My #GetYourBellyOut story: Graham

At eight years old, my journey with Crohn’s Disease finally started, after several years of feeling unwell and every test coming back as inconclusive. One morning I woke up with painful blistering legs. I could barely walk but somehow managed to get downstairs and alert my mum who started the now near normal call to our GP and another trip over to see him.

This appointment however was the changing point in my journey. After seeing my legs my GP seemed rather flabbergasted as this symptom was the one that flared up and recovered fairly quickly. My GP contacted the hospital for guidance, and we were instructed to attend there as quickly as we could.

Upon arrival we were met by a small gathering of consultants desperate to see this symptom and get a photograph. Once the picture was taken, the medical staff were nodding in agreement when my mother in desperation shouted “please tell me what’s wrong!”

The professor in charge walked over and comforted her. He said those infamous words now, “Your son has Crohn’s Disease”. We had several tears in the team, as now we had a diagnosis and treatment could start that day. Travelling home there were many emotions as we knew it was a serious illness but it at least it now had a name.

After my diagnosis I spent many months, over the first two years, in hospital; often crippled in pain. I was wasting away in front of my family and friends but knew I had to keep fighting, not for my own sake but for theirs too.

My Crohn’s Disease stabilised for a short while, until I started doing my exams in High school with the pressure of working harder after missing so much time. It was this part of life I had the most serious illness I had ever known. One night I woke up haemorrhaging really bad and was taken into hospital for rest and recuperation… and rather a few blood transfusions. As I left school, I looked back as it was this time that I lost pretty much all self confidence. I never felt popular, never could get out with friends as often, I never had much outlook as I could only take it a day at a time as my illness drained the life out of me. Often, I cried myself to sleep, quietly so nobody could hear me as the pain was unbearable. There were times I didn’t want to wake up as the suffering was just so bad. As a sixteen year old I didn’t have the normal life my friends had but I just had to keep fighting.

After school, my working life began and I had a few more knockdowns but realistically not as bad as my earlier days. I still couldn’t do as much but I was getting stronger.

The next main chapter was the sudden death of my mum at forty nine years old. Growing up being so ill there was a bond there as she was always by my side no matter what. In good times and bad.
I tried to get over her death by blocking it out of my system and putting a brave face on it but by doing this I didn’t see a Crohn’s flare coming until it was too late. A short visit to my GP ended up with me being told the morning after that I would need to get to hospital that morning.
I still had the same doctors over the years and when I got there they heard of my mother and all gave me a hug and said we will get you better. Three weeks after intense treatment I had a visit from a surgeon and for the first time in my life I heard him say “it’s time”, surgery was next. Two weeks later I was in the theatre and afterwards I woke up with no pain whatsoever. I did have two further emergency operations as the bowel couldn’t heal and I gained an ileostomy. One year later it was reversed successfully.

Since surgery, my body has been pain free and has found a new item – Nutrition. I recovered medically as I began putting weight on and getting stronger both physically and mentally. I still have days when fatigue kicks in and I just have a down day, but nothing as bad as I used to feel. I feel a different person and now have a little family of my own.

I try not to look back at the dark days. Although overall, looking back to when I was first diagnosed, back then I had little support as it was still pretty rare in those days and of course being so young to suffer from it. Nowadays there is so much more support out there. GetYourBellyOut CIC is promoting Inflammatory Bowel Disease (IBD) and making such big strides. Bringing people together and making IBD’ers feel a part of the group. In time, with all this support and meet ups, hopefully a cure can be found but until then other new people who need help only have to ask once and get all the help they need.