Crohn’s disease is a lifelong condition. No treatment can cure it. However, many children can control their disease and symptoms with a balance of medicines and nutritional support (see below). When other treatments are not enough, some children need surgery.
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 Crohn’s Disease Treatment
At the IBD Program, our goals for treating your child’s Crohn’s disease are to:
- Restore balance and health to your child’s body
- Relieve any pain or other symptoms from Crohn’s disease
- 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 Crohn’s Disease
Your child might need medicines that:
- Suppress their 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 or methotrexate)
- Block certain substances that fuel the process of inflammation (TNF-alpha blocking agents, such as infliximab, adalimumab or certolizumab)
- Limit the movement of overactive immune cells (natalizumab)
- Control bacteria growth (antibiotics)
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Nutrition and Crohn’s Disease
The intestine’s job is to break down food so nutrients can be absorbed into the bloodstream. Inflammation from Crohn’s disease 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 or using nutritional therapies (formulas or special diets).
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’s mounting evidence that certain nutritional therapies can reduce inflammation in Crohn’s disease. One is a diet made up of 100% formula. This can be formula with simple nutrients that don’t need to be broken down before they are absorbed (elemental formula) or formula with more complex nutrients (polymeric formula). Research shows these formulas can help some children with IBD.
Other options, such as the specific carbohydrate diet, exist. At this time, the options have different levels of evidence to support their effectiveness.
At the IBD Program, we embrace nutritional therapies and help families decide whether this type of treatment is right for their child and how to use it. The program team can give you details and resources about the options. We work with you to decide the best ways to track your child’s progress and tell whether the therapy is working for them.
There may be rare times when your child needs to rest their bowel (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 Crohn’s Disease
Your child might need surgery if:
- They have serious inflammation that doesn’t get better with medicines and nutritional support.
- Their intestine gets very narrow or scarred. This can block the intestine.
- They have some other complication, such as an abscess or fistula around their anus, which can cause pain and infections.
Overall, about two-thirds to three-fourths of people with Crohn’s disease need surgery for the condition some time in life. We are hoping that newer treatments and a more effective treatment approach will reduce the need for surgery.
Surgery does not cure Crohn’s disease, but it may help control problems linked with the disease. Surgeons remove sections of intestine where the disease is active. These are the sections that are causing symptoms. The goal is to remove problem areas while keeping as much of the healthy intestine as possible.
There are many different operations for Crohn’s disease. Options for surgery include both laparoscopic (PDF) techniques and open methods (using a larger cut). The right surgery for your child depends on their condition and the specific area of the intestine that’s affected. Your child's surgeon will discuss these options with you. Together, you can come up with a plan that best suits your child.
Your child may need other types of surgery to treat complications of Crohn’s disease. For example, your child may need surgery to drain a pocket or pus (abscess) or repair an abnormal channel (fistula) that forms when a sore extends into another part of the intestine or into the bladder, vagina or skin. If the intestine is narrowed from scarring, your child may need surgery to make it wider (stricturoplasty).
No matter the procedure, 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
New Treatments for Crohn’s Disease
Stem cell transplant
Children with certain immune deficiencies can get severe Crohn’s disease that starts before age 5. Immunologists at Seattle Children’s can do thorough testing to check for these deficiencies.
In certain cases, a stem cell transplant can be done to treat the problem. The transplant can give a child the parts of their immune system that are missing, or it can replace the parts that don’t work properly.
Seattle Children’s performed a successful stem cell transplant in 2011 to treat this type of Crohn’s disease. We have one of the largest centers in the world for transplants of stem cells, and we take part in transplant research. Read more about stem cell transplants.
Crohn’s disease that starts later than age 5 is much less likely to come from an immune deficiency that doctors can identify or treat with a transplant.
Fecal microbiota transplant therapy
Fecal microbiota transplant therapy (also known as stool transplant or feces transplant) is another new 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.