Parents: What To Do When Your Child Has Ulcerative Colitis
By Rachel Meltzer Warren
When Amani Hindi's 5-year-old son began having nonstop diarrhea, the first doctor they saw told them, "It's just a virus." But Hindi felt something wasn't right. A few weeks went by, and her son's symptoms got worse as he grew pale and tired. Several doctor's visits and six emergency room trips later they landed at Lurie Children's Hospital in Chicago.
Bloodwork revealed anemia and high levels of inflammation. A colonoscopy confirmed that what her son, now 7, was experiencing, was no normal childhood virus. He had ulcerative colitis (UC), a chronic inflammatory bowel disease (IBD) that causes chronic inflammation and damage in the colon (also known as the large intestine) and the rectum.
An estimated 16,000 kids in the U.S. have ulcerative colitis. While most people with IBD are typically diagnosed in their 20s and 30s, cases diagnosed before age 21 are on the rise worldwide according to a 2022 study published in the journal Gastroenterology.
Ulcerative colitis (UC) is a chronic disease, meaning it requires ongoing treatment, and there is no cure. "Inflammatory bowel disease is caused by the immune system having an abnormal response to environmental triggers and inappropriately causing inflammation in the intestine," explains Dr. Patel. Children with a family history of inflammatory bowel disease in first-degree relatives are more likely to be diagnosed with UC, although anyone can get it.
The emotional impacts of an ongoing and unpredictable illness like UC on the whole family can be immense. Kids with IBD in general score lower on quality of life assessments compared with other kids. They miss more school than their healthy counterparts. Young people with IBD are at an increased risk for anxiety and depression. Understandably, this doesn't change as they grow from kids with IBD to adults with IBD. "We typically see that roughly a quarter of patients with IBD struggle with significant anxiety and depression," explains Michele Maddux, Ph.D., a psychologist on the IBD team at Children's Mercy Kansas City.