Speak up for stomas this World Ostomy Day
With World Ostomy day approaching, I have been reflecting on my personal journey as an ostomate and thinking about how things have moved on over the last ten years. In June 2012 I received my lifesaving stoma (Homer) and it was in hospital that I had a real urge to write down what was happening around me, what I was experiencing and how I felt about things. It was Pelican Healthcare who published those ramblings as soon afterwards they invited people to send in their stoma stories to feature on the new company website – so I suppose that became my first ever blog! So how or why I was suddenly inspired to write anything at all was a bit surprising really, but I think I wanted to commit to paper something that I knew would be life-changing.
Lack of resources
In my opinion, the information available to me back then regarding life with a stoma was minimal. It was also quite black and white; this is what a stoma looks like, this is what a bag looks like, this is how it fits on and no one will even know you’re wearing it … sorted! I was given contact details for the stoma nurses at Singleton Hospital in Swansea, and was lucky that one of the nurses assigned to me for my post-op support lived a couple of doors up from us at the time. She was great; she was always on hand if I had any issues. However I felt quite isolated initially as no one really talked about openly living with an ostomy, maybe people thought it wasn’t ‘nice’ to talk about it as it involved toilet habits and poo! I soon realised this had to change- my stoma saved my life and I wanted people to know about it.
Following my first blog, a young reporter, Chad, from the local newspaper who was also a fellow ulcerative colitis sufferer contacted me. He had a personal as well as a professional interest in my story and wanted to write a piece for the Evening Post. From that, there came an opportunity for me to join Chad speaking about IBD on Jason Mohammed’s Radio Wales show. By now I was sure that there was more that could be done to get other people talking about their own experiences. Gradually I became more aware of other IBD sufferers out there who were eager to speak out but hadn’t had the “space” or confidence to do so. I have always been confident to talk about my stoma, how I manage him, my new toilet routines and what the impact has been on my life generally. I am very lucky that I haven’t had any real problems either with the stoma itself or coping with it physically or psychologically- but I became acutely aware that others were not so lucky.
The power of social media
I love Social Media- used sensibly it is so powerful. I began to reach out to other ostomates via my Twitter and Facebook accounts and was so surprised at the number of other ostomates across the world who made contact with me, just wanting to “talk”, share experiences and ask questions. I shared my Pelican story on my Twitter feed and as a result of that I’ve spoken to so many people from so many places via email, face to face in cafes or spoken over the phone; people who had been too shy or embarrassed to talk about their bowel problems suddenly found more confidence because I wasn’t afraid to talk so openly. I could see an IBD community growing rapidly as we began using social media to share experiences, offer support and break taboos.
We may receive our stomas for several different reasons but what has become obvious to me is that the public at large need to know about and understand some of the issues that affect IBD sufferers and ostomates. Thankfully this awareness is growing all the time as more and more celebrities and people in the public eye are coming forward with their stories and they have been incredible ambassadors for the cause. It is interesting that many more female ostomates appear willing to talk about things and even have photos taken showing their bags while male ostomates tend to be more reluctant to share anything at all! This is something I’d like to see changing in the future as more awareness is raised. I am so privileged to be able to use my social media platforms to reach out to people encouraging them to share their stories, and hopefully giving them confidence to ask for advice.
Why speaking out is important
Ultimately, I would like to be able to live in a society where our hidden disability is recognised and accepted without question; a society where a Crohn’s sufferer does not feel the need to apologise and justify their reason for using an accessible toilet. This is why speaking out and raising awareness is not just important, it’s crucial. We live in a society that allegedly recognises and respects diversity; that should certainly include ostomates and IBD sufferers too. We must continue playing our part in making this happen via the safe, secure and wonderful community that we have formed.