An ostomy is a surgically created opening in the intestine (bowel) connected to the skin. The opening is called a stoma. When your child has an ostomy, stool (poop) from the intestine passes through the stoma and out of the belly into a bag instead of out the anus.
The most common types of ostomies are ileostomies and colostomies. The type your child will have depends on where the opening is made in the intestine. Your child’s surgeon and nurse will talk to you about the type of ostomy your child needs.
Ostomies are used to get around a diseased, damaged, or blocked part of the intestine. Ostomies might also be done above an area of intestine that is healing after an operation. Ostomies can also help prevent a disease, illness, or a blockage from becoming more serious.
Your child may need an ostomy due to necrotizing enterocolitis, Hirschsprung’s disease, problems with the anus or rectum, or inflammatory bowel disease (such as ulcerative colitis and Crohn’s disease).
To understand ostomies, it’s helpful to understand how digestion works
The small intestine is where most digestion takes place. Vitamins, minerals, proteins, fats, and carbohydrates get absorbed into the body.
An ileostomy is a surgical opening in the small intestine (ileum). An end of the ileum is brought out to the surface of the belly and stitched in place.
The stool that comes out of an ileostomy stoma flows out continuously and is usually liquid. It can be irritating to the skin if it leaks around the opening.
A colostomy is a surgical opening in the large intestine where an area of the colon is brought out to the surface of the belly and stitched in place.
With a colostomy, there is a thicker, pastier stool than an ileostomy. How the thickness of the stool depends on where in the colon the colostomy is created. For example, a colostomy at the beginning of the colon has looser stool. The reason is that it does not travel through the entire colon where water gets absorbed to make the stool thicker.
Your child will need to wear a pouch or bag — this pouch collects their stool. Care for an ostomy includes:
Our nursing staff will teach you how to care for the ostomy and how to change the pouch. You should receive ostomy education pre-operatively and in the hospital during admission. Also, we will do a follow-up visit two to four weeks after the operation to make sure everything is going well.
Your child’s doctor or nurse will talk with you about what activities are safe for the first four days after surgery. After that time, your child should be able to do most activities, like swimming, showering, and going to the beach. Infants can lie on their stoma and can submerge in water one week after surgery.
Check with your child’s doctor or nurse if you have questions.
Your child should be able to eat and drink most foods. It’s important for your child to eat and drink the right amounts of certain foods. Your child’s nurse will go over the “Ostomy Diet Guidelines Family Education Sheet” with you.
If your child has an ileostomy, it’s very important for them to drink lots of liquids, like formula, milk, and juices, to avoid getting dehydrated. These liquids are better than water or soda.
Your child should not have certain things that cause gas in the pouch. Do not give your child carbonated drinks (like soda), straws, or chewing gum.
Several medical equipment supply companies will deliver ostomy supplies directly to your home. A discharge-planning nurse from Boston Children’s will contact a supply company to order what you need. The supply company that is used depends on where you live and the type of health insurance that you have. Your nurse will also set up a very important follow-up visit.
After the first delivery of supplies, you can contact the company directly for more supplies. Be sure to plan accordingly so you do not run out.
In some cases, a nurse from Boston Children’s will arrange for a visiting nurse to come to your home. The visiting nurse will help you and answer any questions you may have.
Important tip: Always carry an extra pre-cut pouch in case a pouch leaks when you are not at home.