I have always been fascinated by both the human body and the diseases that affect it. When I was about ten years old, my parents bought me a medical dictionary. I read it cover to cover. I wrote little stories about people with Legionnaire’s Disease and Tetrology of Fallot, describing the symptoms and treatments in vivid detail.
It was in this dictionary that I first read about phantom pain. It always made a weird sort of sense to me. Bodies are creatures of habit, just like us. Of course your body expects to have all of the parts it started with. Of course your brain would assume it was merely misinterpreting signals when suddenly a limb was missing. The alternative was too awful to consider.
It never occurred to me that the body could experience phantom pain from a part of the body that was never supposed to exist. As soon as my epidural line was pulled five days post-op, I started having severe sporadic pain where my stoma used to be. It was distinct from the other pains – the burning in the lower colon, the sharpness in the rectum, the soreness near the incisions.
This was something different. It felt like when my body tried to pass stool through the stoma, but couldn’t because of an obstruction. It was the same exact same sensation. My body remembers the route of a path that should never have been there to begin with.
I lived 29 years without an ostomy. In the two years that I had it, I believed it was the best solution for me, and for most of that time, I believed that I would always have it. The only way to survive was a radical acceptance of this defect. I told myself that this was the best option for my body and I made myself believe it. I believed it so much that even my body was convinced.
I still have a wound where my stoma was. It is closing slowly. Mostly the pain is manageable; I know it will never really go away. Several times a day, I feel my body mimic the pressure of an obstruction behind the stoma, the twisting and lines of pain spiderwebbing into my lower back. The pain isn’t real, but my brain won’t believe it.
Phantom pain is notoriously resistant to pain medication. One of the better options is the use of psychological “tricks” to convince your body that it is still intact. I am thinking about how to do this. But I don’t know which version of my GI tract my brain thinks is real.