Snack-intolerant: IBD in children poses unique challenges

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Snack-intolerant: IBD in children poses unique challenges

Published: 10 Jul. 2025, 14:07 Updated: 10 Jul. 2025, 14:41

Audio report: written by reporters, read by AI

Professor Shim Jung-ok of Seoul National University Hospital [JOONGANG ILBO]

When children with inflammatory bowel disease (IBD) reach adolescence, their fight against the chronic condition often intensifies — not just physically, but emotionally, as they grapple with growth delays, dietary restrictions and a sense of isolation that can lead to depression.

"Children who follow their treatment well and carefully avoid certain foods sometimes rebel during puberty — skipping their medication, eating spicy instant noodles and ending up with bloody stools. It’s heartbreaking," said Shim Jung-ok, a professor of pediatrics at Seoul National University Hospital, in an interview with the JoongAng Ilbo.

Shim was describing the challenges faced by pediatric patients with IBD, which includes Crohn’s disease and ulcerative colitis. These conditions cause chronic inflammation in the digestive tract, have no clear cause and are difficult to treat. Experts suspect environmental factors, such as the consumption of processed foods, may contribute.

Over the past decade, the number of children with IBD has nearly doubled in Korea. According to the Health Insurance Review and Assessment Service, the number of pediatric IBD patients rose from 4,149 in 2015 to 7,106 in 2024.

In addition to bloody stools, symptoms include diarrhea, abdominal pain and appetite loss, as well as fatigue, anemia and arthritis. These complications can disrupt daily life — students may need to suddenly leave class, skip exams or miss trips. Poor nutrient absorption can also slow growth, leaving children smaller than their peers. Having to avoid snacks like chips, instant noodles and ice cream can be another source of stress.

“IBD is a devastating disease for children because it stunts growth and drastically lowers their quality of life,” said Shim. “Many young patients suffer from emotional distress. Once they reach adolescence, they often ask, ‘Why am I the only one with this disease?’ — and become depressed.”

Shim leads the Care-Kids cohort study, a long-term research project that seeks to offer hope to children with IBD. Launched in 2022, the study involves physicians from 20 hospitals nationwide and tracks patients’ clinical data — including blood samples, stool and endoscopic tissue — over 10 years. With 1,041 patients enrolled and 5,937 vials of biological samples collected, Care-Kids is now the largest pediatric IBD cohort in Asia.

The project began with a 300 billion won ($218.6 million) donation from the family of the late Samsung Chairman Lee Kun-hee, earmarked for pediatric cancer and rare disease research.

“Roughly 800 new cases of pediatric IBD are diagnosed annually, and because the disease is rare and patients vary in age, it’s impossible for a single hospital to create nationally representative data,” said Shim. “The donation allowed us to build a large-scale, nationwide study covering about 70 percent of all pediatric cases.”

[HEALTH INSURANCE REVIEW & ASSESSMENT SERVICE]

In just three years, the study has yielded significant findings. Fifty percent of Korean pediatric Crohn’s patients were found to already have anal fistulas or abscesses at diagnosis — two to three times higher than the 8 to 15 percent rate in Western countries. Based on this, researchers found that using biologic therapies instead of steroids improves treatment outcomes and reduces the need for intestinal surgery.

The study also found that 51 percent of Korean children diagnosed with ulcerative colitis already had inflammation throughout the colon, indicating a severe form of the disease from the outset.

Additionally, researchers identified unique characteristics in the gut microbiomes of Korean children before and after treatment, raising the possibility of developing new biomarkers.

Instead of repeatedly relying on invasive colonoscopies, researchers are working to predict disease activity by analyzing the gut microbiome in stool samples.

“Children have difficulty undergoing frequent endoscopies,” said Shim. “Our goal is to develop noninvasive biomarkers that can predict relapses and monitor treatment response based on bacterial composition in the stool.”

Beyond research, Care-Kids helps ensure that children across Korea receive standardized care, regardless of hospital size.

“There are fewer than 50 pediatric IBD specialists nationwide,” Shim said. “Thanks to the donation, even small hospitals with limited staff can now participate.

“I want to be there for the children and help them grow into healthy adults,” she added.

Translated from the JoongAng Ilbo using generative AI and edited by Korea JoongAng Daily staff.
BY RHEE ESTHER [[email protected]]