A MOTHER is highlighting the traumas of an “invisible illness” that left her son fighting for his life.
As a youngster it took five years for Callum Shields to get a diagnosis for debilitating Crohn’s disease.
And while that brought relief and the opportunity to manage his condition, he later suffered a major relapse in his early twenties which saw him lose a third of his body weight and was forced to spend months in and out of hospital.
His mother, Denise, is now a community champion for the charity Crohn’s and Colitis UK and remembers how Callum’s illness at first defied the medical experts and then brought him close to death.
Crohn’s is a chronic condition that causes inflammation of the digestive system or gut.
It is one of the two main forms of inflammatory bowel disease, the other being ulcerative colitis.
More than 300,000 people in the UK are affected by inflammatory bowel disease with someone diagnosed every 30 minutes.
“Callum was diagnosed when he was 13. But before then we had taken him to a number of consultants, yet no one could come up with what was wrong with him,” recalls Denise, of Hawarden.
“Eventually he was taken into hospital and diagnosed the next day by the consultant whose care he has been under since.
“He had a massive, massive relapse when he was 23 and nearly died. When he went into remission I just knew I wanted to do something positive and I have been raising awareness of the work of Crohn’s and Colitis UK since.”
Large and unexplained weight loss is one of the major symptoms of Crohn’s – Callum’s weight dropped to just four stone at the time of his diagnosis. For a sporty teenager who had shone at sprint hurdling and was crowned a Welsh national champion it was a big blow to confidence and self-esteem.
While symptoms of Crohn’s can vary between individuals, it is common to suffer from chronic fatigue and abdominal pain and diarrhoea – which can cause embarrassment as well as a trigger for emotional problems.
“There is a shame about Crohn’s and colitis as no young person wants to be talking about its catastrophic effects,” says Denise.
“It affects people and they might choose not to go out which means they become isolated.
“But Callum had an exceptionally close group of friends who were wonderful and stuck by him.
“The symptoms can be gruesome and are embarrassing. It can affect children as young as two and three or people can suddenly develop it in their sixties and seventies.
“The main features are chronic fatigue, dreadful abdominal pain and a lack of bowel control.
“It can lead to other conditions like anemia. It is a chronic long-term condition and there isn’t a cure. It is an ‘invisible disease’.”
Despite his illness, Callum refused to be beaten and has since managed to pursue his love of sport.
He graduated with a first class honours degree in sports science from Cardiff University.
Now 27, he works as an event manager with Active Leisure, helping to organise the Chester marathon and half marathon.
“He had illnesses through secondary school and had to take two extra years getting through university,” says Denise.
“But he is a picture of health now and has shown that even when things are dreadful with Crohn’s you can come through it and move on with your life.”
Denise turned to gardening to cope with her son’s struggles – later her passion helped secure an award at this year’s RHS Flower Shower at Tatton Park for a show garden in tribute to the fight against the illness, called ‘Facing Fear’.
During the darkest period of Callum’s illness, Denise received support from Crohn’s and Colitis UK. The charity provides confidential advice services, including a phone helpline, benefits advice and a grants panel of which she is now a member.
It helps those on low incomes buy products such as new clothes due to weight loss or replace beds and bedding which are soiled.
“There is also a lot of work going into raising funds for research programmes to try and find a cure,” says Denise, who says careful lifestyle changes can help manage the condition, while supporting self-esteem is key if the illness forces stoma surgery
“There have been advances with new drugs which have benefited people, but nobody as yet has come up with a cure. It could be genetic, but no one knows as yet what is the trigger that causes it.
“It can flare up with certain foods or alcohol and stress plays a part too. Sometimes it can be changing diet, others take medication for the rest of your life.”
She adds: “Sometimes that doesn’t work and some people might need surgery and some have to have parts of their bowel removed and have a stoma bag.
“It can be very demoralising for them, so the charity does a lot of work on image. For example the message is you can still lead a normal working life and with young people who may be self-conscious about it the emphasis is you can still wear swimwear and so forth.
“People are embarrassed, but there is a huge amount of support out there. I would urge people to go to the doctors as there is treatment that can make their life better.”
l Crohns/Colitis Awareness Week runs from December 1 to 7. Crohn’s and Colitis UK provides information and personal care for people affected by the conditions. See www.crohnsandcolitis.org.uk
See full story in the Leader