Life Anew: Navigating a New Way of Being

It’s hardly uncommon. I’d rather be dead than wear an ostomy bag. How many times do I hear or read a person saying that either before they have the ostomy surgery that requires them to wear an ostomy bag, or after, as they reflect back on how the addition of this medical device has changed their life.

Like all medical devices, an ostomy bag is a device that helps patients overcome sickness or disease and improve quality of life. I got mine in the summer of 2019 following more than 10 years of struggling with the pain of small bowel obstructions and the diet restrictions, hospitalizations, endless IVs, medications and surgeries that accompanied the attacks.

At first, I resisted the operation, dreading the ostomy bag and the lifelong changes that would surely result. But when my GI and surgeon said an ileostomy was the only course of action, they had to get me out of the hospital, I gave in. The next thing I knew, I was returning home with an ostomy bag stuck to my stomach, allowing my digestive system to empty waste through a stoma.

An ileostomy is a procedure in which the surgeon creates an opening in the abdominal wall to expose the lowest part of the small intestine. The operation creates a stoma, an opening in the abdomen which connects to the digestive system to allow waste to eliminate into an ostomy bag as it leaves my body.

A Statistic in an Important Community
Just like that, I had become a statistic, one of approximately 800,000 ostomates who wear an ostomy bag. I also was one of the 120,000 people who have had ostomy surgery this year—in my case, an ileostomy which alleviated the dysmotility issue that was causing the blockages I had been experiencing all those years. But beyond that, I had joined a new community…one with 799,000 ostomates who were experiencing all the highs and lows I was.

It was startling to know I was one of so many ostomates—people with bladder, colon and rectal cancers as well as those with specific conditions like mine, or Crohn’s disease and IBD. And these ostomates are individuals in their teens, twenties and thirties like me, as well as those who are older and in my parents’ age demographic, even beyond. There was a kind of weird comfort in knowing we were a community of sorts and experiencing the same issues I was experiencing every day.

The Good and the Bad
At the same time, the newness of my condition came with its own quirks. I was producing a lot of gas and constantly had to burp my bag to prevent it from ballooning. During the night, I’d have to wake up frequently to make sure the bag didn’t fill with air. I used some recommended accessory products to deal with these issues, but they would leak and leave a mess on the sheets.

Still, I was grateful that I was no longer in pain and suffering with blockages or the fear of them. Yet, there were new dark clouds hanging over my everyday life. I was concerned that I might feel sick and not be able to attend events or go to work. I was uncertain of not knowing how I would feel day-to-day. Plus, I was hesitant to leave the house to run errands or connect with family and friends. Could they “see” my ostomy. Even worse, would I have accidents?

Research and Reading and New Perspectives
Fortunately, I’m the kind of guy who does a lot of research on topics important to my life. My reading showed that when doctors suggest an ostomy to their patients, most hesitate for many of the same reasons about which I was concerned. Sure, they learn more about what an ostomy can do for their condition and feel positive about the pluses of the surgery. But they still feel the emotional distress surrounding the need to consistently wear a pouch or bag on their bodies that collects waste and how that creates negative feelings about their bodies.

I was not alone with my insecurities. What changed, though, was that I was spending a fair amount of time on sites like Instagram and Reddit, among others, following people who had had ostomy surgery like me.

Some Aha Moments
I was initially amazed and maybe even a little amused that many were posting about their ostomies, even posting photos of themselves working out or in bathing suits showing their ostomy bags. I had to say, I also kind of admired them for their openness. With the exception of my immediate family and closest friends, I didn’t speak of my surgery to anyone.

These posts got me thinking. It seemed that these ostomates were either working on or showing their acceptance of their new way of life and encouraging others to do the same. Big picture, these very open ostomates were raising awareness, removing the fear, discomfort or awkwardness their friends or family might feel about their ostomate status.

Ostomy or not, I couldn’t conceive of myself being that open. But I got to thinking there were other things I could do to help not only me but my fellow ostomates who were facing many of the same issues I was post-surgery. Technology has always been an important part of my life. I am always looking for ways to improve on existing innovations and ways to leverage technological advances to make life easier.

Finding Who I’ve Always Been
I quickly realized I had the capability to make my own accessories. My creativity and engineering skills went into overdrive. I dove headfirst into my engineering CAD programs to develop my first ostomy accessory.

I 3D printed it, tested it, and went back to my computer to make a few tweaks. I had created a device that worked to reduce air in the ostomy bag without a mess—and faster than I could have imagined. Using rapid prototyping and advanced manufacturing techniques, I had developed a solution that could easily be replicated and mass-produced.

Adjusting Still
Even with all that forward movement, I still am getting adjusted and still have worries.

What if my bag fills up while I’m in the middle of a conversation or during a car ride?

What if I can’t find a bathroom when I need to find one quickly? What if I develop skin issues like irritations, even infections or ulcerations? How will developments like this set me back? Most of these issues can be solved by planning, but it takes time to get the hang of this new life routine. Plus, if I'm feeling anxious, these worries become bigger deals than they need to be. Intellectually, I know it's important to remain calm, but it isn't always easy.

I still worry if people can see the ostomy pouch or if I'm touching it too much. I am overly aware of my ostomy, but when I'm engrossed in work or fun, that preoccupation disappears.

I’m still getting used to my new routines like spending an hour or so every few days to change my pouch and care for the stoma. Some people can do their change in 10 minutes, but I'm not that fast at it…yet.

A Return to Who I Am
Mostly I'm just trying to be my normal self. I may have some inconveniences, but my life is healthier and more predictable than it was before my surgery. And developing the Ostoh has certainly kept me on track and continuing to be the person I’ve always been. I never would have dreamed that as an engineer and technologist , I’d create products to help people improve their wellness. I never saw myself building a medical device company. But today I am doing just that and, more than that, I’m able to help others.

One very important thing I’ve learned: If you stay open to the opportunities around you, you’ll find a way to make a difference in this world. Life has an unusual way of pushing you to where you need to go. To me, that’s what Ostoh is all about.

If you’re interested in learning more about Ostoh and how it might increase your comfort; email us at hello@ostoh.com or use our contact form. Our goal is to make your ostomy life easier and make you feel what it means to be yourself.