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.
The first treatment I tried was Modulen, I really found it difficult not being able to eat and only able to drink sweet shakes.
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!
The next medication I tried was steroids. I was on a nine-week course. After the first two weeks or so it made me feel so hungry and much better than I had felt for ages.
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.
We all noticed a huge improvement. I was no longer giving up halfway through a meal and I started to feel really normal again.
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 feel like I have got mentally stronger because I have had to go through things that most people my age don’t know anything about.
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.