Going back even to the 1950s, when I was in grammar school, I had problems with my stomach. My appendix ruptured and they took out part of the bowel at the same time. I have a suspicion that my Crohn's disease probably affected me as early as the late Fifties, when I had my appendix removed.
I had problems again when I was in the army. In the summer of 1965 when I was getting ready to process out, the war in Vietnam was starting to heat up, of course, and the reality is that serving in an Army Intelligence assignment there was a lot of stress. As I approached my release date from active duty and into the reserves, I was in and out of the sick calls, hospitals, the whole nine yards. I managed to work my way through that crap, and then in the 1970s I met and started working with a gastroenterologist based in New Jersey who happened to study with Dr. Crohn himself in New York.
Eventually, after a misdiagnosis of irritable bowel syndrome – and after going on some special diets with added fiber, which was the exact wrong thing to do – my doctor did diagnose me with Crohn's in 1976 or 1977.
We’re pretty much exactly 40 years down the road since my diagnosis, and I've been through a lot since then. I had my first surgery, a resection of the bowel, in 1983 at Chilton Memorial Hospital in New Jersey. That was the beginning of probably the worst portion of my life, because I’ve been through a total of about thirteen major surgeries -- so far – and many of them took place back in 1983, '84, '85. I had three major operations in the summer and the fall of '83 and September of '84. I went into the hospital, and next thing I knew I was there for seven and a half weeks. I had perforated a bowel, I got peritonitis, and it took a long time to get over that. In October '84 I had another resection.
In the spring of 1985, they were literally loading me on a gurney to fly me by helicopter over to New York for another surgery and the doctor said, "Wait, wait. Take him back downstairs," because I had developed toxic megacolon and they were worried it was going to rupture while I was in the helicopter. That was the first time they gave an ileostomy, a temporary ileostomy.
And you know what? I'll be honest, I was a rather compliant patient in those days. I didn't know enough to voice my own opinion about whether to have an ostomy, or continue with the surgeries. I didn’t feel it was my place, or I didn’t have enough information, to advocate for myself. The doctors obviously felt, at that time, that resections were the best approach, but I also think that in those days they didn't fully appreciate that when they cut out a piece of the bowel, the disease was just going to move along to somewhere else.
The expression, “colostomy bag,” is a negative term if you're an ostomate. We call them pouches, we call them prostheses, but we try desperately not to call them “bags.” And the appliances have undergone an unbelievably dramatic change in the past four decades. When I was first an ostomate, the pouching process started with a glue that you painted on your skin, then you attached a circular barrier to, then over that a rubber covered metal ring with hinge hooks that you would then use to strap around your body. To that you would literally double-knot tie a pouch using elastic string. The equipment was noisy, hot, sticky, cumbersome and vey 'noticeable' in that it projected out of your belly profile over one inch. If it developed a leak you were at risk for anything to happen until you could get back home where you had your equipment and your supplies and you could conceivably change the appliance. Can you imagine?
That was a time when I literally told people, "I know I'm an ostomate, because I think about it every hour of the day.” I'm dealing with pain, I’m dealing with the appliance itself, because it would shift and I would deal with excoriated skin and more pain. I would deal with at night. I would worry about rolling over and the weight of it's sloshing' contents knocking if out of place. It affects every part of your life.
But then companies like Coloplast and Squibb and ConvaTec came out with new products. And as a result of these new, better-designed, easier-to-use devices, people like me found it easier to go out do active things again. It was a sea of change.
I have focused a large portion of my career -- my ostomy career, if you will – on volunteering. I spent many years as a "certified visitor" with the United Ostomy Association, meaning I've been trained and at a doctor's request, I would visit a Crohn’s patient in the hospital, or someone with another disease that's going to require some kind of a diversion, whether it's a temporary ileostomy, urostomy, or colostomy.
Before the surgery, I talk to them about looking forward and feeling okay with what's going to take place. I'll also visit them after the operation, and begin to teach them about self-help organizations, that sort of thing. And it’s usually at the end of the first visit that I explain to them that I’m an ostomate – I haven’t mentioned until then -- and they’re usually just blown away. The whole point is to let them know that they can look, act, and be as quote-unquote “normal” as anyone else.
The message that I would like to share is that my experience (I'm in my 70's) dealing with Crohn's for over forty years has proven it is possible to continue to lead a successful professional career filled with international travel, raise a family and continue an active life that includes lots of swimming, biking, bowling and equestrian events, without limitation. The key word there is "active". My ileostomy and the Crohn's disease, as well as the myriad of associated issues of multiple surgeries, stoma revisions, perforated bowels, peritonitis, voiding fistulas, pyoderma gangrenousm.....one might think that any of them can be used as an excuse for one to justify crawling into a shell and withdrawing from active life, but my experience has proven that is definitely not necessary, or justified. I'm not shy about the fact that I'm an ostomate. Many, many people know it, because I believe that the more people who know that I'm an ostomate and know that it hasn't hampered me in any way, in my career or my private life, I think that’s good for everybody. It makes me feel more accepted, and it helps other people become more accepted in the world.