Tuesday, August 18, 2015

Poor Data Collection - To Speak Up Or Not?

I'm having some new pains. Mostly upper abdominal pain with some additional generic GI symptoms. It took months before I was willing to admit that there might be a problem worth exploring and a few more months before I actually picked up the phone to make an appointment. Why? Because the thought of more doctors and more problems was more than a bit overwhelming.

But it didn't go away. In fact, it got a little worse and now I'm working with a GI doc and my OB/GYN to discover what the cause or causes are so we can treat it. It might just be a worsening of my endometriosis. Scarring can develop almost anywhere in the body and it can tug on organs and muscles causing pain and such. The treatment would be hormones and possibly outpatient laperscopic surgery to remove some of the unwanted tissue.

Before putting myself through all that we are trying to rule out other causes. To that end I was tested yesterday for an overgrowth of bacteria in my small intestines. The test measured the gases expelled as I breathe out. Completely non-invasive, which I loved. The downside, a big one for a migraineur, was in the preparations. My diet was restricted a little two days prior to the test - nothing horrible. Then one day prior I was only allowed to eat 1 slice of white bread, a white potato with nothing on it, white rice with nothing on it, and a piece of boiled meat with nothing on it (as a vegetarian this actually wasn't an option for me) and I could drink water. Then 12 hours before the test I wasn't allowed to eat or drink anything.

Being dehydrated is a migraine trigger for me, plus I don't have enough reserves to weather a day deprived of calories with ease. By about mid-day on Sunday, the lack of calories had already caught up with me and a migraine slowly crept in. At least I was able to take my rescue med and muscle relaxer before being cut off from food and drink. What a miserable day and night.

I woke incredibly hungry, aches in all my joints, a muscle spasm in my neck and completely parched. At least the migraine rescue med was still holding my head pain back. Now I just needed to get through the test - 2 1/2 hours of blowing into the machine at regular intervals.

By the time it was over I was dizzy, nauseated and my migraine was creeping back in. I basically went home, ate and crashed for about 2 hours.

Happy to be back on my regular schedule today, I've been reflecting on the procedure and am disappointed to say that the data collection was flawed so I don't have faith that the results will be accurate. I did my part, it would have been nice if the testing was done with more consistency and attention to detail. I'm not about to take the test again but I do plan to discuss the methodology with the doctor when I see him again in September.

In the moment I was tempted to point out that mistakes were being made because this was my one shot at getting accurrate results - but I didn't want to be the crazy patient telling the techs they were doing their job wrong (even though they were). That's not the kind of thing people like hearing from complete strangers. Looking back I'm still unsure how the right way to handle that would have been. What do you guys think?

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