For Parents of Children With Ostomies

If your child has an ostomy, you probably have many questions and concerns. When the surgeon said your child needed this surgery, your first reaction may have been, “Is this the only choice?” Your doctor no doubt assured you that the ostomy was needed to save your child’s life. You may have felt shock. You may have asked yourself, “Why did this happen to us?”

It helps to talk to a good friend, the doctor, clergy, an ostomy nurse, or the parents of a child who has an ostomy. This will 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 emotional support they need.

Your child's health care team will teach you and your child on how to care for your child's ostomy. They will be sure you have the training and supplies you need, along with support for any problems that come up or questions you may have.

Psychosocial issues

As your child begins to recover from ostomy surgery, there are many ways you can be a source of strength and support:

• Acceptance is key. Your child may be afraid that young friends and relatives won’t want to be around them. Encourage your child to talk to you about these feelings. If you are open and natural about the ostomy, they will be, too.
• Empathy. Your child needs to feel that you understand what it’s like to have a ostomy. It’s hard not to overprotect and pamper a child who is recovering from major surgery. Listen, try to understand feelings, be encouraging, and be tactful.
• If your child is very young, they will probably accept the ostomy more easily than you. Your child will grow up with it and it will become a natural part of them.
• If your child is a teenager who is facing all the problems that come with puberty and adolescence, this surgery comes at an especially difficult time. The changes in body image caused by the ostomy may make the stresses of adolescence worse. Your teenager may feel unattractive, rejected, and different because of the ostomy.

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

Your child’s ostomy care

Even a very young child can be taught to care for an ostomy. An older child can get supplies together and learn the steps of caring for the ostomy until the whole process can be done alone. You may want to use a teaching process that begins with your child helping you. Later on you can help them, then over time, stand by to help only if you are needed.

A tracheostomy involves your child's airway and 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. For children with abdominal ostomies, you’ll work with your health care team to help your child learn to take care of the ostomy and pouching system on their own. Your child may need some help and support at first. They may be unsure about how to use the new supplies, feel physically weak, and tire easily. A sense of humor and a positive attitude will help you and your family through this time.

It’s very important that your child have support and help from an ostomy nurse. This person has special training in ostomy management and the emotional needs that may come at this time of change. 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 at www.wocn.org.

Be prepared for trial and error in caring for, or helping to care for, your child’s ostomy. There are some changes that will happen in the beginning that won’t happen later. There may be diet adjustments, skin problems, pouching problems, and more. The important thing to remember is that all of these changes will become more comfortable over time.

Going back to school and everyday living

Be flexible as your child adjusts to school and everyday living. Children with a tracheostomy will require different care during school and activities than children with abdominal ostomies.

Have a plan in place in case there are problems. The school nurse should be aware of your child's ostomy and how to care for any problems that come up.

Keep supplies available at school and activities. Ostomy care supplies should include everything you use when you're at home. For example, for children with abdominal ostomies, have supplies available if the pouch leaks at school. If that happens, your child can go to the school nurse. Or you might pick up your child for a pouching system change at home, then take them back to school. One youngster tells this story: he noticed that his pouch was leaking and had stained his pants. Instead of rushing out of the class with everyone else, he calmly waited until everyone had left the room. This way, he was able to avoid embarrassment and called home so that his mother could pick him up. You may want to visit the principal, the classroom teacher, the physical education teacher, and the school nurse to explain your child’s needs.

Talk about what can be done if any problems come up while your child is away from home. A child with a tracheostomy will have different limitations than a child with an abdominal ostomy. 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. At first, it may be hard to let your child go away on their own. 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.

Talk with your child about how they’ll tell others. They may want to tell close friends and loved ones. Naturally, 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 with others, 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. You and your child are facing a new situation in your lives. If it’s approached with openness, firmness, and a sense of humor, you’ll find that a ostomy won’t stop them from taking part in life’s everyday activities.

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.