Amanda Barrell from Oyster Healthcare Communications wrote the following blog after attending a recent CICRA IBD Family Information Day:-
The number of children being told they have inflammatory bowel disease is on the rise: one in four people newly diagnosed with Crohn’s or ulcerative colitis is under 16.
While there are many unproven theories on why this is, no one really knows the answer. What is certain is that these diseases throw childhoods into disarray.
They are autoimmune, meaning they are caused by a malfunction in the immune system – the digestive system thinks it is fighting infection, but is in fact attacking itself. This leads to swelling, rupturing and ulcering in the bowel.
Crohn’s and colitis, collectively known as inflammatory bowel disease (IBD), are characterised by periods of remission and active disease, often called a flare up.
They have no cure, so a child or teenager diagnosed with Crohn’s or colitis is facing a lifetime of medication, hospital admissions and maybe even operations.
Symptoms include pain and fatigue as well as bloody stools, chronic diarrhoea and the inability to wait to use the toilet – not the kind of thing your average teenager wants to speak to their mates about and many youngsters end up feeling isolated and alone.
In November, Oyster went along to a family day organised by CICRA, a small charity dedicated to helping these young people and their parents live as normal lives as possible.
The event was an opportunity for the children and young people to spend time with each other, a chance for the younger ones to have some fun, and for the older ones and parents to learn more about IBD. It was inspirational and heart breaking in equal measure.
As well as the talks from doctors on research, treatment and surgery, a number of teenagers spoke about their own experiences of living with IBD.
The embarrassment of school trips with shared bathrooms, the impact of exam stress on flare-ups and how IBD shouldn’t stop you getting involved in first-year university shenanigans were among the topics of discussion.
These speakers really stuck a cord with us, as they would with everyone who has been through adolescence. Growing up is hard enough, without having each and every right of passage coloured by a chronic disease you can’t talk to anyone about.
We were at the family day to find out what people needed in terms of information so we could help the charity put together a review of what they currently provide. Everyone we spoke to was united by one thing – they were just happy to have the opportunity to talk about it.
We asked youngsters to draw on our feelings wall, which they did with relish and to greater and lesser degrees of artistic flair. We played some rounds of “label the bowel”, which gave them a chance to learn a little bit about inside their bellies, and we asked young people to write us poems on how having IBD made them feel.
To read the words of children as young as nine talking with maturity and grace about a disease they know they will have to live with for the rest of their live was humbling beyond words.
“IBD is not cancer, I will not die, but to me IBD is as bad as cancer”, wrote one child, “IBD is part of me….” wrote another.
One told us she felt left out at school because she was too tired to play hockey with her friends, and a nine-year-old asked us if the drugs she was on would stop her having children when she grew up. To hear such a young person worrying about such things was soul destroying and it was all we could do to stop ourselves reaching out for a hug.
Parents told us of the difficulties they faced getting their children diagnosed and trying to get schools to understand their children needed special dispensations: extra toilet breaks, help to catch up when their disease flared and left them hospital for weeks on end.
They spoke about the pain they went through watching their children having to deal with a disease that impacted on every aspect of their young lives, from family activities to social lives. They told us how tough it was trying to get their child to accept they had a chronic medical condition, while they themselves were cracking from the strain.
But this was not a depressing day – it was uplifting and inspirational. There were high fives and high jinks; laughter and mischief. These children were not about to give up, and, even if they were, their parents had no intention of letting them do so.
The subject matter was heavy and these children were dealing with issues many of their peers would find unimaginable, but there was a buzz about the place.
Being able to hang out with other people who knew what they were going through was the one thing they all said they wanted – to know they were not alone, that they were normal kids.
While their classmates were worrying about computer games or their latest crush, these youngsters were attempting to stick to strict medication regimes, juggle hospital appointments and work out which of their favourite foods make them feel worse.
While all parents have to come to terms with their children growing up, these parents have to learn to how to hand a normal, hormone-fuelled teenager, responsibility for their own health.
A diagnosis of IBD is a knockout punch for parents and their children, as well as siblings, grandparents: the whole family. All too often it’s a disease they know nothing about and, in many cases, had never heard of. A quick Google search will confront them with thousands of pages of information, mainly scary, mainly inaccurate.
That’s why an organisation like CICRA is so important: it provides trusted information and a reliable source of support that many described as a lifeline.
CICRA wants to do more, though, which is why we are carrying out a review of its current information offer. Over the next few months we will be carrying out surveys, running workshops and interviewing specialist nurses to make sure everything we do has these incredible young people and their parents at its centre.