Help me to bring young ostomates together!

Hello, my name is Izzy, and my daughter Tui is five years old. She received her ileostomy bag on March 28th. When I asked our wound nurse about organizations that cater to younger kids, she said, unfortunately, there is not one—they seem (from what I've learned) to cater to the older kid crowd. While I would love for my daughter to meet someone older to show her that she can live a normal life even with a bag, I think it would do wonders for her mental wellbeing to be surrounded by kids of similar age who are navigating life at the same stage she is and to see that being different doesn't mean she's alone. Unfortunately, she has had to face the cruelty of kids when they found out, and I ended up pulling her out of class due to the constant bullying. Because of this, she thinks being different means she's defective or less than and doesn't deserve friends. But what really broke me was when she looked at me with tears streaming down her cheeks and pleaded, “Please, can I go back to being Tui—I miss the old Tui; she was better.” This gave me the determination to start an organization centered on kids of similar ages. I am contacting you because, honestly, I am out of my element and have no clue where to even begin. I was hoping you would be able to give me tips, points, where/how to start, any help really would be greatly appreciated! Thank you for taking the time to read my long message, and I hope to hear back from you!

Smile big,

Izzy and my brave daughter Tui

Hello and welcome.

You are embarking on a noble cause.  It would be so very good for your family and Tui to meet children with an Ostomy.  It's tough for adults to wear a bag everyday.  Can't imagine the trauma a child would go through.  I'm assuming Tui's ileostomy is permanent?  

If you don't find children to form a group, you and and older adults might be just as good.  Your daughter would be able to relate with others who go through the same challenges.  

You might encourage Tui to post her thoughts and questions on this web site.  Everyone here has, or had an ostomy.  We "get it."  

Good luck and give her a  hug for us 

We have a summer camp for ostomy kids from all across Canada.  Maybe you have something the same.

Hi! She's been around older kids, and I think it's so beneficial, but she gets sad that no one like her is different like her—she feels lonely. So, I think it would be fantastic for kids of similar ages and stages in life to navigate this new normal together!

And she's 5, lol. She's only serious on her terms, not when I ask. 🤣

I'll look into that! Thanks for the idea!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Also in Canada, and perhaps additional health issues, but maybe you’ll find some resources/inspiration from her info: 

https://www.instagram.com/kylact?igsh=Z2JwemY5ZGd0OWcx

For sure there are others experiencing the same thing as you — they are equally in despair about their kids. If you want such a group then you should start one. Determine an age range, come up with a name (e. g. "Power Alliance"). An idea may be to create a comic strip made of super heroes: Comet (colostomate), Ione (ileostomate),  and Uranus (urostomate) with special powers — colostomates, Ileostomies, and urostomates would all have different powers, originating from different places in the Solar System. At each meeting you could have the kids create an adventure for the Power Alliance super heroes. Create a flyer and give copies to wound care nurses, surgeons that perform ostomies, rehab facilities, etc. All you need is one other kid to get started. Just an idea but the ball is in your court.

Hi Izzy and Tui, there is another site, uoaa.org, that is kind of the official ostomy site of the USA, and they have a kids camp every year in different locations. Good luck.