Childhood cases of inflammatory bowel disease double in 10 years

The number of children diagnosed with a bowel condition has soared over the last decade, research has found.

The study was led by Dr James Ashton, consultant paediatric gastroenterologist at Southampton Children’s Hospital (SCH).

Dr Ashton, who is also an NIHR Advanced Fellow at the University of Southampton, says the results are a 'wake-up call'.

What is IBD?

Inflammatory bowel disease (IBD) describes several disorders involving chronic inflammation of tissues in the digestive tract. The most common are Crohn’s disease and ulcerative colitis.

Approximately 1,750 children and young people are diagnosed with IBD in the UK every year. Around one in every 16 of these cases is treated at SCH.

For most, IBD is a lifelong and often debilitating condition. Symptoms include abdominal pain, diarrhoea, blood in poo, fatigue and weight loss. It can lead to life-threatening complications.

‘Wake-up call’

The research is one of the biggest paediatric IBD studies undertaken in the UK. It includes data from five NHS sites, including Oxford, Bristol, Exeter and Cardiff.

The results, published in the journal Oxford Academic, found all sites had seen a sustained increase in diagnosis since 2013. The rate of IBD in children doubled in most areas.

In 2023, SCH diagnosed 113 new paediatric patients with over 460 patients receiving ongoing care. In 2013, it was just 50 new patients and 250 with ongoing care.

“The results are a significant wake-up call,” Dr Ashton said, “especially as the rate of increase was similar in all areas.”

Finding reasons

The study does not show why IBD diagnoses are rising. However, ongoing research in Southampton is exploring possible causes for the disease, which include genetics and diet.

“It’s complicated to say why we’ve seen the increase, as the disease is very specific to each individual, with everybody having an underlying genetic risk,” said Dr Ashton.

“However, genetics don’t change over 10 years, so the next obvious factor would be societal environmental and lifestyle changes. We have seen a shift in our diets, with an increase in the consumption of processed foods.

“Although we don’t know if this is the predominant cause, it would certainly appear to play a part. However, it is important to state that there is no single trigger for the disease, and having IBD is not the result of doing something wrong. We’re talking about contributing factors on a societal level here.”

Dr Ashton hopes the study will help understand the causes of the disease. He also hopes it will mean IBD services are adequately resourced, so healthcare professionals can provide good care.

Imogen’s experience

Imogen Knight, 14, was diagnosed with IBD at SCH in April 2023.

“I started suffering around October 2022 and I noticed that as soon as I ate, I would have to go straight to the bathroom,” she said.

“It got worse very quickly, and the pain soon became unbearable. I would go all day without eating as I didn’t want to eat at school, so would wait until I got home.”

Doctors initially put the symptoms down to anxiety. However, in March 2023, after losing almost three stone, Imogen’s symptoms worsened, and she was admitted to hospital.

She was diagnosed with IBD and her journey to a pain-free life began.

“I was just glad that they finally knew what it was, and I had a chance of getting better,” she said. “I was exhausted, and my body was exhausted from all the pain, I was hardly going to school, and it was just a horrible time.”

For Imogen, the treatment plan didn’t stop the symptoms or slow the disease. So, a year after her diagnosis, she underwent surgery to remove her large bowel. She now uses a colostomy bag.

“The bag saved my life. I’m still getting used to it and it’s been a bit of a rocky road, especially with some of the things that people say, but I don’t care,” she said. “I don’t feel ill all the time anymore, and it means I can be normal again and enjoy my Sunday roasts!

“I used to struggle with self-confidence before the bag, so it’s even harder now, but I want to help others and raise awareness of the disease, as I don’t want anyone else to feel like I did.”