When Your Child Needs a Stoma

If your child has a problem affecting the intestines, he or she may need a stoma. A stoma is an opening. It gives a new way for stool and mucus to leave the body from the intestines. It’s important to help care for your child’s stoma at home and to help your child adjust to having a stoma.

Outline of child's abdomen showing stomach and intestine. End of intestine goes through abdomen to make stoma.

Outline of child's abdomen showing bag around stoma.

How does a stoma work?

During surgery to create a stoma, the colon or part of the small intestine is removed or cut. The end of the intestine is then attached to a small opening in the abdominal wall. Waste then leaves the body through the stoma and empties into a bag.

Why is a stoma needed?

A stoma is needed if your child has a problem with his or her intestines. This problem may be due to:

  • A health problem present at birth (congenital), such as intestinal malrotation

  • An illness that affects the intestines, such as ulcerative colitis

  • An injury or surgery that affected the intestines

A stoma is temporary when it’s used to let the intestines heal after illness or surgery. A stoma is permanent when the intestines are damaged or a large portion has been removed.

Caring for your child

Before you and your child leave the hospital, you’ll be given home care instructions. You’ll need to help your child care for the stoma and the skin around it. Follow all instructions given by your child’s healthcare provider. Make sure to:

  • Keep the stoma and the skin clean. Protect the skin from moisture and contact with stool. This helps to prevent skin soreness and breakdown.

  • Empty the stoma bag regularly. This is usually needed after every bowel movement. Become familiar with your child’s bowel habits. Learn the amount and consistency of stool that’s normal for your child.

Helping your child live with a stoma

The stoma shouldn’t be uncomfortable or painful for your child. But it may take some time for your child to get used to it. You can help your child by encouraging him or her to resume a normal routine.

  • Your child can be active like other children. Check with your child’s healthcare provider about what physical activities are appropriate for your child.

  • Your child can resume a normal diet unless told not to by your child’s healthcare provider.

  • Your child can wear the same clothing as before. Stoma bags are designed to lie flat against the body so they aren’t very noticeable.

  • Meet with your child’s caretakers or teachers and speak with them about your child’s needs. Make sure they know how to contact you or your child’s healthcare provider in case of a problem or emergency.

  •  Keep extra care supplies for your child’s stoma at home and at school.

When to call the healthcare provider

Contact the healthcare provider right away if your child has any of the following:

  • Skin around the stoma that is red, oozing, bleeding, or broken

  • Skin around the stoma that itches, stings, or has white spots

  • Stoma that swells, changes color, or bleeds without stopping

  • Stoma that becomes flat or sinks below the skin, or it sticks out more than usual

  • Cramping or abdominal pain

  • Bowel movements that are more watery or that occur less often than usual

  • Bloody or black stool

  • Fever of 100.4°F (38.0°C) or higher, or as directed by the healthcare provider