Evidence vs. Experience

I was having trouble believing something my doctors said. According to them, I only had proctitis. My disease was supposedly only in the rectum, the farthest-out portion of the colon. My colonoscopy in February and my sigmoidoscopy in May had shown the rest of my colon to look perfectly healthy, with a smooth, pink lining and tidy little red veins. It looked the way a colon is supposed to look. (If colons are “supposed” to look like anything. Is that the right phrase? I’m not convinced we were designed to look at each other’s colons.)

But I kept wondering if the doctors were missing something. For one thing, sometimes my symptoms had been far more severe than typical proctitis symptoms. For another, it was in the rest of my colon that I’d been feeling all sorts of sensations…even as my energy and strength had returned.

from https://quizlet.com/40177078/anatomy-2-digestive-system-flash-cards/

First there was the gurgling. It occurred often, and always in my upper abdomen, where I was sure my transverse colon lay. Prior to studying digestive anatomy, I would have just labeled this area “my stomach,” but the largest section of the colon sits just below the stomach. I could frequently feel, and sometimes hear, this gurgling. It was like when you suck the dregs of a milkshake through a straw and a lot of air passes through. I could feel that same gurgling, slurping movement of air inside me.

Then there was my persistent, mild, acute pain, always in the same place: the upper left corner of my abdomen. Here the transverse colon takes a sharp turn before descending to the rectum. I suspected this corner was inflamed, and food was having trouble passing through.

Every time I raised this suspicion with doctors, they said my pain was likely referred pain–pain felt in one area of the body but originating in another. Perhaps the inflammation in my rectum was somehow referring to my colon. Since my colon looked normal in the painful spot, there was no evidence to support my suspicions.

I found this response irritating. What were my observations and experiences, my symptoms and my feelings of what was happening in my own body? Were they not also evidence? And I didn’t know much about referred pain, but I was suspicious of this answer. A little Googling told me that referred pain is often diffuse, a radiating pain, for instance the way women might feel a heart attack in the neck, shoulders, or back. My pain was acute. It was specific. It did not make sense, intuitively, that the nerves from my rectum all pointed to this one spot in my colon.

Whatever was visibly happening in my rectum, I felt sure that it related to something invisibly wrong farther up. The whole system was out of whack. My reading was teaching me that the body’s systems are an integrated whole–the rectum isn’t just an isolated little pocket, independent of everything else. Western doctors tend to think in pieces, compartments, and silos. Our doctors are often specialists, and the doctors treating me specialized in digestion. Based on their calculations–no visible inflammation equals no problem–my colon had to be just fine. I felt these calculations were blinding them. How much did they know about the whole body–for example, about autoimmunity? About systemic inflammation?

Eastern medicine looks more at the whole body. I was beginning to think that way, too.

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