It's estimated that around 1 in every 500 Americans is living with an ostomy. They're relatively common, but if you or one of your children has to undergo an ostomy surgery, there may need to be some adjustments. For one, kids tend to notice when something in the family changes. And, if they don't understand what's happening, especially regarding ostomy care, they may feel anxious or worried. By talking openly about ostomies, you can help your child process the situation and reduce fear, while strengthening your relationship through trust and reassurance.
In this guide, we'll go over tips for talking to children who have an ostomy themselves, along with explaining an ostomy to your child if you have one. You can expect to learn things like:
- Open Communication is Crucial. Talking honestly about ostomies helps children feel safe, reduces fear, and builds trust.
- Use Age-Appropriate Explanations. Tailor conversations to a child’s developmental stage using simple language, books, or visual aids.
- Normalize Life With an Ostomy. Emphasize strengths, hobbies, and routines to show that the ostomy is just one part of life.
- Encourage Questions and Validate Feelings. Children may have worries or curiosity; answer honestly and acknowledge emotions.
- Involve Children in Care When Appropriate. Small, age-appropriate tasks help kids feel empowered and in control of their ostomy.
- Discuss Your Own Ostomy Openly. Parents with an ostomy should reassure children, explain it calmly, and maintain ongoing conversations to normalize the situation.
Why It’s Important to Talk About Ostomies With Children
Talking openly about an ostomy with children is essential for both their emotional well-being and understanding of the medical situation. When children are left in the dark about their own medical needs, they may fill in the gaps with fear, misinformation, or feelings of shame. When they aren't sure what's going on with a parent who has an ostomy, they may grow up with misunderstandings or misconceptions about the situation. Some of the most notable reasons that discussions about an ostomy are important include:
- Explaining what an ostomy is and why it’s necessary can ease uncertainty and help them feel safer.
- Talking about it openly shows them that it’s a medical tool, not something to be embarrassed about, helping them accept the ostomy as part of life.
- Opening communication helps children feel safe, allowing them to reduce the risk of misunderstanding and emotional distress.
- If a parent has an ostomy, discussing it helps children understand the situation, making them more empathetic and supportive.
- For children with an ostomy, learning about their care gradually helps them feel in control, proud, and capable, which can positively impact self-esteem.
How to Talk to a Child Who Has an Ostomy
If your child has an ostomy, one of the most powerful tools you can give them is clear, compassionate communication. Children are naturally curious, and when they don’t fully understand what’s happening to their bodies, they may feel anxious, isolated, or even ashamed. Luckily, there are plenty of ways to provide ostomy support and reduce their fears while normalizing their experience. The key is framing conversations in a way that helps your child feel confident and secure in their everyday routine. Here are a few tips to help prepare you to talk with your child about their ostomy surgery.
Use Age-Appropriate Explanations
The way you explain an ostomy will depend on your child’s age and developmental stage. Younger children benefit from simple language like, “This helps your tummy feel better and lets your body go to the bathroom differently.” The key is finding ways to discuss the ostomy bag without making them feel like something is wrong.
For older children, you can add more detail, explaining how the surgery works and why it was necessary. A pediatric ostomy nurse can help you find the right words or give you recommendations on some supportive resources. Using dolls, picture books, or drawings can also make the explanation more concrete and less intimidating.
Focus on Strengths and Normalcy
The biggest worry that children may have about their ostomy is that it makes them "different" from their friends. Reassure them that while they have an ostomy pouch, they can still go to school, play sports, and do almost everything they enjoyed before. Emphasize their strengths and remind them of the things that make them special beyond their ostomy. Normalizing the device helps them see it as just one part of who they are, not something that defines them. You may also have a conversation about whether or not they'll tell others and, if so, how to approach the conversation.
Encourage Questions and Feelings
Children are naturally curious and will likely have a lot of questions about living with an ostomy. Try not only to encourage these questions, but also to anticipate what they may want to know. Some examples of basic questions you may hear include things like:
- “Why do I have to wear this pouch?”
- “Will the other kids laugh at me?”
- “Can I still go swimming or play soccer?”
- "Do I still get to play in recess activities?"
- “What happens if my bag leaks at school?”
- “Will I always have this, or will it go away one day?”
- “Do other kids have an ostomy too, or just me?”
- “Can people see it through my clothes?”
- “Does it make me weird or different?”
Your child may also experience a range of emotions as they recover from surgery. They may worry about how people will react or how things will be different when returning to school. The best thing you can do is to utilize pediatric ostomy resources to get educated and ask your doctor about any questions or concerns you may have. Your child may need some extra care during this time, and if you notice ongoing changes in behavior or mood, it may be helpful to talk to a mental health professional.
The United Ostomy Associations of America (UOAA) also has several great resources to help you understand how an ostomy may affect your child's life and how to find age-appropriate language. You can find information and support from UOAA here.
Involve Them in Care
As your child adjusts to life with an ostomy, involving them in their care can be a powerful way to build confidence and a sense of control. Start small and keep it age-appropriate. For younger children, this might simply mean letting them hand you supplies, watch you change the pouch, or choose a fun bag cover or pouch sticker. These little steps help them feel included without overwhelming them.
As they get older, you can gradually introduce more responsibility, such as helping clean the skin around the stoma, practicing how to empty the pouch, or learning how to pack a small “emergency kit” for school or outings. By turning ostomy care into a shared process, children will see their ostomy as just another part of their routine.
How to Talk to Your Child About Your Ostomy
On the other hand, when you’re the parent living with an ostomy, talking to your child about it can feel daunting. You may worry that talking about your stoma could scare them or complicate things even more, but doing so can actually have the opposite effect. Remember, children are perceptive and can be pretty blunt. Trying to hide your ostomy may only cause more confusion, while talking about it can help normalize the situation. Here are a few tips for how to speak to your child about your ostomy.
Be Honest Without Overwhelming
The most important part of communication is tailoring your explanation to your child’s age and level of understanding. For younger children, simple statements are usually enough to reassure them. Older children can handle more detail (explain why you had surgery, what your ostomy does, or the type of ostomy surgery), but keep the focus on clarity and comfort rather than complicated medical terms. The goal is to inform and reassure, not to overwhelm them with too much information at once.
Reassure Them About Safety and Normalcy
Children may worry that your ostomy means you are very sick or that something bad could happen to you. Reassure them that your ostomy is helping you stay healthy and that it doesn’t change who you are as a parent. Highlight that you can still participate in everyday activities, play, and spend time together without any issues. This way, your child will feel comforted without worrying about significant changes in the future.
Don't Be Afraid to Show Them Your Ostomy
Depending on your child’s age and comfort level, consider showing them your ostomy pouch in a calm, matter-of-fact way. Demonstrating that it’s just a tool to keep you healthy can reduce fear and mystery. This can be as simple as letting them see the pouch or explaining what happens during a pouch change without making it a big event.
Encourage Open Conversation
Finally, always make sure your child feels comfortable enough to ask you questions if they want. Their curiosity isn't meant to be prying; they're just learning about how things work, and that's okay. Try to answer them as honestly as possible while reassuring them in the process. Maintaining an ongoing conversation about your ostomy rather than one big talk can help them process information at their own pace.
Regardless of whether you have a colostomy, ileostomy, or urostomy, having the right ostomy products on hand can make a world of difference. That's why Byrram Healthcare carries high-quality products from leading manufacturers that can be discreetly delivered to your door. Start your online order of ostomy products today, or contact us for more information.
