Hello. My name is Thomas and I am 11 years old.
I live with my Mum, Dad, older sister Rowenna and my best friend, Chewie - my dog. We live in Plymouth. I was diagnosed with Crohn's disease nearly three years ago when I was eight years old. It started with me losing weight, having tummy pains and feeling and being sick. I was having too many trips to the toilet (which were not pleasant, if you know what I mean!).
I tried a dairy-free diet but my sister got to eat Easter eggs when I couldn’t! I tried gluten-free foods too as my Aunty is a coeliac. I didn’t like that! The bread was like cardboard.
Mum and Dad took me to the GP over and over again but no one knew what was wrong. I went to Exeter Nuffield hospital for an ultrasound scan to see if anything was lurking inside. The gel was a bit cold for my liking but the good news was I wasn’t pregnant! The scan didn’t show anything.
After more GP visits I saw my Plymouth consultant - Dr Broad. He then wrote to Dr Wiskin in Bristol to ask if I could have an endoscopy and colonoscopy.
I was worried about being put to sleep but I watched a video about it which made me feel a bit better. Well… who would be happy about having a tube down your throat and up your (cough, cough!). Not nice!!
We went to Bristol and stayed in a hotel to do the bowel prep the day before. Bowel prep is DIS-GUS-TING and you can only eat orange jelly! After the procedure we saw photos of my beautiful digestive system, but it wasn’t very beautiful.
Afterwards I was starving and I had the two biggest sausage baps ever! My parents also bought me a new bike, so that was a good outcome.
I had to go on a liquid only diet for eight weeks (so boy, did I deserve that bike!). I had Modulen to heal my body and I couldn’t eat anything except Foxes Glacier Mints and full-sugar gum. Modulen is YUCK! It was hard. I took Omeprazole and Azathioprine too.
I could swim, ride my bike, play football and cricket again. Even going to the loo was ‘normal’ and I wasn’t used to that!
Life was good for some time, then I started to flare again and Dr Broad gave me some steroids. I've had steroids twice now and they make me better and build my muscles… BUT when I stop them, I get poorly again.
Now I’m trying a new drug – Infliximab. I have this as an infusion into my hand or arm every 6-8 weeks at hospital. It’s a full day there but it’s not so bad- one full day of my ipad or phone without my parents moaning at me to get off a screen! I get sweets to take too, and sometimes a day off school (but my mum tries to book it in the holidays!).
I take part in the Plymouth Walkits. I have helped organise a ‘Crazy for Crohns’ day at my school. I've been to ‘Pig Racing’ and I have raised lots of money for Crohn's and Colitis UK and CICRA. I have penpals who have Crohn's like me.
I think there will be a cure for Crohn's soon because lots of research is being done. I have lots to look forward to so there has to be! I will keep fighting!!! I’m off to senior school in September and I’m looking forward to the new challenges that brings. When I am 12, I want to join army cadets.
Thanks for reading about my Crohn's journey.
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