Graham Beveridge - My IBD Story

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.

It all started when I was about eight years old. I was too young to realise what was wrong and so long ago to remember, what I can recall is that I became very ill, I had no energy, no appetite and crippling stomach pain with weekly and daily trips to see my GP.

After a few weeks, I was referred to the Royal Hospital for Sick Children in Edinburgh for further investigations. I can remember feeling very scared as the wards were so big and every sound echoed. The doctor appeared and asked my mother many questions and then it was decided to start tests. It became apparent very quickly that the investigatory procedures were often uncomfortable, embarrassing and sometimes excruciatingly painful. Every test came back as negative or inconclusive. As the testing continued, so did my deterioration, weight loss and increased pain.

I was put on many different types of diet and medication but nothing worked and the doctors still had no idea what was wrong. One doctor mentioned Crohn’s disease but was quickly overruled saying I was far too young for it. It took over a year before any breakthrough.

One morning I woke up with painful blistering legs. I could barely walk but somehow managed to get downstairs and alert my mother 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 was rather flabbergasted as this symptom was the one that flared up and recovered fairly quickly. He 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 and once the picture was taken, the medical staff were nodding in agreement and you could see a brief sigh of relief on their faces as if they had just climbed a mountain. My mother was in the corner pretty worried as to the speed we were summoned and in desperation shouted “will someone please tell me what’s wrong!” The professor in charge saw her wiping away tears and walked over to her and comforted her and said those infamous words now that are embedded in my memory, “your son has Crohn’s disease”.  There were tears in the team as we now had a diagnosis and treatment would commence that day.

Travelling home, there were many emotions as we knew it was a serious illness, but at least for us it finally 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 I knew I had to keep fighting, not only for my own sake but for theirs too.

My Crohn’s stabilised for a short while, that was until I started doing my exams in high school with the added pressure of working harder to catch up after missing so much time. It was this part of my life that I had the most serious illness I had ever known. One night I woke up haemorrhaging so I was taken into hospital for complete rest, observation and 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, I couldn’t get out with my friends as often, and 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. I often 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 at all as the suffering was just so bad. As a sixteen-year-old I didn’t have the 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 slowly getting stronger. I still had my usual daily cocktail of iron, multi vitamins and anti-inflammatory drugs to contend with. Quite often these would cause their own problems but I realised it had to be a balancing act. 

The next main chapter was the sudden death of my mother 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 both good times and in 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 so, I failed to see a flare coming until it was too late. A short visit to My GP ended up with me being told next morning over the phone to come into hospital, “we need to admit you as your results are worrying.”  I still had the same doctors over the years and when I arrived at the hospital, they had heard of my mum's passing and they all gave me a hug and said we will get you better.

Three weeks after intense treatment, I received a visit from a surgeon and for the first time in my life I heard those words, “it’s time".  I knew surgery was next. Two weeks later, I was in theatre and after waking up I could feel a different kind of pain, pain that was easing from the operation, I couldn’t feel any Crohn’s. I required two emergency operations as the bowel couldn’t heal and peritonitis set in and I gained an ileostomy, however, one year later it was successfully reversed.

Since surgery, I was relatively pain free and my body discovered a new item, ‘nutrition!’. I recovered medically and began putting on weight and getting stronger both physically and in confidence. I still have days where fatigue kicks in and I have to admit defeat and have a down day but thankfully not as bad as I used to feel. 

Nowadays, there has been a vast improvement in medical advances in diagnosis and treatments, I feel a part of this after taking part in many junior doctor exams and lectures over the years and wish I had been born later to take advantage of the advances.

One sentence I always keep saying on bad days “it’s Crohn's disease, not your disease, keep fighting.”

I feel a different person now and 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, there was less support as there is nowadays. Crohn’s disease was still pretty rare then and being so young to suffer from it was ever so frightening. One day hopefully, there will be a cure.