Helping to Shape the Future for Ostomates

I have to say. I often feel so privileged for the rewarding opportunities having been through a bladder cancer journey and becoming an ostomate has brought me. Of course, like anyone reading this, I would very much prefer not to have had this road to walk.

However, as I see it, these pages and chapters were already written when I arrived on this earth. Nothing could change that.

What I have chosen, and you can too, is what you make of that journey. There is no one path to take. We will all have different and shared experiences as bladder cancer patients or as ostomates. Which path we take at each junction will be different for everyone.

For me, I found all the different things I have gotten involved in helped me to continue to grow as a person. Not as a bladder cancer survivor or as an ostomate but just as me, Laura.

Advocating for bladder cancer patients

I love being part of the BladderCancer.net community. I feel I have grown as a person. I also think I am not too bad at this writing thing. The writing was not really something I thought about being a skill I have. I also enjoy supporting others in the community.

I also do charity work for an ostomy and bladder cancer charity in the UK and have gotten the local congress involved in raising awareness. Recently, however, I got involved in something a little different. It has been rather exciting.

I was asked by a global ostomy manufacturer and supplier to work with them. It involves a number of different activities which will help to “shape," literally in some respects, the future of ostomy supplies.

Gathering of other ostomates

There was an initial workshop held over Zoom. There were attendees from all over the world, all different ages, from all walks of life, and all with different types of ostomies.

We discussed what makes an ostomy bag good, not so good, and bad. We discussed what could be improved. The design, product, and marketing teams were all present. The product team then went away for a few months with all our feedback. They discussed design options and then came up with options for prototypes for different aspects of the bag.

Looking at different prototypes

The first 2 things being reviewed were shape and material. These prototypes of parts of ostomy bags were sent to us to review. We had to try and see where they would sit on our bodies compared to our usual bag and a visual review for shape.

It is really interesting. Once you start to look at different shapes, you realize how much knowledge you have. How you can tell what will and won’t work. It was also interesting to see what works differently from my urostomy compared to my colostomy.

The fabric prototypes were very interesting too. It was good to see some of the newer, smoother fabrics being considered for urostomy bags. My current colostomy bag has a great material feel, whereas the same choice is not available for my urostomy.

Urostomy vs all ostomies

There are estimated to be 200 thousand people in the UK with an ostomy of any description compared to just 10 thousand people with urostomies.^1,2

The much lower number of ostomates with a urostomy is reflected in the amount of investment put into product design. I understand this from a business perspective, of course. However, this means many ostomy manufacturers have not made any changes to urostomy bag design in years. A good example of this is the material and general design of the bags.

They have taken our feedback away, and a next-level prototype will be produced for review. Future sessions will also review things like convexity and other aspects of the bag.

Cheers to the next generation of better ostomy products

We filled in surveys to provide feedback on the various aspect of the bags. We then all got together on another call to discuss our feedback.

I find it really encouraging that the company wants to listen to ostomates. To people who live with ostomies each day. People who understand what works and doesn’t work with ostomy supplies.

I am so excited for the next steps and to continue to be a part of shaping the future for ostomates.