Posted 4/28/2008 2:30 PM (GMT -6)
I recall the pre-diagnosis period being incredibly frustrating. I made an appointment with my GP at the stage when I had some blood: maybe only a teaspoon or two, but obviously there. By the time I saw the GP a few days later, there was more blood and the start of some serious diarrhea. At the doctor's office I got a finger up the bum, a confirmation that yes, there was blood and a referral to a GI specialist (who, when I made an appointment, was unavailable for over a month). I also got a little take-home test kit which I was supposed to use.
When I got home, I discovered that the test kit was to determine if I had blood in the stool, and that I was supposed, on three consecutive days, to collect a sample from the middle of a bowel movement. The test kit recommended defecating on a piece of paper in order to be able to find where the middle was. Meanwhile, my symptoms were becoming very quickly worse and I was getting increasingly panicky. Anyhow, by day three, my "stool" was basically just blood and mucous, and I remember squatting in the bathroom over a newspaper covered with a large red pool, thinking to myself, "Hmm, I wonder where the middle is...", before realising how totally absurd that was and starting to giggle uncontrollably. So I smeared the sample collector and sent it back to the doctor's office. It got even more ridiculous a couple of days later when I got a phone call informing me that I did indeed have blood in my stool. At that point I concluded that the system wasn't really working to my benefit. So I called up the GI office, explained that I probably wouldn't live for the month they wanted me to wait, and got myself in to see the GI that afternoon. Speaking with a doctor who knew what was happening and had some idea what possible therapies might be was a huge relief, at least psychologically.
Anyhow, I learned two things, both of which have been reinforced by lurking here for a couple of years:
1. A typical doctor (GP or ER) probably won't really know much about UC, and will underestimate the severity of the disease.
2. It helps to be forceful, albeit polite, when dealing with doctors and their office staff. Make sure you get what you want: they are there to help you.