Finding the right care on the road to wellness

It was 7 months before my 21st birthday, more than 14 years ago. I was having lunch with my college roommates, just

The road to wellness can be long and difficult

off campus. I had the chicken sandwich. How do I remember what I ate 14 years ago? Because the next day I woke up with severe stomach cramps and frequent trips to the bathroom. I was certain the chicken had made me sick.

Within a week, my six trips or more to the bathroom daily were accompanied by blood in my stool. Reality set it that this wasn’t some fluke week-long bout with food poisoning. Something was seriously wrong.

I called my mom in tears and told her about the symptoms that I had been experiencing for the last week. We called my primary care physician (PCP) back home to schedule an appointment. Several days later I was leaving his office with orders to buy some immodium and to give it some more time. He suggested I might have inflammatory bowel disease, a group of disorders including Crohn’s disease and ulcerative colitis, marked by inflammation and ulceration of the colon.

Another week or two passed and my symptoms were worsening. I couldn’t eat, I couldn’t sit through my classes and I was tired. My PCP scheduled me for an upper GI, at which time he confirmed his suspicions about my potential illness. He referred me to a specialist, who conducted both a colonoscopy and an endoscopy. I remember the terror I felt waking up in the middle of the endoscopy and gagging on the equipment in my throat. While I was in the recovery room, my specialist shared the results: the good news was that I did not have an ulcer. The bad news: I did have ulcerative colitis. It was now March 5, 1995, almost three full months since my symptoms first started.

Not yet understanding what having ulcerative colitis would mean to my life, I was simply grateful to have a diagnosis to explain my symptoms. Hopefully that would mean that relief was on the way!

Thus began the frequent trips to the specialist to begin managing my illness. I began a regimen of six pills spread out three times during the day, plus prednisone. These were meant to put me in remission. And by December I was feeling better! So I stopped taking my medicine. What a mistake! The symptoms returned with a vengeance. And that’s when I learned what my specialist had not shared with me. That I would be sick again, despite that I was feeling well at that time. That I would take six or more pills every day. Forever.

That was one clue that I wasn’t seeing the right specialist. Shouldn’t he have given me more information to help me understand my new diagnosis and treatment plan? Shouldn’t he have referred me to a patient support organization, like the Crohn’s and Colitis Foundation of America?

Another clue that I was with the wrong doctor happened before that revelation. During one of my office visits he was reading his notes from my last visit. He asked me how I was dealing with my grandfather’s death. My grandfather…who was still very much alive! He was very ill, yes, but also very alive. That should have been my first clue that I was with the wrong specialist.

The final straw came during my last visit to his office. The nurse led me to the examination room where I plopped down on the examining table to wait for the doctor. As he entered the room, and before he closed the door, he said to me, almost screaming, “HOW’S THE DIARRHEA?!” I was mortified. Here I was a 21-year-old still struggling with confidence issues and a new illness and he just humiliated me in front of an entire waiting room full of people! Looking back I realize I was at a gastroenterologist’s office and that most of the patients in that waiting room were probably experiencing similar symptoms. But at the time I wanted to crawl out of the window.

What happened next convinced me to put my care in someone else’s hands. After months of trying to find the right combination of prednisone therapy combined with my maintenance medication I wasn’t getting better. He told me he had a 16-year old female patient who was a cheerleader. He had recently removed her colon and fitted her with an ostomy bag. He said if she could do it that I could do it. That was unacceptable to me.

After switching specialists I became better. The new doctor increased my maintenance medication to nine pills per day, and tapered me off the prednisone more slowly than the first doctor had. I have switched doctors once more since then and am very happy with the care he provides. I even consider him my true primary care physician, whether or not the insurance companies would agree.

After living with this illness for 14 years I have learned that even though I may be healthy today, tomorrow I will be sick again. The intermittent cycles of normal living and painful illness are the norm in my life. And it is up to me to take charge of my care. If I’m unhappy with my doctor, or if a medication he prescribed is causing other problems, I have to let me voice be heard. This body is mine and it’s up to me to communicate my needs. After all, if I don’t I’m the one who will suffer the consequences.