What is ulcerative colitis?
Signs and symptoms of ulcerative colitis
How is ulcerative colitis diagnosed?
How is ulcerative colitis treated?
Surgical treatment for ulcerative colitis
Follow-up care for ulcerative colitis
Resources for families
Ulcerative colitis is a chronic inflammatory bowel disease that affects the lining of the colon (large intestine) and rectum, causing inflammation and ulcers within the lining of the bowel. The cause of ulcerative colitis is unknown but it is believed to be a combination of genetics, an altered immune response, and the environment.
Ulcerative colitis affects both males and females equally. Most people 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 ulcerative colitis prior to age 20. Ulcerative colitis is associated with an increased risk of colon cancer.
The most common symptom of ulcerative colitis is bloody diarrhea. Other symptoms include:
The symptoms of ulcerative colitis often come and go, leading to periods of remission in between flares of the disease.
A gastroenterologist will diagnose your child with ulcerative colitis based on a thorough health history, a physical examination, laboratory tests, stool samples (looking for blood or infection) and the results of an upper endoscopy and colonoscopy. A colonoscopy is crucial to confirm that inflammation is present and allows your child’s gastroenterologist to look for ulcers or bleeding that indicates ulcerative colitis.
It is important that the diagnosis of ulcerative colitis be as secure as possible, as the surgical procedure used to cure ulcerative colitis may result in unfavorable outcomes should the diagnosis actually be Crohn’s disease. It is thought that up to 20 percent of children have “indeterminate colitis” despite a thorough preoperative evaluation.
Medications, such as steroids, immunomodulators and antibiotics are often used to control the symptoms of ulcerative colitis and decrease the inflammation of the colon, allowing for the lining to heal. Although ulcerative colitis is not caused by diet, certain foods can make the symptoms worse. Avoiding the foods that aggravate symptoms is often recommended.
Unlike Crohn’s disease, in which surgery is a temporary solution, surgery is the only true “cure” for ulcerative colitis. Surgery is recommended for those patients in whom medical therapy is not successful or causes complications, or for complications such as massive bleeding.
Your child’s gastroenterologist will recommend consultation with a surgeon when they feel surgical intervention might be necessary. The surgical consultation consists of a thorough health history and physical exam. A detailed history of medications including steroid use will be reviewed. We will review your child’s growth chart, blood work, and other diagnostic tests.
There are multiple surgical options for the treatment of ulcerative colitis. At the Children’s Hospital of Philadelphia the standard operation includes a total abdominal colectomy, rectal mucousectomy and J-pouch ileoanal pull-through.
A temporary protective ileostomy is also usually performed. This surgery entails the removal of the diseased colon and rectum while preserving the outer muscles of the rectum. The ileum (the last portion of the small intestine) is then 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.
In the case of urgent need for surgery (for conditions such as toxic megacolon or massive bleeding) a two- or three-stage approach is usually performed. The first stage consists of subtotal colectomy with ileostomy. Although the diseased rectum remains in place, the colitis improves because of lack of fecal flow. This will allow for relief of symptoms and rapid clinical improvement. The goal here is to attempt to wean from medications and improve nutritional status. When the patient has fully recovered, the rectal lining is removed and a J-pouch can be constructed. If an ileostomy is created it can usually be closed several weeks thereafter.
In the following video, a panel of experts from The Children's Hospital of Philadelphia answers questions about the surgical treatment of ulcerative colitis.
Your child will be admitted to the hospital after undergoing the surgical procedure to treat ulcerative colitis. The length of hospital stay depends upon the return of your child’s bowel function. At CHOP, we can often avoid routine use of a nasogastric tube (placed through the nose into stomach to allow bowel rest) after this procedure. Depending on the physical exam findings, your child may be allowed to start drinking fluids right after the 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 approximately 6-8 weeks your child will return to have the ileostomy closed. Once again, the length of hospital stay depends upon the return of your child’s bowel function. 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. After several weeks, the bowel movements regulate and the goal is to have no more than 5-6 bowel movements per day.
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.
Patients treated for ulcerative colitis or Crohn's disease at CHOP receive long-term follow-up care through the Center for Pediatric Inflammatory Bowel Disease. A specialized team of pediatric IBD experts, including physicians, pediatric surgeons, psychologists, social workers and nutritionists works together on the long-term management of your child's IBD.
To make an appointment to have your child evaluated, please contact the Division of Pediatric General Thoracic and Fetal Surgery at 215-590-2730.
Created by: Mary Kate Klarich, MSN, CRNP and Natalie Walker, MSN, CRNP
Reviewed by: Peter Mattei, MD, FACS, FAAP