Research suggests that up to 20% of people with ulcerative colitis are children. Ulcerative colitis in kids is linked with more severe symptoms and disease progression, but treatments can help maintain remission.

Ulcerative colitis is a type of inflammatory bowel disease (IBD) that causes inflammation in the colon, also called the large intestine. It’s estimated that over 1.2 million people in the United States have ulcerative colitis.

Although a diagnosis is most common between ages 15 and 30, experts estimate that up to 2 in 10 people with ulcerative colitis are children.

For anyone, especially a child, this chronic condition can be difficult to live with. However, some treatments could help a child manage ulcerative colitis.

Keep reading to learn more about the causes, symptoms, treatments, and management tips for ulcerative colitis in kids.

Ulcerative colitis may cause a variety of symptoms, which may range from moderate to severe.

The most common symptoms of ulcerative colitis include:

  • diarrhea, which may be bloody or have mucus
  • abdominal pain
  • increased frequency and urge to pass a bowel movement

Other symptoms of ulcerative colitis may include lack of appetite, fatigue, and unexplained weight loss.

Children with ulcerative colitis often go through peaks and valleys of the disease. They may not have symptoms for some time, then they may experience a flare-up of more serious symptoms.

According to Crohn’s and Colitis UK, a child may also experience symptoms unrelated to the gastrointestinal tract. Examples include:

  • joint pain or swelling
  • hair loss
  • mouth problems, such as ulcers, sore gums, and cracks
  • skin rashes
  • eye inflammation, irritation, or redness
  • stunted growth or delayed puberty

These symptoms can make ulcerative colitis difficult to diagnose because they may seem like they’re due to another underlying condition. Children may also have a hard time explaining their symptoms or feel too embarrassed.

Learn more about the symptoms of ulcerative colitis.

Doctors don’t know exactly what causes ulcerative colitis.

However, the United Kingdom’s National Health Service (NHS) suggests it may be due to an autoimmune reaction. This means the immune system mistakenly attacks healthy tissue in your colon, leading to inflammation.

Experts have also identified other factors that may contribute to the condition, including:

  • genetics
  • weakened epithelial barrier
  • an altered gut microbiome

There’s no one test used to provide a diagnosis of ulcerative colitis in a child, but a doctor may use several tests to rule out other conditions that have symptoms similar to ulcerative colitis.

According to Crohn’s and Colitis UK, a general practitioner will most likely refer your child to see a pediatric gastroenterologist, a doctor who specializes in gut conditions in children.

They’ll begin by doing a physical exam and taking a health history of your child’s symptoms. They‘ll ask what makes the symptoms worse and better, and how long they’ve been taking place.

Further tests for ulcerative colitis may include:

  • blood tests, including a red blood cell count and white blood cell count
  • a stool sample to test for the presence of blood, unexpected bacteria, and parasites
  • an upper or lower endoscopy, also known as a colonoscopy, to view or sample the inner portions of the digestive tract to check for signs of inflammation
  • a barium enema, which helps your doctor better view the colon in X-rays and identify possible areas of narrowing or obstruction
  • a tissue biopsy of the lining of their gut

Treatment for ulcerative colitis will depend on the severity of your child’s symptoms and how they respond to other treatments. The aim is to reduce inflammation and prevent flare-ups.

If your child’s symptoms don’t respond to these treatments and worsen, the doctor may recommend surgery to remove the affected part of the colon. Surgeries may include:

  • proctocolectomy with ileostomy which removes the colon, rectum, and anus and creates an opening in the belly to pass food waste
  • ileoanal anastomosis which connects the small intestine to the anus to allow for waste to be removed normally after the large intestine is removed

Your child can live without all or part of their colon, although removal can affect their digestion. Removing part of the colon does not cure the disease. Ulcerative colitis may reappear in the part of the colon left after surgery.

In some circumstances, your doctor may recommend removing all of your child’s colon. A portion of their small intestine will be rerouted through the abdominal wall so stool can exit.

In some cases, children with ulcerative colitis will need to be admitted to a hospital. In fact, research suggests that children are more likely to require hospitalization than adults for an ulcerative colitis flare-up.

Ulcerative colitis that begins in childhood is also more likely to affect a large portion of the colon. How much of the colon is affected is linked to how serious the disease is.

Some complications of ulcerative colitis in children may include:

  • chronic fatigue
  • liver disorders
  • hemorrhoids
  • rectal abscess, which is a buildup of pus
  • fistulas, which are tunnels that form between the colon and another organ

Having a condition that causes chronic upset stomach and diarrhea can be difficult for a child to understand and experience. In addition to physical effects, children can have anxiety and social problems related to their condition.

A 2023 study also found that children with IBD may be more likely to experience several psychological problems and mental health conditions, including:

  • anxiety
  • depression
  • challenges relating to identity, body image, and self-esteem
  • absence from school, which may affect learning
  • eating disorders
  • sleeping difficulties

When a child has IBD, it can also affect family relationships, and parents may worry about how best to support their child.

There are many ways children and their parents can work to cope with ulcerative colitis. The Crohn’s and Colitis Foundation offers support and advice for families in which a child has IBD.

Here are a few starting points:

  • Educate loved ones, teachers, and close friends about the disease, nutritional needs, and medications.
  • Seek the advice of a registered dietitian for meal planning to make sure your child is getting enough nutrients.
  • Find support groups for people with inflammatory bowel disorders.
  • Talk with a counselor as needed.

Managing flare-ups

While the only way to fully prevent an ulcerative colitis flare is surgery, there are ways to help prevent them:

  • Help your child keep a food log to track which foods may cause a flare-up.
  • Ask your child’s doctor if they should change their fiber intake, or have other food recommendations.
  • Make sure they are getting regular physical activity if they can.
  • Help your child manage stress with techniques like meditation, yoga, and mindfulness.
  • Make sure they take their medications as prescribed and tell you when they haven’t. Children can be afraid to tell you or their doctor, but let them know it’s essential to know.
  • Make sure their doctor has a list of all of their medications, including vitamins.

Check in with your child’s doctor before changing their diet or adding any new medications or supplements.

How to talk with your child about ulcerative colitis

It’s important to help your child feel comfortable to share changes in symptoms, or when they’ve missed a medication dose. Here are some tips to help them cope with symptoms and feel confident about opening up to you:

  • Ask them for updates on how they feel, both mentally and physically.
  • Use language they can understand. Medical terminology can be scary and confusing, so be sure to explain things at their level.
  • Don’t diminish the severity of their symptoms. Make sure they feel like they can keep you informed of any changes in how they’re feeling, especially for psychological symptoms like anxiety and depression.
  • Make sure they know their condition isn’t their fault and that they aren’t alone. Online support groups, forums, and even specialized summer camps can be a good way to share other children’s stories.
  • Be an advocate for your child with all medical professionals to let them know that you have their back.
  • Remember to take care of yourself as a caregiver. It’s easy to let your own needs slide when caring for others.

Reach out to your child’s doctor if you notice continued symptoms of ulcerative colitis, such as diarrhea, abdominal pain, unexplained weight loss or rashes, and mouth sores.

Early detection is key to preventing complications, so keep an open dialogue with your child about symptoms and speak with their doctor to rule out other conditions.

Ulcerative colitis is a type of IBD that causes inflammation in the colon. Although it usually affects adults, it can also impact children. In fact, children may experience more severe symptoms and disease progression.

If your child experiences frequent IBD symptoms, speak with a doctor. They could examine their symptoms to provide a proper diagnosis and develop a treatment plan.

Remember, it’s important to maintain a healthy communication line with your child. This could help them feel more comfortable discussing changes in their symptoms with you.