Crohn disease - children - discharge

Your child was in the hospital because of Crohn disease. This is an inflammation of the surface and deep layers of the small intestine, large intestine, or both.

The disease may be mild or severe. Your child may have had exams, lab tests, and x-rays. The health care provider may have examined the inside of your child's rectum and colon using a flexible tube (colonoscopy). A tissue sample (biopsy) may have been taken.

Your child may have been asked not to eat or drink anything and have been fed only through an IV (intravenous line). They may have received special nutrients through a feeding tube.

Your child may have started taking medicines to treat Crohn disease.

Your child also may have needed one of these types of surgery:

• Fistula repair
• Small bowel resection
• Ileostomy
• Partial or total colectomy

After a flare-up of Crohn disease, your child may be more tired and have less energy than before. This should get better. Ask your child's provider about any side effects from any new medicines. Your child should see their provider regularly. Your child also may need frequent blood tests, especially if they are on new medicines.

If your child went home with a feeding tube, you will need to learn how to use and clean the tube and the area where the tube enters your child's body. If your child is old enough, you can help them learn about the disease and how to care for themselves as well.

When your child first goes home, they may only be able to drink liquids. Or, they may need to eat different foods from what they normally eat. Ask the provider when your child can start eating their regular diet.

You should give your child:

• A well-balanced, healthy diet. It is important that your child get enough calories, protein, and nutrients from a variety of food groups.
• A diet low in saturated fats and sugar.
• Small, frequent meals and plenty of liquids.

Certain foods and drinks can make your child's symptoms worse. These foods may cause problems for them all the time or only during a flare-up.

Try to avoid the following foods that can make your child's symptoms worse:

• If they cannot digest dairy foods well, limit dairy products. Try low-lactose cheeses, such as Swiss and cheddar, or an enzyme product, such as Lactaid, to help break down lactose. If your child must stop eating dairy products, talk with a dietitian about making sure they get enough calcium and vitamin D.
• Too much fiber may make symptoms worse. If eating raw fruits or vegetables bothers your child, try baking or stewing them. If that does not help enough, give them low-fiber foods.
• Avoid foods that are known to cause gas, such as beans, spicy food, cabbage, broccoli, cauliflower, raw fruit juices, and fruits, especially citrus fruits.
• Avoid or limit caffeine. It can make diarrhea worse. Remember that some sodas, energy drinks, teas, and chocolate all have caffeine.

Ask your child's provider about extra vitamins and minerals your child may need:

• Iron supplements (if they are anemic)
• Nutrition supplements
• Calcium and vitamin D supplements to help keep their bones strong
• Vitamin B-12 shots, to prevent anemia

Talk with a dietitian to make sure your child is getting proper nutrition. Be sure to do this if your child has lost weight or their diet becomes very limited.

Your child may be worried about having a bowel accident, embarrassed, or even sad or depressed about having this condition. Your child may even find it difficult to participate in activities at school. You can support your child and help them understand how to live with the disease.

These tips can help you manage your child's Crohn disease:

• Talk openly with your child and answer all of their questions about the condition.
• Help your child be active. Talk with your child's provider about activities and exercises your child can do.
• Simple things such as doing yoga or tai chi, listening to music, relaxation exercises, meditation, reading, or soaking in a warm bath can relax your child and help reduce stress.
• Have your child see a counselor who can help them gain self-confidence.
• Be alert if your child is losing interest in school, friends, and activities. If you think your child may be depressed, talk with a mental health counselor.

You may want to join a support group to help you and your child manage the disease. Crohn's & Colitis Foundation of America (CCFA) is one of such groups. CCFA offers a list of resources, a database of doctors who specialize in treating Crohn disease, information about local support groups, and a website for teens - www.crohnscolitisfoundation.org.

Your child's provider may give your child medicine to help relieve symptoms. The provider may give one or more of the following medicines based on the severity of your child's Crohn disease and how your child responds to treatment:

• Anti-diarrhea drugs can help when your child has bad diarrhea. Loperamide (Imodium) can be bought without a prescription. Always talk to your child's provider before using these drugs.
• Fiber supplements may help your child's symptoms. You can buy psyllium powder (Metamucil) or methylcellulose (Citrucel) without a prescription.
• Always talk to your child's provider before using any laxative medicines.
• You can give your child acetaminophen for mild pain. Drugs such as aspirin, ibuprofen, or naproxen may make symptoms worse. Talk to your child's provider about which medicines you can use. You may need a prescription for stronger pain medicines.

There are many types of drugs that can help prevent or treat attacks of your Crohn disease. Some may have more serious side effects. Your child will likely be prescribed one of these medicines once they recover from surgery.

You can also do the following to help your child:

• Talk with your child about medicine. Help your child understand the use of the medicine they will be taking and how it will help them feel better. This will help your child understand why it is important to take the medicine as directed.
• If your child is old enough, teach your child how to take the medicine on their own.

Medicines that suppress the immune system have a risk for complications. If your child is taking these medicines, the provider may want to see your child every 3 months to check for any possible problems.

You should call the provider if your child has:

• Cramps or pain in the lower stomach area
• Bloody diarrhea, often with mucus or pus
• Diarrhea that cannot be controlled with diet changes and drugs
• Problems gaining weight
• Rectal bleeding, drainage, or sores
• Fever that lasts more than 2 or 3 days or a fever higher than 100.4°F (38°C) without an explanation
• Nausea and vomiting that lasts more than a day
• Skin sores or lesions that do not heal
• Joint pain that keeps your child from doing everyday activities
• Side effects from any medicines your child is taking

Inflammatory bowel disease in children - Crohn disease; IBD in children - Crohn disease; Regional enteritis - children; Ileitis - children; Granulomatous ileocolitis - children; Colitis in children; CD - children

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Nguyen GC, Loftus EV Jr, Hirano I, et al. American Gastroenterological Association Institute guideline on the management of Crohn's disease after surgical resection. Gastroenterology. 2017;152(1):271-275. PMID: 27840074 pubmed.ncbi.nlm.nih.gov/27840074/.

Stein RE, Baldassano RN. Inflammatory bowel disease. In: Kliegman RM, St. Geme JW, Blum NJ, Shah SS, Tasker RC, Wilson KM, eds. Nelson Textbook of Pediatrics. 21st ed. Philadelphia, PA: Elsevier; 2020:chap 362.

Velazco CS, McMahon L, Ostlie DJ. Inflammatory bowel disease. In: Holcomb GW, Murphy JP, St. Peter SD, eds. Holcomb and Ashcraft's Pediatric Surgery. 7th ed. Philadelphia, PA: Elsevier; 2020:chap 41.

Updated by: Michael M. Phillips, MD, Emeritus Professor of Medicine, The George Washington University School of Medicine, Washington, DC. Also reviewed by David C. Dugdale, MD, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team.