Starting StomaStrap
I've moved my CaringBridge posts to this site so that they're more accessible. I also wanted to be able to share these posts, even though they are old, with people interested in StomaStrap. Every ostomy has a backstory - These posts tell most of mine.
My cancer hasn't been detectable in almost 3 years, which is great news. My overall health has been pretty good over the past year, so I don't usually feel the need to update anyone via CaringBridge. Plus I know firsthand the immediate stress response of seeing a CaringBridge update from a loved one pop into my email inbox. I don't like to cause any undue stress.
One thing that has really helped me through this health journey has been my approach to problem solving. Many of the problems I've had to solve seemed very personal and applicable only to me.
During my 14 months with multiple enterocutaneous fistulae and an open abdomen, I created a 3D printed brace for the Eakin wound bag that I wore. It was an basically a big ostomy bag with a drain. I needed a nurse to help me change it 2 times a week. Leaks were common. My life, already constrained by cancer and the inability to eat, shrunk even further.
After I created the brace, life was better. I still remember that The Cars were on the sound system when I popped into a grocery store. Walking around in public without worrying that at any moment I'd have to scurry back to the car, soaked in output? My eyes teared up near the produce aisle. That brace was just what I needed.
Despite assurances from medical personnel that the brace was a great idea, no one asked me to make one for another patient. I tried to connect with numerous wound and ostomy professionals, and while there was some interest, to my knowledge no one has ever worn that wound bag brace but me. I've got the design posted at https://www.printables.com/model/449956-wound-bag-brace - As far as I can tell, I'm the only one who has ever worn one.
It's a fact of adult life - No one will advocate for you as strongly as you can for yourself. Being an adult means that you care for yourself. So if you've somehow found yourself here, and think that the StomaStrap may help you - Maybe you're right. Show the product to your health care team and see if they think it'll work for you. Or just buy one and try it out. My goal is to find the people that it can help.
The StomaStrap uses many of the same design elements of the wound bag brace. It is focused on delivering down force on the adhesive part of the appliance. It consists of some 3D printed parts and a belt. I wear it every single day. It does seem like it might be a solution that applies to people other than me.
My initial efforts to just throw the wound bag brace out into the world have failed miserably. I'm going to take a different approach with StomaStrap. It means I need to deal with a lot more moving parts (website, LLC, printing services, etc). The goal is to make it so that more people get a solution that works for them.
Anyway, the rest of this section of the website is my personal blog, centered around my cancer diagnosis and recovery from the substantial surgical complications that resulted in my ostomy. Just in case you were interested in knowing more about me and where I'm coming from.
~Ed