For years I’ve been battling Crohn’s disease as well as a rare liver disease, and currently am on the liver transplant list. On June 24, 2013, I underwent surgery for a total colectomy, in which my entire colon was removed and a temporary ileostomy was created. The surgery itself went well, but my post-op recovery had complications and was the most painful and challenging 15 days of my life. I recounted my “misadventure” in a series of blog posts, starting with the one below.
I was frozen. Stuck. The pain wouldn’t let me move. I had just woken after falling asleep lying on my left side instead of on my back, which I normally do. All that time asleep had stiffened my lower back, and the moment I tried to roll over, a lightning bolt of pain struck and I let out a gasp. My back had been giving me problems for several months at this point, but this was worse than ever. In fact, I couldn’t remember the last time I was in so much pain. However, this was like a pin prick compared to what I was about to go through in just a few hours.
The surgery was scheduled for 6 a.m., and because I live more than an hour north of the hospital, Jackson Memorial Hospital in downtown Miami, I spent the previous day at a nearby motel, and the rock-hard bed did nothing to help my back. To prepare for the surgery, I had to fast and drink GoLytely to clean out my insides. I also had to take two showers (one at night, and one the morning of surgery) using a special medicated cleanser. And my back was killing me the whole time. Taking a shower was especially difficult, not only because of my back, but because of the PICC line in my arm (for my nightly IV nutrition), which can’t get wet. I was beyond miserable. But again, I would soon be looking back on this as a walk in the park.
I arrived right on time to the hospital, forgetting that there would probably be a long line of patients ahead of me. Sure enough, there was a line. I looked at all the patients and their family members, and wondered if any of their situations were similar to mine, if any of them were terminal and other random thoughts while I stood in line. After signing in, I found a spot on a bench, slouched back and eventually fell asleep. The wait was that long. By the time they called me, I was a bit groggy and not fully aware of my surroundings; the reality of what was about to happen was not processing in my brain. It would hit me soon enough.
Even before the surgery began, I knew I was in trouble. One of the medications I take has been known to cause complications for post-op pain management, and though in the months prior to surgery I had asked probably a dozen doctors about it, they all insisted I had nothing to worry about; they would take care of it, they said, and I could resume taking my normal dose.
One member of the liver transplant team — a fellow, I believe — was offended that I questioned their ability to manage my pain.
“I’ve heard some horror stories from other people who had surgery, and the doctors didn’t know anything about the treatment,” I told him. “I’ve heard directly from people who’ve experienced it.”
“No, no, no. They don’t know what they’re talking about,” he said, rather defensively. “These are medical professionals. They would never allow a patient to suffer in pain.”
“So I have nothing to worry about?”
“We’ll take care of it.”
I offered to give him and the other doctors some literature I had brought along, which explains various treatment options. None of them wanted to read it. They told me it was all under control. I’d soon learn the hard way that these doctors were just talking crap, thinking they knew everything and didn’t need to listen to the “know-nothing patient” and his silly concerns.
Rule No. 1: Doctors don’t always listen. Rule No. 2: Make them prove they understand, rather than taking their word. Rule No. 3: Sometimes the patient knows best, and there are times you have to listen to your body over the objections of the doctor. This was an especially tough lesson to learn, and it’s one I learned over and over again. The only thing I felt more acutely than the pain was anger at the doctors who enabled this situation to occur. They had some serious explaining to do.