In the middle of my first night in hospital after my ileostomy reversal, the painful pants of one of my roommates stirred me from my sleep. I had a privacy curtain wrapped around my corner of the room, so I couldn’t see him, but I could hear him whisper, “Oh god, oh god, oh god!” Then I heard him shuffle out of his bed, then I heard the squeaky wheels of his IV pole rolling across the room towards the bathroom. I heard groans from the bathroom, a couple of loud farts, and a few more whispers of, “Oh god.” I heard the toilet flush and the water run in the sink, then the squeaky wheels again crossing the floor. After my roommate settled in bed, he whispered, “Fuck this hurts.”
When I was awake and lucid on the day after my surgery, I got to put a name and face to the agonizing soundtrack from the night before. I had two roommates, and the one who was in excruciating pain was a man named Randy. He looked middle-aged, but I found out he in fact had three grandchildren. He had brown hair, cropped short all around and slightly thin at the front. He wore thin, rectangular, silver-framed glasses. He was short and stocky, and he had several bags dangling from his IV pole. He had lived with Crohn’s Disease for decades, and he was in hospital to have a narrowed part of his bowel removed, the part that caused him so much pain.
Randy was in pain all day and all night. The pain would sometimes wane and he could eat and take walks around the hallways, but it would inevitably return. One of the IV bags on his pole was for some kind of painkilling medication, but it usually offered only short-term relief; a couple of hours at most. I know people with Crohn’s Disease, and I’ve heard their true stories of suffering, but I had never witnessed the severity of the disease’s pain until I met Randy. Watching Randy shuffle around out room, clutch his belly, and struggle for breath, really made me angry. I was angry that a disease as potentially devastating as Crohn’s has almost no place in the public psyche. We hear about cancer and heart disease all the time, and they’re serious diseases, but inflammatory bowel diseases bring their own brand of devastation to human lives, and as such, ought to be known by patients and non-patients alike.
Through all of Randy’s pain, he endured each day. We watched some Olympic events together, passed each other in the hallways on our walks, and shared a disdain for people who offer quick fixes to such horrible diseases as Crohn’s and colitis. We also spent time chatting with our other roommate, a young man named Atric. Cool name, right? Apparently it’s Welsh.
Atric’s story was so similar to my own. Diagnosed in his twenties with ulcerative colitis, he tried various medications over the course of several years before finally opting for a colectomy and pelvic pouch. I remember Atric once saying, “If I ran a pharmaceutical company, I’d push for cures, not treatments that people need to take for the rest of their lives.” He was in hospital for the same surgery I had last May – colon removal, J-pouch formation, and temporary ileostomy creation. Like me, he also had problems soon after his surgery and needed an NG tube in his stomach and a catheter in his stoma. Luckily, he didn’t end up having all the problems I did, and his condition improved after the tubes did their work and came out.
Because I had been through the same surgery as Atric already, and lived for a while with an ostomy, I was able to answer some of his questions about ostomies and recovery. It felt good to be a resource of sorts. Our interactions reminded me of my first hospital stay, and another great roommate, Jason. Jason is THE resource for just about anything ostomy related. The man also knows about surgeries, diagnostic tests, how to deal with government agencies, and so much more. I envy Jason’s ability to endure so much strife and just get on with things. I was very lucky to have met Jason when I was in hospital after my first surgery, and I hope that Atric feels at least a little lucky to have crossed paths with me when he and I were both in hospital.
I’ve been pretty lucky when it comes to my hospital roommates. I’ve had a few that really understand what life with an IBD is like. Being able to share those common experiences makes time in hospital a little easier, and it creates a slightly rosier outlook on life after discharge. At the same time though, my wonderful roommates have reminded me just how fucking awful IBDs are, and how unfair it is that so many of us have to rely on hospitals and surgeries just to achieve some semblance of normality.