What To Do When Your Child Has Ulcerative Colitis
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.
Though ulcerative colitis is still relatively rare in kids, it is important that parents recognize possible symptoms. Being diagnosed in childhood often means a more extensive and aggressive disease, says Trusha Patel, M.D., a pediatric gastroenterologist at Children's Hospital of Philadelphia, but earlier diagnosis and treatment can lead to better outcomes. "We understand more and more each day about the importance of choosing the right treatment for each patient as soon as possible," says Dr. Patel.
Here's what parents need to know about ulcerative colitis in children.
What Is Ulcerative Colitis?
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.
Ulcerative Colitis Symptoms
The inflammation causes ulcers or sores to develop on the inner layer of the intestine, which can result in diarrhea, blood in stools, frequent and urgent bathroom trips, and abdominal cramping, among other symptoms. The other type of IBD, Crohn's disease, causes similar symptoms. It, however, can affect any part of the GI tract, with inflammation reaching deeper into the bowel wall.
People with UC experience periods of remission, where symptoms are not present, and periods traditionally referred to as "flares" or "flare-ups," where the symptoms are active. Both are unpredictable—flares can last anywhere from days to months at a time; remission from weeks to years. Even during a flare, though, a child with UC may not look as if anything is wrong physically, a reason why it's referred to as an "invisible illness."
Ulcerative Colitis Diagnosis
If a doctor suspects IBD, the first step will likely be to order laboratory tests of your child's blood and stool, which can help rule out the possibility that symptoms are caused by a bacteria, virus, or parasite. These tests will also identify signs of inflammation or infection, as well as anemia, which could suggest bleeding.
If the doctor rules out an infection, then they will need to take a closer look inside of your child's body. This can require a colonoscopy, a test given under general anesthesia where the doctor sends a small camera at the end of a tube through the anus into the colon. This test also allows the doctor to biopsy, or remove small pieces of tissue from inside the intestine to analyze. Other possible tests include a magnetic resonance enterography (MRE), CT scan, and pill endoscopy. Through these tests, the doctor can confirm the extent and location of damage, and make a diagnosis of Crohn's disease or UC, though it is possible for a diagnosis to change over time.
Ulcerative Colitis Treatment
Luckily, UC can be treated with options that are far better than they were just a few decades ago. "Our goal really is to get patients into a 'deep remission' so that their intestinal inflammation is completely healed, and they don't have periods of significant 'flares,'" says Dr. Patel. Reaching that point, however, can mean a lot of trial and error for young patients and their parents.
Steroids given both rectally and orally, like prednisone, are used as a short-term solution to decrease inflammation. These are typically not recommended for long-term use because of potential side effects, ranging from increased risk of infection to bone loss and mood and sleep disturbances.
A class of oral medications that contain 5-aminosalicylic acid (5-ASAs) are one approach for treatment of ulcerative colitis; these drugs work at the surface of the colon, like putting lotion on it to decrease inflammation. They're generally well tolerated, besides the challenges of getting a child to take multiple large pills each day. For many UC kids, though, these drugs are not enough.
Biologic therapies like infliximab (Remicade) and adalimumab (Humira) are other options. "In the context of IBD, biologic therapies and protein-based treatments act in the body to reduce the action of other proteins or molecules that cause inflammation," says Dr. Patel, essentially blocking inflammation from happening in the first place. "When used in the right context and in the right patient, they are incredibly effective," she adds. The downside is that these meds are given by IV infusion at a hospital or infusion center, or as a shot given at home, anywhere from once a week to once every eight weeks.
If medication isn't effective, people—even kids—with UC may need surgery to remove the colon and rectum. Some patients need a permanent ileostomy, where waste empties into an external bag that is worn on the body; others can have a procedure that creates an area inside the body for collecting waste. Around 20 percent of kids diagnosed with UC will require surgery in their childhoods, according to the Cleveland Clinic.
Ulcerative Colitis and Food
For many, diet is an integral part of their child's UC management. Some are even able to use dietary approaches, such as the specific carbohydrate diet, in lieu of medication. For others, diet is one tool in their treatment toolbox along with medication. And some find that diet has a minimal impact.
"A person's diet can alter their intestinal microbiome, or the mucous layer that protects the intestinal wall from the contents of the gut, both of which play very important roles in intestinal health," says Dr. Patel. Substances in the diet can also trigger the body's abnormal immune response, which is part of the problem in IBD, she adds.
If your child has ulcerative colitis, working with a registered dietitian nutritionist (RDN or RD) can help you determine what nutritional approach will be the right fit for your child and family. Some pediatric GI practices have a dietitian as part of their care team that you can meet with. If your doctor doesn't have any recommendations look for an RDN who specializes in IBD.
The Emotional Toll of Ulcerative Colitis
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.
Caregivers, as well, are under intense pressure and stress. Like kids with IBD, their parents are at an increased risk for anxiety and depression—levels of distress that do not dissipate over time, according to new research from the University of Pittsburgh Medical Center. "I feel like I am on edge quite often, as far as constantly asking myself, 'What if that cough is a virus? What if it turns into a flare? What about school? How do I keep him healthy and happy?'" says Paige Bergin, mom of a 12-year-old with UC in Tulsa, Oklahoma.
Adding to stress for parents is the financial strain of having a child with IBD. Procedures and treatments can still be costly even with health insurance, while diet adjustments may mean pricey foods, and missed workdays to take children to appointments are common. In particular, lower- middle-income parents of kids with IBD who aren't eligible for need-based assistance may be especially at risk, according to a 2015 study from Stanford University.
What To Do if You Think Your Child Has UC
If your child is showing symptoms of ulcerative colitis, don't panic. UC has symptoms in common with many other ailments, including those that can resolve quickly. Do, however, alert your child's pediatrician, and—if symptoms don't improve—be prepared to take your child to see a pediatric gastroenterologist. Ideally, you'll be able to find one that is well-versed in pediatric IBD and up to date on new research, like those in the ImproveCareNow network.
If your child's doctor suspects IBD, your child will have several tests and procedures ahead of them. These can be challenging in different ways, depending on your child's age and tolerance level. For tests that take place in a children's hospital, you may be able to request the assistance of a certified child life specialist (CCLS), a health care professional who is trained in how to help kids and families cope with potentially overwhelming or traumatizing situations. You can also enlist the help of a CCLS who works privately if your budget allows.
If your child's diagnosis turns out to be ulcerative colitis, still don't panic! "For the most part, kids do really, really well," says Dr. Maddux. It's normal to have feelings of worry, fear, stress, and overwhelm with any chronic disease diagnosis. But treatments have come a long way, and there are loads of resources to help your child thrive.
Dr. Patel adds, "Although IBD is a chronic condition for which they will need to follow up and get treatment throughout their lives, with the right treatment they can lead a healthy, full life and do anything they want to do."
How Parents Can Support Their Child Through UC
Use solid sources
As in any other medical condition, a search on "Dr. Google" can lead you to all sorts of well-intentioned but misguided information. The Crohn's & Colitis Foundation provides excellent evidence-based resources and offers materials written specifically for caregivers.
Find the right medical team
If you're not sure about your child's doctor, don't be afraid to seek out a second opinion. With a chronic disease, it's crucial you trust and feel comfortable with your medical team. Besides your child's pediatric gastroenterologist, a registered dietitian or nutritionist, and therapists to support the mental health of both your child and the adults in your family can be invaluable. "Parents need to advocate hard for their kids, do as much research as they can, ask as many questions as they can," says Rachel Petersen, an Oakland, California-based mom of two kids (ages 18 and 15) with UC.
Get school accommodations if needed
While not always the case, it is possible that a child's IBD diagnosis will lead to absences and other special situations at school. A 504 plan is an agreement between a family and a school that the school will provide accommodations a child needs in relation to a health condition. The goal is to ensure that a child's illness does not limit their potential.
While life will undoubtedly shift, giving your kids a sense of normalcy is key, says Dr. Maddux. "It's those small changes in routines that kids tend to feel the most deeply," she says. Small actions like keeping your regular family movie night or finding flexible ways of maintaining friendships (like shifting to a virtual sleepover instead of in-person) go a long way. "When there's a disruption in daily activities, that's when we see kids struggle the most," adds Dr. Maddux.
"There's no reason to be doing this on your own; there's a village of parents and families sharing your life experiences," says Dr. Maddux. Many parents find comfort in communicating with other IBD parents through social media like Twitter, Instagram, and Facebook, which has several private groups parents can join.
For kids, the Crohn's & Colitis Foundation runs Camp Oasis, in-person weeklong summer camps held around the country each year where kids can have fun while creating friendships with other kids with IBD. The camp has made a huge difference for countless kids, including Petersen's daughter. "It's where she met friends for the first time who 'get it,'" she says.
Research to cure IBD is closer than ever. Get involved as a family with fundraising events like the Crohn's & Colitis Foundation's Take Steps walks, advocate with local and state leaders for policies to help people with IBD, or even enroll in a research study. This can help displace some of the despair of an overwhelming diagnosis with hope for a better future.