For parents of children with ileostomies
If your child has an ileostomy, 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 ileostomy 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 ileostomy. This will prepare you to help your child adjust to the ileostomy. Deal with your own feelings first, then you’ll be better able to give your child the emotional support he or she needs.
You may feel guilty or responsible for your child’s illness and surgery. These feelings are normal. You may think that your dreams have been shattered and may wonder if your child will be able to do the things that other children do. Most parents worry about their child’s life span, ability to work, adjustment to living with an ileostomy, and in later years, marriage and family. These are normal concerns for all parents facing major changes in their child’s life.
When your child is in the hospital, be there as often as possible. Being in the hospital and having surgery are frightening at any age. Your child may feel very helpless and scared at this time and needs the love and comfort you can give. You being there makes him or her feel safe.
Be prepared for how you’ll feel when you see an opening on your child’s abdomen with bowel contents running into a pouch. The first reaction your child sees from you is vitally important and must be as positive and casual as possible.
If your child has a fever or other symptoms, don’t panic. He or she will have all the aches and pains that other children have. When in doubt, call the doctor.
As your child begins to recover from ileostomy surgery, there are many ways you can be a source of strength and support.
Your child may be afraid that young friends and relatives won’t want to be around them. Your acceptance is key. Encourage your child to talk to you about these feelings. If you are open and natural about the ileostomy, he or she will be, too.
Try to understand how your child feels. Your child needs to feel that you understand what it’s like to have an ileostomy. Still, too much sympathy is not good and can take away a sense of independence. 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, he or she will probably accept the ileostomy more easily than you. Your child will grow up with it and it will become a natural part of them. For 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 ileostomy may make the stresses of adolescence worse. Your teenager may feel unattractive, rejected, and different because of the ileostomy.
You may notice short-term changes in your child’s behavior. Your acceptance and support are very important. Try to understand the feelings and listen to the complaints. Give encouragement and try to help your child find realistic solutions to his or her problems. There are online resources that may be helpful, too (see To Learn More). But if problems persist, 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.
Your child’s ileostomy care
Take an interest in your child’s ileostomy care. If he or she is old enough, you’ll need to help your child learn to take care of the ostomy and pouching system on his or her own. Your child may need some help and support at first. He or she may be unsure about how to use the new supplies, feel physically weak, and tire easily.
Even a very young child can be taught to empty the pouch. An older child can get supplies together and learn the steps of changing the pouch, 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.
It’s very important that your child have an ostomy nurse to help out at this time. 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 ileostomy. 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 new changes will become more comfortable over time. A sense of humor and a positive attitude will help you and your family through this time.
Going back to school and everyday living
Be flexible as your child adjusts to school and everyday living. Have a plan in place in case there are problems, for example, 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 call 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 nurse to explain your child’s needs.
You’ll find that your child can take part in most sports, go on overnight trips, camp, and, in fact, enjoy the same activities as before. At first, it may be hard to let your child go away on his or her own. Talk about what can be done if any problems come up while your child is away from home. If you can help your child know how best to handle any problems that may come up, he or she won’t need any “special” treatment or seem different from any other children.
Talk with your child about how they’ll tell others about the surgery. He or she 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, too. For example, cleaning up the bathroom after ileostomy 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 an ileostomy won’t stop your son or daughter from taking part in life’s everyday activities. Parents find that a healthy child with an ileostomy can once again be a happy child.
Being around other kids with ostomies can also be a great help. Each summer a camp called The Youth Rally, for young people ages 11 to 17 with ostomies or any other bowel or bladder changes, is held at a US college campus. 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.
- What is an ileostomy?
- How your digestive system works
- Types of ileostomies
- Managing your ileostomy
- Choosing an ileostomy pouching system
- Emptying and changing the ileostomy pouching system
- Ordering and storing ileostomy supplies
- Caring for an ileostomy
- Avoiding and managing ileostomy problems
- If you are hospitalized while you have an ileostomy
- Living with an ileostomy
- Telling others about your ileostomy
- What to wear when you have an ileostomy
- Eating and digestion with a ileostomy
- Returning to work after getting an ileostomy
- Intimacy and sexuality when you have an ileostomy
- Playing sports and staying active with an ileostomy
- Traveling when you have an ileostomy
- For parents of children with ileostomies
- Getting help, information, and support
- To learn more
In its original form this document was written by the United Ostomy Association, Inc. (1962-2005) and reviewed by Jan Clark, RNET, CWOCN and Peg Grover, RNET. It has since been modified and updated by:
Last Medical Review: December 2, 2014 Last Revised: December 2, 2014