Pediatric Ulcerative Colitis
Ulcerative colitis is a chronic inflammatory bowel disease (IBD) in which the lining of the large intestine (colon or bowel) and rectum becomes inflamed. In children, inflammation usually begins in the rectum and lower (sigmoid) intestine and spreads upward to the entire colon unless effectively treated.
The inflammation causes diarrhea, or frequent emptying of the colon. As cells on the surface of the lining of the colon die and slough off, erosions (open sores) form, causing pus, mucus and bleeding. The disease affects the body’s ability to absorb fluid, which is the major role that the large intestine plays in digestion.
Ulcerative colitis (UC) is a chronic condition that may recur at various times over a lifetime and requires long-term medical care. There may be remissions – periods when the symptoms go away – that last for months or even years. However, symptoms occasionally return (these periods are called flares).
Children may experience physical, emotional, social and family problems because of the disease, increasing the importance of proper management and treatment.
The cause of ulcerative colitis (UC) is unknown, although experts agree that genetics play a major role as do some environmental factors. A theory suggests that an agent, possibly a virus or an atypical bacterium, interacts with the body's immune system to trigger an inflammatory reaction in the intestinal wall.
While much scientific evidence shows that people with UC have abnormalities of the immune system, physicians do not know whether these abnormalities are a cause or result of the disease. Physicians believe that there is little proof that UC is caused by emotional distress, however stress can make symptoms worse.
Although children and older people sometimes develop UC, it most often starts between the ages of 15 and 30. It affects males and females equally and appears to run in some families.
While each child may experience symptoms differently, the following are the most common symptoms:
- Abdominal pain
- Bloody diarrhea
- Weight loss
- Loss of appetite
- Rectal bleeding
- Loss of body fluids and nutrients
- Anemia caused by severe bleeding
Sometimes children also experience:
- Skin lesions
- Joint pain
- Inflammation of the eyes
- Liver disorders
- Kidney stones
The symptoms of ulcerative colitis may resemble other conditions or medical problems. Consult your child's doctor for a diagnosis.
A thorough physical examination, including blood tests to determine whether an anemic condition exists, or if the white blood cell count is elevated (a sign of inflammation), is part of the diagnostic process. Symptoms that suggest ulcerative colitis may also be evaluated with the following procedures:
- Stool sample. Your child’s doctor will be able to see if there are abnormal bacteria in the stool that may cause diarrhea and other problems. They will also see if there is blood in the stool.
- Upper endoscopy or EGD. This procedure allows the doctor to examine the inside of the esophagus, stomach and duodenum. A sample of tissue may be removed to be biopsied.
- Colonoscopy. This procedure allows the doctor to view the entire length of the large intestine, and can often help identify abnormal growths, inflamed tissue, ulcers and bleeding. The doctor may remove tissue for a biopsy and possibly treat some problems that are discovered.
- Biopsy. Removal of a sample of tissue to examine under the microscope.
- MR enterography. Magnetic resonance enterography (MRE, or MR enterography), a noninvasive imaging test, is used to evaluate inflammatory bowel disease. MRE is especially beneficial for children, as it allows doctors to obtain detailed images without exposing your child to unnecessary radiation.
Specific treatment will be determined by you and your child's doctor based on the following:
- Your child's age, overall health and medical history
- The extent of the disease
- Your child's tolerance for specific medications, procedures or therapies
- The expectations for the course of the disease
Treatment is tailored for each case because what may help one patient may not help another. At Children’s National, children are given emotional and psychological support. Treatment may include the following:
- Drug therapy (aminosalicylates, corticosteroids, immunomodulators). Abdominal cramps and diarrhea may be helped by medications that reduce inflammation in the colon. More serious cases may require steroid drugs, antibiotics or drugs that affect the body's immune system (biologics).
- Hospitalization. Children with UC occasionally have symptoms severe enough to require hospitalization to correct malnutrition and to stop diarrhea and loss of blood, fluids and mineral salts. Your child may need a special diet, feeding through a vein, medications, or, in some cases, surgery.
- Surgery. Most children with UC do not need surgery. However, about 25 to 40 percent of children with UC eventually require surgery for removal of the colon because of massive bleeding, chronic debilitating illness, perforation of the colon or risk of cancer. Sometimes, removing the colon is suggested when medical treatment fails, or the side effects of steroids or other drugs threaten the patient's health. There are several surgical options, and most are performed using minimally invasive surgical approaches:
- Proctocolectomy with ileostomy. The most common surgery is the proctocolectomy (removal of the entire colon and rectum) with ileostomy (creation of a small opening in the abdominal wall where the tip of the lower small intestine, the ileum, is brought to the skin's surface to allow drainage of waste).
- Ileoanal anastomosis. Sometimes, ileoanal anastomosis (pull-through operation), can be performed. The diseased portion of the colon is removed, and the outer muscles of the rectum are preserved. The ileum is attached inside the rectum, forming a pouch, or reservoir, that holds the waste. This allows the child to pass stool through the anus in a normal manner, although the bowel movements may be more frequent and more watery than usual.
While there is no special diet for ulcerative colitis, children may be able to control mild symptoms simply by avoiding foods that seem to upset their intestines. People with ulcerative colitis may want to avoid foods that increase inflammation, such as:
- Fried foods
- Soda or other sugar-sweetened drinks
- Processed meat (hot dogs, sausages)
- Refined carbohydrates like white bread and regular pasta
Emotional and Social Care for Children with Ulcerative Colitis
Children with ulcerative colitis (UC) face emotional and social difficulties and the effects of their condition will be experienced by their whole family. Families will have to get used to unexpected changes to routines to accommodate their child with UC. It is important for each family member to learn to support the child with UC while keeping the whole family’s needs in mind.
Some emotional responses your child with UC may have include:
- Mood swings due to illness and medications
- Blaming self for disease
- Frustration with physical problems
- Feeling different from others
- Anger and questioning “Why me?”
- Worry about appearance, slow growth or weight loss
- Vulnerability of not being able to rely on normal body functions
- Unable to keep up with healthier friends
Social problems may include:
- Coping if classmates tease
- Embarrassment over frequent bathroom use
- Peer pressure regarding food choices
- Handling others’ lack of understanding about their condition
- Change in physical stamina
- Change in ability to concentrate on schoolwork
In addition to caring for your child’s medical issues, Children’s National provides the following services to ensure a comprehensive approach:
- Formal education about UC, including disease process, medications and nutrition
- Nutritional support provided by a registered dietitian
- Social work support for community resources
- Assistance with insurance as needed
- Access to behavioral health services as needed
- Collaboration with your child’s school nurse to ensure continuity of care
- Evaluation and treatment with respect to the surgical indications and approaches for inflammatory bowel diseases, including UC and Crohn’s disease.
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