What is ulcerative colitis?Ulcerative colitis (UC) is a chronic inflammatory bowel disease (IBD) that affects the lining of the colon (large intestine) and rectum, causing inflammation and ulcers within the lining of the bowel. This inflammation can cause pain, bleeding and can cause the bowel to empty often with diarrhea. The cause of UC is unknown but it is believed to be a combination of genetics, an altered immune response, and the environment. UC affects both males and females equally and it can occur in multiple family members. Most are diagnosed in their 20s and 30s but up to 5 percent of cases are diagnosed in children prior to age 10, and 20 percent are diagnosed with UC prior to age 20. UC is associated with an increased long-term risk of colon cancer.
Pediatric ulcerative colitis can be a chronic condition. This means that your child may have to manage their disease throughout their life. Some children have long periods of remission, sometimes years, when they experience few or no symptoms of the disease. However, the disease will usually come back at different times during your child’s life.
Ulcerative colitis usually affects the entire colon beginning with the rectum. On occasion UC affects only the very end of the colon. Unlike Crohn’s disease, another form of IBD, there are no intervening areas of normal intestinal lining between areas of UC. Knowing where the inflammation is along the large intestine helps your child’s doctor to decide the extent of disease and the types of treatments that may be beneficial.
The most common symptom of ulcerative colitis is bloody diarrhea. Other symptoms include: abdominal pain, anemia, urgent/uncontrollable bowel movements, poor appetite/loss of appetite, weight loss, poor growth and fatigue. The symptoms of ulcerative colitis often come and go, leading to periods of remission in between flares of the disease. Nutritional deficiencies or lack of age-appropriate amounts of proteins, calories and vitamins can often be a serious problem in children with ulcerative colitis. These deficiencies can be caused by poor absorption or too few calories taken in on a daily basis.
How is ulcerative colitis diagnosed?Diagnosis of ulcerative colitis always starts with a thorough health history and physical health history. Your child might also need to have certain tests to help diagnose ulcerative colitis:
Blood tests: Blood tests check for anemia, which can be a sign of slow bleeding from the intestines. High levels of white blood cells and platelets 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 level, sedimentation rate).
Stool samples: 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.
Body imaging: Pictures that show the inside of your child’s belly or pelvic area can help the team learn more about your child’s condition. Sometimes an ultrasound or MRI may be done. Some children might need an upper GI which is a series of X-rays with a small bowel follow-through or an abdominal CT scan.
Endoscopy: An endoscopy helps visualize your child’s intestines from the inside. 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 of the intestine for testing. (Before these procedures your child is sedated so that they will not feel any pain and will not move. These studies may be crucial to confirm that inflammation is present and allows your child’s gastroenterologist and surgeon to visualize ulcers or bleeding).
Your child might have one or more of these types of endoscopy:
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: The doctor puts the endoscope through your child’s anus to look at only their lower colon.
Colonoscopy: The doctor puts the endoscope through your child’s anus to look at their whole colon.
How is ulcerative colitis treated? What will happen in the hospital?Treatment for ulcerative colitis depends on the severity of the disease. Each person experiences ulcerative colitis differently, so treatment is adjusted for each individual. Treatment of your child’s ulcerative colitis can include: medications, nutritional supplements, surgery or a combination of these. The goals of treatment are to control inflammation, correct nutritional deficiencies and control symptoms. The goal of drug therapy is to induce and maintain remission, and to improve the quality of life for people with ulcerative colitis. Several types of drugs are available. Different combinations may be prescribed by your child’s gastroenterologist. These are examples of different classes of medications that may be prescribed:
- Aminosalicylates: Reduce inflammation in the inner lining of the intestine
- Corticosteroids: Suppress the overactive immune system. (try to avoid corticosteroids or use them as little as possible because they can cause long-lasting side effects)
- Immunomodulators: Block the immune reaction that worsens inflammation
- Block certain substances that fuel the process of inflammation (TNF-alpha blocking agents, such as infliximab or adalimumab)
- Antibiotics: Control bacteria growth (antibiotics)
About 20 percent of children with ulcerative colitis eventually need surgery. Since the disease is located in the lining of the colon and rectum, removing them often “cures” the ulcerative colitis. This procedure frequently happens in two stages:
Stage 1: The surgeon removes the diseased colon and uses a small section of your child's small intestine to create a “J-pouch.” The ileum (the last portion of the small intestine) is brought down and formed into a pouch. This pouch will act like a reservoir to hold stool and then allow passage of stool from the anus in the usual way. A temporary ileostomy is performed so that the pouch heals and remains in place for several weeks.
Stage 2: About two or three months later, the surgeon removes the ileostomy and attaches the ileum to the rectum. This allows the child to again have bowel movements in the regular manner.
Depending on your child's condition, sometimes the procedure is done in three stages, and sometimes only the first stage will be done.
When will my child be discharged? / What will be my child's recovery?The length of hospital stay depends upon the return of your child’s bowel function. Inflammation from ulcerative colitis can make it hard for your child to get enough nutrients to grow and develop. Nutritional support, such as TPN, will be given until your child recovers from surgery.
Sometimes your child may have a nasogastric tube (placed through the nose into stomach to allow bowel rest) after surgery. Your child’s diet will be advanced as tolerated.
Initially intravenous pain medications will be administered, but this will be changed to oral form soon after your child begins to eat. Your child will be discharged when he is eating, drinking and comfortable on oral pain medications, and when the amount of stool from the ileostomy is stable. At the time of discharge, you will be instructed on weaning steroids if applicable, as well as learn how to care for your child’s ileostomy. A case manager will help arrange for ileostomy supplies at home and nursing visits.
After the initial surgery, your child will be carefully monitored and he/she will eventually return to have the ileostomy closed.
What should I be looking out for after the operation?Pouchitis is always a concern after an operation to treat ulcerative colitis. The symptoms of pouchitis include cramping abdominal pain, fever, increased frequency of stools and blood in stools. If these symptoms occur you will need to contact your surgeon or gastroenterologist. Pouchitis usually responds to oral antibiotics. If pouchitis recurs, further investigation, including a rectal examination, may be necessary.
It is very common to have more frequent bowel movements and even possible incontinence after the ileostomy is closed, while your child’s body adapts to the new pouch. Medications and dietary adjustment can be made to help manage this problem. Post operatively you can expect your child to have 6-10 bowel movements per day. After several weeks to months, the bowel movements regulate and the goal is to have about 5-6 bowel movements per day.
An online resource where your teen can learn and connect with other teens with UC.