When you get diagnosed with Crohn's disease there is always that feeling of huh? I have what? I remember the day my MD told me in 1986. I actually said to him "you're making that up." I had never heard of it before. How could I have something I've never heard of? After the initial shock wears off, you realize you need to have a good doctor by your side.
After thirty years of Crohn's, I have learned a thing or two about what I need in a good Gastrointestinal MD. Believe me, if I don't like the MD I fire them. I have no problem doing that and neither should you. This is someone you will be seeing a lot and you have to feel comfortable telling them everything they need to know.
When I had my fourth collapsed lung, the Pulmonologist assigned to me would not listen to what I had to say, what I wanted to do. She only wanted to do what SHE said. I fired her right then and asked her to please have another of her colleagues take care of me. Do I care if it made her upset? Nope not a bit. This is MY health not hers that we are talking about.
I have become my own best advocate. I am also a very bad patient. Being a nurse doesn't help there either. I know what works for me and what doesn't. I need a MD that doesn't treat me like a disease. Nor treat me like I know nothing and need to be talked to like I'm 5.
When I moved to where I am now in 1998, I had to pick a new MD. I ended up picking one in the GI practice I worked for. For years I was hospitalized every 6 months for TPN and pain control. I would call him up and say it's time to be admitted and he'd admit me. But after awhile, he started treated me differently. Like I was a drug addict seeking my fix. I had also tried to convince him that I needed TPN every day not just periodically whenever I got admitted. He didn't want to hear anything I had to say. He had made up his mind that I was a drug addict. Even told my husband at the time what he thought. Boy that really helped my marriage!
Finally I said to myself, why am I putting up with this? I KNOW that there has to be a better solution. So I sought another MD. That new MD immediately said I needed TPN every day and couldn't believe my other MD hadn't started that himself. I was so grateful that finally someone listened to me but I was also mad at myself for putting up with that other MD for so long letting him treat me like that. Before the TPN, I weighed at most 101lbs, with TPN now I weigh 120lbs. I have not been hospitalized since 2009.
Then one day, that MD told me he was leaving for another hospital. I actually thought about moving wherever he went! So I had to pick another MD again. The first two I tried I fired. One treated me like I was stupid and actually drew me pictures of the intestines. Like after all this time I didn't know??? Trust me, I have read everything there is out there on Crohn's disease. The other I just didn't feel a connection to. I need to feel that to be comfortable. I finally found the MD I have now. He is awesome. He hugs me every time and actually asks how I am besides the disease. I tell him about other aspects of my life and he listens and remembers. That's what makes a good MD to me.
What you have to do is decide what YOU need in a MD. You may want someone who draws you pictures. It's something you need to figure out for yourself. Once you do, don't stay with any MD that doesn't work for you. Remember it is YOUR health not theirs....
