When Alex was seven nearly eight he had what we thought was a really bad stomach bug, but it didn't clear up after 24 hours, it just went on and on. We took him to the doctors, but they didn't really know what it was, they thought it might have been food poisoning, and he was getting weaker and weaker as each day passed. Eventually, after going backwards and forwards between different hospitals, he was diagnosed with Ulcerative Colitis.
So it's been difficult for me as I've been with him on the journey since he was very young, I've had to know a lot and get involved.
Alex does take lots of medication. It can take a while to know what works especially as he's growing. He is on a few drugs now and he also injects Humira every few week as well. He's doing really well at the moment, but it's been very much a rollercoaster ride.
Psychological impact
He missed quite a lot of schooling, especially in years 10 and 11, and that's quite a vital time really. Some of it was due to severe flare-ups of the condition, but also the condition itself has quite a psychological effect, it's a major part of somebody dealing with IBD, I do think that it is one of the issues that is often overlooked. That was probably hardest to see him struggling that way, as well as hard seeing him in pain with the actual condition. But he pulled it round and he's done really well.
We didn't realise it at first but his IBD team had their own child psychologist that deals with issues particularly relating to the condition, which was exactly what he needed. The psychologist's help was invaluable at the time, they also liaised very closely with the school, and now we don't have any issues.
Experience of transition
Alex has been with his paediatric team since he was seven, but he changed over to a transition clinic near his 17th birthday. They sometimes do it earlier. He'll stay with the transition clinic until he is approximately 24, they don't rush it. It's about mid-20s that they put him into adult care, so he has definitely got a few years in the transition clinic. Not many other hospitals have a transition clinic -but it's marvellous.
It's still the same IBD nurses, so that is good because you've got the continuity of care. They've been brilliant, you can always ring them if you've got any queries.
But it's different in the transition clinic, when we walked in, the new doctor said to Alex: "How do you feel about your medication? Are you happy to stay on it, or do you want to change it?" It completely threw Alex - he just turned to the doctor and said "well you're the doctor in the room, you must know!"
They had to explain, it's different now, we want you to have input into your care as well. In the end, Alex said "well I feel quite well, I'm doing alright." So the doctor said, "that's a good answer, so we'll keep you on what you're on." So it worked out ok!
Managing his condition
It's very important to let them manage their own life. When he was younger, we did everything - you'd have to get all the drugs out, but now Alex does that and takes them all himself. I still put in repeat prescriptions and ring up the company who send the injections to the house. But it's good because he's taking more control.
Up until recently, I had arranged all the appointments, but he has started to go alone now. I'm quite happy to go with him if he needs me there, or he can go on his own, it's his choice now.
Moving to the adult IBD team
I haven't really thought that far ahead because he's only really just changed to the transition clinic. I think he's quite mature for his age anyway, I think if he is coping with this now, hopefully by the time he's mid-20s he will take it in his stride and we hope it'll be fine. They prepare them for that anyway.
Crohn's & Colitis UK has written a brand new guide for young people with Inflammatory Bowel Disease about moving to adult care:
