Words Gail Crampton
Inflammatory bowel disease is so misunderstood and frequently misdiagnosed resulting in years of misery for adults and children. There is a common myth among health professionals that children don’t get IBD, but they do. There are currently about 10000 children in the UK with IBD, and the numbers are growing rapidly.
When my daughter, Isabelle, was 6 she began having severe stomach pains, nausea, and no appetite. It would appear and disappear, but each time gets progressively worse. We noticed that she was becoming very thin, lethargic, and pale. I took her to her GP countless times, she had numerous blood tests and examinations, but it was always attributed to “stomach migraines”, a type of migraine suffered mainly by children.
By the time she was 10, it became very apparent that Isabelle was very ill, to the point we were carrying her around! My husband and I pleaded at yet another GP appointment, in which he again refused to refer us, a locum went behind his back. We believe she saved Isabelle life! Isabelle was eventually seen, which seemed to take forever, she endured MRIs, colonoscopies, endoscopies until we discovered she has Crohn’s disease. Crohn’s disease is a lifelong condition in which parts of the digestive system become inflamed. Living with Crohn’s disease can be difficult at times. Unpredictable flare-ups and regular check-ups with your care team can disrupt school, work and your social life. However, if symptoms are well controlled, you can live a normal life with the condition.
Two years on, Isabelle was in remission under Birmingham children’s hospital, she has a daily dose of immunosuppressant drugs and an infliximab infusion every six weeks. There is currently no cure for inflammatory bowel disease (IBD) and it is a very misunderstood and complex condition. I am the first one to admit I had very little understanding of IBD myself and have spoken to various customers in the health shop where I work, who suffered without any realisation how debilitating it is.
A lot of people associate the condition with diet, if only it was that simple! It’s an autoimmune illness where the enzymes in the gut attack the lining causing massive ulceration anywhere from the mouth to anus. Symptoms range from person to person but weight loss, severe stomach cramps, bleeding, diarrhoea, constipation, nausea, joint pain, mouth ulcers and eye inflammation are all symptoms. One of the most defining ways to initially diagnosis IBD is with a poo test called calprotectin. Its measures inflammation in the bowel. If Isabelle had been offered this test years ago, she could have been helped so much sooner!
If I have learned anything from our experience, it is to keep on pushing and I have subsequently spoken to many of our customers who have worrying and prolonged symptoms. I now know how to signpost them to get the correct tests and help. So much damage is being done if the bowel is left untreated.
After the initial terror and sadness of Isabelle diagnosis I found strength in raising awareness and fundraising. I have raised money for Crohn’s and Colitis UK, CICRA (Crohns in Childhood Research Association), and Birmingham Children’s hospital.
Raising awareness is as equally important as raising money! If people don’t know it’s serious, they won’t take it seriously! I was also inspired to write a children’s book called Rodney Meadow-Hopper, The Hare Who Didn’t Care, which is told in gentle rhyme and encourages the child to discuss with their parents how they feel.
Rodney has an illness, which is never disclosed, and he doesn’t want to play or tell his friends in case they don’t want to be around him or treat him differently. I have also given talks raising awareness of invisible illness in school and education and have been on the radio a number of times and hope to do more.
You can buy Rodney Meadow-Hopper, the Hare Who Didn’t care on Etsy.