• Claire-Marie is 13 years old, lives in Norfolk and has Crohn’s Disease, read her story …..

    Two years ago my mum and dad were worried about me always being ill, feeling sick, sitting on the toilet for ages and not wanting to eat my dinner – I was very thin and small and was always moaning how tired I felt,

    I already suffered with a under active thyroid so we went and saw our doctor for blood tests to see if my medication needed changing. We then went to the hospital and the process began starting with build-up drinks and iron, which didn’t work.  Then my doctor said he would send me to hospital for more tests as he had already ruled out any in tolerances to wheat or certain foods yet I was still losing weight feeling sick and very tired, I was crying at dinner time as I was hungry but every time I ate it got stuck made me sick or run to the toilet.

    We went to hospital where I had lots of tests and a small procedure where I was put to sleep so they could see what was inside and maybe cut a few bit off to test. We waited after to see our consultant who showed us pictures of my insides and explained my intestines should be like a 4-lane motorway but mine was blocked so only a 1 lane motorway and they confirmed I had Crohn’s Disease.

    When we went back to outpatients we met my lovely nurse who spoke firm but fair and explained to me with mum and dad listening, she asked lots of questions some I knew, some mum answered and some embarrassing. Then I was told I was going onto Modulen and unable to eat for 9 weeks which was over Christmas, I was told hopefully if I rested my intestines it might help so over Christmas I had no chocolates or sweets which was very difficult, but it seemed to work for a little while. Then I went on to steroids but they did not work the only thing with steroids it made me look like a chipmunk and my dad calling me Alvin!

    Then because I was not getting better I had another scope to look inside of me and woke up with a tube up my nose which stayed for 24 hrs so I could have an MRI which is weird but not scary and when they pulled the tube out it tickled.  Once they got the results I was called up on New Year’s Eve 2015 to start an infusion with infliximab which went in my arm over a couple of hours, I even got a present. Mum stayed with me and we played games, listened to music and watched TV. I did not notice any difference the first time.  By the third one it was starting to work, I had energy and was wanting to do things. I now have them every 8 weeks and the first day feel a little yuck, then I feel great but I do know when I am due again as start to get tired about a week before.

    The hardest part with Crohn’s is that friends don’t understand as you don’t look ill. I struggled at school and could only do half days for a while as I was falling asleep and needed the toilet or felt sick, I would lay on the sofa feeling sorry for myself but mum would make me get up and walk the dogs or practice dancing and although this helped I would never let mum know!  I am a keen dancer and this has kept me going and my teachers have been amazing with supporting me and encouraging me even when I was tired, I still have bad days but mum knows when I am just being lazy or unwell,

    My nurse is amazing, funny, firm and full of knowledge which has helped along with my mad family who have not put any barriers,  a typical conversation always ends up about toilet habits and who spends the longest time in there me or my brothers on their phones.  This has helped me to go out and not worry about if I need the toilet, if this happens in restaurants and we are getting ready to go,  I say “just going to the toilet” and my family laugh take coats of and sit down again!

    I have learnt about the drugs I take and tried to explain to friends who sometimes think I am just trying to get out of school and making it up.  My few close friends have asked for more information to understand the condition but sometimes they will say you look ok but inside I feel yuk.  Last weekend I competed in the amateur medallist grand final ballroom and Latin grand final where I reached the semi-final and so places me top 12 nationally.  I am also participating in a research project, when they take blood or tissue samples they take a little extra for research.  My brother also doing a study trial to help understand and treat Crohn’s Disease better in the future.

    Claire-Marie spoke at our recent IBD Family Information Day in Cambridge.