I don't think it's that doctors are lacking in diagnostic intelligence, I think it's that they're lacking in communication skills. No doubt they have reasons for taking certain steps before others (i.e. putting me on an elimination series of antibiotics and requesting five negative urinalyses and letting me rot for over two weeks before sending me to a urologist). They are, however, TERRIBLE at explaining why. Why they are unconcerned about the nervous spasms accompanying my loss of bladder control. Why they have not gotten culture results back to me after five days. Why they are not recommending me to a urologist after antibiotics, AZO and various other over-the-counter UTI treatments have done nothing (or exacerbated the symptoms).
Thanks to Moon Face, I was inspired to do some more research into interstitial cystitis, about which I asked the Dr during both my urgent care visits, and which they both brushed off like it was an impossibility (which I allowed because I was all but delirious on both occasions). What they should have told me was that it was important to rule out infection because interstitial cystitis has so few direct markers that elimination of UTI by urinalysis and antibiotic regimens is part of diagnosing IC. They also should have told me that if symptoms persisted despite the antibiotics, to tell them so that they could refer me to a urologist. Additionally, they should have told me that since the first portion of my cultures were also negative, it suggests that -- in agreement with my urinalyses and lack of antibiotic response -- I may actually not have an infection of any kind after all. Doctors, I have noticed, depending on their specialty, have very limited next-step projection skills.
There is a great deal of overlap between occurrence of IC and IBS which gives me hope that my GI will bring IC up as a possibility when he responds to my questions on Monday. However, being a GI he may decide to attribute what's been going on entirely to Remicade or PPR (because that is what I suggested to his nurse last week).
The short time that this has been going on (two+ weeks) relative to the typical time span that it takes IC to be correctly diagnosed (weeks to months) suggests that this still may be neither infection nor IC, but I would appreciate medical input from any of the three Drs who are now involved in this diagnosis. Really, any communication would be helpful, guys. Responding to last Monday's calls would be a super start (yes, I have taken into account that Drs deserve a Thanksgiving break, too).
Although I do not blog about, I was diagnosed with IC 6-7 years ago, but have been controlling it (for the most part) with diet. I spent a very painful semester during my senior year of college running to the bathroom every 10 minutes and it took several urologists (and in pain) to finally consider IC. I then had bladder infusions for a year or so and it settled down. Now, I avoid similar foods that I limit due to my Crohn's, and my IC flare-ups are tolerable. Ahhh....lovin' these chronic conditions!!!
ReplyDeleteah... another testement to the coincidence of IC and Crohn's! yay, i think.
ReplyDeleteencouraging to hear that now that my Crohn's flare is calming down and i have more of a diet to control, the UT spasms may become more controllable as well. incidentally, the urologists just called me this morning to finally make an appointment... which i declined because since this post the symptoms have come and gone away again twice, and are currently not a concern. i'm focusing on the food approach for the moment :) thanks, kathryn.