Above my desk, tacked onto a bulletin board, is a photo of John F. Kennedy with the famous words from his Moon Speech at Rice Stadium: “We choose to go the moon in this decade and do the other things, not because they are easy, but because they are hard.” I put that quote up on the board a few months ago as a constant reminder that choosing surgery to treat my ulcerative colitis (a disease JFK likely had himself, by the way) would ultimately create difficulties. I chose surgery because it would be hard. But the tradeoff, in my mind, was having to endure hardships in the short term in exchange for better health in the long term. As I’ve been known to do, however, I underestimated just how hard the short term would be. In fact, I also underestimated just how short the short term would be.
The plan going into my first surgery was to have my temporary ostomy reversed and the J-pouch functioning by September of this year. Here we are in November and I still have the ostomy, and it’s a terrible one at that. I still have high output from the ostomy, and all that acidic effluent continues to burn my skin because not only is my stoma sunken into my abdomen, its opening is located on the underside of the stoma. As bad as it looks in the photograph above, it feels exponentially worse. As every bit of stool passes through the stoma, I clench my teeth and take another body blow.
It’s a pain that’s difficult to adequately describe with words, but I’ll try. Imagine there was a knife inside you, and the tip of its blade was pushing against the inside of your abdominal wall, trying to pierce through it. Now imagine a hot piece of metal, like an oven rack that’s been baking for a while, pressing on your skin. Imagine that hot object held against you, branding you for a couple of minutes before being pulled away. Then after a moment of reprieve, it presses down on you again. Then the branding stops, only for the knife to start stabbing you from the inside. Then both stop. Then the knife hits you again, and then the hot metal. And so it goes. I have to deal with that pain every day. I tend to start off my day relatively pain-free, but the stabbing and burning comes on as the day continues, peaking late in the evening. It usually subsides a little by the time I go to bed, but on occasion it’ll continue into the early hours of the next morning. It doesn’t matter what I eat, how I eat, or when I eat. It doesn’t matter what I do or don’t do. Some days are worse than others, but without fail I will feel this pain every day. Every goddamned day.
Sometimes the pain gets to the point where all I can do is sit up in bed (because lying down makes it worse) moan, groan, and cry. I’ve cried my way through several Kleenex boxes. I feel helpless. Worthless. Ruined. I’ve tried different ostomy appliances to better seal the skin around the stoma. They don’t help much. I’ve tried doing some of my mindfulness meditation breathing exercises to deal with the pain. They do fuck all.
It’s difficult facing each day knowing that you’re going to experience some degree of pain, and that’s what I’ve been dealing with for months now. I can’t recall the last time I had a day completely devoid of pain. There are times when I’m scared to eat, because whatever I put into me is just going to run through me and push its way out of me through that burning red hole. There are times when I can’t stand or walk straight; the pain makes me hunch forward. There are times when I don’t want to see anyone or talk to anyone because doing either would just lump annoyance on top of the pain. There are times when I feel listless because it hurts too much to do anything.
The only real remedy is an operation to revise or reverse the ostomy. After my track record of things going so splendidly after surgery, I thought I would just endure the pain a little longer and get to the reversal stage. Now I wonder just how much longer I can hold out. My next appointment with my surgeon is on December 9, just over two excruciating weeks away. And even then, it’s not as though I would have the reversal on the 9th or 10th. It would be weeks after that.
I still hope that I’m in the midst of short-term pain that will be balanced off with long-term wellbeing. But all that wellbeing that I dream of seems so far away. This life of mine is hard. It’s really, really hard. In all the years I had my dysfunctional colon, I never felt so much pain. I never suffered so much. I knew recovering from a major surgery was going to be hard. I chose to do so because it would be hard. I just didn’t think it would be this hard.