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Ileostomy in Children: What to Expect at Home

Location of the colon, small intestine, and stoma, with closeup view of the stoma

Your Child's Recovery

Part of your child's intestine has been removed or separated from the rest of the intestine. This is most often done because of a disease. During the ileostomy, the surgeon made a hole in your child's belly and connected part of the small intestine to that opening in the skin. This opening is called the stoma.

A pouch is attached to the outside of the stoma. Stool collects in the pouch and must be removed several times each day. The stool will be looser or have more liquid than before surgery.

Your child is likely to have cramps that come and go for the next few days. He or she may have a fever and nausea and may feel tired. This is common during healing. Your child will probably feel better in a week. A nurse or other member of your child's care team will show you and your child how to care for the stoma and pouch after you go home.

This care sheet gives you a general idea about how long it will take for your child to recover. But each child recovers at a different pace. Follow the steps below to help your child get better as quickly as possible.

How can you care for your child at home?

Activity

  • Allow your child's body to heal. Don't let your child move quickly or lift anything heavy until he or she is feeling better. When your child is active again, a support belt can help secure the ileostomy pouch.
  • Have your child rest when he or she feels tired.
  • Your child will probably need to take 2 to 4 weeks off from school.
  • Many children are able to return to normal activities within a few weeks after surgery.

Diet

  • Your child may not have much appetite after the surgery. But try to help your child eat a healthy diet.
  • Give your child a low-fibre diet for several weeks after surgery. It's best for your child to eat many small meals throughout the day. Add high-fibre foods a little at a time.
  • Your child may need to take vitamins that contain sodium and potassium. Ask your doctor.

Medicines

  • Be safe with medicines. Read and follow all instructions on the label.
    • If the doctor gave your child a prescription medicine for pain, give it as prescribed.
    • If your child is not taking a prescription pain medicine, ask the doctor if your child can take an over-the-counter medicine.
  • Your doctor will tell you if and when your child can restart his or her medicines. The doctor will also give you instructions about your child taking any new medicines.
  • If the doctor prescribed antibiotics for your child, give them as directed. Do not stop using them just because your child feels better. Your child needs to take the full course of antibiotics.
  • Your doctor will tell you if your child needs to take some medicines in a different form now that he or she has a stoma. You may need to crush pills or give your child a liquid form of the medicine.

Hygiene

  • Your doctor will tell you when your child can shower after surgery. Your child can shower with or without the ileostomy pouch. You don't need to worry about getting soap or water inside the stoma.

Other instructions

  • If the skin under your child's pouch is red, irritated, or itchy, you need to treat the skin. Follow these steps:
    • Gently remove the pouch.
    • Clean the skin under the pouch with water.
    • Dry the skin.
    • Sprinkle ostomy protective powder on the skin, and then blot it off.
    • Reattach or replace the pouch.
    • If your child keeps having skin irritation, talk to the doctor.

Follow-up care is a key part of your child's treatment and safety. Be sure to make and go to all appointments, and call your doctor or nurse call line if your child is having problems. It's also a good idea to know your child's test results and keep a list of the medicines your child takes.

When should you call for help?

Call 911 anytime you think your child may need emergency care. For example, call if:

  • Your child passes out (loses consciousness).
  • Your child is short of breath.

Call your doctor or nurse call line now or seek immediate medical care if:

  • Your child has pain that does not get better after he or she takes pain medicine.
  • Your child has loose stitches, or the incision comes open.
  • Your child is bleeding through the bandage.
  • The skin around your child's stoma is red, broken, or too wet.
  • You have trouble attaching the bag to the stoma.
  • Your child's stoma has bloody discharge or seems to be blocked.
  • Your child has symptoms of infection, such as:
    • Increased pain, swelling, warmth, or redness.
    • Red streaks leading from the incision.
    • Pus draining from the incision.
    • A fever.
  • Your child is sick to his or her stomach or can't drink fluids.
  • Your child has signs of a blood clot in his or her leg (called a deep vein thrombosis), such as:
    • Pain in the calf, back of knee, thigh, or groin.
    • Redness and swelling in the leg or groin.

Watch closely for changes in your child's health, and be sure to contact your doctor or nurse call line if:

  • Your child's stoma sticks out above the skin or has sunk below it.
  • Your child has any problems with his or her stoma.

Care instructions adapted under license by your healthcare professional. If you have questions about a medical condition or this instruction, always ask your healthcare professional. Healthwise, Incorporated disclaims any warranty or liability for your use of this information.