When You First See Your Child’s Stoma

It can be shocking to see your child’s stoma for the first time – it is, after all, an open wound on your child’s body! But it is important to recognize that while you are looking at you child’s stoma, your child is looking at you. Most nurses and doctors encourage parents to talk to their children about their stoma in a positive and educational way. Below are some ways you can prepare yourself to see your child’s stoma and react positively. You can also watch a video where we go over these points:

Do your homework – Prepare for seeing your child’s stoma by educating yourself about lifestyle after ostomy surgery. Look at pictures of healthy stomas (especially recently created stomas – YouTube videos of people right after surgery can help with that). Read blogs by people who have stomas. Learn about how your child’s anatomy will work, research any limitations your child may have, and remind yourself why it was necessary for your child to have ostomy surgery. Doing your homework before seeing your child’s stoma allows you to have your own initial reaction in private. Some people who have ostomy surgery have a “mourning process” about having their anatomy change. Learning ahead of time about stomas will help you begin this process in advance so you can be more ready for the time after-surgery. This will allow you to be a pillar of strength for your child when he or she needs it the most.

When you see your child’s stoma – Try to react in a positive way. My stoma nurse looked at my stoma, and the first thing she said was “Oh, that’s a beautiful stoma. The surgeon did a great job on it!” This made me proud to be an owner of a “beautiful stoma.” If you can say something positive to your child, he or she will be able to see the stoma as a good a thing as well.

Keep talking – Being able to remind your child and talk to them about how the stoma was a life-saving or life-bettering procedure is useful. You can ask your child what things he or she wants to do when they’re out of the hospital, and know that your child will be able to do everything he or she could before ostomy surgery, and possibly more!

Encourage your child to be educated about their new way of life – Be supportive and encouraging when your child wants to ask questions about his or her new way of life. Follow your child’s lead about how involved they’d like to be: if they want to just know the bare minimum at first, just enough for them to stay healthy, that’s fine – they may be going through a mourning process as well. But gently encourage your child’s ownership of their health – don’t give up on offering information to them about their condition. This will help your child feel in control and be better prepared to talk to doctors, adults and peers about their illness and surgery if they would like to, and better prepare them for their adulthood.

Suggest naming the stoma – Many kids and adults name their stoma in order to come to peace with their surgery and new “addition.” This allows the individual to separate the stoma from their own being. It also allows the individual to communicate any stoma issues while in public. Many people would, for example, prefer to say “Trixie is talkative today,” rather than “My stoma is being loud and gassy today,” (Trixie is my stomas name!). It’s a code in which you and your child will be able to communicate. If your child would prefer to talk about the stoma without naming it, that’s okay too!

Continue to treat your child like a kid who can have fun, be exploratory, and live a normal life! Remind your child that they can still play the sports they like, participate in fun activities, and live a typical kid lifestyle after ostomy surgery!