My name is Jonathan I am sixteen years old and I have Crohn’s disease but before I tell you any more about that, I’d like to tell you a bit about myself.
I live with my mum, my elder sister, when she is not away at university, and our two Bengal cats. We are a very close-knit family.
As a kid I was always on the go. I loved to ride my bike; I had swimming lessons; I played rugby, badminton and lacrosse; I learnt the piano and I played chess. I also represented my school at athletics.
When I was eleven I was overjoyed to obtain an academic and means tested scholarship to Bancroft’s, a high-performing independent school. In my first year there I discovered an interest in classics. And I was able to indulge my passion for science through the Buxton Society, and the Junior Science Club.
Half-way through my first year of secondary school I started to become seriously ill. I remember getting terrible nausea and stomach pains. According to my medical records I was suffering abdominal pains and nausea as far back as February 2001. I had to defer sitting my 11+ exam in November 2002. In early 2003 I was referred to a paediatrician as I had become increasingly unwell and was missing school. I was misdiagnosed with faecal retention, and prescribed with a foul-tasting medicine; it seems that I am not a typical Crohn’s sufferer, as I tend to get constipation and not diarrhoea. I became a couch potato! I would get a fever, and begin to sweat and retch. I am glad now that my mum insisted my GP refer me to a paediatric gastroenterologist. I was seen at Great Ormond Street Hospital, where I was lucky to get a friendly and understanding consultant. I was booked to have a colonoscopy and endoscopy a few weeks later. My consultant discovered acute inflammation and ulceration in part of my bowel. A few days of planned investigations turned into ten days as an inpatient. I was given five days of intravenous medication, which I still take in pill form. I was also prescribed a liquid food diet, so that digestion was made easy for my gut. But because the consultant suspected that I might have a dairy intolerance, he prescribed a dairy-free alternative. This tasted foul, and I couldn’t drink the amount I was supposed to. I was seriously underweight at only 35 kilos – the normal weight for a boy 3 years younger than I was – and eventually I had to have a naso-gastric tube inserted through my nose, and oesophagus, into my stomach. I found this procedure incredibly uncomfortable. The tube remained in place when I was discharged and I continued solely on the elemental feed for 6 weeks, with my mum changing the tube every 4 weeks. I was also taking Pentasa and Azathioprine. By the end of July I was allowed to re-introduce other foods one at a time, whilst continuing to get most of my calories from the liquid food.
As a Crohn’s patient one thing I’ve had to get used to is all the tests, which doctors rely upon to know what’s going on in my body. I’ve had three sets of endoscopies, and more blood tests than I care to remember. Once, when I was an outpatient at Great Ormond Street Hospital, I had a bad experience when a vein in my hand didn’t give blood. Ever since then, whenever I have a blood test, I point to a particular vein in my right arm, which has been 100% reliable. This has proved that it’s useful to have a strategy to deal with these tests.
When I returned to school, still with a naso-gastric tube in place, I found that some people were less forthcoming. I had only been at my school for two terms, so I hadn’t made good friends yet. The pupils in my school year were only eleven or twelve years old at the time. What became increasingly clear to me is how different people react to things in different ways. Some people jump to conclusions, like one of my friends, who said he thought I had been in hospital with cancer. Another boy was curious about the tube stuck to my face, but he didn’t think to ask me why it was there. Instead he made a comment which hurt my feelings. Despite this overall my classmates were quietly sympathetic, even if they didn’t understand. And it’s these things which really count.
One day I gave a talk to my form and showed them the pictures of my ulcerated gut. I wanted to explain what was wrong with me and reassure them that it wasn’t infectious. Since then I’ve learned to be more open in answering questions about my illness, because there’s nothing to be ashamed of.
Whilst preparing this, I made a list of all the medical problems I have encountered since my initial diagnosis but I am not going to put them in here. I’m not into lists of difficulties, but I do have a list of achievements.
- I have doubled my weight and I’m finally taller than my mum.
- I have become part of a group of seven best friends.
- I have excelled at rugby and athletics at school, and taken part in three dramatic productions.
- I have played chess for Essex and been a member of the National Junior Chess Squad.
And more importantly, I also have a list of opportunities
- I will be completing my silver Duke of Edinburgh Award at the end of August.
- I’m too small to play rugby now. Instead, I’ve taken up racquet sports and so will continue to gain pleasure from playing sport.
- I will be a sixth-former in September, with all the privileges and possibilities which come with it.
- I have chosen to take triple science and maths for A level and aspire to study biochemistry at university.
- And who knows what that could lead to.
My goals may now be different, but they are no less challenging.
No less satisfying. There may be tougher times to come. I suffered a relapse last Christmas and have needed considerable medical intervention this year, my GCSE year. I know that I will soon be undergoing surgery.
Yes, there is always a degree of uncertainty.
But I don’t dwell upon it.
I try to be optimistic.
Before I finish I want to leave you with one thought.
It is this. Don’t ask yourself “Why me? I didn’t.
Ask yourself “Why not?”
I hope my story will give hope and encouragement to others