Inflammatory Bowel Disease: How to Care for Your Child

Your child was diagnosed with inflammatory bowel disease (IBD). Kids with IBD have inflammation (swelling and irritation) of the digestive tract. The inflammation causes belly pain, diarrhea, low energy, weight loss, and other problems. There are two main kinds of IBD: Crohn's disease and ulcerative colitis (UC). Your child stayed in the hospital for treatment and testing, but is now ready to go home.

• Be sure your child takes all medicines exactly as prescribed, including any vitamins or nutritional supplements.

• Some medicines used to treat IBD make it harder to fight infections. So it's important for your child to get all vaccines recommended for their age. The health care provider may recommend a blood test to make sure that the vaccines are protecting your child.

• Check with the care team before giving your child over-the-counter or herbal medicines. Never give your child ibuprofen (brand names include Advil® and Motrin®).

• Follow the care team's instructions on healthy eating:

  • Help your child avoid foods that make symptoms worse.

  • Make any recommended changes in diet, such as eating small meals several times a day instead of three large ones.

• Teach your child not to smoke or be around smokers.

• Go to all follow-up care visits. Be sure your child gets all tests the health care team recommends.

• Find ways for your child to deal with stress. Exercise, deep breathing, or talking to a counselor are good ways to cope.

• Help your child find activities to enjoy. Encourage your child to talk with you and share their feelings about living with IBD.

• Tell teachers, the school principal, and the school nurse that your child has IBD. Explain that your child may need lots of bathroom breaks and might miss school at times.

Your child:

• is not taking the prescribed medicines

• does not want to eat or is losing weight

• has new or worsening symptoms such as diarrhea, blood in the poop, or belly pain

• has a fever of 100.4°F (38°C) or higher

• throws up more than once or twice

• has hard or painful poops

• has sores or drainage near the anus (the hole where poop comes out)

• has changes in vision, eye pain, or headaches

Your child:

• has very bad belly pain

• has a lot of blood in the poop

• passes out or feels weak, lightheaded, or dizzy

• is throwing up and can't keep anything down

• appears dehydrated; signs include:

  • dizziness or drowsiness

  • a dry or sticky mouth

  • sunken eyes

  • peeing less often

How do Crohn's disease and UC differ? Crohn's disease can happen in the mouth, esophagus, stomach, small and large intestines, rectum, and anus. UC happens only in the large intestine. Crohn's disease has inflammation that goes through the whole wall of the intestine. UC has inflammation only in the inner lining of the large intestine.

What are the signs of IBD? Kids with IBD may have belly pain, diarrhea, blood in the poop, tiredness, weight loss, fever, rashes, and/or joint pain. They may grow slowly or go through puberty later than usual. When IBD gets worse, it is called a flare. Remission is when the signs of IBD are better or gone. Although the signs of IBD come and go, it is a lifelong condition.

What tests can diagnose IBD and tell the difference between Crohn's disease and UC? Doctors can:

• order blood tests

• check for blood and certain germs in poop

• order imaging tests (such as an MRI, CT, or X-ray) of the intestines

• do an endoscopy or colonoscopy to look inside the digestive tract using a long tube connected to a tiny camera

• take a biopsy (a small piece of tissue, such as from the lining of the intestine) to send to a lab for testing