It is difficult to understand what it’s like to live with an ostomy, or counsel someone on what to expect, if you’ve never had one yourself. With this challenge in mind my son Tyler and I created Project WOW (Wear an Ostomy for the Weekend) and offered it to attendees at the Fall 2015 ImproveCareNow Community Conference, with the goal of helping people gain some perspective by “walking in patients’ shoes” for the weekend. Recently, at the Spring 2017 Community Conference, we offered Project WOW again, with a few new twists.

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As we offered Project WOW 2.0 to the ImproveCareNow Community, we had two main goals: 

  1. Increase awareness of what patients go through when wearing an ostomy – we offered applesauce this time, for people experience the feeling of a full bag.
  2. Increase awareness and understanding of some of the daily challenges. Such as: How do I put it on? Do I sleep with it on? Will it leak if I sleep on it? How do I shower with it? How do I exercise with it? What if it leaks?

We surveyed participants and here’s what we learned:

100% of those surveyed said YES they liked being a part of this project and 100% said they'd recommend this project to a friend. 93% felt the project helped them gain a better understanding of what a patient goes through, and 7% said they were unsure because they didn’t have to undergo (and recover from) surgery or have a real stoma.

Participant reflections:

Good to have some sense of what patients’ experience

I was initially a little reluctant

The adhesive was very mildly irritating

This project helped me appreciate the daily struggles

I can relate to what children say about how uncomfortable it is and I noticed how comfortable I was wearing it at ICN, knowing that I was around an accepting community

The experience did get me thinking about how it must really feel like to someone who has to wear it for real

I wasn’t feeling well and ultimately decided I didn’t want to wear the bag but that got me thinking about how patients don't have that choice

I wondered what the hotel cleaning staff might think if they saw the ostomy bag in the bathroom trash can, and was worried that they might feel uncomfortable seeing it

It was really powerful to wear this and think about what some patients may be going through

I feel good about participating so I can better educate patients


 Tyler and I both felt that Project WOW was nothing short of success! We accomplished the two goals we set out to meet and once again learned along the way. We hope to continue to offer projects like this in the future. A couple ImproveCareNow centers have asked for our materials so that can replicate the project locally. Spreading awareness to others is always good!

We want to thank ImproveCareNow for helping us bring this project to life for a 2nd time! And thank you to all the participants for being willing to step outside your comfort zone, wear an ostomy bag and share your reflections! Together we learned a lot about just a few of the challenges patients wearing ostomies may face, and gained some insight by wearing a bag for the weekend! If you are interested in organizing this project for your community or care center, please feel free to contact us.

Thank you,

Tania & Tyler Moon

 

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