Ever read something on a medical test result that looked bad? Or, at a minimum, a little suspicious and your doctor either doesn't bring it up or if you ask about it they say "oh that's nothing"? And you're sitting there, kinda confused, kinda concerned. Why do they do that?
Since the creation of the electronic medical record, and patient portals, people have unprecedented access to their medical information. Including reports from tests, from routine blood draws to complicated MRIs, that historically have only been seen by physicians. Unless we specifically requested paper copies. This, combined with Dr. Google, has led to much more educated and informed patients.
*Cue old timey music*
Now kids, pull up a chair. I have a story for yuns....
People my age have one foot in pre-internet times and one in post. I first saw the internet and email in college in 1995 (Netscape Navigator, what?!) I had an AOL account on a dial-up connection. My first cell phone was a Nokia 5110 with PrimeCo as the carrier. I used Limewire and Napster to stea....download music. It took, I don't know, 4 days to get 1 mp3.
I was 22 years old in 1998, living in Wicker Park, a neighborhood in Chicago, before Wicker Park was "cool" (Thanks, Real World). I literally had a prostitute living in the apartment below me and I sold cigars in a shop down Milwaukee Ave. where the owner was later sued for sexual harassment. I kneaded bread in a local bakery alongside undocumented Polish workers at 5 in the morning. My apartment building was between the "Occult Bookstore" and a gaudy Mexican furniture store. Across the street was The Double Door, where iconic musicians like The Smashing Pumpkins, Cypress Hill, and Chance the Rapper played before they were big. These were good times.
Little did I realize, in the midst of all this 20-something fun and sweet technological advancements, I would be diagnosed with Crohn's disease in 2002.
I'm pretty sure my cell phone was a Sony Ericsson of some sort; I just remember a high tech color display. At this time, my early medical records were on paper, but some did end up in the newly implemented electronic system including the 2 barium studies that were the basis for my Crohn's diagnosis.
Back in '02, the "bottom-up" approach to IBD treatment was the norm - start with the least potent meds then work your way up to the strong stuff if those were ineffective. Remicade was the only biological medication on the market for Crohn's and it was considered new and risky and kinda scary. My GI wasn't sure it was really Crohn's after I failed to respond to budesonide, so I went a year or so with no treatment as he tried to figure it out. He didn't want to be wrong and put me on Remicade.
In 2004, when I'd upgraded to the ultra-cool Motorola Razr, I grew my first fistula and my whole world changed. Little did I realize, I'd really grown my first fistula in 2002 (or maybe earlier) but my then-gastroenterologist either ignored it or missed it on those 2 barium studies. I don't know what he was thinking because my clinic notes were on paper and I have no clue where those are today.
I've been in a bit of a flare up for a while, most of this year, and I was talking about my early Crohn's days with my current GI doc, which prompted her to go back and look at those old barium studies from 2002 I brought with me when I switched my care. She sent me the following message via MyChart then asked me to call her:
Why my former GI doc ignored the fistula is an unknown. Am I angry about it? Yes, because now that the eagle has landed, so to speak, I don't have good treatment options if my new medication doesn't work. It behaved for 10 years, so I'm going to go with the meds will work.
But it also shows that tests are sometimes an imperfect science and clinical judgment is vital. There are going to be findings on a test that don't mean much of anything in the big picture of each individual patient, and a doctor will decide they're not worth treating or further investigating and everything is fine. Additional testing or treatment would actually be worse, both in terms of the patient's health and unnecessary costs. That's good doctoring. But when something like this happens, it feels catastrophic.
I've had my share of normal tests when I'm symptomatic, abnormal tests when I'm not, and inconclusive tests that confuse the whole situation. For me, medical tests invoke anxiety. Not because I'm claustrophobic and need to spend time in MRI tubes, or I have a needle phobia. The tests themselves don't scare me, it's the results process. How will my doctor interpret something that isn't blatantly obvious, which, for me, is rare? Will something get dismissed that will later come back to bite me in the ass?
My current GI doc understands this anxiety, and is able to talk me down when I get worked up. I'm fortunate in that regard. But if I could go the rest of my life without a medical test, that'd be cool.
Since the creation of the electronic medical record, and patient portals, people have unprecedented access to their medical information. Including reports from tests, from routine blood draws to complicated MRIs, that historically have only been seen by physicians. Unless we specifically requested paper copies. This, combined with Dr. Google, has led to much more educated and informed patients.
*Cue old timey music*
Now kids, pull up a chair. I have a story for yuns....
People my age have one foot in pre-internet times and one in post. I first saw the internet and email in college in 1995 (Netscape Navigator, what?!) I had an AOL account on a dial-up connection. My first cell phone was a Nokia 5110 with PrimeCo as the carrier. I used Limewire and Napster to stea....download music. It took, I don't know, 4 days to get 1 mp3.
 |
| Sweet |
Little did I realize, in the midst of all this 20-something fun and sweet technological advancements, I would be diagnosed with Crohn's disease in 2002.
I'm pretty sure my cell phone was a Sony Ericsson of some sort; I just remember a high tech color display. At this time, my early medical records were on paper, but some did end up in the newly implemented electronic system including the 2 barium studies that were the basis for my Crohn's diagnosis.
Back in '02, the "bottom-up" approach to IBD treatment was the norm - start with the least potent meds then work your way up to the strong stuff if those were ineffective. Remicade was the only biological medication on the market for Crohn's and it was considered new and risky and kinda scary. My GI wasn't sure it was really Crohn's after I failed to respond to budesonide, so I went a year or so with no treatment as he tried to figure it out. He didn't want to be wrong and put me on Remicade.
In 2004, when I'd upgraded to the ultra-cool Motorola Razr, I grew my first fistula and my whole world changed. Little did I realize, I'd really grown my first fistula in 2002 (or maybe earlier) but my then-gastroenterologist either ignored it or missed it on those 2 barium studies. I don't know what he was thinking because my clinic notes were on paper and I have no clue where those are today.
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| Also available in pink. |
"I went back and reviewed the enteroclysis scanned from 2002 into EPIC,
and it appears there was a [small bowel] fistula based on that result."
I added the "small bowel" part.
In 2002, on 2 separate barium studies, a fistula was present from my small bowel but hadn't made it anywhere yet. I'd never heard about this. It never came up with my old doc. My current doc periodically mentions a small bowel fistula in the context of my current flare and I was like "nah, that's not a thing" in my head, and just assumed she was confused there was one, not that she had read it 7 years ago when I came to her for my care.
Why my former GI doc ignored the fistula is an unknown. Am I angry about it? Yes, because now that the eagle has landed, so to speak, I don't have good treatment options if my new medication doesn't work. It behaved for 10 years, so I'm going to go with the meds will work.
But it also shows that tests are sometimes an imperfect science and clinical judgment is vital. There are going to be findings on a test that don't mean much of anything in the big picture of each individual patient, and a doctor will decide they're not worth treating or further investigating and everything is fine. Additional testing or treatment would actually be worse, both in terms of the patient's health and unnecessary costs. That's good doctoring. But when something like this happens, it feels catastrophic.
I've had my share of normal tests when I'm symptomatic, abnormal tests when I'm not, and inconclusive tests that confuse the whole situation. For me, medical tests invoke anxiety. Not because I'm claustrophobic and need to spend time in MRI tubes, or I have a needle phobia. The tests themselves don't scare me, it's the results process. How will my doctor interpret something that isn't blatantly obvious, which, for me, is rare? Will something get dismissed that will later come back to bite me in the ass?
My current GI doc understands this anxiety, and is able to talk me down when I get worked up. I'm fortunate in that regard. But if I could go the rest of my life without a medical test, that'd be cool.
--T2