Ulcerative colitis is an inflammatory bowel disease (IBD) in which the lining of the large intestine (colon or bowel) and rectum becomes inflamed. Inflammation usually begins in the rectum and lower (sigmoid) intestine and spreads upward to the entire colon.
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, ulcers (open sores) form, causing pus, mucus, and bleeding.
What causes ulcerative colitis?
Although many theories about what causes ulcerative colitis exist, none has been proven. The cause of ulcerative colitis is unknown, and currently there is no cure, except through surgical removal of the colon. A theory suggests that some agent, possibly a virus or an atypical bacterium, interacts with the body's immune system to trigger an inflammatory reaction in the intestinal wall.
Although much scientific evidence shows that people with ulcerative colitis 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 ulcerative colitis is caused by emotional distress.
Who is affected by ulcerative colitis?
Although children and older people sometimes develop ulcerative colitis, it most often starts between the ages 15 and 30. It affects males and females equally and appears to run in some families.
Why is ulcerative colitis a concern?
Ulcerative colitis requires long-term medical care. There may be remissions--periods when the symptoms go away--that last for months or even years. However, usually symptoms eventually return.
Only in rare cases, when complications occur, is the disease fatal. If only the rectum and lower colon are involved, the risk of cancer is not higher than normal. However, the risk of colon cancer is greater than normal in children with widespread ulcerative colitis.
Symptoms of ulcerative colitis:
The following are the most common symptoms for ulcerative colitis. However, each child may experience symptoms differently. Symptoms may include:
- 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.
How ulcerative colitis is diagnosed:
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. Checks for the presence of abnormal bacteria in the digestive tract that may cause diarrhea and other problems. A small sample of stool is collected and sent to a laboratory by your doctor's office. In two or three days, the test will show whether abnormal bacteria are present. Stool samples can also check for hidden blood in the stool.
- Esophagogastroduodenoscopy (also called EGD or upper endoscopy). A procedure that allows the doctor to examine the inside of the esophagus, stomach, and duodenum. A thin, flexible, lighted tube called an endoscope is guided into the mouth and throat, then into the esophagus, stomach, and duodenum. The endoscope allows the doctor to view the inside of this area of the body, as well as to insert instruments through a scope for the removal of a sample of tissue for biopsy (if necessary).
- Colonoscopy. A procedure that allows the doctor to view the entire length of the large intestine, and can often help identify abnormal growths, inflamed tissue, ulcers, and bleeding. It involves inserting a colonoscope, a long, flexible, lighted tube, in through the rectum up into the colon. The colonoscope allows the doctor to see the lining of the colon, remove tissue for further examination, and possibly treat some problems that are discovered.
- Biopsy. Removal of a sample of tissue (from the lining of the colon) to examine under the microscope.
- Barium enema (lower GI series). A procedure performed to examine the large intestine for abnormalities. A fluid called barium (a metallic, chemical, chalky, liquid used to coat the inside of organs so that they will show up on an X-ray) is given into the rectum as an enema. An X-ray of the abdomen shows strictures (narrowed areas), obstructions (blockages), and other problems.
Treatment for ulcerative colitis:
Specific treatment will be determined by your child's doctor based on the following:
- The child's age, overall health, and medical history
- The extent of the disease
- The child's tolerance for specific medications, procedures, or therapies
- The expectations for the course of the disease
- Your opinion or preference
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.
When treatment is necessary, it must be tailored for each case, because what may help one patient may not help another. Children are also given needed emotional and psychological support, which is offered at Children’s National. 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.
- Hospitalization. Children with ulcerative colitis occasionally have symptoms severe enough to require hospitalization to correct malnutrition and to stop diarrhea and loss of blood, fluids, and mineral salts. The patient may need a special diet, feeding through a vein, medications, or, in some cases, surgery.
- Surgery. Most children with ulcerative colitis do not need surgery. However, about 25 to 40 percent of children with ulcerative colitis 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.
What is the long-term outlook for a child with ulcerative colitis?
Ulcerative colitis is a chronic condition that may recur at various times over a lifetime. Children may experience physical, emotional, social, and family problems as a result of the disease, increasing the importance of proper management and treatment of the condition.
The following chart summarizes some of the problems children may face.
Effects on the Family
- Mood swings due to illness and medications
- Blaming self for disease
- Frustration with physical problems
- Feeling different from everyone else
- Anger: "Why me?"
- Worry about appearance, slow growth, weight loss
- Feeling vulnerable; unable to rely on body to function normally like everyone else
- Frustration at physical limitations, being unable to keep up with friends
- Coping with being teased by classmates
- Embarrassment over frequent bathroom use
- Peer pressure regarding food choices
- Handling other people's lack of knowledge about the disease
- Change in physical stamina
- Changes in ability to concentrate on schoolwork
- Understanding the needs of the child with UC, as well as the rest of the family's needs
- Need for mutual support of all family members
- Need for all family members to learn about the disease and understand its effects on the child
- Learning to cope with unexpected changes in family routine
- Trying to channel frustration when angry
- Respect for privacy
- Encouraging independence of the child with UC
The problems listed above can be very frustrating for the child with ulcerative colitis and his or her family. However, just as intestinal inflammation in ulcerative colitis can be managed with medical therapies, coping difficulties & psychological distress can be managed by a multidisciplinary approach to care.
In addition to excellent medical care of the child with ulcerative colitis, Children’s National provides the following services to ensure a comprehensive approach:
- Formal education about ulcerative colitis, including disease process, medications & nutrition
- Nutritional support provided by a registered dietitian
- Social work support for community resources & assistance with insurance as needed
- Access to mental 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 ulcerative colitis and Crohn’s disease.
If you have concerns about the way your child is coping with his or her diagnosis, please let us know – our goal is to meet the specific needs of each patient and family.