Ulcerative Colitis in Children

What is ulcerative colitis in children?

Ulcerative colitis is an inflammatory bowel disease (IBD). In this condition, the inner lining of your child’s large intestine (colon or bowel) and rectum gets inflamed. This inflammation often starts in the rectum and lower (sigmoid) intestine. Then it may spread to the whole colon.

This causes diarrhea or frequent emptying of the colon. As cells on the surface of the lining of the colon die and fall off, open sores (ulcers) form. This causes pus, mucus, and bleeding.

What causes ulcerative colitis in a child?

Healthcare providers don't know what causes this condition. It may be triggered by a virus or bacteria. This interacts with your child’s immune system and causes an inflammatory reaction in the intestinal wall.

Children with ulcerative colitis often have problems with their immune system. It's not clear if these issues are a cause or a result of the disease.

There’s no known cure for this condition. But there are medical treatments and surgery if needed.

Which children are at risk for ulcerative colitis?

People between the ages of 15 and 30 are at greatest risk of developing this condition. This issue can also start in children and older adults. It also seems to run in some families.

What are the symptoms of ulcerative colitis in a child?

Symptoms can happen a bit differently in each child. They can include:

Stomach pain
Bloody diarrhea
Fatigue
Weight loss
Loss of appetite
Rectal bleeding
Loss of body fluids and nutrients
Anemia caused by severe bleeding

Some children also have the following symptoms:

Skin sores (lesions)
Joint pain
Inflammation of the eyes
Liver problems
Osteoporosis
Rashes
Kidney stones

Many of these symptoms may be caused by other health problems. Make sure your child sees their healthcare provider for a diagnosis.

How is ulcerative colitis diagnosed in a child?

Your child's healthcare provider will ask about your child's health history. They will also give your child an exam.

Your child will have blood tests. These tests can tell if your child has anemia. They can also tell if your child has a high white blood cell count. This can be a sign of inflammation or infection. Your child’ may also have other tests.

Stool sample

This test checks for infection or inflammation in your child’s digestive tract. A small sample of stool is collected from your child and sent to a lab.

Upper endoscopy

In this test, a small, flexible tube (endoscope) is used to look at the inside of your child’s upper digestive tract. This tube has a light and a camera lens at the end of it. During the test, the healthcare provider may take tissue samples from your child's digestive tract. The provider will test these samples.

Colonoscopy

This test lets the provider look at the length of your child’s colon (the large intestine). This can spot abnormal growths, inflamed tissue, ulcers, and bleeding. In this test, the provider puts a special tool (colonoscope) in through the rectum up into the colon. This tool is a long, flexible, and lighted tube. During the test, the provider may take out tissue to look at it more closely. They may also treat some problems.

Biopsy

The provider may take tissue samples to be checked under a microscope. These samples may be taken from the lining of the colon during a colonoscopy. Or they may be taken from the end of the small intestine during an upper endoscopy.

Barium enema (lower GI series)

This test looks at the large intestine. Your child will get barium in their rectum as an enema. This is a metallic liquid that coats the inside of their organs. This helps them show up on an X-ray better. Your child’s healthcare provider will take X-rays of their belly. This can show narrowed areas (strictures), blockages (obstructions), and other issues.

How is ulcerative colitis treated in a child?

Treatment will depend on your child’s symptoms, age, and general health. It will also depend on the specific cause and how severe the condition is.

Diet

No specific diet causes or cures this condition. If certain foods upset your child’s stomach, staying away from those foods may help ease your child’s symptoms. A healthy diet is always advised.

Medicine

Your child’s healthcare provider may prescribe medicines that reduce colon inflammation. These can include aminosalicylates, corticosteroids, and immunomodulators. Some medicines are given into the rectum as a suppository or enema. If your child’s condition is severe, they may also need steroids, antibiotics, or medicines that affect the body's immune system. These are called biologics and small molecules.

Hospital stay

If your child’s symptoms are severe, they may need to stay in the hospital for monitoring and treatment. This can help make sure your child is getting the nutrition and fluids they need. Treatment will be given to help stop diarrhea and the loss of blood, fluids, and minerals. Your child may need a special diet, feeding, and fluids or medicines through a vein. Some children may also need surgery.

Surgery

About 10% to 20% of children with this condition eventually need surgery. This is done because of heavy bleeding, tear (perforation) of the colon, cancer risk, or severe illness. In surgery, your child’s colon is removed. This may also be done if other treatments don’t work. Or if your child has side effects.

Your child may have 1 of the following surgeries:

Proctocolectomy with ileostomy. This is the most common surgery. In a proctocolectomy, the whole colon and rectum are taken out. In an ileostomy, your child’s surgeon makes a small opening of the abdominal wall. The tip of the lower small intestine (ileum) is brought to the surface of your child’s skin. This allows waste to drain out into a bag.
Ileoanal anastomosis. In this surgery, just the affected part of your child’s colon is taken out. The outer muscles of the rectum aren’t removed. Your child’s surgeon attaches the ileum to the inside of the rectum. This forms a pouch to hold the waste. This allows your child to pass stool through their anus in a normal way. But your child’s bowel movements may happen more often and be more watery than normal. This is sometimes done in 2 or 3 surgeries.

What are possible complications of ulcerative colitis in a child?

In rare cases, this condition can cause death. If your child’s condition affects more than just their rectum and lower colon, your child has a higher risk for colon cancer. They're also at risk for a tear (perforation) of the bowel wall. This needs surgery. Your child may also have severe bleeding at times.

How can I help my child live with ulcerative colitis?

Children with this condition need long-term care. Your child may have times when symptoms go away (remission). This can sometimes last for months or years. But symptoms often come back. Medicines are often needed for the long term.

Your child should learn what foods trigger their symptoms and stay away from these foods. You and your child’s healthcare provider should make sure your child gets enough nutrients to grow and develop well. Support groups can help you and your child. Work with the provider to create a care plan for your child.

When should I call my child's healthcare provider?

If your child has any symptoms of ulcerative colitis, call their provider.

If your child is being treated for ulcerative colitis and has new symptoms, call their provider. You should also call if you’re worried about your child’s growth.

Key points about ulcerative colitis in children

Ulcerative colitis is an inflammatory bowel disease. In this condition, the inner lining of your child’s large intestine and rectum gets inflamed.
This inflammation causes diarrhea or frequent emptying of the colon. Your child may also have stomach pain and diarrhea.
Treatment may include staying away from foods that cause symptoms, taking medicine, and having surgery.
Children with this condition need long-term care. Your child may have times when symptoms go away. But symptoms usually come back.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

Know the reason for the visit and what you want to happen.
Before your visit, write down questions you want answered.
At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are and when they should be reported.
Ask if your child’s condition can be treated in other ways.
Know why a test or procedure is advised and what the results could mean.
Know what to expect if your child does not take the medicine or have the test or procedure.
If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.