Posted 4/3/2008 10:20 AM (GMT -6)
I got my remicade yesterday, and it is administered in an infusion room with a "remicade nurse", so I thought maybe she could answer some of my questions. Pah.
I asked her right off the bat about the HPylori, and she knew a little about it. She had it herself at one point, and she did remember that it took two different kinds of antibiotics in unison to treat it. That was the end of her helpfulness. She tried to make it sound, in not so many words, that this was an ailment that affected the general population only, not crohnies, which makes oh-so-much sense. In her mind, us crohnies are not part of the "general population" apparently, and therefore unable to contract the bacteria? Why does it always have to be some convoluted mystery with us... I would be perfectly content to have an ailment of the general populace. She didn't find the humor in my jaded replies. Again, PAH.
I often use her as a go-between with my GI, as she has a fast=track way of communicating with him that I do NOT have. She, however, told me that they do not test you for HPylori unless the doctor deems it a probable cause.
I explained to her that I had an ultrasound, and a CT scan - both showed nothing. My symptoms remain. At what point, I asked, does bacteria become a probable cause? She babbled on without really answering.
SO. I see the actual GI tomorrow morning. I am not anticipating having any better luck with him. I just don't understand why they haven't even done a stool sample yet! They'll send me for hundreds of dollars worth of pointless ER visits and CT scans, but they won't just do a simple culture? Am I missing something here? Goodness.
My goal tomorrow is to convince my doc to do a stool sample, and possibly a breath test. And no matter how mad I get, I MUST NOT leave the doctors office without sufficient pain pills, anti-nausea, and lamotil. I figure, worst case scenario, I'll go on a liquid diet for two days before the wedding and pop an anti-nausea and pain pill before the ceremony. This should keep me from having to run to the bathroom, and from doubling over and wrinkling my wedding dress!
The ways us crohnies learn to improvise, eh? All will be well. Eventually. I'm doing better now that I've resigned myself to the fact that I will NOT have this figured out prior to next Saturday (the BIG day). I will make the best with what I have, and piece it all together after the wedding. The GOOD GI that I had to leave behind when I moved last year is going to research GI's in my current area to see if he can find someone he knows or trusts that I could go to instead of the goof balls I'm seeing now. I think if I can find a better doc when I get back from the wedding that I'll have better luck.
If I have an unexpectedly eventful appointment tomorrow I'll let ya know. But like I said, I'm not holding my breath for any help from this doc.
Thanks again, for all of your help!