For most children with ulcerative colitis, treatment is a balance of medicines and nutritional support (see below). If these are not enough, or if your child develops a serious complication, your child may need surgery to remove their colon. Removing the colon is the only way to cure ulcerative colitis.
The Inflammatory Bowel Disease (IBD) Program at Seattle Children’s brings a team of specialists together in one place to give your child and family the most complete care. The program combines care from experts in digestive health, immune health, nutrition, surgery and psychology. You and your child are active partners in making treatment choices.
Goals of Ulcerative Colitis Treatment
At the IBD Program, our goals for treating your child’s ulcerative colitis are to:
- Restore balance and health to your child’s body
- Relieve any pain or other symptoms caused by ulcerative colitis
- Decrease inflammation and heal ulcers in your child’s intestines
- Make sure your child is getting good nutrition
- Restore your child’s growth and development
- Ensure your child builds the best bone density
- Help your child and family with the mental, emotional and social effects of IBD
Medicines for Ulcerative Colitis
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)
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Nutrition and Ulcerative Colitis
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.
The IBD Program 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.
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
Surgery for Ulcerative Colitis
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 two 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)
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 two months, after the inside pouch heals, surgeons remove the outside bag and close the ileostomy. This allows waste to pass out through the anus.
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.
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 Program 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 Program include dietary therapies, antibiotics, probiotics, medicines that reduce inflammation, treatments done with an endoscope and surgery.
New Treatments for Ulcerative Colitis
Fecal microbiota transplant therapy (also known as stool transplant or feces transplant) is a new treatment option. It involves taking a sample of the microbiome from the intestine of a healthy person and putting it into the intestine of the child with IBD. The purpose is to improve the balance of microbes and reduce inflammation. The donor is a close family member – for children, it’s usually a parent.
The results of this method vary, and more research is needed. It works in reducing infection with bacteria called Clostridium difficile (often called C. diff), and it helps some patients with IBD. Fecal microbiota transplant therapy is offered at Seattle Children’s.