Talking to Your Kids About Ostomy Surgery

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When I had my ileostomy surgery, my kids were eleven and eight years old. I was quite open with them about my surgery and what was involved, but I know that it can be a challenge for some parents.

In this article, I hope to share some ideas on how to approach this topic with young kids so you are both comfortable talking about the surgery and the life that follows it.

Become Informed Before Trying to Explain It

Kids often require certainty and reassurance that things will be ok, but if you aren’t able to answer their questions or give them the wrong answers, then they may become confused and frightened about the situation.

Be an educated ostomate and learn about your surgery. When you speak to your surgeon or ET nurse, ask questions that you’d like answered, for example:

  • Will this surgery affect my work or employment?
  • How will this change my sex life?
  • Will my diet need to be modified?
  • How long will my recovery take?

But also ask questions that would be important to your child, too:

  • Will I still be able to spend time in the family pool?
  • Are there any concerns with playing ball in the backyard?
  • Will I need assistance/Where I can find assistance to take care of my young child while I recover?

When you are prepared, you’ll be able to answer your child’s questions with some degree of confidence and accuracy.

Use Images, Illustrations, Dolls, Etc.

Sometimes, explaining your surgery isn’t the easiest thing in the world to do, especially if your child is very young.

I would suggest searching for illustrations or non-graphic videos online that might help to explain how your digestive system works and what changes you’ll be expecting with your body.

You can even find special stoma teddy bears that can be a useful tool to help kids be more comfortable with your surgery!

ostobear stomawise site
“Ostobears” are available at www.stomawise.co.uk

Just remember to be appropriate for your child’s age. My daughter (who was 11 at the time of my surgery) isn’t squeamish, so she had no problems seeing real photos of stomas or looking at mine after surgery, but your child may be too grossed out by some things; use your judgement, and make use of media that you think your child will be most comfortable with.

Use Humor

Having surgery isn’t something we do for fun, and kids often understand that mommy or daddy (or grandma or grandpa) are having surgery because they’ve been sick or hurt in some way.

For many kids, this can cause a great deal of stress and worry. I find that humor is often a great way to not only distract them from the seriousness of such a surgery but also to make them feel more comfortable because they see you are not stressing out (so much).

No colon man
My daughter painted this for me after my surgery; the home care nurses got a kick out of it.

I had a loud stoma following my surgery, and I could either laugh about it or become upset and frustrated about it. I don’t think that becoming angry or upset about “stoma farts” would do my kids any good, so we laugh about it! “Oops sounds like someone should learn some manners!”

Marvel characters ostomy bag
If your kids like comic characters, find a pouch cover full of them!
I also use humor as a strategy for coping with my own chronic illness.

Surgery Can Be Traumatic for Both You and Your Child

Not everyone going through life-changing surgery will be totally accepting of it at first, and our kids may not know how to deal with the emotions or the stress that surgery brings along with it.

You may decide to seek counseling for you and/or your child, and this is nothing to be ashamed of at all.

The years of being a ghost with Crohn’s took a toll on my family, and we began to see someone about it to help unpack those feelings of guilt, anger and stress.

Depression can also come with having a chronic illness like IBD, so know when and where to find help.

Things Become Normal Pretty Fast

As you cruise through your recovery and start doing more of the things you love, your stoma will likely be less of a talking point in your home.

The time this happens can certainly depend on whether you’ve had any ongoing complications, but I’ve found that these days stoma talk isn’t usually heard around the house anymore (despite my persistence in wanting to talk about ostomies all day!).

As my daughter got older, she has become more comfortable about talking to her classmates about my ostomy, and there’s no embarrassment when discussing it.

You Are Their Role Model

While I’ve done my best to list some ways on how to explain ostomy surgery to kids, I believe the most crucial element is the vibe you put off.

I feel that kids can pick up on the smallest bit of negativity off their parents, and if you haven’t accepted your surgery, then your kids will have a harder time doing so.

Build confidence whenever you can, and openly discuss your feelings with your child – the relationship you build can most definitely be strengthened after living through such a challenging time.

Question: What tips can you share about talking to your kids?
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