Diagnosed with Ulcerative Colitis in 2003 and having battled Ulcerative Colitis for the last 10 years I now have an Ileostomy and want to share my story with you.
As a child I was a budding athlete had huge dreams of being in the fitness industry and competing at every level, I was determined to make it big in the world of fitness but my dreams came to an abrupt end in 2003.
I trained every day, weather it was on the track or in the gym. I worked hard to keep myself in shape and at the top of my game however as I hit my twenties training became harder and harder. I found the results of my hard work starting to disappear and had unexplained weight and muscle loss became unusually fatigued, felt weaker, chronic pain in my stomach and as the months went on I started losing a little bit of blood when going to the toilet, the blood loss gradually got worse and it became more and more painful. I realised that something was wrong and that I needed to see a specialist as this wasn’t going away.
I saw a specialist in 2003 and that’s when I was diagnosed with Ulcerative Colitis a form of chronic Bowel Disease where the lining of your colon is covered in ulcers you suffer from rectal bleeding, chronic fatigue, weight loss, bowel rushes, joint pain, extreme nausea and plenty of sleepless night! It’s an autoimmune disease – and to put it simply my immune system attacks itself, I was 21 when I found out and I really didn’t know where to turn or who to talk to it’s not really disease people are aware of or open up about. I was put straight on to Prednisolone which has a list of side affects as long as your arm! And they soon controlled my flair up but little did I know my battle had only just begun.
As the years went on I spent numerous times in hospital where we tried different medications to get me into remission. Life was much harder and going to the gym and enjoying my active lifestyle, work and 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 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.
As time went on I started to have to take more and more medication and at times would have to take over 20 tablets a day just to keep things manageable. When I was on the Prednisolone I would suffer with huge amounts of water retention and the dreaded moon face so trying to gain muscle and have a great physique felt impossible.
My dreams of becoming anything in the fitness industry disappeared I came to the realisation it would never happen, so went to the gym to keep healthy and even then I had to really push myself through the fatigue and IBD symptoms.
Along with the bleeding, chronic pain, weight loss and fatigue I also suffered with iritis (ulcers in my eyes) thinning of the bones particularly in my hips – being told in your late 20’s your hips are those of a 65 year old is never a great thing! Incredibly sore joints and temporary arthritis in my elbows and knees making training or exercise impossible. However the worst flare up was yet to come…
“In 2013 I had the worse flare up one where the consequences will live with me forever”
In 2013 I had the worse flare up one where the consequences will live with me forever, I was in hospital twice that year as the flare up was so out of control we struggled to get in remission, I was still at work in an incredibly demanding role where day to day I was either abroad or on the road I did everything I could to hide it from colleagues. I was managing large scale international and UK events and running to the toilet up to 15 times a day loosing heavy amounts of blood, incredibly fatigued and the pain was unbearable. To make matters worse I was constantly travelling and away from home. I did everything I could to hide what was happening to carry on with my job. I was also heavily anaemic, suffered from temporary arthritis of the joints in particular my elbows, the fatigue was unforgiving and in between shows I would sleep for an hour in the car, 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 and it became increasingly difficult to hide. I couldn’t even make it into the office without stopping to the toilet a million on the way to the office I knew this flair wasn’t going to go anywhere. I knew something had to be done. I met with my consultant at the John Radcliffe Hospital in Oxford and after a colonoscopy my consultant tapped my shoulder and said its surgery for you! I met with my surgeon a few days later and he educated me on the procedure and on 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 am 32 and my perception was that old people have stomas? How would I continue day to day living? Could I 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 the October and underwent a sub-total colectomy laparoscopically and they have removed my colon and gave me an ileostomy. Surgery wasn’t plain sailing for me unfortunately and after I was discharged from hospital I was admitted back in within a couple of days and underwent a further 2 operations – this was due to unforeseen complications I struggled to eat and keep food and water down. I was in hospital in total for 6 weeks and came out at the end of November 2013 having lost nearly 3 stone and 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!”
When I came back it was the first time I had in weeks to get used to having a stoma, because I had so much going on in hospital and trying to recover from my surgeries I didn’t even have time to think about my stoma or the fact I had a “bag”. I knew it was their, and found it hard to accept it for weeks, I found it hard to tell anyone what I had done, the fact I had this bag on my stomach and what it did. It took a while to build my confidence again, to talk to people openly about having a stoma, to show anyone what I had.
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 after I was told I would be very unlikely to achieve the fitness goals I had always aspired to. Hearing this after having surgery to remove this awful disease thats held you back for all this time is incredibly hard to deal with.
As time moved on my confidence grew from the support of my family, friends and the IBD family I have on social media, I realised this didn’t stop me – it gave me a new lease of life!
After Christmas recovery soon picked up, I was able to get out on small walks to the end of the road and back and I slowly built my strength up. I managed to gradually increase my exercise and get back on my bike … the feeling was amazing! At 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 with 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.
My Complications From Surgery …
In 2013 I had a flare up that will live with me forever, all throughout the year I was in and out of hospital numerous times with uncontrollable blood loss and chronic fatigue where slowly my condition took over all aspects of my life! I have never felt so bad!! So in the October I undertook a Colectomy where I had my large bowel (Colon) removed. I was in hospital for about 10 days and back home for about 3 days. The 3 days I was home were incredibly hard – I had no abdominal strength, I felt weak, tired and like I couldn’t do anything for myself. Little did I know the worst was still to come… Read more
Why Am I Determined To Fight The Stigma?
For anyone suffering with 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 its something that old people have, it smells, and it’s not normal.
I got myself into a situation where I would try and “live” and almost prefer to suffer the symptoms of IBD then let others judge me. In the end after years and years of battling this disease I decided it was the right thing for me, now 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 means you can achieve anything you want to do, you can be attractive, and you can lead a normal life.
Together we will fight the stigma #FightWithBlake