Poppy Budworth

Lived Experiences of Young ‘Ostomates’

The term ‘ostomate’ is often used to describe a person who has undergone surgery which resulted in the formation of an ostomy or stoma. Ostomy surgery exteriorises a portion of the small or large intestine to divert bodily waste outside of the body. Approximately 102,000 people in the UK live with a stoma, and around 21,000 new stomas are formed every year. One of the main reasons people undergo stoma surgery is due to Inflammatory Bowel Disease (IBD), and young people under 16 years old make up a quarter of new IBD diagnoses.

Because of the increasing numbers of young people diagnosed with Inflammatory Bowel Disease, the project focuses on people aged 16-25 living with IBD, specifically those who undergo stoma surgery. The research will be carried out primarily online and in the North West of England and will comprise of flexible multi-method, participant-led qualitative methodologies, such as biographical interviews and diaries, which focus on personal experiences of living with a stoma. Furthermore, this project is in partnership with GetYourBellyOut, a Community Interest Company which has, over the last eight years, established a supportive online space for people living with IBD to connect and share their experiences and advice.

The project adopts a relational approach to explore young ostomates’ everyday relationships, negotiations and sources of support. It is commonly accepted that young people today face a multitude of pressures; thus, it is critical to understand how young ostomates negotiate life with an ostomy; in particular, how their experiences as an ostomate shape understandings of identity and community, as well as shaping their mental well-being.

My PhD builds on my Masters research which explored the everyday lives of young people living with Irritable Bowel Syndrome (IBS). Within a similar relational framework, my Masters thesis explored how young people’s experiences of relationships, space, time and stigma were shaped by their chronic bowel condition. A broader interest of mine, which connects both projects, includes improving toilet equality and access for people of all identities. The COVID-19 pandemic has highlighted to many the importance of accessible and safe public toilets and so this is a topic I hope to explore further within the research. My blog post for the Manchester Urban Institute, titled Inflammatory Bowel Disease and COVID-19: experiences of those well versed in social distancing, details a number of other ways in which COVID-19 has impacted those living with IBD.