One of the most important things that you can do is to find a doctor that is willing to listen to you. This is probably also one of the hardest – it has been for me.
When I was young I went to the same doctor who told me what drugs to take and I listened and followed the plan. My parents were in charge of my health and I was basically along for the ride. Luckily the doctor I had wasn’t bad. On a couple of occasions where, looking back on it I could have lost my colon, he opted for non-invasive treatments that worked. When I moved away for college I kept seeing him until he wanted to put me on Fosomax after being on prednisone for a short taper. I could see the wheels churning. Fosomax wants to expand their market, long-term prednisone use can cause bone density loss. Drug company sends cute rep to give presentation to doctor on how Fosomax increases bone density, now suddenly everyone that sees this doctor that has been on prednisone gets prescribed Fosomax. From a drug companies point of view this makes perfect business sense, from a patients perspective this borders on treachery. You go to a doctor to get impartial medical advice, not to speak with a sales rep.
I demanded a bone density scan before I would take that medicine, it turned out fine and I decided it was time to find a new doctor.
The next doctor I tried was an academic. He was one of the doctors responsible for the research behind how NSAIDS can actually increase inflammation in people with inflammatory bowel disease. Important research, smart dude, but poor doctor. I spoke with him for less then 5 minutes, 4 minutes of which was him talking about his research, 1 spent listing the drugs to take (6mp.. the standard Crohns drugs). When I tried to discuss my past experiences with the drugs he wanted me to take he wouldn’t hear it, he had another patient to see. That was a frustrating encounter. I didn’t see a doctor again for over a year and a half.
I decided I would try again to find a doctor. I called the academic’s nurse for a recommendation of another doctor and she gave me the name of someone who they refer people like me too ? . People like me… people that want to discuss their health with their doctor, be listened too… is that not everybody?
The first visit with her was good, as a new patient she wanted to do a colonoscopy. I hadn’t had one done in years so I told her that she could check out my toosh.. My combined salary/poor insurance kept me from seeing her again for almost a year until about a month ago. At my last visit we talked for about 20 minutes… she gave me the updates on current Crohn’s research. I told her what I was doing and what was working. We had a great discussion about the placebo effect and how a lot of current Crohn’s meds, while effective, have about the same efficacy as their placebo counterparts in trials. It was just a good visit. I came out of that visit feeling refreshed, I had been listened too, not lectured at.
I wish there were an easy way to find a good doctor, like a website that lets you rate and discuss doctors, but I don’t know of one. Your best bet is to ask around, see who other Crohn’s sufferers are seeing and who they are avoiding.