8 Must-Meet TikTokkers Who Post on Crohn’s Disease
These young people—including a dancing doctor!—have fun and crush stigmas as they educate others on life with an IBD.by Amy Marturana Winderl Health Writer
Most of us keep our bathroom habits—and any ordeals that involve misfiring bodily functions—on the serious down-low. So close to the vest, in fact, we’d shrink in embarrassment if asked to discuss them.
But for people who have Crohn’s disease, a type of inflammatory bowel disorder (IBD) that can cause painful inflammation of the gastrointestinal (GI) tract, staying silent means hiding a big part of their lives. Crohn’s can affect both the small and large intestines, triggering ulceration and tissue swelling, which makes it hard for the body to properly digest food and absorb nutrients. It can result in symptoms like abdominal cramping, frequent diarrhea, blood in the stool, and weight loss. Not eating to avoid symptoms isn’t an option, so frequent bathroom and doctor runs (and even surgeries and ostomy bags) are pretty much par for the course.
Still, Gen Zers and Millennials are two groups that are not exactly known for shying away from public expression. And since Crohns’s most often strikes between the ages of 15 to 30, who better than these young people to open up and change the conversation about Crohn’s on social media?
Search the #crohnsdisease hashtag on TikTok, and you’ll find plenty of young people getting real about what it’s like to live with the disease. You’ll also discover doctors and nurses who treat IBD patients, educating the online masses about Crohn’s treatments, too.
These eight must-meet TikTokkers are blazing a social media trail to spread awareness, normalize this chronic condition, and help people make light of their situation so they know they’re not alone.
1. Frida Karoline, @fridakaroline96
Number of likes: 31,700
Her must-see post:
Frida Karoline’s strategy for coping with Crohn’s? Dance away the pain. “I have a difficult and aggressive Crohn’s,” she shares. “It’s been a rollercoaster ride, to say the least! I have now tried every medication that exists here in Norway for my disease—even [surgically removed] some of my intestines—but unfortunately nothing works. The doctors really don’t know what to do with me.” But Frida, 24, refuses to let these challenges get her down. “It’s easy to just lay down and give up. But even though life sucks sometimes, it’s important to focus on the positive sides so you don’t drown in all the negative.” She tries to make the best of all her time in the hospital by creating videos that will make other people smile. She hopes her posts will spread awareness, and also help other people with the condition feel less isolated. “There are a lot of people that have reached out and thanked me for being open,” she says. “It gives me so much knowing that my misery can help others.”
Our fave recent quote: “Even though life sucks sometimes, it’s important to focus on the positive sides so you don’t drown in all the negative.”
2. Mesha Moinirad, @mr.colitiscrohns
Number of likes: 4.6M
His must-see posts:
Mesha Moinirad shares video after video of himself doing something that’s really business-as-usual for him, but may be new (or even alarming) to people who don’t know much about Crohn’s disease: changing his colostomy bag. He shows his stoma (the opening in his abdomen where waste can exit his body into the bag) proudly. He says that it did save his life, after all—and he answers questions about what it is, how it works, whether it hurts, and how often he has to change it. He also gets real about the negative comments he receives, because naturally there are plenty of haters out there who aren’t shy about telling him his posts are disgusting, and that he shouldn’t be so public with his health challenges. But Moinirad's got guts: He continues to post videos of his bag-change regularly in an effort to raise awareness for IBDs, and to normalize life with an ostomy bag.
Our fave recent quote: “You may find it an uncomfortable subject, but it’s saved my life. I will never be ashamed!”
3. Rebecca Winderman, M.D., @kidsgastrodoc
Number of likes: 1.4M
Her must-see post:
Dr. Winderman is a pediatric gastrointestinal doctor who uses TikTok to post educational videos about all sorts of GI issues, including Crohn’s disease. Her videos usually feature her absolutely crushing a TikTok dance, overlaid with informative text that sometimes passes for free medical advice. It’s an engaging way to teach people about medical topics that could otherwise be hard to understand. Of course, her fun lessons are only as in-depth as 60 seconds permit—yet impressive, too, when you consider how much awareness they can raise in just a minute. Still, with nearly 70K followers and 1.4 million likes, it’s probably safe to say that a lot of people respond to this type of quick-and-dirty health brief. Some of her videos are specifically about IBD, while others cover related topics, like the importance of an endoscopy, and when to see a gastroenterologist.
Our fave recent quote: “Please stop taking Tums! The calcium in them causes rebound acidity, leaving you always wanting more. Pretty smart, huh?”
4. Shayn Johnson, @theofficialcrohns
Number of likes: 8.3M
His must-see post:
Shayn Johnson’s TikTok mostly features videos about working out, with some funny posts peppered in. Every now and then, the fitness and pit bull lover, 25, throws in something about Crohn’s disease. The reason he started posting about his condition is because watching videos from other people with Crohn’s helped him during the early days of his own health journey. “I always watched the people who were recovering or who entered remission. They gave me hope during my dark times ... I wanted to return the favor,” he says. This video of him eating ice touches on a potential side effect of IBD, anemia, a condition where the body doesn’t have enough healthy red blood cells to circulate oxygenated blood to all the organs. Some people with anemia get a strong urge to chew on ice—and the reason isn’t well understood. Research shows how chewing may increase blood flow, so people with anemia may feel compelled to do it. According to the Crohn’s and Colitis Foundation, approximately one in three people with Crohn's disease or ulcerative colitis develops anemia because irritation and swelling in the GI tract can make it harder for the body to absorb iron properly. Poor absorption of vitamins and minerals, plus intestinal bleeding, contribute to iron deficiency, too.
Our fave recent quote: “To all the fellow Crohnies that are in deep pain and suffering: I just want you all to know it does get better with time. Stay positive and know that your day will come.”
5. Ellie Cunningham, @elliecunningham_
Number of likes: 192,800
Her must-see posts:
Ellie Cunningham has had Crohn’s disease for almost 8 years. Now 22, she was first diagnosed at 15 and admits that at times it’s been daunting and scary. “My disease turned out to be extremely severe, and as I got older, it got to the point where my treatment wasn’t working. Surgery became my only option.” She had four surgeries in nine months, including having her colon removed. She now goes into the hospital for an infusion treatment very eight weeks. Her videos share some of the realities of life with Crohn’s, with a humorous twist. She’s willing to be so frank about her health struggles with the online community to be an example to others with Crohn’s that, yes, life and the disease can get better. “I’m healthy, thanks to my ileostomy,” she says. “A lot of people don’t share their stomas or their illness because of the stigma. I share what I do to help people who are also experiencing it. I share to educate others.”
Our fave recent quote: “Education leads to understanding, and understanding leads to acceptance.”
6. Angelina Polerina, @angelina_polerina
Number of likes: 1.3M
Her must-see post:
Angelina’s version of the popular “Hey, yo, something traumatic happened that changed my life, check” details how she found out she had Crohn’s disease: After pooping her pants during Tae Kwon Do class when she was 14, she went to the doctor and was diagnosed. She posts a lot of videos about life with Crohn’s, and they all have that sort of dark sense of humor that people with chronic illnesses know all too well—because sometimes you just have to laugh, right? “Joking about it helps me cope,” Angelina says. She also uses her platform to educate people on the fact that Crohn’s is an invisible illness, and shares her personal experience of not being believed and being told that her illness was all in her head.
Our fave recent quote: “I’m super-open. I like when people know, and joking about it helps me cope.”
7. Jillian Kotzer, @jillian_diana
Number of likes: 4.3M
Her must-see posts:
When you need to see a fellow TikTokker make light of IBD and all the crummy parts about it, or dish up a dose of self-loving confidence that inspires you to do the same, Jillian Kotzer, 24, is your girl. She answers a lot of follower questions and comments, and uses them as opportunities to educate people on her condition—and normalize it. So, when someone asked how she wears a bathing suit with a colostomy bag, she posts a photo of herself in a bikini and explains how she puts her arms and legs through the suit’s openings and slides it on—just like anyone else. She also confirms that, yes, since she does not have an anus, no one can ever blame her for a fart. (Her biggest “flex” in life, she boasts.) She also calls out people for making insensitive comments, jokes that IBDs are pretty great for weight loss, and sets the record straight on how serious the illness can be for many people, including her. Jillian says that she felt so alone when she was diagnosed, and hopes her posts both raise awareness and also help other people who are navigating a new diagnosis. “I wished I had someone to show me that life actually gets a lot better, and it’s not nearly as scary as you think!”
Our fave recent quote: “At the end of the day, I’d rather show off my differences than hide them because, ultimately, that’s the only reason I’m here today.”
8. Alisha, @alishalooo
Number of likes: 581,700
Her must-see post:
In some cases, IBD can make it hard to get sufficient calories and nutrients from food and supplements alone, and nutrient support therapy might be necessary. Alisha, 19,a shares videos of her feeding tube, answers follower questions about what it’s like to use one, and even demonstrates how she makes the liquid food that goes into the tube. (As she mentions, she only had to use the feeding tube for a couple of weeks. According to the Crohn’s and Colitis Foundation, your doctor might prescribe nutrient support therapy when you need a nutritional boost, like after a particularly severe flare or bowel obstruction, weight loss, or surgery.) She also doesn’t allow her condition—or her feeding tube—to spoil her taking “a hot double-chin selfie,” meaning her sense of humor is definitely intact, too.
Our fave recent quote: “No, I do not have anorexia! Not everyone with feeding tubes is linked to an eating disorder. I eat like a [expletive] pig!”
- Crohn’s and Anemia: Crohn’s and Colitis Foundation. (2020). “Anemia.” crohnscolitisfoundation.org/emr/emr-ibd-education-tool/anemia
- Crohn’s and Iron Deficiency: Meds Hypotheses. (2014). “Pagophagia Neuropsychological Processing Speed in Iron-Deficiency Anemia.” pubmed.ncbi.nlm.nih.gov/25169035/
- IBD Nutritional Support: Crohn’s and Colitis Foundation. (n.d.). “Nutritional Support Therapy.” crohnscolitisfoundation.org/diet-and-nutrition/nutritional-support-therapy