Living with My Ostomy:
Although I can't say I was always the bravest patient when it came to facing new medical procedures, when the doctor rushed into my room to say I needed emergency surgery, I was completely calm and resolute. I was in such extreme pain that I couldn't get out of bed, so I couldn't go with my wife out into the hallway where the doctor showed the x-rays so she could see evidence that my colon had burst. When my wife walked back into the room, I knew from the look on her face that I was on my way to the O.R.
When I came to the next day, a day that just happened to be my 48th birthday, I was in a great deal of pain and not at all sure about what had just happened to me. Not too long after that, a woman who I somehow trusted implicitly from the very first, walked into my room and said "Hi, I'm Ellen Tyree, your ostomy nurse. If I told you that I'm here to teach you how to take care of your ostomy, would you know what I was talking about?" I had to admit that I had no idea what she meant by that new word: ostomy.
The thing is that I was still brand-new to this whole ulcerative colitis thing. I had only been diagnosed about five weeks earlier, and I had spent two of those five weeks in the hospital on extremely high doses of pain medication. So I really hadn't had any time to learn anything about this new disease that had come out of nowhere. When I had signed the paperwork for the emergency surgery, I knew they had to do something about that ruptured colon, but I really didn't know what they were going to do.
I had always been very healthy and very into sports. I ran, biked, swam, hiked, lifted weights, and played tennis. I was always training for some triathlon or another. I ate a very healthy diet. Then all of a sudden, in August 2010, I started getting these severe neck pains. Having just taken a new job in a new city, I had only met my new doctor one time before I started having these pains, and when I called to try to get appointments with her, she was never willing to make time to get me in. She suggested that if I needed immediate help, I should go to the E.R., which I ended up having to do six times over the course of the next six weeks. On the sixth visit, I was hospitalized, but before that, my wife was spending more and more time every day trying to find a doctor who would take me on as a new patient and figure out what was going on. The E.R. doctors could only prescribe stronger and stronger pain medications and short-term doses of prednisone. The prednisone helped a lot, but the E.R. doctors would only give me doses that would last a few days, expecting that my primary care doctor would prescribe long-term treatments if that was what was needed. But since I couldn't get my PCP to agree to see me, I kept boomeranging on and off the prednisone.
When I finally found a new and wonderful family doctor (thank you, Dr. Meloy!), he gave me a longer prednisone prescription that finally got the neck pain under control. I also got in to see a rheumatologist, who thought the neck pain was caused by some kind of an auto-immune inflammatory condition. He was right about that, but what we didn't realize was that once the inflammation in my neck was brought under control, the inflammation would suddenly move into my guts.
My first three visits to the E.R. were for neck pains, but my fourth visit (almost exactly a month after the first one), was for uncontrollable diarrhea accompanied by constant rectal bleeding. Five days after that, I had my first colonoscopy ever, and I was diagnosed with ulcerative colitis. Less than a month after that, I was admitted to the hospital, and on Nov. 2, 2010, my entire colon was removed.
So there I was on my 48th birthday, trying to figure out what this nurse was talking about when she wanted to tell me how to take care of my ostomy. I was extremely fortunate to have Ellen as my ostomy nurse; there was something about her presence that was so incredibly soothing to me every time I saw her. I was also extremely fortunate to have had Dr. Michelle Olson as my surgeon — she is one of the warmest and most patient doctors I have ever met, and every time she came into my room, she made time to sit down on the bed next to me and answer any questions I might have (I had a lot). Still, in spite of the wise and comforting counsel I got from both Ellen and Dr. Olson, I became terribly depressed when I understood what had happened to me. Like many people, once I understood what an ostomy was, my first thoughts were about the things I would have to give up. I was never going to be able to bike again, play tennis again, go hiking again. And how in the world was I going to get dressed for work?
These thoughts consumed me during my slow recovery period. I had gone from 185 pounds down to 140 over the course of a couple of months, so I had lost most of my muscle mass and was medically malnourished and anemic. Step one, before I could do anything else, was just to start to regaining some strength. I was sent from the hospital to a rehab facility, and I remember two early successes there that symbolized the recovery that I hoped to eventually be able to make. The first was that on my very first day there, the physical therapist asked me if I could make it up one or two steps. Determined to show him what I was capable of, I walked very slowly up and down an entire flight of stairs. My training as an athlete served me well as I focused my mental energies on being able to achieve that almost insurmountable physical task. The second time I felt like there was some hope that I might be able to improve was the first time I walked outside of the rehab building with my wife. It was a crispy December afternoon in PA, and I pulled the cold air deep into my lungs, felt the sun on my skin, and remembered how grounded I have always felt when I'm out in nature. That's when I first knew that I had survived, and I was going to make it.
Throughout this entire period, I continued to fret over the impossibility of getting back to the physical activities that had always defined who I am. I've always been physically active, always enjoyed a physical challenge. If I couldn't go out and push myself, if I couldn't do the things I love to do, then I wouldn't be me. But how was I going to be able to do that when I had this stoma and bag hanging off my belly? The need to protect my stoma from possible impact became even more obvious to me when I went to my first ostomy support group meeting that first January. After we all went around and introduced ourselves, I brought up the first topic of conversation, asking all the other ostomates: "How do you wear a seatbelt?" I had worn mine on the way to the meeting, but only because my wife was driving and I could use both hands to pull it away from my stoma and bag. What was I going to do once I was ready to drive again?
The meeting was being run by Ellen, the same ostomy nurse who had helped me so much at the hospital, and she was shocked and horrified when EVERY member of the support group responded to my seatbelt question by saying: "I don't." They told Ellen they couldn't wear a seatbelt because it either pressed on their stoma or cut off the flow into their bag. I agreed with Ellen that people need to wear seatbelts, but I also understood why the other members of the group felt like they simply couldn't!
I'm an engineer. My B.S. is in Industrial Engineering and my M.S. is in Mechanical Engineering. So my mind immediately went into analytic mode. What would I need to feel safe, so that I didn't feel like a vital part of my body was hanging out there in the open, just waiting to be bumped and damaged? How could I create a shield to protect my stoma without cutting off the flow of output into the bag? This was a good project for me to work on. I came up with a design in my head, and then started trying different materials to create a prototype that would work. When I came up with something that I was happy with, I began wearing it all day every day. I felt so comfortable and so safe that I began to try out the things I never thought I would do again. I went biking. I went swimming. I went hiking. I went back to work, in my factory full of carts and big dangerous equipment. I drove and hiked and carried heavy things, played with dogs and kids, gardened, and made love, all without worrying about my stoma. In other words, I did everything that I used to do before my surgery.
The fringe benefit to my guard, which I hadn't really anticipated at first, is that It also stopped me from getting the leaks I was having pretty much continuously when I first got out of the hospital. By placing constant pressure on the appliance, the guard helped assure that the wafer was firmly connected to my body, and I gradually lost the fear of leaving the house without a full change of clothes, a new bag and wafer, etc.
I began to think about whether this product could help other people as much as it helped me. I wanted to make sure that it was sturdy enough to be effective, comfortable enough to wear all day, that it would stand up to heat and cold and washing and being bumped. So I again applied my engineering background and tested it in all sorts of harsh conditions. When I was confident that it would stand up to everything people would throw at it, I created a website to let people know about it, and I started getting orders. I put my phone number on the website, and people started calling me up to talk about my product, but also about their situation, their ostomies, etc. And then, after they tried my product, people often called me back again to thank me or they wrote me letters saying things like "" or they sent me pictures showing how they were using my product to horseback ride or do karate. That has ended up being the most fulfilling part of this whole experience: I have had a customer tell me he hadn't left the house or worn anything but sweatpants in seven years, until he got my product. I've had customers ask for expedited orders because they are leaving the house for the first time in years to go to a family wedding or to a new job. People who were living very restricted lives for very many years after their surgeries were now willing to go out and try to do the things they love, things that fulfill them, the things that make their lives complete. What better job could anyone have than making things that help people get their lives back? I have been honored to help people out and gratified to hear their success stories. This is definitely the way I want to spend the rest of my life, and in fact, since I wasn't able to keep up with orders while working my engineering job, I have now left my engineering job to dedicate myself full-time to Stomaplex and ostomy support and awareness.
This past December 2011, just over a year after my first surgery, I had a second surgery to remove my rectum and make my ostomy permanent. I did, of course, have the option to do a reversal, but I was hesitant to do that after hearing some of my customers' stories about their complications. I decided that I agree with what Ellen, my ostomy nurse, says about life in general: "If it ain't broke, don't fix it." My ostomy is working fine, not creating any problems for me, and I still haven't found anything that I can't do with an ostomy. It ain't broke, and I'm not broke anymore either. My ostomy and I are doing just fine the way we are, and I feel ever so fortunate to have discovered a product that works for me and that works for other people in a way that helps us all reclaim the things we love to do in life.
I have been in the news.
Williamsport Inventors Club (Note the name of my business is now STOMAPLEX LLC.)
I have an M.S. in Mechanical Engineering; B.S. degrees in Industrial Engineering, Computer Science, and Economics; and a B.A. in Actuarial Mathematics. I also have a minor in photography.