William spoke at our IBD Family Information Day in London in late 2019. This is what he said...
My name is William. I am now nearly 15 and I was diagnosed with Crohn’s on my 12th birthday. For ages before this, mum and dad had been noticing that I was really pale. They took me to the GP but they didn’t know what was causing it. Then I started complaining about belly aches, and not always finishing my meals. I was really tired all the time, and would randomly be sick. Eventually, I went to a different GP. She referred me to see the paediatrician and he told me I might have IBD and referred me to the gastroenterologist. I was scoped a couple of weeks later and they were able to confirm that I have Crohn’s.
After only a couple of weeks, every time I drank some it made me feel sick, and after a while I just wasn’t able to keep it down. One evening around then, I mentioned to Mum that my legs really hurt. A friend of ours who is a doctor arrived with his medical textbook, took one look at the red blotches on my shins and said I had erythema nodusum. By the next day it was too painful to walk, and I was sick every time I tried to drink some modulen so Mum and Dad took me to hospital in pretty bad shape!
But, as the steroids were coming to an end, I started saying to Mum and Dad that I had a really sore back. After a series of scans, I was told that I had really weak bones, and this led to finding out I had compression fractures in my spine, hence the back pain.
The good news is that by then my back didn’t really hurt much, it only hurts occasionally now. But I need to have an infusion every six months to try and strengthen my bones, and I see an endocrinologist to check my back is healing.
After I finished taking steroids, my Crohn’s symptoms started to return. This is when we decided to try the Specific Carbohydrate Diet. Mum had found out about it through a friend and done a lot of reading, and she was keen to give it a try. At first it was really difficult. There are lots of ‘normal’ foods that I can’t eat, and I really missed things like bread and pasta and junk food! We decided to try it for three months and see if it helped at all.
That was all more than two years ago. Being on such a strict diet is not always easy. When my friends want to go out and eat somewhere, I always will have to check the menu beforehand, And often bring my own food which makes me self-conscious. But I have felt really well and so it seems worth it.
At the beginning of the summer, my doctors decided I needed more treatment to try and fix a fistula and to help me grow. In September I started having infliximab infusions. This means spending half a day in hospital every few weeks. I feel like I am getting to know the nurses on the Snow Fox ward at the Evelina pretty well now!
I feel different from other people having Crohns. Most of my friends don’t have a crohnic illness that won’t go away.
I don’t know what the future holds, but I am well at the moment, and I have lots of people in my life – friends and family, who are always there for me.