An ileostomy is a surgically created opening of the small bowel (or ileum) through the abdominal wall. This opening on the abdomen is called a stoma. An ileostomy is needed when the large intestine (colon) can not be used and must be bypassed or removed. The work of the colon is to absorb water and store stool (poop or feces). Stool coming from the colon is firm. Stool coming from the ileostomy is thin or thick liquid, so careful attention must be paid to the care of the skin around the stoma.
What is an ileostomy?
An ileostomy is a surgically created opening (stoma) in the small intestine that goes through the abdominal wall. A child needs an ileostomy when the large intestine (colon) — which absorbs water and stores stool — needs to be bypassed or removed.
How should an ileostomy be cared for?
As soon as possible, involve your child in caring for his or her own ileostomy. Children as young as three may offer help by handing you supplies or actually doing some of the care. By age six or seven most children should be able to assume full responsibility of routine care of their ostomies.
Ileostomy drainage is continuous and watery, so your child will need to wear a bag at all times. The ileostomy pouch must be changed when leaking or every three days. Since everyone's ostomy is managed differently, while you and your child are in the hospital, we will work with you to tailor the care to your child's special needs and developmental stage.
Ileostomy pouch changing instructions
The pouch should be emptied when 1/3 to 1/2 full of stool or gas. Full pouches and/or gas will cause pouch to come off sooner. If the pouch is leaking it should be changed as soon as possible. At minimum, the pouch should be changed every three days.
Living with an ileostomy
No children like to be different from their friends and classmates. A child with an ileostomy may struggle with embarrassment, shame, frustration or any of a number of other emotions. It's important to remember — and to remind your child — that he can do most things other children can do.
Here's what you need to know:
- Activity: your child may continue with normal activities — including swimming and lying on his abdomen — without harming the stoma. Have him avoid rough contact sports and heavy lifting.
- Eating: make sure your child chews his food slowly and completely; cut food into small pieces. A large piece of undigested food can block the intestine. In addition, because a lot of water can be lost through the ileostomy, make sure he drinks plenty of fluids to replace it. Your child should be urinating or needing diaper changes regularly.
- Clothing: your child doesn't need to wear special clothing. Infants and small children may need one-piece outfits so they can't pull their appliance off.
- Bathing: your child may bathe with the appliance on or off.
- Travel: when you travel, always take enough supplies and extra clothing to last the entire trip. If you fly, carry on at least half of the supplies, in case your luggage gets lost.
- School: to help your child feel comfortable at school, you'll need to tell the school principal, school nurse, and a few teachers about your child's ostomy. Your child shouldn't be treated any differently from any other child, but he'll have a few special needs, such as unlimited use of a private bathroom and shower. Give your child's school nurse ostomy supplies and instructions for changing the appliance. Keep a complete change of clothing at school. Talk to your child's doctor or nurse if you need help addressing your child's needs at school.
- Support group: the United Ostomy Association a volunteer-based health organization that provides education and support to people who've had ostomies, has many local chapters. Visit their Web site to locate your local chapter.
- Accessory equipment: talk to your child's doctor or nurse to find out if your child might need or benefit from some of the other ostomy supplies that are available, such as:
- Closed-end pouches without clamps for two-piece systems can be changed and thrown away instead of being emptied; some families like to use these if their child is going to a special event.
- Filters or bags with filters can help with excessive gas.
- Ostomy belts clip to the appliance and can provide added support.
- Pouch covers, which come in a variety of fabrics and patterns, are made to fit over the pouch. They're available for older children, and can offer an added sense of security for children who are sensitive about their friends seeing the pouch.
When to call the doctor
You should call your child's surgeon's office (at Children's Hospital, call 215-590-2730) if:
- The stoma looks blue, purple or black (A "beefy red" stoma is normal.)
- There's a lot of blood mixed in with the stool in the pouch
- The stoma sticks out a lot or sinks below skin level
- You empty a larger-than-usual amount of liquid stool out of the stoma
- Your child hasn't passed stool through the stoma and has crampy belly pain and vomiting
- The skin around the stoma is open and broken
- You have any questions or concerns
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