For Parents of Children with Ostomies

If your child has an ostomy, you probably have many questions and concerns. You may wonder how to take care of your child’s ostomy, how your child will feel about having an ostomy, and how it will impact your child’s life.

Caring for your child’s ostomy

Ostomy care for children is similar to that for an adult. Make sure that you understand the specific needs of your child which might depend on their age, the type of ostomy they have, and the reason for the ostomy. Also, specific pouching systems and products are made to fit your child’s size.

If your child has a colostomy, ileostomy, or urostomy, the health care team will teach you and your child how to take care of the ostomy and pouching system. They will be sure you have the training and supplies you need, as well as support for any problems that come up or questions you may have. Even a very young child can be taught to care for their ostomy. An older child can gather supplies, and learn the steps of caring for the ostomy so they can learn to complete the whole process on their own.

You might want to teach your child by letting them help you. Later on, you can help them, and over time, be there to help only if you are needed. This will help your child gain confidence and become independent.

A tracheostomy will require very different care than other types of ostomies. You will probably have a home care nurse to help once your child is at home.

You and your child may need to be flexible as you adapt to the ostomy and other changes that your child’s illness might cause. There may be diet adjustments, skin problems, pouching problems, and more. Remember that adapting to these changes will become easier over time.

Make sure that you and your child have the support you need to deal with an ostomy. An ostomy nurse can be an important resource. An ostomy nurse has special training in ostomy management and the emotional needs that come with having an ostomy. To find an ostomy nurse in your area, call the Wound, Ostomy and Continence Nurses Society at 1-888-224-9626 or visit their website or contact the United Ostomy Associations of America (UOAA) at ostomy.org.

Psychosocial issues

As your child begins to recover from ostomy surgery, there are many ways you can support them:

• Acceptance is key. Your child may be afraid that their friends and relatives won’t want to be around them. Encourage your child to talk to you about their feelings. If you are comfortable talking about their ostomy, they may be, too.
• Empathy. Let your child know that you understand that their ostomy is a big change. Try not to overprotect and pamper your child as they recover from surgery. Listen, try to understand and accept their feelings, and let them know you’re there to support them.
• If your child is very young, they might accept their ostomy more easily than you. If they need to keep their ostomy as they get older, they will likely learn to see it as a part of them.
• If your child is a teenager, this surgery comes at an especially tough time. The changes in body image caused by the ostomy may make the stresses of adolescence worse. Your teenager may feel unattractive and different at a time when body image and social acceptance are especially important. Talking with another teen who has an ostomy may also be a source of support.  The UOAA has a Pediatric/Adolescent Support Group and other resources that are age-specific.

If your child is having problems such as changes in behavior, falling grades, irritability, or loss of interest in activities, talk with your child’s doctor or ostomy nurse about getting help from a mental health professional. There are also online resources that may be helpful.

It can help to talk to a good friend, doctor, clergy, an ostomy nurse, or the parents of other children with ostomies. This can help prepare you to help your child adjust to the ostomy. Deal with your own feelings first, then you’ll be better able to give your child the support they need.

Going back to school and everyday living

Returning to school with an ostomy can be a challenge for many young people. They are likely worry about what to expect, how people will react, and leaks. You can help your child be more comfortable in many ways.

All children with ostomies will need an ostomy care plan in school. But children with a tracheostomy will have different care needs during school and activities.

As you prepare for your child to return to school, be sure to let the school nurse know that your child has an ostomy and how to care for any problems that come up. You also may want to visit the principal, the classroom teacher, and the physical education teacher to explain your child’s needs.See if your child needs a 504 plan or IEP. These plans help make sure that your child has access to any accommodations they might need, such as:

• Help from the school nurse when they need to empty or change their pouch
• Access to a private bathroom where they can take care of their ostomy
• Approval to leave class when they need to empty their ostomy
• A secure place to keep their supplies and an extra set of clothing.

These plans can also help make sure that a trusted adult can help your child when needed.

Keep supplies available at school and after-school activities. Ostomy care supplies should include everything needed to empty the ostomy and manage leaks.

Ask your child’s cancer care team if your child has any activity restrictions. Most children with an ostomy can do the same activities as other children in their classes. This includes sports, swimming, gym class, and recess activities.

Work with your child to figure out the best way to prevent leaks from their pouch. This could mean emptying their pouch before activities. Talk to your child’s cancer care team or ostomy nurse about the best supplies for activities and what will be easiest for your child.

Talk with your child about how to handle problems that come up while away from home. Depending on the type of ostomy and age of your child, they can usually take part in most sports, go on overnight trips, camp, and enjoy the same activities as before. If you can help your child know how to best handle any problems that may come up, they won’t need any “special” treatment or seem different from any other children.

Be flexible as your child adjusts to school and everyday living. Talk with them about their concerns and how they might deal with them. Have a plan in place in case there are problems.

Talk with your child about how they’ll tell others. They may want to tell close friends and loved ones. People will be curious. Once the surgery is explained, chances are your child will be accepted as before. Your child is likely to repeat what you say. If you talk about the surgery in a natural way, your child will too.

Remind your child to think about others. For example, children with a tracheostomy may need to clear secretions often, especially if they are in close contact with other children. For children with abdominal ostomies, cleaning up the bathroom after ostomy care is important.

Find ways for your child to be around other kids with ostomies. This can be a great help. There are summer camps for children with ostomies.

• The Youth Rally is a camp for young people ages 11 to 17 who have abdominal ostomies or any other bowel or bladder changes. Planned learning sessions on self-esteem, body image, hygiene, and ostomy issues, plus discussion sessions, craft projects, tours, and sports are offered. Visit www.youthrally.org for more information.
• Champ Camp is a camp for children who have tracheostomies and children who need respiratory (breathing) assistance. Campers can have full participation in camp events, including outdoor activities and sports. Visit www.champcamp.org to learn more.