Written by Craig Owen & Emma Butel
Young adults often turn to social media for health information. With over 1.6 billion active users, TikTok provides a powerful platform for communication among health communities.
Analysing 64 TikTok videos related to #ostomy and #IBD, we found that young ostomates (people with a stoma) use the platform to share vital education about stomas, share personal experiences and combat stigma. We now call on health professionals to recognise and support these educational efforts on TikTok.
What’s IBD? What’s a stoma?
Inflammatory Bowel Disease (IBD) causes chronic gut inflammation, with symptoms like abdominal pain, diarrhoea and weight loss. Treatment often includes medication and stoma surgery. A stoma (also called an ostomy) is a surgically created opening on the abdomen where the bowel is brought through and sewn to the outside skin. The stoma diverts faeces into a pouch or bag. It helps alleviate symptoms of IBD, but brings its own challenges, many of which are worsened by social stigma. Our research shows how ostomates challenge these stigmas on TikTok by taking the roles of educators, warriors and reformers.
Ostomates as Educators
A major challenge is the public’s lack of understanding of IBD, stomas and their symptoms. Young ostomates also often face limited support from healthcare teams for psychological difficulties post-surgery. As educators, TikTok video creators play a vital role in increasing awareness, helping others manage daily stoma challenges, while educating broader audiences. Common topics discussed include bag changes, using the toilet, diet modifications, intimacy and stoma surgery details.
Ostomates as Warriors
Many people with IBD fear having a stoma. Ostomates on TikTok acknowledge this fear and share transformative stories of life pre- and post-surgery. As warriors, the video creators highlight the enduring battles ostomates face with IBD and stoma challenges, including multiple surgeries and painful symptoms. Stoma surgery presents new challenges like wound healing, yet it significantly improves their lives. Creators use photo montages to show the severity of surgery and their scars, symbolising their physical battles. They also address psychological struggles, offering hope and support to new ostomates. Despite the challenges, creators emphasise that stomas not only improve but save lives.
Ostomates as Reformers
Displaying stomas, stoma bags and faeces in public is often stigmatised, leading many to hide them from view. Ostomates also frequently express concerns about intimacy and nudity. As reformers, the video creators challenged these negative perceptions and improved representations of ostomates by taking-up a body positive approach to their altered bodies. Ostomates celebrated their appearance and clothing choices, proudly showing-off bodies with stomas and engaging in physically demanding exercise. These representations demonstrate that stomas do not have to interfere with everyday activities, or indeed limit what their bodies can achieve, and are nothing to be ashamed of.
Health professionals, there’s good practice on TikTok.
Fostering vital stoma care skills helps ostomates manage the challenges of living with a stoma. Many of the issues creators discuss on TikTok are considered best practice for new ostomates. Health professionals working with ostomates and other health and illness communities would surely benefit from awareness of the educative, insightful and activist practices undertaken by this online community.
About the Authors
Craig Owen is a senior lecturer in psychology at Anglia Ruskin University (UK), where he teaches gender studies, social psychology and qualitative research methods. He holds a PhD in Psychology from the University of Bath and a MSc degree in Sociology of Sport from Loughborough University. His research on gender, media, dance, and the body has been published in the Journal of Health Psychology; the Journal of Gender Studies; Feminist Media Studies; and Feminism and Psychology, among others. His current research explores self-help texts about men’s sex lives and how to raise a feminist son. He is an editorial board member of the Journal of Men’s Studies.
Emma Butel has a MSc in Clinical Child Psychology and works as an assistant psychologist in a Parent-Infant Relationship Team. In this role, she provides interventions to help parents strengthen their relationship with their young children and more broadly raise awareness of the importance of infant mental health. The journal article that underpins this blog is her first piece of published research. She is keen to pursue further research opportunities exploring the psychological impact of illness (particularly potentially stigmatising conditions) on individuals, or within the context of infant mental health.
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