My journey with my stoma has been a rollercoaster—from despising my first one (2007-2009), to finding appreciation with the second in 2014, and finally embracing my current one which I had in 2018 due to a Jpouch excision.

I think my dislike of my first stoma initially stemmed from knowing so little about it. Living with and being expected to take care of something I’d never even heard of a few weeks earlier was scary. I’d never really even been unwell before. Just two weeks of sickness had led to a diagnosis of ulcerative colitis, a form of inflammatory bowel disease (IBD). Within another week, I had emergency surgery to remove my colon, resulting in an ileostomy.

After recovering and going home, leaks and burnt skin became my new challenge. I reached a point where leaving the house wasn’t something I was comfortable doing. I didn’t want to be covered in poop away from home. I didn’t want to be covered in poop anywhere, really. Fears of others noticing my bag or hearing it also prompted a change in my dressing style to conceal it.

I battled with my stoma struggles alone. Later, I battled the struggles with my Jpouch and constant Pouchitis alone. I felt very alone, as if I were the only person in the world dealing with it.

It was this frustration that became the driving force behind my decision to open up on Facebook. The response from unknown people thanking me for my openness encouraged me to create a Twitter account. I used it on the many nights when pain deprived me of sleep, searching for people with IBD to connect with and share experiences.

An online community of people with IBD and ostomies began to gather, leading to the formation of a Facebook group. Over time, my online engagement naturally grew into a blog, and I initiated #IBDSuperHeroes to raise awareness, offer support, and raise funds for research.

Numerous misconceptions surround having a stoma, including stereotypes of it being an affliction only for the elderly and the unfounded beliefs that it smells and is unclean. Similar misconceptions exist about inflammatory bowel diseases. Talking about bowel movements remains taboo and uncomfortable for many. The question arises—why, when it’s a natural bodily function?

When faced with the prospect of needing a stoma again, the pre-established online support network became an invaluable resource for me. Access to wide range of experiences, tips, and product recommendations considerably improved my confidence and outlook. Discovering the array of bag manufacturers and supportive products, including ostomy underwear and full briefs, shattered preconceived notions about the limitations of life with a stoma.

Reflecting on my journey, I recognise the pivotal role awareness plays. Raising awareness fosters a sense of community and serves as a lifeline for those navigating similar challenges. Personal anecdotes and shared stories have the power to reach people in unexpected ways, offering solace and guidance during difficult times.

Despite my initial scepticism about the impact of my online awareness raising efforts, messages from acquaintances, even those from the past, seeking information or expressing curiosity, show the profound effect of raising awareness. The realisation that my posts, even if silently observed, have a positive influence reinforces the importance of persistent advocacy.

In contrast to my early stoma experience, when I didn’t have internet access and media coverage was non-existent, today sees us in a much better place in terms of awareness. I realise I’m going to see more media coverage about these topics than the general population because of the company I keep and the work I do, but I’m certain there is more of it. Information and support are more easily accessible.

I remain committed to raising awareness. I believe that if we keep sharing our stories, and the stories of others, they’ll reach who they need to reach. If just one person a year benefits, it’s totally worth it.

That’s why I am so passionate about what I do. That’s why I keep talking, even when I’m not certain it’s being heard.