I was born with Hirschsprung’s Disease – a rare condition which causes a blockage of the bowel and can lead to lifelong issues with bowel control. The doctors knew something was wrong when, as a newborn, I didn’t pass stools for a few days.
I had my first surgery at nine days old. This was at a time before keyhole surgery existed, so it was a big operation that has left me with lifelong problems including blocked fallopian tubes. They removed a section of my bowel, and after testing it they diagnosed me with Hirschsprung’s Disease.
My second operation was at six months old, during which the doctors removed more of my bowel and fitted me with a colostomy bag. My final operation was at nine months old, when most of my remaining bowel was removed as well as my colostomy.
Despite this very challenging start to life, I went most of my childhood not knowing there was anything different about me. I was in and out of hospital with appointments every fortnight, then every six months as I got older, right up until I was 18 years old. I also regularly had to attend a clinic to train myself to gain bladder and bowel control, which was difficult for me throughout primary school. But I thought all of this was normal.
I first realised I was different in primary school when a child asked me about the scar on my stomach. It was then I started to question why I had one and others didn’t. I started to ask questions and be more conscious of things that affected me and not others, like feeling dread about swimming lessons. Chlorine would enter my system and make my symptoms of feeling sick and having diarrhoea even worse. I also had really bad bloating, which made me feel self-conscious in a swimming costume. During one swimming lesson, I was sick in the pool because of all this, which was awful – I didn’t want to go swimming after that.
Life now can be challenging. I have to go to the toilet on average 10 times a day, and 90% of the time I’m dealing with diarrhoea. I work in an office and worry people will notice or hear me in the loo. Talking about poo is still taboo, so it’s not easy to discuss how the disease is affecting my life.
Going to the toilet so often affects my energy levels, and I need to eat little and often. This has made training for the London Marathon even more challenging – some days I don’t have the energy to keep going, and I can’t follow advice to carb-load – I have to plan carefully to manage my energy and get the nutrients I need. I also constantly need to be aware of where the nearest toilet is, which has meant only training close to home.
Hearing about the amazing research Bowel Research UK is doing in Hirschsprung’s Disease keeps me going despite these extra challenges. They’re funding research that aims to understand what stops stem cells forming functioning bowel nerves in Hirschsprung’s Disease, and whether those cells can be ‘switched on’ to grow functioning nerves. Although this is unlikely to lead to a cure for me, I’m hopeful it will make life easier for the next generation of people with this condition. I am also running to raise funds for research into bowel cancer, having lost family members to the disease.
My friends and family have been an amazing support. I’ve had to sacrifice some things in my social life for training and they’ve been very understanding. I also hosted a ceilidh fundraiser, it was so much fun bringing my friends together for a night of Scottish Traditional dancing as well as raising money which helped reach towards my target goal. My workplace has also been supportive, and their donation has helped me reach my fundraising target before race day.
Some friends didn’t know I had Hirschsprung’s Disease until I told them I was running the London Marathon for Bowel Research UK, so it’s also been nice to share my story with them, and they now have a better understanding of the challenges I face.
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