Moving to Adult IBD Care: Harry’s Story

19 April 2017

Harry, is 16 and studying for his A Levels. He was diagnosed with Crohn’s Disease when he was 10, here he tells us about how he deals with his condition, his thoughts on moving to the adult IBD team when he is 18, what’s helping him prepare and how he deals with stress.

What happened when you were diagnosed?

I was diagnosed with Crohn’s on the 11th March 2011. I remember the exact date because it was a shocking moment in my life - it changed my life. 

I was losing lots of weight drastically, and had to get cabs everywhere because I was so weak, fragile and skinny - I went down to four and a half stone. So my mum and Nan to took me up to the hospital, and I was put on drip straightaway to rehydrate me. My mum has Crohn’s Disease, she’s had it for over 20 years, so they thought I had it as well.

Eventually after lots of tests they told me it was Crohn’s.

How did that make you feel?

At the time I didn’t really know what was going on - you don’t know when you’re that young. When I went on to relapse later on, I felt more aware and upset than when I was first diagnosed.

What treatment have you had since then?

I’ve had the liquid diet – Modulen and lots of different medications – steroids, Infliximab infusions through a drip and eventually something called Humira. I started having that two years ago and I’m still on it. 

But for some reason in September last year I went into a major relapse – when I about to start my last year of GCSEs. I went in hospital for three weeks, they tried Modulen again and it worked. At the moment I’m on the Humira injections azathioprine, omeprazole and vitamin D tablets. 

How does Crohn’s Disease impact on your life?

Sometimes you don’t even know you have it, you just don’t think about it. But sometimes it can be continuous part of your life, like when you relapse.

The most upsetting thing with Crohn’s for me is that your body is affected, but your mind is not. You’ve got all these things you want to do. With me, I’m so focused on my studies, and I got ill when I was doing my GCSES and I was like – “I can’t do them!” and it stresses you out. 

So I try to destress sometimes, I’ve started doing it more in the last year after my relapse. I listen to music, sit in a park somewhere, have some ‘me-time.’ 
I am one of those people that wants to do everything, but I know that I can’t. So I’m like – “Harry ok, calm down, you can only do some stuff today, and then save the rest for another day.”

You’re treated in the children’s IBD team now, but we hear that you’re going to ‘transition’ to the adult IBD team when you’re 18. How do you feel about that? 

I feel a bit sad, because I’ve been with my doctor and IBD nurse since I was 10, he knows me and I feel like I have built trust. I feel like I could go to him about anything. But it’s good because my mum sees the adult IBD team there. She knows all the doctors and the IBD nurse and really likes them.

I will like it in one way, when I’m with older people.It’s a bit weird as I am 16 and when I go for an appointment there is a four-year-old in the same waiting room!

What do you think will help you prepare for transition?

I’ve still got more time to prepare, that’s the good thing. I liked it when my nurses said that I’m going to have a meeting with the doctor and the IBD nurse in the adult ward, so I can get to know them.

I already manage my medication all on my own – inject myself, take my tablets and I know what I am on. And I didn’t used to, but I’ve started going to hospital on my own.

It also helps that me and my mum have a great relationship, she has the same illness as me so she understands what I am going through. 

Plus I’ve got some really good friends with IBD, I made them when I was having my Infliximab infusions when I was 12. They can ask me for advice and I can ask them, if one of us is really ill we know what that feels like, we really feel it. That makes me feel less alone.

What are your plans for the future?

I want to help, because of the hospital and everyone who has helped me. I want to give back a bit and help the Crohn’s and Colitis UK raise awareness. 

I was quite upset when I had my relapse because I wanted to do my GCSEs and I thought I couldn’t. But you still have to carry on - you need to keep your brain going. And I did do them in the end, I passed and got onto A Levels. I put my illness first but I try not to let it get in the way.

Crohn's and Colitis UK has written a brand new guide for young people with Inflammatory Bowel Disease about moving to adult care: