The landscape of health communication is rapidly evolving, with social media platforms becoming pivotal in shaping public understanding of medical conditions. Among these, TikTok stands out as a particularly influential medium, especially among the demographic most affected by inflammatory bowel disease (IBD). Recent research published in the May/June 2025 issue of Gastroenterology Nursing, the official journal of the Society of Gastroenterology Nurses and Associates, has evaluated the quality and thematic content of TikTok videos related to IBD, revealing a complex interplay between reach, content accuracy, and educational potential.
Inflammatory bowel disease, encompassing chronic autoimmune conditions such as Crohn’s disease and ulcerative colitis, disproportionately affects young adults aged 15 to 29, an age group that mirrors the predominant users of TikTok globally. As a video-sharing platform with over one billion users, TikTok offers a unique opportunity to disseminate health information to a population often seeking peer support and accessible education. However, the study led by Samantha Winders, PhD, RN, from the University of Washington School of Nursing, highlights significant deficiencies in the medical quality of content currently dominating this platform.
The researchers employed a systematic search strategy, focusing on relevant hashtags such as #ibd, #crohns, and #colitis to identify the most-viewed videos in English. Analyzing 86 videos collectively viewed 235 million times, posted by 41 unique creators all living with IBD, the study found that none were produced by healthcare professionals. This finding underscores a major gap in expert-driven content on TikTok, raising concerns about the accuracy and reliability of information being consumed by a vulnerable audience.
Employing a validated instrument known as the Global Quality Scale, which rates content on a five-point scale, the study revealed an average quality rating of just two among the top videos. This generally low score indicates a paucity of reliable sources, insufficient depth of information, and potential for misinformation, issues consistent with prior analyses of social media content relating to other medical conditions. The rampant popularity of these videos, paired with their poor educational value, presents a dual-edged sword for IBD awareness and management.
The thematic analysis of these videos painted a vivid picture of the community’s concerns and interests. An overwhelming majority, nearly 70%, centered on ostomies—a surgical intervention sometimes required in IBD management. These videos ranged from step-by-step guides on changing ostomy bags and stoma care to efforts aimed at normalizing the ostomy experience, frequently incorporating music and humor to combat stigma. This focus reflects not only patient needs for practical guidance but also a desire to reshape societal perceptions of living with IBD.
Advocacy emerged as the second most prevalent theme, appearing in 37% of the videos. Content creators actively highlighted the invisible nature of IBD as a disability, striving to increase public awareness and foster empathy. This dimension of social media engagement indicates a grassroots movement to validate experiences that are often misunderstood or marginalized in broader society.
Disease management topics, including discussions on medication regimens, surgical options, and dietary considerations, constituted 32% of the content. These snippets offer insights into the personal journeys of individuals living with IBD, sharing experiential knowledge that resonates deeply with viewers. Nevertheless, without the vetting of healthcare professionals, such information risks being anecdotal rather than evidence-based, potentially influencing healthcare decisions inappropriately.
Further themes explored in the videos include symptom management strategies, navigating healthcare systems, and the social dynamics of living with IBD. The platform’s capacity to serve as a virtual support network is evident, creating a safe space where individuals confront the complexities of their conditions away from clinical settings. This psychosocial benefit is a notable advantage of peer-to-peer interactions on TikTok, albeit juxtaposed with the caveats of unreliable medical guidance.
Healthcare providers have an untapped opportunity to leverage TikTok’s expansive reach. By crafting content that is both medically accurate and engaging, professionals can fill the knowledge void, counter misinformation, and empower patients with tailored educational materials. The study’s authors emphasize that such involvement could bridge critical gaps in understanding ostomy care, advocacy, and disease management, ultimately improving patient outcomes.
Technically, the challenge lies in adapting complex medical information into digestible, captivating short-form videos without sacrificing accuracy. Effective use of visuals, storytelling, and platform-specific tools like hashtags and trending sounds can facilitate this translation. Engagement with content creators living with IBD can also amplify trustworthy messages by blending experiential authenticity with scientific rigor.
The implications of this study reverberate beyond IBD alone, reflecting broader trends in digital health communication. As patients increasingly turn to social media for health information, the medical community must innovate communication strategies that align with contemporary media consumption habits. Addressing misinformation proactively not only preserves public trust but also advances health literacy in a digitally connected world.
In conclusion, while TikTok embodies substantial potential as a conduit for health education among young adults with IBD, the current landscape is dominated by popular yet low-quality content. The intersection of ostomy-related practical advice, advocacy, and disease management narratives marks the core of existing discourse, eloquently demonstrating patient-driven demand for community and information. Mobilizing healthcare professionals to engage on this platform promises to enhance the quality of available content, fostering a well-informed and empowered IBD community.
Gastroenterology Nursing, through the publication of this study by Dr. Winders and colleagues, invites a call to action for healthcare professionals, digital health communicators, and researchers alike. The aim is clear: harness the viral power of social media to deliver accurate, empathetic, and empowering information that resonates with those living with inflammatory bowel disease worldwide.
Subject of Research: Quality and thematic content of TikTok videos related to inflammatory bowel disease (IBD), focusing on medical accuracy and educational potential.
Article Title: Inflammatory Bowel Disease on TikTok: Utilizing the Platform for Information on Ostomies, Advocacy, and Disease Management
News Publication Date: June 4, 2025
Web References:
- https://journals.lww.com/gastroenterologynursing/abstract/2025/05000/inflammatory_bowel_disease_on_tiktok__utilizing.5.aspx
- http://www.gastroenterologynursing.com/
- https://www.wolterskluwer.com/en/health
Keywords: Inflammatory bowel diseases, Crohn disease, Ulcerative colitis, Social media, Health communication, Mass media, Patient education, Ostomy care, Advocacy, Disease management, TikTok, Digital health
