I often wonder what it would be like to wake up in the morning and feel normal. For the last three years, the disease I have -- Crohn's -- has been active, and I have forgotten what normal feels like. This chronic digestive disease plays havoc with one's life. As an active 23 year-old, my biggest challenge has been learning to accept and acknowledge this condition.
There is still a great deal of anger inside of me. But I have gotten over wondering why I have been afflicted with this disease, and instead I am facing it head on.
That's not to say that I don't still panic when I experience uncomfortable pain in my lower abdomen or if I have days when everything I eat reacts in my body as if I had drunk a quart of prune juice.
Since the disease last came out of remission in 1984, I have finished the second half of my college education, begun working full time in The Washington Post's sports department and have moved into my own apartment. The older I get the more determined I become not to let this disease interfere with my life.
The first time it was evident I had a problem was when I was 6. It was always a stomachache, often at times when it was convenient -- mornings before school, dinnertime, bedtime or when my parents were leaving me with a babysitter. But these stomachaches persisted, and the first of five years of diagnostic testing began in order to determine what was wrong.
The pediatrician didn't seem to take my complaints seriously, but when my mother insisted on further testing, he recommended a pediatric diagnostic team at Georgetown Hospital.
By this time, I was 11 and had lost more than 25 pounds, was anemic, had unexplained swelling in the joints and was running a low-grade fever daily. I had missed most of my fifth-grade school year and many days didn't get dressed unless it was to go to the doctor. I still had the stomachaches, but little attention was given to them because the other symptoms were much more dominant.
I cried a lot. I wanted to be at school with my friends, and I wanted to feel good. I didn't like lying in bed half-lifeless, watching the world through the 12-inch black-and-white television on my dresser.
At our second meeting with the doctors at Georgetown Hospital, they did a quick family medical history. When it was mentioned that my father has Crohn's disease, an inflammatory bowel disease, they immediately wanted to run the gastrointestinal series of tests on me. When I was 6, the pediatrician had run the upper GI series, which usually shows problems in the stomach. I had never had the lower GI series, which would show problems in the small and large intestines.
Just the anxiety I put myself under anticipating the test -- a barium enema -- was enough to make me crazy. I had made my father, who had been through the tests several years before, give me every detail of what I was going to experience. I was terrified. But when the doctors at Georgetown diagnosed my problem as Crohn's disease, I was thrilled. Finally, after five years of being humored by my parents, doctors, teachers and friends, someone believed there really was something wrong with me.
My mother wasn't as thrilled. She was more aware that there could be long-term effects. "The doctors at Georgetown explained the long-term effects. They didn't want you in the room when they described the illness," said my mother, Ellen Schwartz. "They painted a pretty gloomy picture of what the long-term effects were going to be.
"They said you might not grow to your potential because you had not finished growing and that you would probably be on medication the rest of your life," she told me. Crohn's is an inflammatory bowel disease, which is a chronic digestive disease of the small and large intestines. The cause is unknown, but the current leading theory is that the body's immune system is not functioning properly -- producing an abnormal immune response to either food or factors in the environment, which results in an inflammation of the intestinal wall.
There is no cure for this disease, but there are a couple of widely used drugs that are fairly effective in controlling it. The drug sulfasalazine is the drug of choice because it has relatively few side effects. However, in more severe cases this drug is not effective and steroids are used. Steroids -- anti-inflammatory and immune-suppressant drugs -- have many side effects, and large dosages are not recommended for long periods of time.
In spite of the fact that my father has this disease, the doctors did not make the connection because the symptoms vary so much in different people. My father first started experiencing problems in his thirties. He would be fine for weeks; then he would become violently ill, experiencing severe vomiting at times and diarrhea. After one of these attacks, he would be fine.
My symptoms were very different, and I never experienced the vomiting. The doctors at Georgetown were the first to make a connection between my father and me.
After the disease was diagnosed, it came out of remission about every other year and would remain active for several months at a time. Each time, these bouts of activity lasted longer and needed more drug therapy in order to subside. The second time the disease came out of remission, when I was 14, I was put on steroids for the first time.
Psychologically, this drug was tough to handle. It altered my appearance -- mostly causing bloating in my face as a consequence of water retention.
In the 12 years since that first diagnosis, I have been under the care of three gastroenterologists. It wasn't until 1984 that I finally found one who was less fatalistic about my future. Previously, I had been told that I would be on steroids the rest of my life and would probably at some point need surgery.At the age of 20, after experiencing my longest remission -- more than three years -- I started having problems again. By this time, I was a sophomore in college and I refused to let this disease get the best of me.
My mother insisted that I go to a doctor, but I fought it for several months. I knew the inevitable -- that I would end up back on steroids and possibly have to undergo more testing because it had been nine years since the diagnosis. I finally went for an examination, and both happened.
The doctor "scared us by saying the test results looked like you had an obstruction and most likely that you would require surgery. We sought a second opinion," my mother recalled. "and were relieved to find that it could be several things much less severe."
Learning to live a normal life with this disease was not important to me until this most recent flare-up. The disease hasn't been in remission since. In the past when the disease had come out of a remission, I just accepted being sick and gave into it. It became all-consuming and took over my life.
But in 1984, things were different. I was in college and working part-time. I didn't want to give in to being sick.
First, I denied anything was wrong. I fought my mother in returning to a gastrointerologist. I fought the doctors in putting me back on the steroids. Then slowly I began to acknowledge that this disease was something I would have to deal with forever.
But whatever the future holds, I feel confident that my life will be just as full as those of my contemporaries.