Bethia's Story

Hello!

My Name is Bethia

I’m 28, work full time as a doctor, love spending time outdoors, especially running, cycling and rock climbing and a few months ago I decided to start emPOWERed. I was diagnosed with ulcerative colitis age 19, and when I was 21 needed surgery to remove my colon. I initially thought that I’d have a temporary stoma for a few months and then have this reversed, but life had its own plans. Instead of one operation and a five-day hospital stay, I ended up having four major abdominal surgeries, spending one and a half months in ITU and losing the majority of my small intestine as well as my colon. After five and half months spent in hospital, I left feeling incredibly blessed to be alive and with a huge appreciation for what I knew would now be a permanent stoma. Life had changed.

At the beginning of my 21st year I could cycle long distances, camp overnight and explore for days at a time. By the end of the year I was dependent on life-long nightly IV infusions (parenteral nutrition) to keep me alive, had a permanent stoma and was re-learning to walk. Although my short-term goal posts had changed, my long-term goals stayed the same. I knew that if I put the effort in, I would be able to get back to the sports that I love and continue to pursue the career that I wanted. At first my new medical needs felt all consuming, but with time, like brushing my teeth morning and night, these have become part of my routine. In the 6 years that I have had my stoma, I have only told a handful of people outside of my family about it. From day one I have felt immeasurably thankful for it. Instead of my life hitting a hard stop at the age of 21, my stoma has given me a future and limitless options. I am proud of it, and I love it…but why have I not been talking about it? Part of my reluctance to talk is because of my innate shyness, but the other part is down to the knowledge that my ‘life-saver’ is not well understood, and in some cases, is not accepted. When I read the case of Barnsley V. MSP something flicked inside me. I felt angry. The negative pre-conceptions of others played a part in a man’s decision not to accept life-saving medical care.

I couldn’t stay quiet anymore. Being faced with a serious medical diagnosis is something that we all hope will never happen to us, or our loved ones. But for many of us, sadly, hearing the news that no one ever wants to hear becomes a reality. On receiving a diagnosis, it is natural to think about how it will affect your life, what treatments you will need and who is going to be there to support you. It is not a natural part of receiving a life-changing diagnosis to have thoughts of “will I be accepted?”, “am I going to be judged?” and “can I talk about this?”. We are taught from a young age not to talk about poo, but where does this leave us when our basic bodily functions fundamentally change, and our heads are filled with thoughts and questions about our new anatomy? I decided to start emPOWERed, to try to bring the truth about stomas into the mainstream. I want to replace any negative pre-conceptions that people have about stoma bags with the words “life-saving”, “enabling” and “empowering”. I also hope that emPOWERed. Will help to start conversations about serious bowel and bladder conditions. With help from friends I have designed t-shirts and jumpers that showcase these conditions that affect so many lives, but are often kept under wraps. The hope is that our designs will empower people to talk more openly about their medical conditions and feel confident in their own skin, and that one day, society will talk about these illnesses like any other serious health condition.