My Own Personal Crohn's Nightmare

I would sleep a couple of hours, then find myself sitting upright, shaking. Once my brain cleared, I recognized outright fear in the form of a nightmare. It happened over and over again.

Unlike young or newly diagnosed patients with Crohn's disease, I have been living with the illness a long time. At age 60, I realize I've been plagued by the symptoms since childhood. However, I wasn't diagnosed until age 31, following dozens of visits to emergency rooms and zillions of tests. This part of my story is typical of many patients I've encountered over the years.

In my twenties, I had two rectal surgeries undoubtedly caused by the undiagnosed disease. With each frantic trip to the hospital for what I now know were partial small-bowel obstructions, I vaguely wondered if I'd still be able to make the hot date planned for Saturday night. Or if my absence at work the next day would be noticed, resulting in a coveted promotion being lost.

I was finally diagnosed in Tucson by a gastroenterologist who had seen many patients with Crohn's disease while doing a residency at Mt. Sinai in New York. This occurred when my daughter, my only child, was just two months old. My greatest fear then was that I would be unable to care for her. Once I had a label for what was wrong with me, I spent more and more time worrying that her father would prefer a healthier marriage partner. That nightmare shortly came true.

At 35, I had a miscarriage most likely caused by the Crohn's. At least the doctors speculated I became too sick during the pregnancy for the baby to survive. I also had my first of three small-bowel resections. Yes, I feared the scar. Even more, I feared not awakening from anesthesia and leaving my little girl motherless. Agreeing to the surgery was a dreadful finality in a way, because there is no way to put back pieces of intestine that have been surgically removed. I made the decision so that as the single parent I had been advised I was about to become, I could adequately care for my child and would avoid losing custody of her.

As a parent pushing 40, I worried that my daughter would be diagnosed with the condition as well, since many patients have a close relative with either Crohn's disease or ulcerative colitis. She's now 28 and has the symptoms, but no diagnosis. I had my second resection for a narrowed section of bowel.

By 50, I realized my daughter could survive on her own. My biggest fear had been hiding under all the others. No longer did I even think twice about a surgical scar; my abdomen already looked like an aerial map of the Himalayas. I worried that as I continued to have surgeries--my third resection was in 2003--I would lose the ability to work for any length of time as well as find myself without any medical insurance. Beneath that layer lurked the biggest nightmare of all: that I would become homeless and die, unable to afford medication, on the street.

Today, this remains a controlled fear. As individuals with Crohn's disease become more mature patients, they learn to live as much as possible in the present moment because it might well be the best one for a while. We rejoice at finish a day with no "accidents" and no pain. We learn to basically tolerate, not fear, Crohn's disease most of the time, much as a person with a knee replacement pampers the affected leg a bit.

One major development that will help many patients with inflammatory bowel disease (IBD) is a new definition of disability added to the Social Security lexicon in late 2007. According to the Crohn's Colitis Foundation of America (CCFA), the addition of an IBD impairment listing now makes it much easier for patients to qualify for Social Security disability income. Knowing that I fit several of the criteria has caused my biggest fear to shrink exponentially. At this point, with only about half my small intestine left, I find dealing with the ignorance of people unfamiliar with IBD a lot more troublesome than the condition itself.

I have mastered living in the present moment.