Ulcerative Colitis

Most people diagnosed with ulcerative colitis are 10 to 40 years old. But some children younger than 5 years old get it. Up to 20% of people with ulcerative colitis or Crohn’s disease are younger than age 18.

Ulcerative colitis tends to run in families. About 1 in 5 people with ulcerative colitis has a close relative with some form of IBD. But the link is not clear.

The clinic provides access to many IBD experts. We can schedule your visit so your child sees many of them in one place on the same day. We treat your whole child by combining care from specialists in digestive health, immune health, nutrition, surgery and psychology.

Through our IBD Center, we offer advanced treatments for children with ulcerative colitis that are not offered everywhere. This includes nutrition therapies such as the Specific Carbohydrate Diet (SCD). Our surgeons have the most experience in the region doing the highly technical surgeries that some children with ulcerative colitis need.

Read about our clinical trials using SCD to treat ulcerative colitis and other forms of IBD.

• One of the early signs of remission is how much medicine is still in your child’s body after a certain amount of time. We will check your child’s medicine levels early so we can individualize the dose, and increase the likelihood of your child getting – and staying – in remission.

• We use ultrasound to monitor your child’s intestinal health. This means we can adjust your child’s care plan more frequently, and personalize their treatment in real time.
• Ultrasound is less invasive than endoscopy, and does not require advance preparation.
• Seattle Children’s is the only IBD Center in our region to use ultrasound monitoring to check patients’ response to treatment.

The IBD Center team also conducts research to understand why ulcerative colitis happens, find better treatments and improve the quality of life for children with ulcerative colitis and other forms of IBD. We’re part of ImproveCareNow, a group of more than 80 centers working together to study and refine IBD care for children.

The most common symptoms of ulcerative colitis are: 

• Cramping pain in the belly
• Ongoing diarrhea, sometimes bloody 

This happens because the inflamed intestine cannot absorb water and nutrients like it should. Inflammation also makes the intestine empty itself often.

The symptoms range from mild – mild pain, loose stools or gassy belly – to severe, where a child doubles over with pain, loses weight, passes stools more than 8 times a day and passes blood. Symptoms can vary over time. It’s normal for a child to go without symptoms for months or even years and then have symptoms reappear.

Ulcerative colitis can lead to other health problems. The main complications doctors watch for include: 

• Dehydration, or loss of fluids, due to diarrhea.
• Sores (ulcers) in the intestine, which can cause bleeding. When ulcers go all the way through the intestinal wall, it is called perforation.
• Anemia, or low level of red blood cells, due to internal bleeding from ulcers. Anemia can cause extreme tiredness.
• Severe swelling of the belly.
• Weight loss.
• Slowed growth or delayed puberty. This can be caused by the inflammation or by medicines like steroids that interfere with the function of hormones. Or the body might not get enough nutrients. Children with ulcerative colitis might have less appetite and eat less.
• Toxic megacolon, in which the large intestine (colon) gets severely inflamed. Then the colon wall weakens and balloons out. This can rupture, or perforate, the colon.
• Increased risk of colon cancer in people who have the disease for more than 10 years.

Some people with ulcerative colitis get health problems that affect other parts of their bodies. These problems include: 

• Inflamed joints (arthritis)
• Skin problems (erythema nodosum, pyoderma gangrenosum or psoriasis)
• Inflamed eyes (uveitis)
• Inflamed mouth
• Kidney stones
• Gallstones
• Problems with the liver or bile ducts
• Anxiety disorders
• Depression
• Rarely, blood clots

Doctors use these lab tests to learn more about your child: 

• Blood tests. Blood tests check for anemia, which can be a sign of heavy internal bleeding in the gut, and high levels of white blood cells and platelets, which can be signs of inflammation. Blood protein levels can tell the team if your child isn’t eating enough protein, isn’t absorbing enough protein or is losing too much protein because of inflammation. Other tests look for substances in the blood that are signs of inflammation (C-reactive protein test, sedimentation rate).
• Tests on a stool sample. The team uses these tests to look for blood or signs of infection. Certain stool tests can tell the team if your child has active inflammation.

Pictures that show the inside of your child’s belly or pelvic area can help the team learn more about your child’s condition. At Seattle Children’s, we try to use methods that use low or no radiation, such as ultrasound and MRI (magnetic resonance imaging).

Some children might need an upper GI (PDF) (gastrointestinal) series of X-rays with a small bowel follow-through or a CT (computed tomography) scan.

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 mouth or anus.

The tube has a camera that’s connected to a computer and a TV monitor. Using this camera, doctors can look for swelling, redness, ulcers and bleeding. They can even take a tiny sample (biopsy) of the intestine for testing. This can help your child’s team diagnose IBD, figure out the type of IBD and tell how much of the intestine is affected.

Your child might have one or more of these types of endoscopy (pronounced end-OSS-cope-ee): 

• Upper endoscopy. The doctor puts the endoscope through your child’s mouth to look at their stomach and the first part of their small intestine.
• Sigmoidoscopy (pronounced sig-moid-OSS-cope-ee). The doctor puts the endoscope through your child’s anus to look at only their lower colon.
• Colonoscopy (pronounced coal-un-OSS-cope-ee). The doctor puts the endoscope through your child’s anus to look at their whole colon. 

Before these procedures, we give your child medicine that makes them fall asleep (anesthesia). They will not feel any pain and will not move.

Sometimes, doctors ask children to swallow a pill-like device that carries a tiny camera (capsule endoscopy). The doctor might also place the capsule in your child’s digestive tract using an endoscope. This device takes pictures of the intestine. It passes out of your child’s body in stool. Doctors view the pictures on a computer. This lets them see parts of the intestine they cannot see using a regular endoscope.

Your child might need medicines that: 

• Reduce inflammation in the inner lining of the intestine (aminosalicylates).
• Suppress the overactive immune system (corticosteroids). We try to avoid corticosteroids or use them as little as possible because they can cause long-lasting side effects if used again and again.
• Block the immune reaction that worsens inflammation (immunomodulators, such as azathioprine).
• Block certain substances that fuel the process of inflammation (TNF-alpha blocking agents, such as infliximab or adalimumab).
• Control bacteria growth (antibiotics).

The intestine’s job is to break down food so nutrients can be absorbed into the bloodstream. Inflammation from ulcerative colitis can make it hard for your child to get enough nutrients to grow and develop. Nutritional support can help correct any shortfalls. In times when inflammation is under control, nutritional support is still important to maintain a healthy and balanced diet.

Nutritional support can mean changing what or how your child eats.

Eating changes

The IBD Center team designs a complete nutrition plan for your child so they get enough calories and eat a range of foods, including fruits and vegetables. Certain choices can help reduce symptoms. Two keys are to: 

• Limit lactose (sugar in milk) and fructose (sugar in fruit), especially fructose that is not in its natural form, as in high-fructose corn syrup
• Chew foods well, especially raw, crunchy foods 

Specific Carbohydrate Diet (SCD)

Seattle Children’s offers innovative therapies that are not offered everywhere. As a leader in nutritional therapies, Seattle Children’s Hospital Inflammatory Bowel Disease Center offers diet therapy, including the Specific Carbohydrate Diet (SCD).

This diet removes all grains, dairy (except for yogurt fermented 24 hours), processed foods, sugars and sweeteners except for honey. It promotes only natural, nutrient-rich foods, which includes vegetables, fruits, meats and nuts.

In addition to being offered both as a sole (primary) and adjunct treatment for IBD, the SCD diet is being researched for its effect on IBD and the fecal microbiome – the trillions of bacteria living in our digestive tract. Talk to your child’s doctor to see if your child may be eligible to participate in a study. Dr. David Suskind leads our research on SCD; learn more. 

There may be rare times when your child needs to rest their bowel, or intestine. This means eating either only certain foods or, in some cases, taking nothing by mouth. Resting the bowel gives it a chance to heal. Instead of eating by mouth, your child may be fed through: 

• A nasogastric (NG) tube, which goes through the nose into the stomach
• Rarely, a gastrostomy tube, which goes directly into the stomach through an opening made in the wall of the belly
• Very rarely, an IV (intravenous) line, which goes into a vein

Your child might need surgery if: 

• They have serious inflammation that doesn’t get better with medicines and nutritional support
• They have a serious complication, such as severe bleeding 

Most people with ulcerative colitis need surgery at some point to remove the colon and reduce the risk for colon cancer.

There are 2 main types of surgery for ulcerative colitis. Both are surgeries to remove the colon. The most common surgery goes by many names: 

• J-pouch surgery
• Ileoanal anastomosis (pronounced ill-ee-oh-AIN-ull an-as-toe-MOE-sis)
• Pull-through operation
• Restorative proctocolectomy (pronounced prahk-toe-coal-EKT-uh-mee) 

J-pouch surgery

In this operation, surgeons remove the entire colon and the lining of the rectum. Then they create a pouch inside the body from the end of the small intestine (ileum) to the anus.

To give the pouch a chance to heal and function as the new “bowel” for the child, surgeons usually do this operation in two steps: 

• Remove the colon and lining of the rectum, create the pouch and attach it to the anus.
• Connect the small intestine to an outside opening made in the skin of the belly so waste can pass to a bag attached on the outside. This is called ileostomy (pronounced ill-ee-OSS-tuh-mee). 

Ileostomy is temporary. It allows the rectum to heal without stool passing through. In about 2 months, after the inside pouch heals, surgeons remove the outside bag and close the ileostomy. This allows waste to pass out through the anus.

Colectomy (or proctocolectomy)

The second type of surgery for ulcerative colitis is called proctocolectomy (or sometimes just colectomy). This operation is rarely, if ever, needed. Surgeons remove the entire colon. If the rectum is too unhealthy to work well, surgeons take it out along with the colon. Then they create a permanent ileostomy.

Care for your child before and after surgery

Before either surgery, your child’s surgical team will explain the details, including: 

• 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
• What kind of care your child will need at home after surgery 

Some children who have pouch surgery have complications afterward. The IBD Center team provides care and support for these conditions, which include urgent need to use the bathroom, bleeding, inflammation of the pouch and problems emptying stool from the pouch. Treatment options offered through the IBD Center include dietary therapies, antibiotics, probiotics, medicines that reduce inflammation, treatments done with an endoscope and surgery.