Frequently Asked Questions about Crohn’s Disease in Children

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Q: What’s the difference between Crohn’s disease and ulcerative colitis?

A: Crohn’s disease and ulcerative colitis (UC) are the two types of inflammatory bowel disease (IBD). Within IBD, the split is about half and half.

Crohn’s disease

Ulcerative colitis 
Can affect any part of a child’s intestinal tract

Affects the colon and very occasionally the lowest part of the small intestine
Symptoms include diarrhea, bleeding, abdominal pain, tiredness, fever or weight loss Symptoms usually include abdominal cramps and diarrhea with bleeding
Can affect the entire thickness of the intestinal wall Involves only the innermost lining of the intestinal wall
Can affect different segments of the intestine —“skipping” some in the middle Inflammation does not “skip” sections of the intestine

Crohn’s is a little more challenging to treat because it can involve many different areas of the intestine. And since the symptoms are more subtle, it sometimes takes more time to diagnose.

Q: What is “indeterminate colitis”?

A: Approximately one out of 10 children have what’s called “indeterminate colitis,” which means that the doctor can’t definitively state whether the disease is UC or CD, even after thorough medical testing. Over time, many cases of indeterminate colitis will ultimately be diagnosed as either ulcerative colitis or Crohn’s.

Q: Is inflammatory bowel disease (IBD) the same as irritable bowel syndrome (IBS)?

A: Understandably, people sometimes get these two conditions confused, but they’re actually very different, even though the symptoms may appear to be similar:

  • In IBS, there’s no inflammation of the intestine.
  • The inflammation present in IBD can cause permanent scarring and damage to the intestine that may require surgery—this isn’t so with IBS.
  • Different medications are used to treat IBD and IBS.
  • In general, people with IBS don’t have blood in the stool.

Sometimes when it’s not clear whether a child who has IBD is experiencing an IBD flare-up or an episode of IBS, the doctor will perform a colonoscopy to check for inflammation. If inflammation is present, it’s likely to be a flare-up of IBD.

Q: Is inflammatory bowel disease common?
A: Yes, it’s quite common. Around 1.4 million Americans have inflammatory bowel disease, including around 80,000 – 100,000 children and young adults.

Q: Will my child be all right?
A: Most likely yes. For the vast majority of children with IBD, doctors are able to control their condition with medication and/or surgery, so they can live full and happy lives.

Q: Will my child always have Crohn’s disease?
A: Unfortunately, since a cure for IBD has yet to be found, it’s likely that CD will always be a part of your child’s life. But research into better treatments—and the possibility of a cure—is ongoing, at Boston Children’s and elsewhere.

Q: How will my child’s life change because of Crohn’s disease?
A: Your child will probably have to take medications for the foreseeable future. She’ll also have more doctor appointments than before her diagnosis and may have to stay at the hospital at some point. Other than that, there’s no reason to think that IBD will restrict your child’s life in any significant way. Many celebrities, famous athletes and even former presidents have had IBD.

Q: What’s the difference between Crohn’s disease and inflammable bowel disease (IBD)?
A: Crohn’s disease is one of the two major types of IBD (ulcerative colitis is the other).

Q: Is IBD caused by stress?
A: No, there is no evidence that IBD is caused by stress. But living with a chronic illness can be stressful, and stress can make your child feel less well or even contribute to a flare-up. That’s why it’s best for your child to stay on her medical regimen even when she’s feeling well, and anticipate and prepare for stressful situations.

Q: Does my child need to follow a special diet?
A: Most often, we recommend that children simply follow the food pyramid or the dietary guidelines for Americans to ensure that they get the proper nutrition. Within those guidelines, you and your child can pick certain foods based on her preferences and how they seem to affect her condition. Some children with Crohn’s, especially those who have narrowed segments of intestine, may find it difficult to tolerate insoluble fiber, such as seeds, bran and the skin of fruit (e.g., apples).

Some children may be able to control mild symptoms by simply avoiding the foods that seem to upset their intestines. At Boston Children’s, our dedicated IBD nutritionist can meet with your child and your family to develop a sound nutritional plan.

Q: Should my child restrict her physical activities?
A: Generally speaking, no. As long as your child is feeling well enough to participate, physical activity is encouraged. In addition to the many other benefits of exercise, it can also help maintain bone density, which can be very helpful for children with IBD. Your child’s doctor will give you more specific advice about good activities for your child.

Q: Will my child need to be hospitalized?
A: Sometimes a child’s symptoms may be so severe that she needs to spend some time in the hospital, so that we can correct malnutrition and stop diarrhea and the loss of blood, fluids and mineral salts. We may treat her with a special diet, feeding through a vein, medications, or, in some cases, surgery. But please be assured that as a valued member of your child’s health care team, you’ll be kept fully up to date at all times.

Q: What is a flare-up and what should I do if my child experiences one?
A: A flare-up is usually a recurrence of one or more of the symptoms that originally led your child to be diagnosed with Crohn’s (e.g., abdominal pain, fatigue and weight loss). She may also experience inflammation of the joints (arthritis), and sores in her mouth or on her skin. If this happens, it’s a good idea to check with your child’s primary care doctor or gastroenterologist.

Q: What, if anything, should I tell my child’s school about her IBD?
A: Communication is key when dealing with your child’s school, and it’s a good idea to let them know of the diagnosis as early as possible. It’s important that your child’s teachers know that she may need to be excused to go to the restroom suddenly and/or frequently, and may miss school due to her illness. The school nurse can usually write a confidential memo to your child’s teachers. At Boston Children’s, our IBD doctors and social workers will help communicate with your child’s school and draft letters explaining the illness to the school.

Q: What are some things that I can do to help my child?
A: IBD can be hard to discuss sometimes, because many of its symptoms involve things that we don’t normally talk about. But the most important thing is communication; it’s very important that you be able to talk to your child about her condition. Be open about it, and if you’re embarrassed, don’t hide it. Let your child know that you understand that when it comes to managing her condition, a lot is being asked of her.

It’s also a good idea to learn as much as you can about IBD, talk to people who are in similar situations, and try to educate the people who are closest to you about your child’s condition.

Boston Children’s is so much more than a hospital—it’s a community of researchers, clinicians, administrators, support staff, innovators, teachers, patients and families, all working together to make the impossible possible. ”
- Sandra L. Fenwick, President and CEO

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