Moving to adult IBD care: Nick’s story

02 April 2017

22-year-old Nick has Ulcerative Colitis and is currently finishing off a Masters in Sports Science at Swansea University. He tells us about dealing with Inflammatory Bowel Disease (IBD) as a teenager and what is was like moving to the adult IBD team.

Diagnosis

I got diagnosed with Ulcerative Colitis when I was 12, so it’s over ten years that I’ve had it. It was worse at the beginning and I was hospitalized for a little bit - only a week or two maybe, while they got me into a stable condition. That was about three quarters of a way through the first year of secondary school. It’s not a great experience - I did miss a fair chunk of schooling, either being in hospital or going doctor’s appointments and generally being ill. At the time, I basically just knew that my gut was a bit messed up. I didn’t really understand it until I was little bit older, probably towards the end of secondary school.

Having treatment for Ulcerative Colitis

In the first three or four years I was on a lot more medication: I underwent a course of steroids, so I did go through at least a year of looking like a hamster because of those! And for two or three years I was on azathioprine, but eventually they started weaning me off that, and I was just on the minimum dose of Asacol. 

Now my condition is very stable on the basic Asacol and I’ve not suffered too greatly in comparison to other people. Other than the occasionally flare up or bad day here or there, it’s not ever gone towards as bad as it used to be.

Experiences of transition

Moving to the adult IBD team was a drawn out process over a couple of years, I think it started around about my fifteenth or sixteenth birthday. 

I had such a good rapport with my paediatric doctor, that I was a little bit dubious of changing clinicians. But at that age I was just like, “sure yeah whatever.” I didn’t really want to think too much about it at that point. 

The differences between paediatric and adult care

In the adult IBD team obviously there are less children and you are treated as more of an adult! The terminology used is more specific, less generalized. 

My mum’s probably gone through more of a transition than I have, she’s had to give up some of the lead on it and let me become more independent and more self-confident. She’s always come with me to my hospital appointments throughout my whole condition; I have never gone without her. It’s more that nowadays in the adult ward she will just sit outside and wait for me, whereas before she would come with me, have all the information and take down all the notes.

When the transition first started at the age of sixteen I wasn’t personally ready to take on the full independent self-managing role of it, but I’ve slowly grown more independent. Although I do still get my mum to order my medication for me!

Luckily, it’s not been a quick jump process it’s taken many years and work between me, the staff and my mum. The hospital staff managed it very, very well.

So all in all I don’t think I found the transition process too difficult, probably because it has been a slow process, and it’s been part of the transition of me being more independent anyway.

What I like about the adult IBD team

I do quite like the independence of it and the more grounded approach that you take after paediatric care. I’ve come from not really wanting to acknowledge the fact that I’ve got IBD, and not really wanting anyone to know, to being more open about it and researching it myself. 

I think adult care has had impact on that. Before it was my parents who answered all the questions, but now I need to have a more interested role in it, because I am the one that’s got to report on how I am doing and how I am finding things.

Coming to terms with Inflammatory Bowel Disease

It’s only since about two years ago, that I have actually started being open about the fact I have got IBD. When I was first ill I remember keeping it very quiet and very hushed and almost being embarrassed and protected about it.

But that actually made my life a lot harder. I’ve found that if you’re honest and open about things, people are generally just much more – “yeah sure ok!” People take an interest in it, and you find out more about them when you admit to something like that!

At that early stage when you’re not quite sure of who you are as a person, when you’re going through puberty it can be very, very impactful on your whole life. But your illness doesn’t define you. It’s a very clichéd thing to say, but it does get better, you’ve got to find your own way of maintaining it.


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