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I was daignossed in 2002 when I was 17 and have been managing my Crohn's since then. My first GI Dr helped me get into remission for a short period, but treated me with only 2 infusions of Remicade over the course of a year and without more regular infusions I went back into a flare a little over a year after my initial diagnosis. I soon swtiched to another GI Dr who did a wonderful job treating me with an incredibly warm and considerate staff working at his practice. For almost 4 years I had that same doctor until I had to move to Tallahassee to transfer schools. The only GI doctor which accepted my insurance was a stark contrast to my previous doctor which made me start to worry. In the two appointments I had with him he rarely made eye contact, never shook my hand, and sat at a small table with his back to me much of the time. My old doctor would sit down next to me at eye level and was very personal, so this made me feel very uneasy. Additionally his office was unable to get my medical records for almost the entire time I was a patient when I had them sent from my old doctor TWICE. Over the course of a year of adjusting to this change in practices I've become incredibly stressed out by the whole procedure of working with doctor's and their offices. I know this has made me a little short sometimes with people, but I would think that some doctors and nurses might be able to consider that with a condition like Crohn's. I had a nurse at the hospital I go to for infusions patronising me because I said I might not be able to wake up at 7am for a rescheduled
infusion because I was waking up 4-6 times in my sleep to use the bathroom and was running on 3-4 hours. I went an extra 8 weeks without an infusion becuse my doctor had to authorize the hospital to do so and he wanted me in for an appointment (w/o my med records!) which I wasn't able to get into for 3 weeks as I gradually became more symptomatic!

 Reply posted for wright42.

Chris,
DO NOT beat yourself up over this.  The doctor is clearly the one who has a problem here, not you.  Yes...what you said wasn't appropriate, but his response (as well his nurse's) was even more inappropriate.  To be in their position and punish someone so deliberately for such a brief error in judgement speaks volumes regarding the size of their egos.  Hopefully, with the help you're getting to find a new doctor, you'll be successful soon.  Maybe this situation will turn out to be a positive one in that you'll find a good and caring doctor this time round.  I am hoping for that and will pray for you.  Meanwhile, I think the fact that you're 23 and dealing with something so difficult is deserving of kudos......and you have them from me. 

 Reply posted for wright42.

Sorry for the confusing multipule posts I mixed up the last two when posting it was too long for one.

 Reply posted for wright42.

Normally I'm a very nice person (almost too nice), but when I get stressed out over my Crohn's it changes my affect. While I was looking for another doctor anyhow I'm now very worried (hopefully for no reason) that my last doctor may notate somewhere on my records that I'm "non-compliant" or "beligerant" or something of the sort which may effect my chances of another doctor picking me up. As is I don't know if I can even get my next secduled infusion in 3 weeks from the hospital without having a GI doctor and I still need my disability paprework filed with FSU asap (I have my better old dr and my primary working on it). Overall this whole sitation with dealing with doctors for my treatment has become overwhelmingly stressful, I want to get mad at myself for being so rude, but then I think the doctor was doing a poor job and that my comment wasn't totally unwarranted. Most everything else in my life is going fine, but I'm so centered on all this its eatting me up and I can feel some of the effects in my gut. Thank you anyone who took the time to read my whole rant here.. I had to get it out somehow. I just registered today when looking for a new doctor who really understand's Crohn's and I would really appreciate any feedback anyone has about this. I think maybe I'm just freaking out a little, but I don't want to take it too lightly and find out the hard way.

Chris

 Reply posted for wright42.

 With all the undue stress I don't know how I didn't go into a full-blown flare. The last straw for me stress-wise came recently when I was trying to get my doctor to fill out a form for FSU to recognize that I have Crohn's disease with some basic information on my diagnosis and treatment. The nursing staff told me I would have to come in for an appointment to get the form filled out (which was literally 3 paragraphs, hand written at most). I needed the form filsed as soon as possible and when the nurse said she didn't even think he fills out such forms my stress got to me and I became a little aggrivated. So I made the comment "I know the Dr isn't always the most competent, but atleast he can fill out a short form sometime this week." It was an inappropriate statement, but I had been really stressed (and felt horrible right after I said it despite my dissatisfaction) - though it gets better. As I tried to recant my statement the nurse put me on hold without saying a word and when she came back said she put a note on the doctor's desk to let me know. She let him know about the form I wanted filled out and about my comment I made. A few days later I recieved a certified letter from my doctor telling me he is dropping me as a patient and when I called to find out why I was given the response "something happened when you called about some form." I know I was wrong to say what I did, but I thought that maybe the doctor or someone would possibly have considered that my condition stresses me out sometimes, I'm still fairly young, and I may come off as a little rude sometimes. Or that a professional doctor wouldn't be concerned about the (baseless?) comment of a 23 year-old patient.