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Ulcerative Colitis (UC)

What is ulcerative colitis?

In ulcerative colitis (UC), the lining (mucosa) of the colon (large intestine) becomes inflamed, which means it gets swollen and red. This is a chronic, or ongoing, condition. It’s one of the illnesses considered part of inflammatory bowel disease (IBD).

Doctors don’t know the exact cause of UC. But the immune system seems to play a role. They believe the immune system reacts to something in the intestine, perhaps even to normal bacteria that live there. Then the body sends white blood cells to fight what it sees as a threat. The white blood cells cause inflammation. For some reason, the immune system doesn’t switch off again and end its defense effort. Instead, the area stays inflamed. This causes the common symptoms of UC. Over time, the ongoing inflammation can cause sores (ulcers) and damage the intestines.

This disease usually affects the entire colon. Sometimes it affects only a part of the colon. There are no healthy patches between inflamed patches, like in the similar condition Crohn disease.

Who gets UC?

Most people diagnosed with this disease get it between the ages of 15 and 30. But it can also develop in younger or older people.

UC tends to run in families. About 20% of people with UC have a close relative with some form of IBD. But the link is not completely clear.

What are the symptoms?

The most common symptoms are crampy pain in the belly and ongoing diarrhea. This happens because inflammation makes the intestine empty itself often. Sometimes the diarrhea is bloody. The symptoms range from mild to severe. It’s normal to have periods of time without any symptoms (remission), sometimes for months or years, and then to get symptoms again (recurrence).

UC can lead to other health problems (complications), which cause symptoms, too. These are the main complications that doctors watch for:

  • Dehydration, or loss of fluids, due to diarrhea.
  • Anemia, or low level of red blood cells, due to ongoing bleeding from ulcers. Anemia can cause extreme tiredness (fatigue).
  • Severe swelling (distention) of the belly.
  • Weight loss and, in children, slowed growth or delayed puberty because of trouble getting enough nutrients or because of the medicines used to treat IBD. Children with ulcerative colitis may have less appetite and eat less.
  • Toxic megacolon, in which the colon gets severely inflamed; the wall then weakens and balloons out. This can rupture, or perforate, the colon.
  • An increasing of risk of colon cancer in people who have the disease for more than a decade.

The common symptoms and some complications are much like other forms of IBD, like Crohn disease. So it’s often hard to make a diagnosis because it takes time for doctors to tell which illness a child has.

How do you diagnose UC?

The doctor will ask for a detailed history of your child’s illness and will examine your child. Several tests can help doctors diagnose this disease, so the doctor may order these:

  • Blood tests to check for anemia, which is caused by excessive bleeding, and blood tests to look for a high level of white blood cells, which is a sign of inflammation.
  • Tests on a stool (feces) sample to look for blood or signs of infection.
  • X-rays, including sets of X-rays called an upper GI (PDF 48KB) (short for gastrointestinal) series and a lower GI (PDF 44KB) series (also called a barium enema). Before having either of these X-rays, your child will drink a liquid or have a liquid put in their colon (enema) that shows up on X-ray film.
  • CT scan (short for “computed tomography scan” and sometimes said “cat scan”), another way to see inside the abdomen.

One of the best ways to tell what’s happening in your child’s intestine is for the doctor to look at it. Doctors do this by inserting a thin, flexible, lighted tube (endoscope) through your child’s anus. The tube has a camera that’s connected to a computer and a TV monitor. Using this camera, the doctor can look for inflammation, ulcers and bleeding, and can even take a tiny sample of the intestine for testing (biopsy). When doctors look at only the lower colon, this procedure is called sigmoidoscopy (pronounced sig-moid-OSS-cope-ee). When they look at the whole colon, it’s called colonoscopy (pronounced coal-un-OSS-cope-ee).

What is your experience with UC at Children's?

We have treated many children with this condition at Children’s. Many can control their disease and symptoms with medicines and careful choices about what they eat and drink. An important part of our service is to work with children and families to get good results without surgery whenever possible.

Some children do require surgery because taking medicines and watching what they eat and drink are not enough. Our surgeons are experienced at performing the operation that is most commonly used for this disease: total abdominal colectomy and ileoanal pull-through. We have performed more then 100 of these operations in the past decade.

When you come to Children’s, you have a team of people to care for your child before, during and after surgery. Along with your child’s surgeon, you are connected with nurses, dietitians, child life specialists, social workers and others. We work together to meet all of your child’s health needs and help your family through this experience.

Since 1907, Children’s has been treating children only. Our team members are trained in their fields and also in meeting the unique needs of children. For example, the doctors who give your child anesthesia are board certified in pediatric anesthesiology. This means they have extra years of training in how to take care of kids. Our child life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age. Our expertise in pediatrics truly makes a difference for our patients and families.

How do you treat UC?

The goals of treatment are to decrease inflammation in your child’s intestine and help it heal, get rid of your child’s symptoms and ensure your child is getting good nutrition. We start by using many types of medicines and nutritional support. If these are not enough or if your child develops a serious complication, surgery may be needed to remove the whole colon. Removing the colon is the only way to cure this disease.

Medicines

Your child may need these types of medicines:

  • Medicines to decrease inflammation (aminosalicylates)
  • Medicines to suppress the immune system (corticosteroids)
  • Medicines to block the immune reaction that worsens inflammation (immunomodulators or immune system suppressors)
  • Medicines to control bacteria growth (antibiotics)
  • Medicines to control diarrhea

Nutrition

If the disease is making it hard for your child to get enough nutrients, their doctor may suggest:

  • Ensuring your child eats a variety of foods from all food groups
  • Taking certain supplements to boost nutrients
  • Avoiding foods that cause symptoms to flare up (such as spicy or high-fiber foods)
  • Giving your child a special liquid formula that’s high in calories

There may be times when your child needs bowel rest. This means eating only certain foods or, in some cases, nothing at all by mouth. Resting the bowel (intestine) gives it a chance to heal. Instead of eating by mouth, your child may be fed through an IV (short for intravenous) line, which goes into a vein; through a nasogastric (NG) tube, which goes through the nose into the stomach; or through a gastrostomy, an opening made in the abdominal wall that holds a tube or button so formula can be put directly into the stomach.

Surgery

Your child may need surgery if medicines and changes in what they eat and drink don’t control symptoms well enough. Surgery may also be needed if your child develops a serious complication, such as severe bleeding. Most patients will need surgery at some point in their lives to remove the colon and reduce the risk of developing colon cancer.

There are two main types of surgery:

  • Surgery to remove the colon and the lining of the rectum, create a pouch from the end of the small intestine, and attach this pouch to the remaining rectum and the anus. This is the more common of the two surgeries. It goes by a few names: ileoanal anastomosis (pronounced ill-ee-oh-AIN-ull an-as-toe-MOE-sis), pull-through operation, or restorative proctocolectomy (pronounced prahk-toe-coal-EKT-uh-mee).

    To give the pouch a chance to heal, most pediatric surgeons usually do this operation in two steps. The first step includes the procedure mentioned above and also an ileostomy. This connects the small intestine (called the ileum) to an opening made in the skin of the belly so waste can pass to a pouch attached on the outside (called ileostomy and pronounced ill-ee-OSS-tuh-mee). This is temporary. It allows the suture lines used to reconstruct the rectum to heal without stool passing through. After the inside pouch heals (in about two months), surgeons complete the second step: closing the ileostomy and allowing waste to pass out through the anus.

  • Surgery to remove the colon and whole rectum (called proctocolectomy). If the rectum is too unhealthy to work well, surgeons take it out along with the colon. Then they create a permanent ileostomy. This operation is rarely needed.

Before surgery, the surgical team can explain details like what will happen before, during and after your child’s operation; how long it’s likely to take; how long your child may need to stay in the hospital afterward; and what kind of care your child will need at home.

Resources

Read more about what to expect when your child visits a clinic at Children's, has surgery here or needs to stay in the hospital. You can get practical details about topics like what to do and bring the day of surgery and who will be on your child's care team. You can also take a virtual tour of our surgery rooms and other parts of the hospital.

To learn more about this condition, you may want to visit our resource list.