Blake was diagnosed with Ulcerative Colitis in 2003 and battled the disease for over ten years, suffering severe fatigue, bleeding, and pain. He now has an Ileostomy and has been given a new lease of life because of stoma, winning National Fitness Modelling Competitions – the first in the UK with an ostomy. Read Blake’s story.
I was diagnosed with Ulcerative Colitis, a form of chronic Bowel Disease, in 2003. I was 21 when I was diagnosed and I really didn’t know where to turn or who to talk to as it’s not really a disease people are aware of or one they would open up about. I was put straight on to Prednisolone which has a long, long list of side effects.
I visited the hospital numerous times as the years went on, trying various medications aiming to get me into remission. Life was much, much harder and things like going to the gym, enjoying my active lifestyle, work, and having a social life became challenging. Sometimes, I would feel like I was missing out on a normal life of a twenty-year-old as I was so exhausted that going out wasn’t on my agenda. I continued to go to a gym where nobody knew me so I would have something in my life that felt normal. However, the results I got compared to others were poles apart.
In 2013, I had the worst flare up, of which the consequences will live with me forever. I was in the hospital twice that year because the flare-up was so out of control. I was also still at work in an incredibly demanding role, where day to day I was either abroad or on the road. I tried to hide it from colleagues, whilst managing large-scale international and UK events. I was running to the toilet up to fifteen times a day, with heavy blood loss, feeling incredibly fatigued, and not to mention the unbearable pain. I did everything I could to hide what was happening to carry on with my job. I was also heavily anaemic and suffered from temporary arthritis of the joints. The fatigue was unforgiving, so I would try and sleep for an hour in the car in between shows. My hair was even falling out from the amount of medication I was pumping into my body! Stomach cramping and chronic nausea certainly didn’t help! I began to look grey from the anaemia as well as the exhaustion and my colleagues started to realise something was wrong. It became increasingly difficult to hide. I couldn’t even make it into the office without stopping at the toilet several times on the way. I knew this flare-up wasn’t going to go anywhere…
I knew something had to change, so I met with Bruce George at the John Radcliffe Hospital in Oxford, following my research on various bowel surgeons. I had a colonoscopy, after which Bruce tapped my shoulder and said, ‘it’s surgery for you!’. I was invited back to the clinic, where Bruce educated me on the procedure and what to expect. I really felt at this point like my life was over. I knew I was in excellent hands, but I still had so much going through my head that day – I was 32 and my perception was that stomas were for older people. How would I continue living day- to- day? Could I still train at the gym? What are people going to think? I never met anyone my age or a young person with a bag.
I had my surgery in October and underwent a sub-total colectomy laparoscopically. They removed my colon and gave me an ileostomy. Surgery wasn’t plain sailing for me and I underwent a further two operations, due to unforeseen complications. In total I was in hospital for six weeks and came out having lost nearly three stone, having been fed through a feeding tube for the last couple of weeks before I was discharged. I really felt like I hit rock bottom.
Recovery was slow, I struggled to walk a few metres and felt incredibly weak. I don’t think being so skinny helped me either! One of the hardest things when I came back home was having to depend on others to help me get around.
Physically it was hard to recover. However, mentally recovering was my hardest challenge!
At first, I didn’t even have time to think about my stoma or the fact I had a “bag”, as there had been so much going on whilst I was in hospital. I knew it was there and found it difficult to accept. I found it hard to tell anyone about it, that I had this ‘bag’ on my stomach and what its purpose. It took a while to build my confidence to be able to talk to people openly about having a stoma, and eventually even to show them.
When you go through the surgery some say you grieve … Odd I know. I didn’t grieve because I had a bag, but I did grieve when I was told it would be very unlikely to achieve the fitness goals I had always aspired to. It was incredibly hard to hear and deal with this news.
Eventually, my confidence started to grow with support of my family, friends, and the IBD family I have on social media. I realised it didn’t stop me – it gave me a new lease of life!
After Christmas, my recovery soon picked up. I met with Mr George and was given the all clear to be active again. I was able to go out on small walks to the end of the road and back, slowly building my strength back up. I managed to gradually increase my exercise and get back on my bike – the feeling was amazing! By the end of January, I went back to the gym and for the first time in months, I felt like myself. After being at the gym and embracing my new lease of life I was determined to defy the odds I had been given and not let my ostomy stop me like my Ulcerative Colitis had done. I went on to win National Fitness Modelling Competitions – the first in the UK with an ostomy! I modelled for Men’s Fitness and had my story shared across the globe, but most importantly I was able to share the message worldwide that stomas save lives and they give lives back. I’m proud to say I have one!
I am truly grateful to the John Radcliffe team and in particular Mr George – they have been and continue to be incredible!
Why Am I Determined To Fight The Stigma?
For anyone suffering from IBD, surgery can be a daunting prospect. I remember for many years during flare-ups saying things like I would rather die than have surgery. This is because society can make you feel that you will be unattractive, that it is something that older people have, that it smells, and it’s not normal…
I would try and “live” and almost prefer to suffer with IBD symptoms then let others judge me. In the end, after years and years of battling this disease I decided to have a stoma was the right thing for me. I am determined to show people and society that having a stoma doesn’t change who you are and it doesn’t mean you’re not normal. It is the opposite in fact. It means you can achieve anything you want to do, you can be attractive, and you can lead a normal life. My stoma saved my life and I have never looked back.
Together we will fight the stigma www.blakebeckford.co.uk