Inflammatory Bowel Disease (IBD) in Children | Frequently Asked Questions

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

Crohn’s disease and ulcerative colitis are the two main types of inflammatory bowel disease. 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, fatigue, anemia 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 typically does not “skip” sections of the intestine

Crohn’s can be 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.

What is “indeterminate colitis”?

A: Approximately one out of 10 children has indeterminate colitis, which means that the doctor can’t definitively state whether the disease is ulcerative colitis 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. This is treated similarly to Crohn’s and ulcerative colitis.

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

Even though they have similar symptoms, these two conditions are very different:

  • IBS doesn’t involve inflammation of the intestine.
  • Unlike, IBS, the inflammation present in IBD can cause permanent scarring and damage to the intestine that may require surgery.
  • Different medications are used to treat IBD and IBS.
  • In general, people with IBS don’t have blood in their stool. 

    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.

Will my child always have IBD?

Since there is currently no cure for IBD, it’s likely that Crohn’s disease or ulcerative colitis will always be a part of your child’s life. However, researchers are continuing to identify better treatments for these conditions.

How will my child’s life change because of IBD?

Your child will probably have to take medications for the foreseeable future. He or she will also have more doctors’ appointments than before this 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. 

Is IBD caused by stress?

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.

Does my child need to follow a special diet?

Good nutrition is necessary to promote growth and development. Your child may notice an increase in symptoms with certain foods, in which case avoiding those trigger foods may help. Certain diets can help decrease inflammation, which can be useful in conjunction with medication. In general, we recommend focusing on fresh fruits and vegetables and lean meats and avoiding high fat, processed foods. Some children with IBD have difficulty with strictures or significant inflammation and may need to adhere to a low-residue diet or avoid foods that could cause an obstruction through the narrowed part of the intestine, such as popcorn, nuts, seeds and the skin of fruit. Your gastroenterologist will tell you if dietary modifications are necessary.

Should my child restrict her physical activities?

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.

Will my child need to be hospitalized?

Typically, children can manage their IBD at home and do not require hospitalization. Occasionally, a child’s symptoms may be so severe that he or she needs to spend some time in the hospital, so that doctors can correct malnutrition and stop diarrhea and the loss of blood, fluids and mineral salts.

What is a flare-up and what should I do if my child experiences one?

A flare-up is a usually a recurrence of one or more of the symptoms that originally led your child to be diagnosed with IBD (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. When a patient is off of steroids and feeling well, they are in remission.

What, if anything, should I tell my child’s school about IBD?

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 he or she may need to be excused to go to the restroom suddenly or frequently and may miss school due to illness. The school nurse can usually write a confidential memo to your child’s teachers.

What are some things that I can do to help my child?

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. 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.