If I could do one thing differently regarding my illness, it would be finding a good doctor as soon as I got diagnosed.
When I was diagnosed, I was on an HMO plan that I chose because it was easy and inexpensive. I didn’t have a lot of health problems at the time, so it didn’t seem to matter much. I didn’t love the gastroenterologist I saw, but she seemed fine and my disease was mild at the time. There was a lot that was convenient about the health plan, such as having the ability to email your doctors (I hate talking on the phone). When something went wrong, I knew who to contact and where to go. In many ways, it was easier not having choices.
But there were problems. And those problems became a bigger deal the sicker I got. It was impossible to get an appointment with my gastroenterologist. I gave up trying because by the time I saw her I’d be feeling better anyway. Emailing was easier than calling, but she would take a week to respond to emails when she was supposed to respond within two days. If you called instead, the nurse would tell you to email the doctor. I was told at one point I would have to wait at least six months for a colonoscopy. I scheduled one with a different doctor at a center out in the suburbs, and my husband had to rent a car to take me there.
And those were just the logistical problems. I also didn’t trust that she knew what she was doing. Her response to everything was to tell me to stop eating lactose and to eat more fiber. I’m not lactose intolerant, but she continued to tell me not to eat lactose every time I contacted her. I have since learned that eating more fiber is terrible advice for someone in the midst of a colitis flare. You should be eating less fiber during those times, not more. She did not prescribe stronger medications until I got very sick.
Here is what I eventually learned:
- If your doctor is not responding to you promptly, you need a new doctor.
- If you can’t get an appointment with your doctor when you need one, you need a new doctor.
- If your doctor is not doing anything for you when you repeatedly tell her you’re not feeling well, you need a new doctor.
- If you don’t trust your doctor for whatever reason, you need a new doctor.
So what is important in finding a good doctor? Here is my list:
- You need to trust them and feel comfortable talking to them about your illness.
- You need to be able to get answers from them in a timely manner and get appointments when you need them.
- They should specialize in the disease you have or at least treat a lot of patients with the disease.
- They should be keeping up to date with the latest treatment options. New research and medications are being developed all the time.
To find a new doctor, I looked at Washingtonian Magazine’s list of top doctors. I looked for female gastroenterologists who specialized in IBD. I found one at Georgetown who directs their IBD center. I figured someone at a teaching hospital’s IBD center is up to date with the latest treatments and research and knows what they’re doing. I also found someone through My Crohn’s and Colitis Team, a social network for people with IBD, who lives in my area and asked her who her doctor was. It was the same doctor I had found at Georgetown and she highly recommended her.
Unfortunately, to get a new doctor I needed to switch health insurance. I waited for open season and switched to a PPO that would give me more options. It is more expensive, and more work on my part. I know it’s not possible for everyone to make a change like this. But it allowed me to find a great doctor and I am much more confident that I am finally getting the care I need.
I have been seeing my new doctor for about six months. I have to call instead of email when I have questions or issues, but a nurse calls me back the same day. They actually help me when I’m not feeling well, instead of just telling me not to eat lactose. With the exception of the first appointment, I am able to get appointments when I need them (and they were even able to move up my first appointment when I called and told them I wasn’t feeling well). I trust that my doctor knows what she is doing, and she explains things well.
I regret not switching earlier. I justified not switching because my illness wasn’t that bad. But it is much easier to do all of the work to switch when you are feeling ok and it isn’t urgent. I waited until I was really sick, postponed starting a new medication because I wanted to switch doctors first, and ended up in the hospital before my first appointment with the new doctor. Don’t do what I did. If at all possible, find a good doctor at the outset.
What about you? How did you find your doctor? What advice do you have regarding choosing a doctor?