I don't know how it happened, exactly, but I learned, years ago, to have a healthy disrespect for doctors. This doesn't mean being rude or unkind, it simply means looking out for your own health. We all tend to believe that doctors know everything, that they hold all the cards. Well, we're wrong, plain and simple. The hospital/clinic group I am a patient with has a "Speak Up" policy which is something I have been doing for more than 20 years.
When I first started out on my journey with IBD I had no idea what I was dealing with and I had to learn fast. My first doctor was, quite simply, bad. I won't go into detail, but I will say that he relied heavily on prednisone. A few months after my diagnoses he did a colonoscopy which showed that I was in remission, but he read it as he must have been wrong and I did not have Ulcerative Colitis. He took me off of the prednisone and said I was free to eat anything I wanted. What?!? I immediately flared and we found a new doctor. He was connected to a teaching hospital, and I really liked him. He was very knowledgeable and had great resources.
When I couldn't go to him any longer, I went looking for another doctor and it was very eye opening. That first doctor I saw did not talk to me; he talked over my head, as if I wasn't there, and spoke to my mother. He told us there were all these tests he wanted to do and then he did a flexible sigmoidoscopy where he had me lay my torso on this table which he then flipped over so my head was down and my naked butt was in the air. Um, yeah... I kid you not. I felt humiliated, to say the least, and I was so mad I cried and bitched all the way home (two hours). We all agreed he was not the doctor for me and never went back. The next doctor I went to was amazing and I stayed with him for eleven years, until I moved away.
There was a really high bar set when I went looking for a new doctor in my new town. My mother reminded me of the doctor we tried first. He was nice and all, but it was probably mostly my fault that things did not work out. The first time I met with him he made suggestion after suggestion all of which I rejected because they had not worked in the past. Mom reminded me that he seemed to just sink as I rejected each thing and he seemed older when we left than when we entered his office. I told you, I have a healthy disrespect for doctors. I'm not afraid to speak up for myself.
I will not bore you with talk of the doctor I saw who was part of a large group practice. I'll just say that he was a chore. Then I tried yet another doctor who was, again, nice and all, but he told me that we were left with prednisone. A long time ago I rejected prednisone because it makes me crazy. So, we were at an impasse. Together we decided that j-pouch surgery was a good option. But that's a story for another time. Following my surgery, I stayed with my surgeon for a couple of years, he was very good, but when I developed chronic pouchitis he told me that I had to find a gastroenterologist.
So, the search began again. This time I had the added difficulty of having a j-pouch, which after making at least three calls we were told that none of the doctors would see me because they didn't treat patients with j-pouches. Again, what?!? I was eventually able to find a doctor who was willing to treat me and it has been a learning experience for both of us. I have what's known as refractory pouchitis, meaning it does not respond to medications. Thankfully, this doctor and I are working together on my health care. I listen to him and he listens to me and he's not too arrogant to ask for help from his colleagues when he thinks he's in over his head. And with me that's a pretty common feeling. Can you say "refractory?"
I must say that I have been incredibly lucky when it comes to doctors. I haven't had to fight with doctors, very much. We have to remember that doctors aren't infallible. That our health care is a collaborative effort between doctor and patient. Don't let doctors intimidate you; ask questions, clarify answers before you leave and if you don't understand don't be afraid to call your doctor(s) for clarification. Most importantly, make sure you are heard. I know, easier said than done. I struggle with doing this, myself. Making notes helps, writing down questions or what you want to talk to your doctor's about is a big help.
Okay, this post is extremely long so I'm just going to say, good luck and speak up.
