I am friends with several current Patient Coaches. I would always see them posting about 11 Health, but I didn’t know much about it or what Alfred was. I even once hired Alyssa, a Patient Coach, and had her draw a phoenix for me. She is a very gifted artist. I made a vinyl decal out of it and used it as a decoration for my car. After all the Patient Coaches had gotten together in California, I was intrigued and wanted to find out more about the company and just what exactly it entailed. Soon after, Maggie Baldwin had posted that 11 Health was seeking more Patient Coaches. I commented on her post that I was considering applying and she encouraged me to do so.
I think what I most will get out of being a Patient Coach is the knowledge that I have certain experiences, and those experiences will prove useful to someone else going through a similar situation. However, I don’t have all the answers. I have been living with Crohn’s for ten years, and I certainly don’t know everything. I do have an empathetic ear and know when the appropriate time is to offer up any similar experiences that may help someone through a difficult time. Let’s face it. Telling someone they are going to have a portion of their bowel put through a hole in their stomach, have a pouch into which their bodily waste will be deposited, and the chance this will be for the rest of their life is a lot for anyone to comprehend.
I was diagnosed with Crohn’s rather late in life. I was thirty-five. According to much of the literature out there, the disease usually manifests in males in their late teens to early twenties. That same year I had been convinced by a friend of mine to do my first triathlon. I hadn’t worked out in years, and the whole idea of the race was very intriguing. I am a former collegiate swimmer, and I over-trained the one thing I was good at. Some of the swim training took place in a small pond that was often polluted. Since everyone else was doing it, I really didn’t think much about it. At any rate, I feel that swimming in this small pond is what triggered my Crohn’s to “wake-up.” I do realize that there is a genetic component to the disease; however, we can’t think of anyone in my family who has ever shown signs or symptoms. It didn’t make sense to me that I was trying to get healthier in life by actively working out only to come down with an incurable disease. Most of the GIs I have had in my ten-year journey do not agree with this theory of mine.
Crohn’s has certainly changed my life. I have had nine surgeries in total. My last was in December of 2016 when I was given my permanent ileostomy. Having the ostomy has changed my life, but it is all for the better. When I think about my life during most of 2015, I don’t even know who cut my grass that year. It wasn’t me. I had five of my surgeries that year alone, and I pretty much existed on my couch. In all honesty, I was just a ghost haunting my own life. In 2016, my surgeon presented me with the option of a reversal. I didn’t want to have another missed year of life like 2015 and opted to go permanent. Turns out it was the best decision I have ever made. When my surgeon was performing that last surgery, she discovered the large perianal abscess that I necessitated all the surgeries in 2015 hadn’t healed at all. If I had chosen to be reversed, it would have been the worst thing for me. Within a week, she states I would have been right back in the same agony I had endured prior.
How has having an ostomy changed my everyday life? It has given me my life back. The other day I edged my own yard, and I know who cut it – my kid (because I made him). I am currently training for my first Ironman Triathlon. That’s a 2.4-mile swim which is followed by a 112-mile bike ride and all capped off with an entire marathon run. This is something I would have never considered before.
My advice to any ostomate out there is take it one day at a time. It is hard to do, but one of the lines from a favorite song of mine is, “I’m alive and living now.” All of us have, whether healthy or the sick, is right now.