Study shows cases of inflammatory bowel disease in children doubles in 10 years
A recent study led by Southampton Children’s Hospital (SCH) shows the number of children and young adults being diagnosed with inflammatory bowel disease (IBD) has more than doubled in the last 10 years.
IBD is a term that describes several disorders involving chronic inflammation of tissues in the digestive tract, with the most common being Crohn’s disease and ulcerative colitis.
Rarely IBD is only a mild chronic illness but for most it can be a lifelong, often debilitating condition that can lead to life-threatening complications. Symptoms are usually characterised by abdominal pain, diarrhoea, blood in poo, fatigue, and weight loss.
The research, published in the journal Oxford Academic is one of the biggest paediatric IBD studies performed in the UK and includes data from five NHS sites including Oxford, Bristol, Exeter and Cardiff.
The outcomes showed that all sites had seen a sustained increase in diagnosis since 2013, with the rate of IBD in children doubling in most areas.
In 2023, SCH diagnosed 113 new paediatric patients with over 460 patients receiving ongoing care, compared to just 50 new patients and 250 with ongoing care in 2013.
Dr James Ashton, consultant paediatric gastroenterologist at SCH said: “The results are a significant wake-up call, especially as the rate of increase was similar in all areas.”
Although the study showed a sharp increase in the rate of diagnosis, it does not show why diagnosis in the disease has increased.
Dr Ashton, who is also a National Institute for Health and Care Research (NIHR) advanced fellow at University of Southampton, continued: “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.
“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 and, 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.”
IBD often peaks at certain ages, in younger patients this is between the ages of 12 to 15, young adults aged between 23 to 35 and older adults aged between 50 to 55, but most diagnoses occur in younger patients.
Imogen Knight, 14, was diagnosed with IBD at SCH in April 2023. The teenager, who lives in Basingstoke, said: “I started suffering around October 2022 and I noticed that as soon as I ate, I would have to go straight to the bathroom. 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 but 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.
She said: “I was just glad that they finally knew what it was, and I had a chance of getting better. 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 and in March 2024 she underwent surgery with a subtotal colectomy, a procedure that involves the removal of her large bowel. The procedure has left Imogen having to use a colostomy bag for the rest of her life.
She said: “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. 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.”
Approximately 1,750 children and young people are diagnosed with IBD in the UK every year, with around one in every 16 of these cases being treated at Southampton Children’s Hospital.
Dr Ashton hopes that the study will help understand the causes of the disease and to recognise the challenges healthcare providers meet, to care for these patients as well as possible and to ensure IBD services are resourced adequately.
He said: “The treatment for each patient differs greatly, in the case of Imogen we had to try a lot of medicines at great stress to her and her family, before finally the decision for surgery was made.
“We are fortunate to have an excellent research team led by Professor Mark Beattie at Southampton Children’s Hospital and Professor Sarah Ennis at the University of Southampton, which includes doctors, nurses and scientists.
“If we were more aware of the causes and the severity of each case, we could predict how a patient will react to treatment. Our ongoing research has a real focus on using genetics to understand why an individual has IBD and from this we hope to be able to tailor a personalised medicine plan. In the future we hope this will lead to all round better patient outcomes.”
Christine Spray, a consultant in paediatric gastroenterology at Bristol Royal Hospital for Children, said: “Inflammatory bowel disease is on the rise in children, and early referral to specialist units is key. The condition has a significant impact on children, their families, and even their education.
"We have been happy to support University Hospital Southampton with this important research. Hopefully, more awareness of this condition among health care professionals, and the public, will encourage more young people to talk about things they may find embarrassing, such as changes in their poo.”