Posted by boakley59 on January 26, 2008
My life as a lump began in May 2007 with a flare-up of my Crohn’s disease. A couple of months of mild abdominal disturbance had me watching my diet and trying to figure out any correlation between meals and discomfort. Late in May, the symptoms graduated to pain and swelling in my butt that made it intolerable for me to sit or walk around for more than about 90 minutes at a time.
That stopped me from working and put me in the hospital. Since then, I have been essentially couch-ridden, with two more hospitalizations and surgery thrown in. I still can’t sit or move about for long, because the pain suppression drains me.
This life as a lump has taught me some interesting things about myself and the medical system. Some of those lessons follow.
I call it life as a lump because when I say couch-ridden I also mean largely unthinking. I can watch TV or listen to music, but really concentrating on something — reading, conversation, playing guitar — burns calories fast and weakens me, so that healing slows. If I think too much, I can’t eat enough to get well. I am apparently a hothead (perhaps no surprise to some who have seen me in full rant or playing sports), steaming through calories by brainwork alone.
It sounds ridiculous, but my brain is a drain. Over one two-week stretch of my illness, my medicines, meals and routine were consistent except for daring to read two books during the second week. I lost five pounds in that second week. Even now, I’m pushing it a bit to be writing blog entries, and I have to be careful of my time and effort.
Are you listening to me?
My latest hospitalization came on a trip to the emergency room after I fainted momentarily at home during an attack of pain and nausea. The stay included surgery to clear the painful, swollen, false waste tunnels my body carves for itself. While in pre-op awaiting surgery, Suzy read through the hospital’s medical binder on me. We have learned through the disability claim process that medical records don’t necessarily match what you thought you explained about your condition.
Suzy practically screamed when she read the admitting doctor’s summary: The patient had been “doing fairly well until recently.” She wondered what part of being 15-20 pounds underweight, having pain and swelling that made it impossible to sit for 90 minutes at a time and having been on alternating antibiotics for seven months constituted “doing fairly well.”
What I had told the doctor in his admission visit was that I had started a new antibiotic about two weeks before and had gained three pounds in the first week. I said that I had increased appetite, but I also reported that the gains did not hold through the second week. This modest and brief weight gain, the first in two months, was the only positive thing I remember reporting.
If you can breathe, your x-ray looks like emphysema
Medical professionals seem to have a different take on patients’ bodies. The emergency room protocols also included a chest x-ray. The radiologist’s summary in the pre-op binder noted the lungs showed “hyper-inflation consistent with emphysema” and chronic obstructive pulmonary disease (COPD). We had been told nothing of this, so the report was quite a surprise. I have been a long-distance runner and do not smoke, so this diagnosis seemed out of the question.
We asked my attending physician how this could be, and why the emergency staff had made no mention of it. He explained that the technician asks patients to take and hold a deep breath for the x-ray. For those who are generally fit and can actually hold their breath throughout the procedure, the lungs look greatly expanded, as they do in emphysema. Radiologists presumptively report this as “consistent with” the disease but do not mention it in the absence of other matching symptoms.
The eyes have it
It’s those little things that surprise. My illness has taught me just what a hothead I am, but it also has shown that I have a sensitive side. I found myself teary-eyed in post-op, and I wondered why. I knew it was not from any emotional drain of surgery or the aftereffects of anesthesia. I asked the nurse for a tissue to wipe the tears and didn’t think much more of it. Later, back in my hospital room, my eyelids were irritated and I had to keep wiping tears.
When the surgeon checked on me the next day, I mentioned that my eyelids had been irritated all night and the only thing I could remember near them was the nurse’s tissue. Had there been some germ or allergenic coating on post-op tissues? Was a successful surgery going to be undermined by a hidden threat from the recovery room?
No, the surgeon explained: During surgery the eyelids are taped shut so that while the anesthesia mask covers the face and surgical staff move instruments around, the patient doesn’t get poked in the eye. Most patients don’t notice, he said, but apparently I am extra sensitive to the glue or to the roughness of the tape surface.
Pumped up but dried out
Many of the medical procedures that help one system take a toll on another. My recovery protocol included powered leg wraps that regularly squeezed and pulsed to stimulate circulation. These are a blood-clot preventive for patients who are not considered sufficiently ambulatory. My legs are hairy and thin, however, and the wraps were set so snugly that they acted as water wicks, absorbing plenty of sweat and drying me out. This countered the IVs and fluids I was taking to ease the effects of waste passing through my system. When I mentioned how sweaty my legs were and how dried out I was with the leg wraps, they were removed as unnecessary. It turns out I was a fairly active and energetic patient anyway, with fidgety legs and moving around enough to use the bathroom and such, that I was not in much danger of clotting in the first place.
You’re the doctor
The chief practical lesson in all of this is that patients and their families must be vigilant advocates in their medical care. Patients should be careful not to take their lumps lying down.