Discharge Instructions: Your Child’s Ileostomy

Your child has had a procedure called an ileostomy. This surgery affects part of the colon (large intestine) and part of the last section of the ileum (small intestine). Parts of your child’s colon and ileum were cut. Parts may have been removed. A small hole called a stoma is made in the abdominal wall and skin. During surgery, the intestine is attached to the skin to allow stool and mucus to pass out of the body. The stool and mucus drain into a holding bag. Below are guidelines for home care after an ileostomy. The doctor and nursing staff may give you other instructions for your child.

Home care

Care for your child’s healing stoma as you were shown. Ask your child’s doctor or nurse for an instruction sheet about stoma care. This will help remind you how to care for the stoma.

Be sure to do the following after surgery

  • Care for your child’s stoma as instructed.

  • Unless told not to, wash the surgical incision(s) with soap and water and pat dry. Your child can shower or bathe as needed, but avoid having water spray right on the incision.

  • Check the healing incision(s) every day for redness, drainage, swelling, or pulling apart of the skin. Call the doctor if you notice any of the signs listed in the tint box below.

  • Follow all instructions from the doctor about watching the amount output into the ileostomy bag.

  • Keep your child from lifting anything heavier than 5 pounds until the doctor says it’s OK.

  • Keep your child from rough play and contact sports. But let your child be active, such as taking walks. If traveling in a car for long periods, stop often to let your child stretch.

  • Ask the doctor when your child can return to school. Most children are able to do so within 2 to 3 weeks after surgery.

  • Give your child any prescribed medications and vitamins as directed. Don’t skip doses.

  • Don’t give your child over-the-counter medications unless the doctor says it’s OK.

Special notes

  • A stoma can be temporary (used for a short time) or permanent. Your child’s health care provider can tell you more.

  • Tell your child’s teachers and the school nurse that your child has an ileostomy.

  • An ileostomy bag doesn’t smell and can be hidden under clothing. The bag can be emptied into a toilet in privacy.

  • A child with an ileostomy can still play most sports. Talk to the doctor about your child’s special needs.

Follow-up care

Make follow-up appointments as instructed.


When to seek medical care

Call the doctor right away if your child has any of the following:

  • Excessive bleeding from the stoma

  • Bulging skin around the stoma

  • Fever over 100.4°F (38.0°C) or shaking chills

  • Redness, swelling, bleeding, or drainage from the incision

  • Signs of dehydration (excessive stoma output, dry mouth, extreme thirst, no tears when crying)

  • Change in the color or size of the stoma

  • Bloody or black, tarry stool

  • Stool that is more watery than normal for more than 5 hours

  • No gas or stool leaving the stoma

  • Nausea, vomiting, pain, cramping, or bloating

  • Weight loss