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There are many ways you can help children and their families get the care they need.
Q: What is “indeterminate colitis”?
A: Approximately one out of 10 children with IBD have what’s called “indeterminate colitis,” which means that the doctor can’t definitively state whether the disease is UC or Crohn’s, 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:
Sometimes it’s not clear whether a child who has IBD is experiencing an IBD flare-up or an episode of IBS, and 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 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 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 UC. Some children with IBD may find it difficult to tolerate insoluble fiber, such as seeds, bran and the skin of fruit.
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, we encourage physical activity. In addition to the many other benefits of exercise, it can also help maintain bone density, which is important 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), with medications, or, in some cases, surgery. At Boston Children’s, our team of doctors, nurses and clinicians works closely with patient families to ensure our patients get the very best, completely personalized care.
Q: What is a flare-up and what should I do if my child experiences one?
A: A flare-up is a usually a recurrence of one or more of the symptoms that originally led your child to be diagnosed with UC (e.g., diarrhea, rectal bleeding and cramping). Most people with IBD experience an occasional flare-up. If your child seems to be showing symptoms of a flare-up, 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 condition. The school nurse can usually write a confidential memo to your child’s teachers. At Boston Children’s, our IBD doctors and social worker 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.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”