Coping with Crohn’s disease is hard enough — but it is even more difficult if combined with the other challenges of adolescence. This was the focus of a recent talk by Dr Sarah McCartney, consultant gastroenterologist at University College London Hospital, at Kinloss Synagogue, north London. The event was organised by Camp Simcha, which supports families coping with serious childhood illness and by Jewish Digest, a Crohn’s and colitis charity.
As chair of the adolescent and young person’s section at the British Society of Gastroenterology, Dr McCartney is a driving force behind the establishment of transition clinics for adolescents with irritable bowel disease (IBD), bridging the gap between paediatric and adult services and addressing issues particular to this age group.
“From the age of about 15 to 25, the adolescent brain is not very good at controlling impulses and there is a lot of emotional reactivity. A chronic disorder in addition to the tricky behaviour associated with this age can be very challenging,” she said.
The adolescent age group accounts for 25 per cent of IBD sufferers.“In young people it can be more severe and more extensive,” said Dr McCartney. “It can present with atypical symptoms and there can be a higher risk of long-term complications. We have had patients with just a fever; sometimes they present with anaemia or arthritis and it’s only later they present with other symptoms. Sometimes they just don’t grow, or they do grow and when they start puberty that development stops and, very rarely, they may present with psychiatric symptoms.”
“Introducing a liquid diet can be the best course of treatment… we try to avoid steroids if we can. With adolescents, they’ve only got one chance of growing, so it’s very important to treat the disease quite aggressively, because it (the disease itself) is aggressive. So we have a pretty low threshold for moving on to immuno-suppressants.”
One parent who attended the event is mother to a teenage boy who was diagnosed with Crohn’s 18 months ago.
“We saw the doctor after the summer, because he had been in so much pain in the holidays. He was scanned and diagnosed very quickly but it was still a shock. In hindsight, there had been signs — he used to be one of the tallest out of his friends and then suddenly he was the smallest, and my husband’s sister also has Crohn’s.
“He was put on a liquid diet for six weeks and one of the hardest parts of that was that he had just started secondary school, so he didn’t want to stand out as different. He was treated with various drugs, some of which made him ill, but then went on to immune-suppressants. These took several months to work but once they did he went into remission.
“However, they impact the immune system — so he caught dysentery while we were away in Israel, which turned into E Coli. For the next three to four months he was really poorly and was off school quite a bit, which was incredibly difficult academically and socially for him. He felt very isolated. Things have been better since December, but we have had to stress the importance of washing hands and he has to take responsibility for that because we can’t be there with him at school.”
Dr McCartney talked to parents in the audience about the issues that can arise as teenagers get older and need, and want, to take control of their own health.
“Sometimes parents are a bit resistant to their changing role and I have had a few teenagers asking parents to just sit outside for a while, because they don’t want their parents to make all the decisions. However, there is evidence that patients transferring to adult services from paediatric don’t always do well, especially with things like taking their medication. You see a lot of disease flare and non-adherence to medication.
“What we do in the transition clinic is try to train them so they can manage their disease once they get to the stage where they need to do it by themselves. The nurse specialists are key, because they can email them and get advice very quickly.”
Also on the event panel, chaired by consultant gastroenterologist Dr Steven Mann, were Dr Clive Onnie, consultant gastroenterologist; Dr Julian Stern, consultant psychiatrist and dietician Naomi Joseph.
If your child has IBD and you would like more information or support, contact Camp Simcha, campsimcha.org.uk or Jewish Digest, jewishdigest.org