Twenty years ago, after being incredibly sick for five long years, I underwent major surgery that saved my life.
It was the first of a two-stage process to give me some semblance of my life back, a life whose quality had deteriorated to such a low level, I wasn’t even aware how bad it had gotten.
I have ulcerative colitis. Though the surgery can be considered a “cure” for the worst symptoms of the illness, this autoimmune monster, caused by a genetic mutation passed on from generation to generation, is always carried with me, and the potential it has to wreak further destruction always a shadow over my shoulder. I was only 20 when I got sick, still in college, and thought I just ate some bad chicken. When the blood started, I called my Mom, and she drove to school and took me to the ER. That was the beginning of my five year journey of hospitals, blood, pain, embarrassment, depression, medications, experiments, bills and desperation. It is perhaps because I got sick so young – and lost my father that first year I was sick – that I’ve always had a more acute awareness of how short our time is here on earth together. It’s why I’m always urging people to take better care of themselves, to tell those they love how important they are, to do and say all the things you feel, because I really know how tenuous our grasp, how precious this life, and how important a feeling of good health is.
I have been very lucky. I was an excellent, excellent candidate for surgery. Other than this socially inappropriate illness marked by bloody diarrhea and cramping 25 times a day or so, I was in generally good health. Strong and young, I was only 25 when I underwent the 7-hour surgery, which has advanced by leaps and bounds in technique since then. Indicators were that if things went as planned, I could either be a little bit better, or a LOT better. But either way, I would be BETTER than the misery, physical and mental, I had been dealing with for years. It was by simply pointing that out that my surgeon, who at the time was the Chief of Colorectal Surgery at the Cleveland Clinic (no small potatoes, that), convinced me to go ahead with something I had refused to even consider for so many years.
When you’re chronically ill, you go through stages. Denial. It will get better. It’s temporary. Unfair. Why me? Why can’t I just have a normal life? Anger. I’m going to do what I want when I feel good, because those times are so brief in between episodes of good and bad. All the drugs! All the sex! All of the drinking and partying! All of the time! Until that day when the blood appears in the bowl again, the cramps double you over and you start the whole roller coaster anew, crying uncontrollably, turning down invitations to go do stuff. Nope, can’t go to that new little diner, they don’t have bathrooms. Can’t go canoeing, are you kidding? Can’t fly anywhere; that 20 minutes in takeoff and landing where you have to sit in your seat? Impossible agony.
I had two jobs at the time. I lived on one side of town (west), had a day job way on the E side of town, and then a 2nd job that was way south (Lakewood, Beachwood and Cuyahoga Falls, for you local readers). If you don’t think I knew the location and state of reliable cleanliness of every public bathroom between all of those points on the map, you’re kidding yourself. I could have written a guidebook about it. Traffic jams were cause for extreme anxiety. With colitis, you simply CANNOT be prevented from getting to a bathroom immediately when you need one. I’ve driven in the emergency lane before to get off the highway. I’ve been ticketed for speeding trying to get to a bathroom, and then not making it. It’s humiliating and horrible and I guarantee someone you know is dealing with this, or it’s sister disease, Crohn’s, or it’s bastard cousin IBS. But it’s not for polite discussion.
I was taking 72 pills a day for a while. The high doses of prednisone I’d been on for so long weakened my bones and I developed osteopenia. Which is why one of my ribs broke when I was trying to stay strong and doing a handstand push-up. And why a vertebra in my back broke during a horse riding accident. I was in every new drug trial known to conventional medicine, and, with my doctor’s encouragement and approval, trying every alternative therapy that was out there. Macrobiotic diet, Chinese herbal medicine, biofeedback, acupuncture, therapy, you name it.
I finally accepted I was not getting better. That my quality of life was so low I wasn’t aware how bad it had gotten. That my desperation was dangerous and I was not interested in living this way any longer. So, with nothing to lose, they took out my large intestine, the entire, diseased organ, and the rectum. They fashioned a new sort of rectum out of the small intestine – the ileum, and then I had to go in a bag for three months until the next stage of surgery, where they reconnected the ileum and, we hoped, went like a normal person, or as close to normal as you can get considering the surgery.
My stomach is a road map of scars. Opened from pubic hair to middle of my abdomen, the surgeries caused an enormous amount of scar tissue in my belly, which became the reason, years later, I was unable to get pregnant without going through IVF.
It was a hard road, yes. Recovery was extremely slow and very painful. When I could finally make it down the hallway to fetch my mail, it was a big deal. But of all the days in my life that are memorable, there is one that stands out. It was a day much like today, some time in early February. Bitter cold, icy, sub-zero wind chill. With the help of the guy I was dating at the time, I had made it down the hall, down the apartment stairs and actually outside. We scooted and inched carefully on the ice to the nearby corner, where I held on to the street pole, sweaty and exhausted from the effort despite the freezing temperatures. I remember looking up with the snow hitting my face and being completely amazed. I did not have to go to the bathroom. I waited another moment. I did not have to go. I was not in pain. In fact, other than the pain in my back and belly from the journey, I almost felt like I could stand there for an hour and not have to go. A whole hour! I thought it was beautiful, the cold and the snow, for the first time in my life. I laughed, I cried, and felt grateful. It was then I knew I’d made the right decision, and was on my way to having my life back.