The day I was diagnosed with Crohn’s disease, I was 31 years old and had an infant in a carrier at my feet. Flash forward more than three decades. I’m still singing the praises of the gastroenterologist who finally found out what was wrong with me and set the stage for the way I responded to the illness through multiple surgeries and many medications.
For around 20 years, I had been having horrific digestive episodes that sent me to various emergency rooms. I now know these were partial small bowel obstructions linked to Crohn’s. However, doctor after doctor failed to diagnose anything. I had so many barium studies that I should have glowed in the dark.
Despite weekly iron injections during the last trimester, I remained anemic throughout my first pregnancy. After the delivery, I got particularly sick, and the doctor in the small town where we lived referred me to a gastroenterologist in Tucson who apparently had a great reputation. His office was 75 miles from home, which meant bringing the baby on every visit.
The doctor immediately impressed me by requesting permission to have two students of the local medical school sit in on the appointment and asking me at the outset what I thought was wrong. When I agreed and replied that I thought (why, I have no idea) that the problem had to do with my intestines instead of my stomach, he turned to the students.
“Pay attention to this,” he said. “Some patients are extremely intuitive and are usually right.”
I left the appointment with an order for yet more barium and a suggestion that I might have an illness called Crohn’s disease. Apparently, after years of damage, the films looked like World War III.
At the second appointment, the doctor thoughtfully asked the office staff to watch the baby while we discussed my diagnosis. He grabbed a gastroenterology textbook and handed it to me.
“Take it home and read about this disease,” he urged. “I know you can understand the material. Come back in two weeks with questions.”
That’s exactly what I did. I learned that while my life would probably be significantly different from the picture of health I had always envisioned, the disease most likely wouldn’t be fatal.
When my then-husband accepted a job thousands of miles away just months after my diagnosis, I panicked. I was about to lose the doctor everybody with Crohn’s wants. I cried.
So we moved. And I jettisoned three gastroenterologists in a row who didn’t measure up to what I had previously experienced.
All three of my small-bowel resections occurred after we moved. The disease turned out to be just as advanced as he said it was, and it kept on advancing. But there isn’t a week that goes by that I don’t stop to silently thank this doctor for setting the stage for a positive approach to living with Crohn’s disease.
His attitude and advice enabled me to be a founding member of a Crohn’s-related organization that now has thousands of members. It enabled me to get through a miscarriage, a divorce and more than 100 hospitalizations.
It helped a person who was so often ill launch a federal career and advance to a senior position. And when the illness said it was time to retire, it helped me transition to starting my own business as a health and medical writer.
Crohn’s is one of the two primary types of inflammatory bowel disease (IBD). Thanks to the way my first gastroenterologist taught me to deal with the disorder, I had the persistence to start an animal rescue out of my home. And never would I have guessed that three cats in the rescue would have IBD like me.
My special doctor would be in his mid-70s today. I suspect he’s retired, but maybe he’s still helping Crohn’s patients.
Thank you, Dr. M. You know who you are.
