#auguts hard to talk about
I have generally found it’s best to be open and honest with people. For many years I would be too embarrassed to use disabled loos as I don’t look disabled! I eventually got over that and am pleased to say that I’ve never been challenged.
My most embarrassing memory linked to my stoma has actually scarred me quite deeply. I returned from lunch early one day and I caught sight of my manager dancing around the office telling my colleagues I was going to have a bag as I had a ‘big smelly problem’. He had a Tesco carrier bag taped to his trousers. I was devastated. An awkward silence ensued and I left, never to return. This was 35 years ago and attitude and awareness has thankfully improved so much. That said, that incident totally wrecked my confidence and I became very insular and secretive where my stoma was concerned. As the years went by and my health improved, I found it easier to talk about my stoma but I did pick my audience, staying away from people I felt would have no empathy or understanding. Fortunately, my next employer was extremely supportive and helped me regain the confidence I’d lost. I stayed in that job for over 20 years. In my personal life I have never really gone public as such since most of my family already know and it’s just a part of me like my arm or leg!
Seven years ago however, complications after a hysterectomy left me with an abdominal fistula which means I now wear two bags. This has been life changing and I am still very embarrassed by it as the bag is totally unreliable compared to a stoma. I don’t even try and explain as most people have never heard of a fistula so I find it just creates more questions which adds to my embarrassment.
I have, however, generally found it’s best to be open and honest with people. For many years I would be too embarrassed to use disabled loos as I don’t look disabled! I eventually got over that and am pleased to say that I’ve never been challenged. People are now generally more aware that not all disabilities are visible and hopefully dinosaurs like my old boss from the 80s are where they should be-long gone!
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I was born 8 weeks premature with Intestinal Malrotation. My understanding is they weren’t sure what was causing me the pain as a newborn, being premature too. When surgery was eventually done it was found my bowels had twisted. Corrective surgery was done. I was christened in the hospital as it wasn’t looking great.
I have diverticular disease on the right side of my body and I believe only a few people have it on this side.
Mr Frank McDermott is a Consultant Colorectal Surgeon and Cancer lead for the Genomics Medicine Service Alliance in Southwest England. His grant with Bowel Research UK why some patients with diverticulitis experience serious complications such as blood infection, while others have milder disease.
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We brought some of our patients, researchers and our CEO together to talk about what makes bowel disease hard to talk about and hard to fund. Watch them share their stories and join the campaign.
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