Ulcerative colitis is a type of inflammatory bowel disease (IBD). It causes inflammation in the colon, also called the large intestine. The inflammation can cause swelling and bleeding, as well as frequent bouts of diarrhea. About 40,000 children in the United States live with ulcerative colitis. For anyone, especially a child, these symptoms can be difficult to experience.
Ulcerative colitis is a chronic condition. There’s no cure unless your child has surgery to remove all of their colon.
However, your doctor can help you and your child manage the condition in many ways. Treatments for children are often slightly different from treatments for adults.
Ulcerative colitis usually affects adults, but it can occur in children, too.
Children with ulcerative colitis can have a variety of symptoms related to inflammation. These symptoms may range from moderate to severe.
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.
Symptoms may include:
- anemia due to blood loss
- diarrhea, which may be bloody or have mucus
- lack of appetite
- stomach pain
- malnutrition, because the colon doesn’t absorb nutrients as well
- rectal bleeding
- unexplained weight loss
Sometimes, a child’s ulcerative colitis may be so severe that it causes other symptoms that don’t seem to be related to the gastrointestinal tract. Examples include:
- brittle bones
- eye inflammation
- joint pain
- kidney stones
- liver disorders
- skin lesions
These symptoms can make ulcerative colitis difficult to diagnose. The symptoms may seem like they’re due to a different underlying condition.
On top of that, children may have a hard time explaining their symptoms. Adolescents may feel too embarrassed to discuss their symptoms.
Doctors don’t know exactly what causes ulcerative colitis. Researchers think that in some cases, a virus or bacteria may cause an inflammatory reaction in the colon. Research has also been examining whether a lack of beneficial gut bacteria could be a contributing cause.
Some risk factors for the condition have been identified. One of the main risk factors for ulcerative colitis is having a family member with the disease.
There’s no one test used to diagnose a child with ulcerative colitis. However, your doctor can do many different tests to rule out other conditions that have symptoms similar to ulcerative colitis.
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 include:
- blood tests, including checking for low red blood cell levels, which could indicate anemia, and high white blood cell levels, which is a sign of an immune system issue
- 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
Treatment for ulcerative colitis can depend on how severe your child’s symptoms are, and how well their disease responds to treatment. Ulcerative colitis in adults is sometimes treated with a special kind of enema that has medication.
However, children often can’t tolerate receiving the enema. If they can take medications, some treatments include:
- aminosalicylates, to reduce inflammation in the colon
- corticosteroids, to keep the immune system from attacking the colon
- immunomodulators or TNF-alpha blocking agents, to reduce inflammation reactions in the body
If your child’s symptoms don’t respond to these treatments and get worse, your doctor may recommend surgery to remove the affected part of their 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.
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.
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.
According to older research from 2004, a child with IBD may be more likely to experience the following problems:
- embarrassment about their condition
- challenges relating to identity, body image, and self-esteem
- behavioral problems
- difficulty developing coping strategies
- delays in starting puberty
- absence from school, which may impact learning
The Crohn’s and Colitis Foundation offers support and advice for families in which a child has IBD.
There are many ways children and their parents can work to cope with ulcerative colitis and live healthy and happy lives.
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.
While the only way to fully prevent a UC 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 activity if they can.
- Help your child manage stress with techniques like meditation, yoga, and mindfulness.
- Make sure they take medications as prescribed, and to 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 medications including vitamins.
Check in with your child’s doctor before changing their diet or adding any new medications or supplements.
How to talk to 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 ways to help them cope with symptoms and to 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. This can be especially true for psychological symptoms like anxiety and depression.
- Make sure children know that 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.
Children can be especially challenging to diagnose. Reach out to your child’s doctor if you notice continued abdominal pain, diarrhea, unexplained weight loss, unexplained rashes, or notice any blood in their stool.
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.