Many folks with inflammatory bowel disease (IBD) are turning to TikTok for advice, but they aren’t likely to receive useful and accurate information, a new study says.
Analysis of 86 top IBD videos with a combined 235 million views found low factual quality, researchers report in the May/June issue of the journal Gastroenterology Nursing.
“Most videos were lacking information and reliable sources,” wrote the research team led by Samantha Winders of the University of Washington School of Nursing in Seattle.
For the study, researchers scanned TikTok using the hashtags #IBD, #Crohns and #colitis. The team pared an initial group of 300 top-viewed videos down to 86 after excluding duplicates and those not in English.
These videos were posted by 41 unique content creators, all of whom were suffering from IBD, researchers found. None of the popular videos on the subject were posted by health care providers.
Reviewing content, researchers found that the videos rated poorly when it came to the information they provided – an average quality score of 2 on a five-point scale.
More than 4 of 5 (83%) involved a personal story or narrative, 36% used humor and 29% shared negative experiences, the review found.
“Social media platforms such as TikTok have the potential to reach a wide audience of people living with IBD, particularly young adults,” Winders said.
“Our study finds problems with the quality of medical information provided by the most-viewed videos, suggesting opportunities for healthcare providers to create accurate content targeting gaps in IBD education,” she added.
Analyzing themes of the videos, researchers found that nearly 70% were focused on patients who’d had an ostomy — a procedure in which waste exits the body through a surgical opening into a bag.
These videos covered changing an ostomy bag or cleaning the opening, which is called a stoma, researchers said. Other videos focused on normalizing ostomy, using music and humor to counter stigmas associated with the condition.
Advocacy was the second most common theme, with 37% of the videos trying to raise awareness of IBD. About 32% of the videos involved disease management, including medications, surgery and diet.
Researchers suggested doctors consider pairing with top TikTok creators to communicate sound info about IBD effectively, and help build their confidence in using social media.
“As indicated by the low quality noted in the videos reviewed, both users and creators must be cautious of the potential for misinformation on TikTok, researchers concluded. “However, this platform provides a safe space where those with IBD can share information about their invisible disease and spread awareness.”
More information
Yale Medicine has more on inflammatory bowel disease.
SOURCES: Wolters Kluwer Health, news release, June 4, 2025; Gastroenterology Nursing, May/June 2025
Source: HealthDay
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