My son’s first Ostomy Day

My son will grow up in a different world. He will grow up in a place where having an ostomy is a normal thing. I mean, 1 out of his 2 parents will have one!

waylon ostomy 2He’ll know what a stoma is. He’ll understand there’s a difference between a colostomy and an ileostomy. He will celebrate World Ostomy Day. He will probably at some point blurt out to some stranger that mommy poops in a bag. He will know that an ostomy is not disfiguring. It is not gross. It is not debilitating. And he will know that it saved his mom’s life.

I pray that in knowing these things, he will understand that sometimes people are different from us and that’s okay. I hope he will always remember that you don’t know what’s going on in someone’s life below the surface, and that he will have patience and show kindness to everyone.

I hope some day he will meet someone with an ostomy or who may need to get one and he will be able to relate to them and let them know that it’s not something to be afraid or ashamed of. And if someday when he has a wife, if she ever has to deal with anything remotely similar,  I pray that he will support her and stand by her in the same way his father has stood by me.

waylon ostomy 1And while this is the world my son will grow up in, it’s not the world most of us do. Most people don’t have someone who can tell them that ostomies are not just for the old, or that they don’t make someone less of a person. We don’t have someone who is willing to show us that they are different and to let us know that it’s okay. That’s why when those of us who need an ostomy are faced with having to get one, we get scared. We run away. We learn to live with the pain. All because we are worried that our bag will show our weakness and others will think we are gross or weird.

But this is what I think the point of World Ostomy Day is: to make this world more like my son’s world. To help make it a world where our differences are celebrated. To let everyone out there know they are not alone and that they will get through this. And there’s a whole community of people out there who are going to help them do it.

8 thoughts on “My son’s first Ostomy Day

  1. Danielle

    Hi Stephanie,
    I’m 24 and I got a colostomy this past April that will officially become permanent, probably within the next month. I’ll have been married a year on November 1st and I’ve thought many times about how when my husband and I start having kids they’ll grow up knowing all about people with Crohn’s disease, ostomies, and invisible illnesses, and that makes me so excited for them. It was so encouraging to read your post and feel like someone else shares my thoughts. Here’s to raising compassionate, loving children!

  2. david gardiner

    I’ve had my colostomy for almost 8years now & I’m a very fit and active 70 year old , & I volunteer at our local Ostomy Association every Monday. it brought a ‘ tear to my eyes ‘ to read your letters !

  3. Kim

    I want to thank you so much for your blog. I am 35 and have had my permanent ileostomy from crohns for a year. I was just getting my supplies for the next month and noticed everyone else was much older than me in the store, I went to the car and told my husband it made me kind of sad. I have had others tell me I’m too young to have to deal with this. But then I think about you and your blog and I told my husband “this girl encourages me and keeps me positive” it means so much to me to see someone else my own age with my disease & my appliance, thank you so much for having the courage to share.

    1. monica

      Hello. I’m also 35 and have a permanent illeostomy. Didn’t know I had crohns until I fell pregnant with my son 14 years ago. I’ve lived with the bag for 13 years and there are so many our age with a stoma. U are not alone xxxx ❤️❤️

  4. Tracie williams

    My daughter is 17 she has crohns disease. She has had may surgeries and has about lost her life to crohns disease. She is scheduled to have surgery and have a permanent ostomy placed. She is at unc chapel hill. A doctor here told me about your blog and asked me to reach out to you. My daughter is wanting to talk to someone who has lived with an ostomy to see how it has changed there lives. She is very scared and tired of all the struggles. If you have a moment and could reach out to her I would appreciate it.

  5. Laura

    Stephanie, I think what you are doing is fantastic and brave. My children were 6 and 8 when I got my ostomy, so there was an adjustment period, but I feel the same as you now…my children will know what it is to know and love someone that has faced the battle, survived, and contributed to the world. They will know that all of us are different and have different stories and all have something to give this world….different does not equate worse. When others are looked upon with kinder, less judgmental eyes…the world is a better place. You are contributing to that. Thanks for sharing


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