Your child had an injury or disease in their digestive system and needed an operation called an ileostomy. The operation changed the way your child's body gets rid of waste (stool, feces, or poop).
Now your child has an opening called a stoma in their belly. Waste will pass through the stoma into a pouch that collects it. You and your child will need to take care of the stoma and empty the pouch many times a day.
Seeing your child's ileostomy for the first time may be upsetting. Many parents feel guilty or that it is their fault when their children get ill and need this operation.
Parents also worry about how their child will be accepted now and later in life.
This is a difficult transition. But, if you are relaxed and positive about your child's ileostomy from the beginning, your child will have a much easier time with it. Talking with friends, family members, or a mental health counselor may help you.
Caring for Your Child's Ileostomy
Your child will need help and support. Begin by having them help you empty and change their pouch. After some time, older children will be able to gather supplies and change and empty their own pouch. Even a young child can learn to empty the pouch by themselves.
Be prepared for some trial and error in taking care of your child's ileostomy.
It is normal to have some problems with your child's ileostomy. Some common problems are:
- Your child may have trouble with some foods. Some foods lead to loose stools (diarrhea) and some can increase gas production. Talk to your health care provider about food choices that will help avoid these problems.
- Your child may have skin problems near the ileostomy.
- Your child's pouch may leak or get messy.
Help your child understand how important it is to take good care of their ileostomy, and to clean up the bathroom after ileostomy care.
Living with an Ileostomy
Children do not like to be different from their friends and classmates. Your child may have many difficult emotions, including frustration and embarrassment.
You may see some changes in your child's behavior at first. Sometimes teenagers have a harder time accepting their ileostomy than younger children. Try to keep a positive attitude and use humor when it fits the situation. You being open and natural will help your child's behavior stay positive.
Help your child learn how to handle problems with their ileostomy on their own.
Help your child decide who they want to talk to about their ileostomy. Talk with your child about what they will say. Be firm, calm, and open. It can help to do a role play, where you pretend you are one of the people your child has decided to tell about their ileostomy. Ask questions that person might ask. This will help your child prepare to talk with other people.
Your child should feel that you understand what it is like to have an ileostomy. Help them learn to take care of themselves, and let them know they will be able to live a full life.
When problems do happen, stay calm and ask for help from your child's provider.
Returning to School and Activities
Be flexible with your child as they adjust to school and everyday situations.
When your child returns to school, have a plan to deal with problems or emergencies. If your child knows what to do when there is leakage, it will help them avoid embarrassing situations.
Your child should be able to take part in recess and sports, go camping and have other overnight trips, and do all other school and after-school activities.
Standard ileostomy and your child; Brooke ileostomy and your child; Continent ileostomy and your child; Abdominal pouch and your child; End ileostomy and your child; Ostomy and your child; Inflammatory bowel disease - ileostomy and your child; Crohn disease - ileostomy and your child; Ulcerative colitis - ileostomy and your child
American Cancer Society. Caring for an ileostomy. www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/ostomies/ileostomy/management.html. Updated October 16, 2019. Accessed February 25, 2021.
Mousa H, Lu PL, Hassan M. Chronic intestinal pseudo-obstruction. In: Wyllie R, Hyams JS, Kay M, eds. Pediatric Gastrointestinal and Liver Disease. 6th ed. Philadelphia, PA: Elsevier; 2021:chap 44.
Raza A, Araghizadeh F. Ileostomy, colostomy, and pouches. In: Feldman M, Friedman LS, Brandt LJ, eds. Sleisenger and Fordtran's Gastrointestinal and Liver Disease. 11th ed. Philadelphia, PA: Elsevier; 2021:chap 117.
- Bland diet
- Crohn disease - discharge
- Ileostomy and your diet
- Ileostomy - caring for your stoma
- Ileostomy - changing your pouch
- Ileostomy - discharge
- Ileostomy - what to ask your doctor
- Living with your ileostomy
- Low-fiber diet
- Small bowel resection - discharge
- Total colectomy or proctocolectomy - discharge
- Types of ileostomy
- Ulcerative colitis - discharge
Review Date 10/30/2020
Updated by: Michael M. Phillips, MD, Clinical Professor of Medicine, The George Washington University School of Medicine, Washington, DC. Also reviewed by David Zieve, MD, MHA, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team.