Digestive conditions like Crohn’s disease and Ulcerative colitis cause children to miss out on very important parts of childhood and need to be as well understood as asthma and diabetes.
The number of young people diagnosed with inflammatory bowel disease (IBD) in the UK has doubled over 20 years with average age at diagnosis now around 13. More young children than ever are diagnosed before the age of 10. A lack of awareness and understanding means the impact of IBD goes far beyond the physical, ruining childhood.
Young people often feel embarrassed to talk about IBD so their day-to-day struggles with schoolwork, socialising and life get overlooked.
IBD affects children’s physical and mental health
Crohn’s disease and Ulcerative colitis (the two main types of IBD) are a malfunction of the immune system where the digestive system thinks it is fighting infection but is in fact attacking itself. This can lead to swelling, rupturing and ulceration in the bowel causing pain, fatigue, bloody stools and chronic diarrhoea. Steroids are a common treatment and have distressing side effects which affect a child’s appearance, mood and behaviour. Others suppress the immune system, leaving children more vulnerable to infectious diseases like chicken pox. Some children will also have a nutritional feed via a tube through their nose. Children with IBD will need to visit hospital for regular appointments and for invasive investigations, including endoscopy. Some children require surgery to remove diseased sections of the bowel and will need a stoma.
Children with IBD can be small for their age, making them appear younger, which can make them a target for bullies. Combined with the strain of living with their condition, this can make them become withdrawn, anxious and depressed. Relapses can be particularly difficult to deal with emotionally.
IBD affects education
Young people with IBD are more likely to underachieve at school because recurring medical appointments necessitate days out of the classroom, fatigue reduces participation in activities and constant need to use toilets stops them taking trips. Even worse, some schools do not follow government guidance on medical conditions and penalise poor attendance. Symptoms can be exacerbated around stress-filled times such as exams or having special liquid feeds through a nasal tube.
Social taboos exacerbate the problem
Young people often feel embarrassed to talk about IBD so their day-to-day struggles with schoolwork, socialising and life get overlooked. This strains friendships at important times in their lives and they miss important aspects of childhood. The main goal of doctors and nurses in treating children with IBD is to let them grow up, go to school, and live a normal life. Supportive friends and informed staff can make a huge difference to their experience and educational performance.
Everyone can help
CICRA’s vision is for a childhood unlimited by inflammatory bowel disease. Through sensitivity, flexibility and support we can all ensure the needs of children with IBD are better met. By understanding these debilitating conditions and tackling the bullying and emotional distress that can occur, we can alleviate the social angst, psychological trauma and daily physical problems they face. As Sophie, a young person who has lived with Crohn’s for many years, has learned:
“IBD is nothing to be embarrassed or ashamed about. Once you accept this, you’ll feel more confident. Toilets. Bottoms. Poo. We all have them, we all do them. People are only uncomfortable talking about IBD if you are.”
We should all talk more about these increasingly prevalent conditions and bust the taboos.