About this time last year I tried to put together an article for Reader's Digest on Crohn's disease, but the editor I was working with eventually turned it down because it wasn't a life-and-death illness. Having lived with it for 18 years, I can tell you it sure feels that way sometimes.
What is Crohn's disease?
It's a chronic, gastrointestinal disorder caused by an overactive immune system that attacks the harmless bacteria in the digestive tract causing inflammation in its deepest layers. It was named after Dr. Burrill Crohn, who with his colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a paper about the illness in 1932.
Dr. Crohn's old office is still in use on Manhattan's east side. I was there for an upper G.I. series, drinking some chalky-white barium, when a doctor with a God-awful toupee told me I was on hallowed ground. I tried to imagine how the place might have looked 70 years ago when Dr. Crohn was in his prime, but the technician kept barking orders at me while he took x-rays.
How is it diagnosed?
Dr. Timothy Sentongo, a gastroenterologist at Children's Memorial Hospital in Chicago, says the process can take up to three weeks sometimes before a diagnosis is made. Tests need to be done and the patient's history examined for stomach pain and decreased appetite, which can lead to significant weight loss.
Also, Dr. Mary Harris at Johns Hopkins in Baltimore says, "Common symptoms such as abdominal pain in the right lower quadrant, diarrhea, and fever can appear to be appendicitis at first."
Who does it affect?
According to the
Crohn's and Colitis Foundation of America (www.ccfa.org), more than 500,000 people have the disease in the U.S., but you wouldn't know it. "People are reluctant to talk about stomach pain and diarrhea with others who are unaffected, but the disease is very common," says Dr. Joseph Sellin, Director of the University of Texas Medical Branch at Galveston Inflammatory Bowel Disease Center.
There does seem to be a higher concentration of Crohn's in the Northeast, but incidences have been on the rise across the country in recent years.
How's it treated?
"Each patient's Crohn's is his or her own. The goal of treatment is to find the magic combination of drugs to maximize the anti-inflammatory effect with minimal side effects, but what works for one patient may not work for another," says Dr. Sellin.
Since the time of my diagnosis, the drugs used to treat Crohn's have improved somewhat. For example, I was prescribed the steroid Entocort EC during my last flare up, which I found to be as helpful as Prednisone with less unwanted stuff, namely irritability and the dreaded moon-face. The reason for this is that Entocort is absorbed more fully in the bowel, where Prednisone affects the whole body.
Dr. Barry Jaffin of Mt. Sinai Hospital in New York (my current doctor) is optimistic about the future of treatments, saying that as we learn more about the cascade of inflammation, more potent treatments will be developed, ones that alter the natural history of the disease, which can provide patients with long-term remission.
Remicade is an intravenous therapy that is relatively new to the scene. While I have not tried it, yet, I've heard good things from people who have.
Other aspects to consider:
Dr. Jaffin says while Crohn's is not caused by stress, it can increase the volatility of the disease, so patients need to develop effective ways of managing it in their lives.
Diet varies case by case. I'm reminded of a simple philosophy I learned from my childhood gastroenterologist, Dr. Jeremiah Levine of Long Island Jewish Medical Center. When I complained that every time I ate Chinese beef and broccoli, I got a terrible pain in my stomach, he told me to order something else next time.
How bout a cure?
While there is no cure for Crohn's, there have been positive developments in research, particularly genealogy, which may point to the possibility that Crohn's is hereditary.
"We know the disease has three factors: genetics, environment and a trigger in the immune system," says Dr. Sentongo.
"It's like a domino effect, we understand why four, five and six fall over, but we still don't know what tipped the first one," says Dr. Harris.
In the meantime:
"Try not to consider yourself a person with a disease. Live your life," says Dr. Jaffin.
While fatigue, pain, and frequent bathroom trips are not the easiest obstacles to overcome, they are manageable with treatment and a good frame of mind. The editor at Reader's Digest had a point, Crohn's is not a matter of life and death, so on those tough days I remind myself that what doesn't kill me, makes me stronger.
