Hi I’m Luke, I’m 16. I am studying for my A Levels. I was diagnosed with ulcerative colitis (UC) in February 2016. I had been suffering symptoms for the previous six months. Initially I was being given antibiotics as a quick fix. I have never been one to complain, honestly, I just assumed it would go away soon.
The symptoms finally got dealt with when I lost 9 kg over the course of the flare-up. I was put on steroids, and Azathioprine. This settled the symptoms down, but I suffered the side effects, such as a moon face and hot flushes. When I went back to school, to be honest, I didn’t want to tell anyone I was on steroids, although I was happy to tell them I had UC.
A year later, I started to have kidney problems which could have been caused by medication or an infection.
It was then diagnosed by a junior doctor, as pneumonia and that really knocked me for six.
In June last year during my GCSEs, I started to suffer my first flare-up since I was diagnosed. I was put on steroids which weren’t working but I persisted over the summer. In a strange way, I was fortunate because the steroids were going straight through me, I didn’t have to worry about my face being a beach ball. We went to Jersey for a few days and that was when things got really bad. When I got back, I was really ill, going to the toilet 28 times a day, feeling tired, drained and in pain. I was admitted to hospital. Unfortunately, after 12 days in hospital, I was discharged even though I was still going to the loo at least ten times a day.
At the end of September, I had an endoscopy and to everyone’s surprise, I was re-diagnosed with Crohn’s.
I was then put on a liquid diet for two weeks which made no difference. Fortunately, I was started on Infliximab, which was like a flip switch. I have now been on that for three months and touch wood, it has worked a treat.
I have signed up with some mates, for the FA Peoples cup, this is going to be a really big deal for me to play competitive football again! My school had been incredibly supportive, but when I had my flare up during the GCSEs, my grades were not good enough for me to return. I am now at a sixth form college, which has worked so well for me. I missed the first half term of the courses as I was so unwell but I am catching up with the support of my teachers.
Through it all, the support of my family and friends has been so important. I am a massive Millwall fan. I have a season ticket and am a ball boy. I was really lucky, when I was ill, as the guy who organises it, got a get well soon card signed by all the players and a pair of signed shorts which definitely helped me keep going.
How am I supposed to remember what they say in an appointment?! As my mum will tell you, my favourite line after a consultation is, ‘so what did they say?’. Also, if I’m being dead honest I can’t think of anything worse than staying on an adult ward by myself! I know CICRA have been working hard to support this process [of transition to adult care]. There are some tough times, but keeping your mind on all the things you want to do when you feel better, really do help to keep you going.
Photo credit: Vicki Sharp Photography
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