I was diagnosed with Crohn's at age of 15, but for around two years prior to that kept getting colds and coughs, was just generally unwell and had really bad fatigue. My GP referred me to a specialist, they discovered I was anaemic and treated me. Obviously, a few years later they realised that the anaemia was caused by Crohn's Disease. So my diagnosis took a very long time, and during that time, I lost a lot of weight: I was down to just under five stone. Finally, I got diagnosed in 2007 and started different courses of treatment. I am now on weekly and fortnightly injections as well as medication that I take daily. Touch-wood - my condition is now very much under control.
But when I had my initial diagnosis, I was going into my GCSE year; obviously being in high school isn't easy, especially if you're seen to have problems. At the time, a lot of people started second-guessing what was wrong with me, saying I was anorexic and bulimic, just because of the weight I was losing. Psychologically this was a very big thing to deal with. Especially as I knew I wasn't doing it to myself and I wasn't getting any answers.
My paediatric IBD team made sure I had counselling and psychological treatment and that did help, but it was a very difficult time.
Moving to the adult IBD team
Being 15 at the time of diagnosis, I was being treated by paediatrics. They kept me for longer than they would normally do, because I wasn't responding to treatment and I had multiple surgeries. Luckily my fantastic paediatric team didn't want the stress of me changing my care at that time when my condition was very unstable. So I was closer to 18 when I moved over to adult treatment. I was very much involved in that decision, I was treated as an 18-year old, and I wasn't spoken to like I was a child.
For the first appointment with the adult team, my paediatric doctor, my mum and my nurse specialist were there. So I had that very strong support with me, which did help.
I had surgery when I was 17 and the adult surgeons and consultants were involved and discussed my care with me. I felt that there was a very good line of communication and it continued after paediatrics handed me over.
The emotional impact
I was nervous, really apprehensive and definitely emotional about transition! There is no other way of explaining how I felt about my paediatric team other than like a family. The people that had cared for me for three years and had gone through the difficult times of my life with me, were now stepping away.
I'm lucky that I've got a very supportive family and friend base, but if I am honest, I still hadn't come to terms with my condition at the time of being handed over to adult care. I think I had a lot of underlying problems that had not been addressed at that time.
Even though I had initial counselling when I was first diagnosed, my mental health and I how I was coping with things became even more of a concern for me. It was a struggle to talk to the adult IBD team, but later on in my life, I did address it and I did get the help I needed.
So I am a strong believer in the psychological side of treatment -it should still be accessible when you move over to the adult team.
What has helped me?
I didn't go and look outside my direct group of friends and seek more support from Crohn's & Colitis UK until 2010, once I had come to terms with things more myself. I got a message saying that the North Midlands group was closing. I hadn't used it yet, but I felt that the support network should be there for people, and that's how I got involved.
I ended up as the chairperson of North Midlands group, we ran an organised team and supported each other. Although I had to step down when I made a career move to London, I still try and do as much as I can for Crohn's & Colitis UK. I think helping other people helped me - that's how I cope with things.
I've just recently had one of the most very stressful times in my life: moving house, moving job and moving area. But I've still maintained my health, by just knowing my body and being sensible.
For me that's a really important point; learning to know my own body, how it works, how I am feeling, and when to slow down. That was definitely a big part of adjusting to the condition.
Good and bad days
I've spoken to a lot of transition patients in my role as the chair of the North Midlands group. I always say that you shouldn't be afraid to speak up; it's ok to have good and bad days, but don't just bottle it up and wait for your next appointment. There are people that you can speak to before, like your nurse specialists, your GP, and there are helplines that you can call.
IBD is already taboo, and you add in conditions concerning mental health it can really be isolating and debilitating. That's why it so essential to talk about it, it's so important. I don't mind talking about it, even if it just helps one person, that's the main thing!
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Crohn's & Colitis UK has written a brand new guide for young people with Inflammatory Bowel Disease about moving to adult care:
