Day 81: Reliving The Past With A Purpose, Part 4

This is Part 4 in a series of five posts I’ve set out to write concerning a period of time roughly 12 or so years ago when I was diagnosed with ulcerative colitis and what ensued after. I’ve never written about that time in a way that I’ve shared with anyone. Further, I’ve avoided for the most part thinking on that time or making sense of it—for numerous reasons, most of them being what I considered negative. Recently, however, I decided it was time to rethink those days and that time and try and find aspects I can take away that positively influenced me and provided lessons I might apply today.

Although I was listening pretty intently to the words Dr.Alexander “The King” Kingsley was speaking to me during our pre-surgery meeting—including his declaration that “anything can go wrong in a surgery, and there’s always a chance . . .”—I was more or less fixated on one particular thing he uttered: “There is a slight chance something might occur and you’ll be left impotent.” WHOOOOO, buddy! Say that part, again! Pretty much immediately, the thought ran through my head, “Jeesh, haven’t I’ve been through enough.” But I kept my mouth closed and my concerns to myself and kept listening.

The King was pretty cocky, but I liked that about him. Most surgeons are, I was told. They have to be. The King oozed confidence, and he left me reassured that I was making the right decision by having these surgeries. They would involve removing my by now very diseased colon and essentially rearrange my small intestine so that it would do the work that my large intestine had always done previously. More than the King’s warning of possible impotency, what I heard him say was I could expect to return to living a mostly normal life once this was over, although the transition wasn’t going to be easy.

Knowing what I know now, he was right. The post-surgery transition was pretty brutal, but back then I was so stoked at the prospect of leaving steroids behind and never having to deal with another day of UC, I was ready for everything. I was getting sicker by the day, and lots of experiments with medicines and a stay in the hospital to push steroids directly in my veins via IV hadn’t worked. About the only positive experience during this time was encountering my roommate in the hospital, a diabetic who literally wandered out of the building at one point and headed to the nearby gas station for a bag of Cheetos and Mt. Dew.

My expectations of surgery were all centered on the notion that everything would be fixed, I’d go on living, and despite some changes in diet and some annoyances here and there, I’d be good as new. The surgeries the King would perform were two-fold. The first happened over Memorial Day weekend. The second happened about three months later. Here are some of the gruesome details for those interested as told on the King’s Web site:

Surgery is indicated for patients who have life-threatening complications of inflammatory bowel diseases, such as massive bleeding, perforation, or infection. It may also be necessary for those who have the chronic form of the disease, which fails medical therapy. It is important that all reasonable medical therapy has been attempted prior to considering surgical intervention.

Historically, the standard operation for ulcerative colitis has been removal of the entire colon, rectum, and anus. This operation is called a Total Proctocolectomy. It cures the disease and removes all risk of developing cancer in the colon or rectum.

Another choice is Restorative Proctocolectomy with Ileoanal Reservoir. This procedure removes all of the colon and rectum, but preserves the anal canal. The rectum is replaced with small bowel, which is refashioned to form a small pouch.

I chose the latter route, Ileoanal Reservoir, or what most people in the trade call a J-pouch. The thought of living the rest of my life with a colostomy was in no way appealing, and I was prepared to do pretty much anything to avoid that. Still am. In hindsight, I made a good decision.

Following that first surgery, I was in the hospital five or six days. My mind is fuzzy to that time thanks to a steady stream of morphine, but it was difficult. I had seven or eight tubes coming out of all sorts of places. Nothing to eat or drink the first three days. No water, no brushing the teeth, no shower, nothing. I had a nice incision over a foot long right down the front of my stomach and a lot of staples holding things together. A lot of sleepless nights. A lot of discomfort. I couldn’t see my kids or wife as much as I wanted. I spent a lot of time alone. A lot of time wondering what I had gotten myself into. My insides hurt like hell. Once I did start eating again, my body had to completely relearn what to do. Further, in another three months, I had to do this again so the King could finish what he’d started. Over those three months everything had to heal and settle in first.

The first few weeks home sucked. I hurt, and I couldn’t lift anything, including our daughter who was about two and full of life. I couldn’t play with the other kids, and I was always exhausted. I couldn’t pitch in around the house, and although I was endlessly grateful for my parents and neighbors for helping mow the lawn and doing this and that, I felt horrible for not being able to help. Worse, eating again and discovering what and would not upset me was problematic. Nothing made sense. Things that were supposed to be good left me feeling horrible. Other food made me want to retch. I had loads of nightmares at night, and the staples kept me from standing up straight, to the point I was freaking out.

Still, there were bright spots. I was out of the steroid fog, and I could see clearly again. Within days I realized some of the damage that my episodes of steroid anger had done and started making amends. Elsewhere, there were lots of well-wishes from friends both after the surgery and once I got home. My friend Clark stayed with us a few days, and it helped take my mind off of all these changes taking place. What a godsend.

Slowly the weeks passed, and although it would take a while before I would fully get my stamina back (I still couldn’t finish nine holes of golf by late summer with my friend Chris, for example), I was ready for the second surgery. In some ways it was worse than the first. I hated my initial stay in the hospital so much, it made the second almost unbearable. My mood showed it. I hated the way things smelled. I hated the bed. I hated the sheets. I hated the noise and constant interruptions and nurses trying to find a good vein to use at 1 a.m. and so on. But I was ecstatic to get this all behind me. After that five-day stay in late August, I was home again and thrilled. Now, I could function as a normal human being again, albeit with a rejiggered digestive system that would need retrained.

That retraining didn’t prove so easy. There was extreme pain that I never expected, and it was constant, day in and day out. There was an abscess that was so painful, I thought about sticking my finger in a light socket just to take the edge off. Worse, there were setbacks. In January, I got sick again and couldn’t stay hydrated. I was scheduled to take a trip to Vegas for work, which I somehow managed to make, but once there, I barely left the hotel room for five days. When I got home, I went south in a hurry. Over two days, I went to the bathroom more than 60 times each day. My weight plummeted, and I was scheduled to head back to the hospital for more steroids.

“F*ck!!” I thought to myself. “I was supposed to be done with that sh*t.” I was irate, void of any faith in anything, and really starting to lose it. Mentally, I was giving up. I knew it, but I didn’t care. I was tired of dealing with this. I was defeated. The night before I was supposed to head to the hospital, everything crashed. My wife had taken the kids out for a deserved break from the insanity. As I did often back then, I got in the bathtub to try and calm down and hold it together. Only that night I couldn’t physically get out. I kept trying to lift myself up but couldn’t. My heart was racing like the wind. I felt like I was passing out. I was legitimately worried I was going to die in that bathtub alone, and I wasn’t having that. It took about 20 minutes or so, but I made it out and called my wife. We headed right to the ER. When we got there, I weighed about 135 pounds. I didn’t recognize my face in the mirror. I knew things were bad when my dad walked into the ER room, took one look at me, and his face immediately flashed an expression of worry I’d never seen before. My dad is bad ass and old school and tough as hell. Seeing his worry made me worry.

I gutted it out, though, and held on. No way was I going to leave my wife alone with three kids. No way was I not going to see them grow up. “Pump the damn steroids in my arm if you have to,” I remember resigning myself to. I’m glad they did. After that setback, I’ve never come close to those levels again (cross fingers) in the years since. A few more days in the hospital was a small price to pay for getting many years of relatively good health back in return. Each year following those surgeries has gotten progressively easier and better. My daily life still differs from most peoples in any number of ways, but I don’t think about it much now unless things get really uncomfortable or painful. It’s just the routine. It’s just the way it is. It’s just become normal. Besides, any inconveniences and limitations I have are pretty insignificant considering the alternative of being dead. Additionally, I think you learn early on that there’s always someone who has it worse, including the small children I’d hear or read about who also had UC, who were also taking steroids, and who had a hell of a lot longer to live with this thing than I would. Count your blessings, big boy. Count your blessings.  

Today, when I think about those times, I have a few long-lasting images that come to mind. One is pulling myself out of that bathtub and taking a good, long look at my face in the mirror. That face looking back spooked me. Literally. I never want to see it again. When I’m staring down something today that puts some doubt in my mind as to whether I can overcome it or even tackle it, I think of that face. As I mentioned previously, I don’t get scared about much anymore where harm to person is concerned. I may still be among the best worriers who ever lived, but I don’t get scared. The other image I have is of my head lying in my wife’s lap while she drove us to the hospital. I couldn’t hold it up, and I was a little worried we weren’t going to make it in time. I wanted comfort and contact. I remember her hand on my hand and thinking this isn’t so bad. I’ve seen her ability to comfort many, many people over the years, and I’m so thankful she was there at that time and did the same for me. Peace of mind. You can’t put a price on that.

Tomorrow, life today and what’s positive about it.