Behind the invisible disease affecting a growing number of children

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CROHN’S and colitis were once thought to be adult conditions, but these days, children as young as two or three are being diagnosed with them.

For children and young people with an inflammatory bowel disease (IBD), it is an every day reality of both physical and psychological pain as they try to navigate this tricky, misunderstood condition.

Lucy’s Story

Lucy Jane Smith-Butler, an 18-year-old Mancunian fashion blogger, is just one of the many young people dealing with all the complications that an IBD can throw at them. She has ulcerative colitis; a condition where the colon and rectum become inflamed, which causes a myriad of symptoms from fatigue to unexplained weight loss. Lucy began feeling the effects of ulcerative colitis in February 2017, and was officially diagnosed just a month later, in March.

She said: “I was noticing bloody stools and feeling exhausted for no reason… I was so confused and kept wondering what was happening to me, I had no effort to do anything, which was very unlike me.”

Once Lucy was referred to a specialist, she was told she had proctitis, which is an inflammation of the rectum. She explains that even though she knew it was a chronic condition, she was satisfied with her diagnosis and was hopeful that medication would control it. However, by June 2017, Lucy was still suffering with the same symptoms. Unfortunately, after further tests, doctors discovered that her proctitis had spread, and she was placed on more medication, which again didn’t seem to help.

Crohn’s and colitis are very under-researched conditions, and as a result, not much is known about what causes them and how they can be controlled. Often, sufferers must undergo a trial and error approach to their medication, which is exactly what Lucy had to go through.

corhn's and colitis

Margaret Lee, the chair of Crohn’s in Childhood Research Association (CICRA), said: “It appears in healthy children, and then something triggers it off and we don’t know what that is… In a nutshell, it is really difficult because every case is different, the symptoms aren’t the same, so the treatment can’t be the same,”

Before she was diagnosed, Lucy was a confident, outgoing and passionate young woman, who enjoyed sharing her love for passion through her blog and was excited to leave Manchester to study fashion in London. However, with her diagnosis and decline in health, Lucy has become someone she often doesn’t recognise, with feelings of anxiety and isolation. Furthermore, she has had to place her dreams of studying fashion in London on hold.

This is one of the most challenging aspects of IBD’s in children and young people; it can have a catastrophic effect on their education and social integration, which may lead to anxiety and other mental health problems. Mrs. Lee explains that as child or young person with an IBD, you can no longer keep up with your friends, and with the heightened use of social media in this modern world, it is no longer possible to avoid facing the fact that you are missing out.

Lucy deals with this isolation and anxiety by trying to be as open and honest about her condition as possible. She said: “When I write or talk about it, it’s a way of explaining myself and letting out all the niggling thoughts I have surrounding my disease… People need to know that just because I look okay, there is an awful lot going on inside than meets the eye.”

crohn's and colitis

Clearly, Lucy is a very strong young woman who attempted to struggle on despite her illness, but on July 1, when she went for a routine colonoscopy, she ended up being admitted to hospital as doctors realised the extent of her illness.

She said: “The day of the scope is a bit of a haze… all I remember is hearing ‘This is bad, I need to admit her’ and the rest is a blur.”

The next four days, Lucy was faced with the reality of how ill she really is as she pumped with steroids and antibiotics in a bid to bring her back to health. Since the summer, Lucy has been taking an immune-suppressant drug, which must be taken as a two-hour infusion. At first, the infliximab treatment was working and Lucy felt confident that she might reach remission. However, she recently discovered that the drug is no longer working.

She said: “I don’t know where my story goes from here, more trials and errors I guess, but I suppose you just have to get up, get on and stay fighting.”

Crohn’s in Childhood Research Association (CICRA)

The only UK registered charity formed to support the growing numbers of children and young people, as well as their parents, with IBD’s, and was founded in 1978 by a group of parents who’s children were suffering with crohn’s and colitis. Margaret Lee MBE is the Chair of the charity, and is a very passionate individual when it comes to raising awareness of the condition.

She said: “Up until the late seventies, it wasn’t seen in children at all and was seen as an adult condition, but then it started appearing in children and now even toddlers are being diagnosed.”

Crohn’s and colitis is a particularly difficult condition to treat in children and young people for a variety of reasons, which is why the work that CICRA does is so vital. Children with IBD’s often suffer a lot more than simply just bowel issues, as it can result it a multitude of issues, such as, growth problems and falling behind in education. In fact, Mrs. Lee reveals that often children with crohn’s will also experience delayed growth and puberty.

She said: “It is a very serious condition and it really just takes away their childhood.”

Furthermore, children and young people with IBD’s, as Lucy highlighted, often face the danger of falling behind in school, being unable to go ahead with their studies or having feelings of isolation and anxiety. The aid for this is research, awareness and support for those suffering. CICRA focuses on research and training medical professionals to be more able to diagnose and treat sufferers.

Mrs. Lee said “A lot of parents haven’t heard of it before, so it is really frightening when you’re faced with a diagnosis and a name you haven’t heard before, somehow or other is less scary when you’re aware of the condition and have heard them name before.”

Each year, CICRA go through Britain and host information days for sufferers and their families, so that they can speak to each other, share experiences and learn from the specialist doctors and nurses. These days are infinitely helpful, which is proven by the amazing feedback they get from each and every family day. Sufferers and families alike find so much use in being given the time to ask the day-to-day questions that you may not otherwise be given the time to ask.

Mrs Lee said: “For the older children and teenagers, we have a group where they can talk amongst themselves and ask their own questions, which may not always be about the condition, sometimes it may be questions about their relationships, because of course it is very hard for them to know whether or not they should tell people.”

As well as the family days, there are schemes where CICRA connects parents and children with other families so that they have someone to speak to who understands their situation. This kind of support is invaluable because it gives the children and their families the ability to realise they are not alone. These schemes also get overwhelmingly positive feedback from the charity members.

Mrs. Lee said: “Some of the 20-year-olds have said said that they had made a friend for life through the scheme, and it’s really nice when they say things like ‘oh they got me through hard times’ and it’s that support, isn’t it.”crohn's and colitisTo contact the charity, find out more about the family days and e-pal scheme, click here.

 

 

 

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