I'm 21 and have been diagnosed with crohn's since 2004. When I first met my GI, he was very nice, attentive, and I saw him every month. If I ever had a problem, he returned my calls or would easily rush me in to an appointment to see him. Then time went by. The pills that he put me on didn't help much. Whenever I called him to schedule an appt, it took longer and longer for them to return my calls or get me in (Last time I called in, it took 2 weeks for them to return my call and I wouldn't be able to get in for over a month). Then, I went into "remission" (or that's what he called it), he took me off all my pills, and anytime I had a problem, he told me to take OTCs. At one point I got so sick I missed a week of my college classes, and when I called him, he still did nothing! OTCs was all he ever said (and, trust me, I was taking OTCs; it wasn't really helping). He was convinced it was crohn's disease, I was in remission (that's what all the tests said) and so he didn't have anything else for me! I told my parents (who's insurance I am under) that I had to find someone else. So I did.
Now I've met my new GI. He's a 3 hour drive away, but I hope it'll be worth it (there aren't many GI's where I live or that take my insurance). He's nice, attentive, returns calls personally, etc. And after dealing with delinquents at my previous GI's office for 2 whole months to get them to send all of my portfolio and slides to my new GI (my mom and I had to make 5 trips up there to tell them each time they didn't send everything), my new GI is now telling me that he thinks I'm misdiagnosed. The severity of my symptoms don't match (and he believes from looking at my old slides never matched) the amount of inflammation that was present in my GI tract. There is too little inflammation. So, either I'm diagnosed correctly and there is something else wrong, or I've been completely misdiagnosed and whatever is wrong is also affecting my GI tract.
I just feel so aggravated and depressed about this. I'm happy that I made the decision to change and that my new GI is acknowledging that I'm uncomfortable and that it wasn't being addressed. I'm just so mad that I stayed with a GI that wasn't helping me no matter how many times I said that even if I don't have inflammation, I have extreme disabling pain. Like, one of my mom's friends just found out that she has been misdiagnosed with crohn's disease for the past 20 years. She instead has some inflammatory bladder problem and the inflammation had spread elsewhere. She's been living in pain for 20 years and getting treated for something she didn't even have. Like, why do some doctors think that once they found one answer there are no others? The human body is not a straightfoward problem.
*sigh* Sorry for the rant. I just felt like maybe people here could understand my frustration. I think it's hard for my family and friends to understand. They try hard to listen and be there for me, but sometimes they just end up making comments that make me feel bad. I have an appointment with my GI on the 4th; I just hope we are able to start doing things that set us on the right track.