From social media to pink billboards, it’s suddenly ‘hot’ to discuss gut diseases

LOS ANGELES — Near the corner of busy Santa Monica Boulevard and Corinth Avenue, underneath lines of skinny palm trees and against an almost perpetually bright-blue sky, a hot pink billboard declared: Hot girls have IBS.

That statement, hovering last month above smoke shops, animal clinics, and pharmacies in West LA, is a reflection of a broader cultural moment, happening largely on social media, wherein people are talking about their gastrointestinal problems, without shame, and with vigor.

Irritable bowel syndrome has become, half-jokingly, a membership card for a club of online it-girls, generating a wider conversation about health, seeking out care, and advocating for oneself in the doctor’s office. An unintentional movement propelled by 140 characters or seconds, it’s helping people talk about everything from the mildly uncomfortable to severe, chronic conditions. There are the young women making jokes about bloating and recommending tummy-friendly foods, and those, like blogger and TikTok creator Renée Welch, who are giving visibility to an incurable suite of more disabling chronic diseases affecting their insides — in her case, Crohn’s disease.

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It is difficult to know where exactly the “Hot girls have IBS” trend started. Some might trace it to Millennial and Gen Z tendencies to share too much information online, or to the rise of TikTok during a global pandemic. Perhaps there’s a bit of rapper Megan Thee Stallion’s signature line (“I’m a hot girl”) in there.

Among the first to declare on Twitter that “hot girls have IBS” was @pieceofcrust, who in real life is 25-year-old Connie Shepherd. In early 2019, she typed out the tweet to her small following.

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All hot girls have IBS jsyk

— downtrodden waif (◡‿◡❁) (@pieceofcrust) May 16, 2019

It was just an observation, she said in an interview. It just always seemed to Shepherd that the “prettiest, tiniest girls that I knew (at the time and currently) were always complaining about tummy problems. … These are the same girls with food sensitivities, irregular bowel movements, girls and women who experience bloating, dietary restrictions — all of the same breed.”

Like those women, Shepherd has struggled with irregular and sometimes painful bowel movements since childhood. She self-diagnosed with IBS, which has become something of a catch-all term for stomach-related troubles with unknown causes. While IBS can be uncomfortable and inconvenient, it’s quite different from Crohn’s and other types of inflammatory bowel disease (IBD), which is considered by some to be an autoimmune disease — the result of an overactive immune system attacking the digestive tract.

There seems to have been a surge of gut-related health issues in recent decades, and nobody knows why. Theories range from certain disorders being responses to infection, or damage to the gut microbiome from childhood use of antibiotics. Others blame the preservatives and hormones in the food supply. Part of it may just be increased awareness, or the fact that physicians have better tools now, such as blood tests that can detect inflammatory markers from the bowels or tiny cameras that can be swallowed to investigate the walls of the small intestine.

Shepherd, a fine dining line cook born and raised in Indiana, tries — but not too hard — to manage her symptoms on her own.

“If I were to eat three balanced meals a day and get plenty of exercise and avoid certain processed foods that are rough on the gut, it’d be smooth sailing, but I have to wonder if something like that is attainable for a full-time hot girl,” she told STAT.

Her tweet was mostly just for fun, but is now part of the Hot-Girls-With-IBS canon. “I do think it’s cool to open up the conversation about poops,” Shepherd said. “We can learn so much from our poops.”

Twitter and TikTok are full of posts in this genre, in which people disclose outwardly embarrassing experiences about health problems. And then, the act of sharing it, often in the form of a funny clip or meme, catalyzes those cringeworthy moments into relatable content — into something hip. Hashtags like #guttok and #ibstok, which together account for over half a billion views, can also set users on a path of seeking out more information about concerns they might have brushed away.

“I think that it’s quite a phenomenon,” said Sophie Balzora, a gastroenterologist and clinical professor of medicine at NYU Grossman School of Medicine. “It absolutely helps destigmatize things. I think that it helps people familiarize themselves with their disease or their syndrome.” She added, “Nowadays, when I mention that the patient might have IBS, they already know what I’m talking about.”

The first couple of pink billboards have come down, but others sit pretty above traffic in LA, Orange County, Calif., Portland, Ore., and Times Square.

Katie Wilson, CEO of BelliWelli, a company making IBS-friendly cookies, dreamed up the marketing campaign as she drove around LA. About seven months after launching the company in March 2021, she wanted something that would catch people’s attention, and make talking about gut trouble fun. “Let’s reclaim this conversation in this space,” she told STAT.

As a person who’s struggled with IBS for years after a rough bout of food poisoning on a trip to Mexico, Wilson knew the exhausting process of trying to fix gut problems. In one year, Wilson did 16 rounds of antibiotics. She did colonoscopies, breath tests to rule out a bacterial infection, capsule endoscopies, and diet supplements. She tried steroids and other medications prescribed for gut issues. Nothing was a panacea.

She cut her diet down to six meals she could safely eat, and found community and plenty of buzzwords on Facebook, and eventually became a moderator for some IBS-related groups. “You need a support network, you need someone to tell you you’re not crazy, you need someone to tell you, ‘I hear you, I see you,’” she said. “There’s really this mental health component.”

While pregnant, Wilson raged at the unfairness of it all — she just wanted to satisfy her craving for some chocolate chip cookies. So her husband, Nick Wilson, set out on a six-month quest to craft a recipe that wouldn’t leave her in pain for days afterward. With some major funders, BelliWelli snacks were born, packaged in ostentatiously bright colored wrappers and packed with probiotics (some studies suggest consuming more “good bacteria” to help ease symptoms of IBS).

And then the billboards went viral. The third day after one went up in LA in October 2021, a shock of pink with stars and ombré rainbow lettering, Wilson drove by and saw a dozen people waiting in line to take a photo in front of it, she said. It was so successful as a marketing tool, that she trademarked “hot people have IBS,” too, just to be safe.

The billboards tapped into the zeitgeist created by social media, and capitalized on it.

“Now, all of the sudden, with social media, it’s like ‘Oh, wow, I’m not the only one. A million people just saw this post and they’re all making comments,’” said Peyton Berookim, a Beverly Hills-based gastroenterologist. “Patients now are more willing to see a doctor and talk about it.”

Berookim, who built his own brand as “the GI Doctor,” was Wilson’s specialist at the Gastroenterology Institute of Southern California, and eventually became an adviser for BelliWelli.

While IBS and more minor gastrointestinal problems can be managed, sometimes without medication, the similarly named IBD is an incurable condition that often leads to hospitalization and more severe symptoms. “It’s a very particular patient population, where we see people who otherwise have no medical problems but this just kind of comes like a hurricane into their lives,” said Balzora, the NYU doctor.

Anyone can have IBD, but data suggest Black patients have higher mortality rates, hospitalization rates, costs, and lengths of stay, worse postoperative outcomes, and less access to gastroenterologists, Balzora said.

Some patients sought her out specifically because she is a Black woman, and president and co-founder of the Association of Black Gastroenterologists and Hepatologists. “I definitely have a lot of patients, especially as of late, saying, ‘I found you. I’ve been waiting to see you … I was looking for a Black doctor,’” she said.

As a specialist in IBD, Balzora knows many of her patients don’t want to be in her office, even if they are comforted by having a Black doctor. Nobody wants to talk about bloody stool, or running to the bathroom due to incontinence, or other uncomfortable digestive problems, she said. And, on top of the inherent awkwardness, there are the many patients — often women, often women of color — who tell Balzora that they have not been believed, or had their symptoms dismissed by other clinicians as stress-related, no big deal.

Renée Welch knows the feeling. A Black Canadian woman who has garnered 95,000 followers on TikTok with her IBD content, she had just turned 9 when doctors diagnosed her Crohn’s disease. She has had a decades-long relationship with the field of medicine, not always a great one. Unlike ulcerative colitis, a form of IBD that affects the colon, Crohn’s can cause inflammation along any part of the digestive tract, as well as problems with the eyes, skin, joints, and bones.

Welch, who grew up outside Toronto, had pain in her stomach and wrists as a young girl, but shrugged it off, thinking they were growing pains. When it worsened, her mother took her to a family doctor. It took a year for doctors to sort through her symptoms and land on Crohn’s disease, “just because Crohn’s can look like a lot of things, and IBD can look like a lot of things,” she said. Having a mysterious, chronic illness at a young age was deeply isolating for Welch, who kept the diagnosis to herself even as her health deteriorated and her weight dropped drastically.

In school, classmates spread rumors about her having an eating disorder. “But, to me, I felt like I’d rather hear that than hear, ‘Oh, she has a disease,’” said Welch, now in her mid-30s.

By the time she was in her 20s, she was masking her disease every day. Her sole focus was on showing up to her full-time job at a bank and being perceived as a good employee until she could go home and sleep. It took all of her energy to do small, simple tasks. During the lunch hour, Welch would go to sleep in her car. She was so ill she could hardly eat, and she didn’t want her coworkers to notice.

The cover-up continued until one day, Welch’s boss acknowledged the problem and said Welch would not be allowed to travel for work until she got her health in order. She couldn’t hide her illness anymore.

“There’s already a microscope on me being a Black woman,” she said. “So the fact that being a Black person and showing up to work and not looking amazing or always achieving, I think that’s a pressure that was put on me when I was at a young age.”

For more than a decade, she had tried everything from dietary changes to medication, but reached a life-or-death inflection point almost four years ago. She chose to have surgery to remove her colon and rectum, which had been narrowed so much by her disease that her doctor couldn’t even do routine check-ups. The surgery rerouted her intestines so waste now passes through a small opening in her abdomen, into an ostomy bag, which Welch named Stanley to help her family adjust to the change.

During her recovery, she started a blog, Beautifully Broken, to analyze her feelings. That eventually turned into her popular TikTok page, where she shares short clips — sometimes funny, sometimes serious, sometimes celebrating a good hair day — about her life with Stanley. She talks about advocating for oneself as a patient, a skill she had to learn over the course of years. Shortly after having her surgery, Welch went in for a yearly MRI and was told she had what appeared to be a cancerous mass in her abdomen. It was the second time doctors had given her such a scare — and both times, it turned out she didn’t have cancer. She is still working through the medical trauma of those experiences.

Outside the hospital, she navigates a prejudicial world with a chronic illness, and talks with her community of followers about how to do everything from clean and prep the stoma in her abdomen, to how to dress with an ostomy bag. Notably absent on her page is mention of “hot girls with IBS.”

“This isn’t the pain Olympics,” Welch said, “but I just know that in the IBD community, whenever we hear someone say IBS and they try to group them together, it’s just like, man, we wish it was IBS.”