Ulcerative colitis—a condition that causes swelling and sores in the colon—is awful for anyone, but it's especially difficult for children, whose symptoms tend to be worse. With proper treatment, however, children with ulcerative colitis can live happy, healthy lives. A better understanding of this chronic disease will lead to even better therapies.

“Ulcerative colitis is much more severe and aggressive in kids compared to adults,” says Dinesh Pashankar, MD, director of Yale Medicine’s Pediatric Inflammatory Bowel Disease (IBD) Program. “It often involves more of the colon, and the younger the child—particularly in those under age 10—the more serious the condition can be.”

Yale Medicine’s IBD team includes doctors, surgeons, nurses, a social worker, and a dietitian, all skilled at treating children with IBD. Yale School of Medicine is one of only six genetic research centers supported by the National Institute of Diabetes, Digestive, and Kidney Diseases (NIDDK) as it seeks to advance the discovery of genes influencing an individual’s risk for developing ulcerative colitis and Crohn’s disease.

Ulcerative colitis is a chronic inflammatory condition that affects the colon (large intestine) and causes symptoms including abdominal pain, diarrhea, and blood in the stool. It is one of two major types of IBD, the other of which is Crohn’s disease.

The colon’s primary job is to absorb excess water and salt from waste material (what’s left after the body has digested food). Bacteria in the colon breaks down the remaining material, which then moves on to the rectum.

Inflammation from ulcerative colitis usually starts in the rectum and lower colon, but it can occur anywhere in the colon. Any inflammation hinders the colon’s primary functions, including absorption of water. That can lead to persistent diarrhea.

An estimated 80,000 children in the United States suffer from IBD, about half of whom have ulcerative colitis, says Dr. Pashankar.

“It is most commonly diagnosed between the ages of 13 and 20, but we do see it in younger patients, too,” he says, adding that girls and boys are equally affected.

There are several types of ulcerative colitis, based on where the colon is inflamed:

• Ulcerative proctitis. This is inflammation limited to the rectum, and tends to be a milder form of the disease.
• Pancolitis. The entire colon is inflamed.
• Distalcolitis. The left side of the colon is inflamed.

When the colon becomes inflamed and ulcers form, it can no longer absorb water from the waste material passing through. As a result, stool remains loose, causing diarrhea. In addition, ulcers in the intestinal lining can cause: 

• Bloody stool (from bleeding in the intestinal lining)
• Urgency to have a bowel movement
• Cramping
• Abdominal pain (typically stronger on the left side, but can be anywhere in abdomen)

These symptoms can then lead to:

• Low blood cell count (anemia)
• Fatigue
• Loss of appetite
• Weight loss

In children, loss of appetite and weight loss can lead to growth problems. However, ulcerative colitis is less likely to cause growth issues than is Crohn’s disease, Dr. Pashankar says.

Since ulcerative colitis is a chronic disease, children might have periods when it flares up and symptoms appear or increase in severity. A flare might be followed by a remission, during which there are no symptoms at all. This can last months, or even years, but symptoms typically return at some point.

In addition to symptoms in the gastrointestinal (GI) tract, other parts of the body can be affected by ulcerative colitis because it is thought to be an autoimmune disease. Symptoms include:

• Redness, pain and itchiness in the eyes
• Mouth sores
• Swelling and pain in joints
• Osteoporosis
• Kidney stones

The exact causes of ulcerative colitis are not understood, but it is thought to be an autoimmune disease. This means the body’s immune system mistakenly attacks harmless bacteria in the colon, thereby inflaming healthy tissue.

Why this happens is unclear, but medical experts suspect a combination of genetics and environmental factors are at play. The disease can occur in all ethnic groups, but whites and people of Eastern European (Ashkenazi) Jewish descent are at highest risk. Oher risk factors include:

• Family history: Having a family member with ulcerative colitis increases the risk of developing the condition.
• Environment: Ulcerative colitis is more common in urban, industrialized areas than it is in undeveloped countries. This suggests that a high-fat and refined-food diet may play a role. It is also more common in northern climates.
• Nonsteroidal anti-inflammatory medications: Medications including ibuprofen (Advil, Motrin IB, others), naproxen sodium (Aleve, Anaprox), diclofenac sodium (Voltaren, Solaraze) and others don’t cause ulcerative colitis, but they can inflame the bowel and worsen symptoms. 

There is no single test to diagnose ulcerative colitis, so your child’s doctor will first rule out other likely causes of symptoms. In addition to a standard physical exam and discussion of symptoms and family history, a combination of tests and procedures will be used to confirm a diagnosis. Those may include laboratory tests of blood (to detect inflammation and antibodies) and stool (to look for blood or rule out infection).

Other procedures include:

• Colonoscopy:Thedoctor uses a small camera mounted to the end of a lighted tube to examine the interior of the colon. This is done when your child is asleep under general anesthesia.
• Sigmoidoscopy: This is similar to a colonoscopy, but the physician only examines the rectum and the lower (sigmoid) colon.
• Capsule endoscopy: The patient swallows a capsule that has a camera in it. The capsule travels through the small intestine, taking pictures that are transmitted to a receiver belt. The camera is expelled through a bowel movement and does not need to be retrieved.
• Imaging: The patient drinks a contrast dye and has an X-ray, Computed Tomography (CT) Enterography (imaging of the small intestine), or Magnetic Resonance Imaging (MRI) Enterography.

There are many treatments available that can control inflammation, relieve symptoms and rectify nutritional deficiencies. Options include medications, nutritional supplements, surgery—or a combination of all or some methods. 

In many cases, ulcerative colitis can be managed by medications. But when symptoms are no longer properly controlled or complications arise, your child’s doctor may recommend surgery.

Our highly trained and experienced physicians in Yale Medicine’s Pediatric Inflammatory Bowel Disease Surgery Program are intent on restoring function of your child’s digestive tract through bowel-conserving surgery. When appropriate, we use minimally invasive procedures.

“Compared to Crohn’s disease, ulcerative colitis in children can be more aggressive and children are more likely to need surgery,” Dr. Pashankar says.

Here are treatment options:

Medications: Your child’s doctor will help you decide which treatment best fits your child’s needs. Options include:

• Aminosalicylates, medicines that contain 5-aminosalicylic acid (5-ASA), reduce inflammation in the intestinal lining. 
• Steroids and immunosuppressants can slow the disease’s progression, allowing the intestinal tissues to heal and decreasing flare-ups of symptoms.
• Immunomodulatory treatment, which helps reduce inflammation by controlling and weakening the immune system, can be helpful in combination with a biologic, an immunosuppressive medication that blocks proteins that contribute to inflammation.
• Biologic medications to block the body’s inflammation response can be given by infusion therapy—when medication is delivered directly into the body through a blood vessel, a muscle or the spinal cord. For example, a medication called infliximab binds to and prevents the activity of a specific protein produced by the body that is known to create inflammation.

“Biologic medications are given by IV. Kids can sit for two hours and do homework or watch TV. It’s a very child-friendly setting,” says Dr. Pashankar. Typically, these medicines are given every few weeks at the start of treatment, and then every six to eight weeks after that.

Nutrition: Specific foods do not cause ulcerative colitis, but there may be times when a modified diet helps, especially during a flare. Symptoms like diarrhea affect the ability to absorb key proteins, minerals, water, vitamins, fats, and carbohydrates. If your child’s growth has been slowed by the disease, your doctor may recommend high-calorie drinks as supplement. A small number of children may need to be fed intravenously through a small tube inserted into a vein in their arm. Most of the children who require this treatment only need it for a short time, to allow their intestines to rest or if the intestines cannot absorb nutrients from food properly.

Surgery: Your child’s doctor may recommend surgery if medications and nutritional therapies are not controlling symptoms or your child has severe bleeding or a ruptured colon. The surgeon may perform a proctolectomy, in which the entire rectum and colon are removed. Surgeons offer various additional procedures so that waste can still be removed from the body. Ulcerative colitis is considered cured once the colon is removed, but since it is believed to be an autoimmune disease, other symptoms such as joint pain or skin conditions may still occur.

Innovative treatments have made life better for children with IBD, Dr. Pashankar says. “With newer medications, we send very few children to surgery and they enjoy longer remission rates,” he says, adding that the toll of handling symptoms can be especially taxing for children. “It’s hard enough to be a healthy kid, on top of these unpleasant symptoms and tests. But we work hard to put children at ease.” 

Our Pediatric Inflammatory Bowel Disease Program team is focused on meeting the complex needs of children with ulcerative colitis. Our IBD specialists, surgeons, and other medical providers are trained specifically in treating children with these diseases. It’s a joint program with the nationally-ranked Yale New Haven Children’s Hospital, where the team meets every week to discuss individual patients. “We are proud that our remission rates in patients are higher than the national average,” Dr. Pashankar says. 

We provide lots of practical, emotional, and physical support for families coping with this challenging condition. Our nurse coordinator works closely with you throughout your child’s treatment. Our nutritionist discusses appropriate food and diet choices, while a social worker works with your child and family members to cope with any stress or psychosocial issues that may arise at school or work.

We have a smooth transition plan for patients who are 21 and are ready to move into our IBD Program for adults. 

Furthermore, we participate in a robust, national quality-improvement project with the goal of improving treatment for children with IBD. Yale Medicine patients also have access to clinical trials not widely available at all treatment centers.