you a harrowing tale of a Thursday evening commute on New York City's G train after a particularly spicy bowl of ramen). Then, testing can begin. IBS is usually diagnosed by ruling out other conditions because there are no biomarkers of the disease. Unlike with Crohn's disease or colon cancer, blood tests and colonoscopies come back normal if you have IBS. "Oftentimes, patients have seen multiple doctors to get a diagnosis or discuss their symptoms," says Reezwana Chowdhury, MD, a board-certified gastroenterologist and assistant professor of medicine at Johns Hopkins in Baltimore. These patients often feel frustrated with still being in the dark and Dr. Chowdhury says one of her biggest hurdles is getting them to practice patience through additional treatments and tests. Immediate answers just aren't realistic for this disorder.

I was relatively lucky. At 25, I finally mentioned my stomach symptoms during an annual physical. Testing was minimal compared with the experiences of other people I spoke to for this story: I had some blood tests to rule out food sensitivities and an endoscopy to rule out acid reflux. Then, in 2018 when I was 28, I decided to see a specialist, Manhattan-based gastroenterologist Moushumi Sanghavi, MD, whom I also spoke to for this piece. During our first appointment, she recognised my symptoms as typical of IBS-C caused by small intestinal bacterial overgrowth (SIBO).

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Angela Trakoshis, a commerce editor at Allure who has IBS-D, had her first colonoscopy when she was just 26. Sarah Mullery, a 32-year-old event planner who lives in New Jersey, says there are 13 tests — ranging from noninvasive breath tests to colonoscopies — she remembers having on her journey to being diagnosed with SIBO and leaky-gut syndrome.

The Link Between IBS and SIBO

If IBS is the mystery that lures Hercule Poirot to the scene of the crime, SIBO may be the newly discovered clue that comes barging into the second-to-last chapter. "Generally, the stomach and small intestine have low bacterial amounts because of gastric acid and the motility in the small bowels," Dr. Sanghavi explains. "Small intestinal bacterial overgrowth is when you actually have colonic bacteria in very high numbers in the small bowel." Dr. Pimentel says that attempts to find the connection between SIBO and IBS have "been in the works for about 20 years now." According to him, "It's pretty clear that about 60 percent of IBS is SIBO." The most prevalent symptom of SIBO is extreme bloating — say, the level to which someone would assume you were well into your second trimester.

Unlike IBS, this extra colonic bacteria will quickly reveal its presence at your intestinal party when you complete a breath test, which can be a DIY at-home process that feels like your doctor has you on a hidden-camera prank show. It involves eating nothing but foods like plain chicken and white rice for 24 hours, then chugging a diluted lactulose or glucose solution, and, finally, using tiny plastic straws to breathe into tiny glass tubes, bags, or other devices every 15 minutes for two to three hours. When that sweet, sweet sugar solution hits your small intestine, the bacteria gobble it up and release hydrogen, methane, or both. The levels of those gases reveal what type of an overgrowth situation you’re dealing with, which helps determine treatment options — usually a two-week round of antibiotics to knock out the bad bacteria. I can attest that the process is not what you would call a breeze: During those two weeks, I was exhausted and felt as if I was coming down with a nasty cold, at one point experiencing a migraine so bad all I could do was sleep in a dark room for 24 hours. Getting up to pee was a struggle that involved dramatically crawling across the kitchen floor to the bathroom.

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. 

Receiving encouragement from your TikTok feed only goes so far, of course, if you don't have easy
or affordable access to a gastroenterologist. Because IBS is so mysterious and SIBO research so relatively new, many general practitioners aren't familiar enough with the conditions to treat them. Still, the doctors I interviewed for this story warn against giving into the temptation of over-the-counter supplements and diet companies that claim to be able to "heal your gut." As with any supplement, the FDA does not approve these treatments and they rarely have clinical studies to back them up. 

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All the IBS and SIBO patients I interviewed for this article expressed varying levels of trepidation to share their stories, but ultimately hoped it would encourage other people to seek out treatment. As Marilyn La Jeunesse (28, IBS-D) puts it: "I've never actually shared any of this before… kinda scary but maybe it will help someone else." La Jeunesse says she’s always had symptoms, but was so embarrassed to talk about pooping with her doctor that she preferred to suffer — even after "an unfortunate incident in an Albertson’s parking lot."

"I deeply regret this decision," she says now. "If I’d gone to a doctor earlier, I think my adult life dealing with IBS would have been much different." Several of the people I spoke to ended up in the hospital as a result of untreated IBS, including Julia Guerra (30, IBS-C) who, in 2019, was admitted to the emergency room for flu-like symptoms that turned out to be caused by extreme constipation. "I was essentially prescribed colonoscopy prep to flush myself out, and was given the name of a new gastroenterologist," Guerra recalls, noting that the new doctor “has truly changed my life." After two years of being on Amitiza (a prescription laxative that I've also had great success with) and following her doctor’s recommended intake of fiber and water, Guerra was able to stop the medication and now only relies on diet and lifestyle to manage her symptoms.

"Why suffer if there are treatments? I think this is a time of empowerment for IBS."

"If you have IBS, there are treatments now," Dr. Pimentel says. Were you one of those people told to to kindly buzz off with your stomachaches 10 years ago? Get tested again. "We understand IBS a lot better," he says. "Why suffer if there are some treatments available? I think this is a time of empowerment for IBS." Dr. Pimentel's team at MAST has even developed the first blood test that can be used to diagnose IBS, and not just by a process of elimination. But it works only if the IBS was caused by a bout of food poisoning (which, Dr. Pimentel thinks, is extremely common). Widespread access to this test would eliminate the need to rule out other conditions using more invasive methods first.

As I write this, I feel like a hot girl who is mostly in control of her bad stomach. I have a supportive partner who understands when I need to just lie down with a heating pad for the night, and plenty of friends (both IRL and online) to vent with about shared symptoms. The amount of miles I run each week seems to inversely correlate to the amount of bloating and pain I experience. I recently did my third round of antibiotics in four years and, as with the previous two, it seems to have reduced my symptoms to nearly zero. I know that in a few months I will start to feel sick again, but knowing the name by which to call my frequent stomachaches gives me comfort — and a community to lean on.

This story was originally published on Allure.