Bad Morning Blues

A few days ago, I awoke to a new, but suspiciously familiar feeling. I have Crohn's disease, one of those illnesses that you cannot talk about in mixed company. Crohn's is an autoimmune deficiency disease that attacks the colon.

Even amongst those of us who suffer under the relentless pressure of Crohn's there is a certain code of silence. We have organizations like the Crohn's and Colitis Foundation and therapy groups, though no one really talks about the symptoms. Even the most jaded of gastroenterologists hesitate to ask.

In past years, for most victims, Crohn's was life-threatening, but today, medicine has advanced enough to keep us alive. It is a big, but private club. There is no real cure, and often times no relief. Medicine works one day, and then stalls on the next.

In October 2004, while celebrating our fortieth wedding anniversary and renewal of vows, I began the worst flare-up of my life. We were in New Orleans, and I found my days and nights studded by a parade of bathroom visits. There is no safe arena for a victim during a flare-up period. I had to gauge my steps by the distance to the nearest lavatory. The first thing I did when entering a restaurant was to search out and inspect the men's room. In a movie theater, I needed to sit on the aisle, and I lived in fear of long lines.

From then until late 2005, I journeyed from doctor to doctor, part in search of relief, and part because of our failed American medical programs. Time after time, they told me that my insurance was no longer accepted, or they referred me to a doctor who was not taking new patients. Here I was, only one step ahead of embarrassment, and there were times I lost. I surely did not need a referral to see a doctor who could not be bothered to see me.

I did the 2005 Delray Affair, a major art show, in my grandfather's underwear. I wore Depends, but to my wife's and my own amazement, I still did the show.

I found ways to survive the embarrassments. I carried extra underwear, rolls of paper towels and even toilet tissue in my car. Under the seat, I stowed air spray and baby wipes. My wife learned to get out of my way in a hurry, but was always there when I needed her. I determined I would not allow this monster to keep me from a normal life. None of my friends patronized me; instead, they helped me at every turn.

Life is too sweet to lock myself away.

The next doctor I visited was the blessing I asked for. He listened, and worked with me until he broke the hold Crohn's had upon me. For the next year and a half, I was in remission. I took a lot of medicine, some very expensive, much of it experimental, in different combinations, and finally they worked. For 18 months, I was free of my monkey.

In October of last year, they admitted me to West Boca Hospital for an emergency gall bladder operation.

I will take a gall bladder operation over a life with Crohn's any day.

Even though he was not the doctor of record, my gastro man visited me every day. He is good man and a concerned human being.

Three months ago, he had his own problem. You see, he also has the disease, and had to have part of his intestines removed. A week after his operation, his nurse called and told me the doctor would not be practicing for a time and in any event, he would no longer be accepting my insurance plan.

Friday morning I awoke to a full-fledged flare-up, and now I must go shopping for another referral, and yet another gastroenterologist.

It was a bad morning, and for a time I had the blues, but I will endure, because I have been there before, and because I have to.

For more information, see: • Crohn's and Colitis Foundation of America • Crohn's and Colitis Foundation of Canada

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