I get an infusion of Remicade every eight weeks for my ulcerative colitis. Aside from the brief insertion of the IV, it’s a pleasant experience. I don’t mean that it’s more pleasant than you would expect, although that is true. I mean that it’s actually pleasant, something I even look forward to.
As surprising as it sounds, Remicade infusions are a highlight of my week on the weeks that I get them.
The infusion center is in my gastroenterology clinic. When I check in at the clinic’s front desk, I always experience a strange sense of superiority to the other patients.
“Checking in for an appointment?” says the woman at the desk.
“For an infusion,” I clarify. I can’t help feeling a bit self-important, somehow more advanced than the other people waiting. No sir, this isn’t my first rodeo.
The infusion clinic is busy and operates on a strict schedule. I’m always ushered into it within a few minutes, like a VIP, and bypassing the other waiting patients only adds to my sense of high status.
The infusion room is small and narrow, with dim lighting. Walking in, the length of the room opens to the left, with a long counter beginning just left of the door and stretching all the way down the wall. Across from the counter sit four large recliners, all facing toward the door.
Because the recliners all face the same direction, it’s only at this moment, as I’m walking into the room, that I really get a chance to glimpse the other patients. I always look at them in curiosity and solidarity. If their eyes meet mine, I smile.
Only occasionally do they meet my eyes. Some read, which is what I do during my infusions. Some watch movies on their tablets. Many are napping, because their infusions make them tired. Or perhaps it’s their illnesses that make them tired—mine does. Or it could just be that most people in modern society are tired, even without illnesses.
I haven’t found many clear demographic patterns among us. We’re mostly white, but most people in this area are white. I have seen a few people of color here. We seem about evenly split between men and women. We have all different body types and ages and personalities.
I remember a disheveled, heavyset young white man with matted hair who played video games; a fifty-something white man in business clothes with a warm, authoritative voice; and a chatty young black woman who bantered with the nurses.
Once, in the rearmost recliner, I glimpsed a slender young man in the trademark black slacks, white shirt and tie of a Mormon missionary. The cuff of one sleeve was rolled up to receive his IV as he snoozed. Next to him in a wooden chair, his equally young and slender partner, identically dressed, silently read the only book he could possibly be reading. Apparently even Mormons get inflammatory bowel disease.
As a group, we probably have few things in common except this one inexorable bond: all of us have similar diseases, and all are tethered by an invisible thread to this clinic, unable to stray from it for very long.
My nurse indicates which recliner will be mine. I set my things next to it and kick off my shoes, which further adds to the sense of ownership I have in this place. In my stockinged feet, I pad over to a scale by the door, and after being weighed I sink into my recliner.
I sigh with pleasure as it cradles me in that delicious way recliners do. I wear sweats on Remicade days, so by now I feel utterly comfortable, like it’s a lazy weekend at home, or like I’m a celebrity at a spa.
Soon the kindly nurses settle me in, wrapping one bicep with a blood pressure cuff and starting an IV in the elbow vein of the other arm. The needle doesn’t fit with my spa mentality, but the pain is only momentary. Then I’m draped with a warm blanket, my favorite thing about hospitals and clinics.
I’m all set. I recline in my chair with my feet propped up, settling in for two hours of reading in comfort. Remicade days are like snow days: an excuse to set work aside and kick back.
I try to push aside my concern about my veins. After three years of infusions, the left one is developing scar tissue. I dread the day when both elbow veins will become too toughened for needles, which will mean IVs and blood draws will have to move to my wrists or the backs of my hands. Those veins are more painful than the the elbows, with more nerves.
I also hate the thought that when I’m old, I might be out of good veins, like a drug addict. I am a drug addict. My drugs are just legal.
A nurse attaches my IV to the bag of clear fluid on a pole above my head. The fluid looks just like saline. It’s amazing how something that appears so innocuous can be so life-changing.
In the two years before going on Remicade, I lived under the tyranny of my illness. Ulcerative colitis developed at age thirty-five, and in those first two years, I couldn’t escape it. Flare-ups came and went almost at random, triggered by my slightest deviations in diet or stress, and sent me rushing to the bathroom or curled up in pain on the couch. Colitis sapped my strength. It rendered me unable to fully participate in the world.
Despite all that torment, I resisted Remicade back then. I hated meds. Especially the idea of IV meds, which I thought would make me feel like a Sick Person. I still clung to the idea of being healthy, and to the notion that I might somehow think my way out of this disease.
When a crisis finally landed me in the hospital and threatened my life, I had to surrender at last. I was not healthy. I was sick—very sick. Remicade was the drug most likely to save me. I finally acquiesced to taking it.
I was right and wrong about Remicade, but mostly wrong. I do feel like a Sick Person at times. The feeling of self-importance at my clinic is a ruse. Being an old hand at a health clinic means you are, in fact, an old hand at being sick. Every time a new needle slides into my arm, I’m reminded of that reality.
But aside from these brief reminders, my years on Remicade have been entirely different from the years before. Life has stabilized. I haven’t had one single flare-up. Writing that sentence, I see that it’s worth repeating, out of respect for the desperation I felt before Remicade.
I haven’t had one single flare-up.
On Remicade, I have nursed myself back to health in the years since the crisis. In the past year, especially, I’ve even gotten used to feeling well. For the first time since diagnosis, I’m often able to forget my illness. Or, if not to quite forget it, to let it go. I’ve come to peace with it. It’s no longer ruling me—I am freed from its grip. Remicade has given me my life back.
I’m lucky. Remicade doesn’t work for everyone. Some of the patients in the infusion room are on other, related meds, like Entyvio. All these infusion meds are similar, but they’re all slightly different, all targeting the immune system in slightly different ways. The general idea is to tame the body’s overreactivity and stop it from attacking its own tissue, which is the problem with autoimmune diseases.
Different meds work for different bodies, but sometimes nothing works. When that happens with ulcerative colitis, the colon must be removed altogether. That’s the only cure for this disease. For many of us, this infusion clinic is the last stop before the operating room.
I’m also lucky because Remicade isn’t as pleasant for everyone as it is for me. The infusion nurses always offer me Tylenol, because many patients experience headaches. So far I’ve had none.
I’m very aware of that phrase—so far. I always refuse Tylenol in the same way: “No thanks. So far, I haven’t needed it. I know I’m lucky.”
Any of this could change. It likely will change. Many patients “fail” Remicade or Entyvio or other similar drugs at some point. When you fail one, you try the next. When you’ve failed them all, you remove your colon. I’ve come to accept that within a couple decades, maybe much sooner, I might be living with an ostomy bag.
Knowing all of this makes me keenly appreciate what I have now. For now—so far—I can enjoy the sense of simplicity and wholeness of having no cuts in my body.
But if and when my colon is eventually removed, I hope I will still feel whole. And there will be a brilliant, gleaming silver lining: I will finally be cured.
Remicade alone isn’t enough to keep me in remission. I couple it with diligent self-care: a highly restricted diet (no gluten, dairy, added sugar, soy, caffeine, or alcohol), daily exercise, stress management through meditation, and plenty of rest.
Through meticulous charting of my symptoms, diet, and activities, I’ve found that all these factors are essential for my health. When I deviate from any of them, I experience the gut pain and loose stools that herald an oncoming flare.
My self-care needs make it hard to take on hobbies or travel. Often, I think that if and when my colon is removed, my life will become easier. Maybe I can eat ice cream again! Maybe I can go to Africa!
Then there’s my worry about immunosuppression. Perhaps I’ll write more about this in another post. Suffice it to say that when there is a flu or measles outbreak, I drift through grocery stores in a numb fog. Everything I touch, even the air I breathe, might endanger me. Every now and then, an immunosuppressed person around my age dies of measles. A friend’s forty-year-old sister died of a blood infection when the flu weakened her immune system. And cancer always hovers at the edge of my awareness.
My mother asked me recently if I was glad I was on Remicade. I said, “I am…but I know that if I develop lymphoma, I’ll wish I’d gone off it much sooner.”
Sometimes, I wonder if I should go off it before I even “fail” it. Should I take my colon out preemptively, just to stop putting these chemicals into my body? I don’t want to be on meds like this forever. Remicade’s long-term effects are still largely unknown, since it’s only been around for a decade or two.
Early on, an infusion nurse reassured me that, “My sister’s been on Remicade five years and had a baby on it, and the baby is totally healthy!” I bit my tongue. Will that baby still be healthy in thirty years? No one knows.
So Remicade makes me feel like I’m living on borrowed time.
For all these reasons, I didn’t expect to be on Remicade this long. I thought I’d try harder to go off it—that once I stabilized, I’d research alternatives. Even surgery. Early on, after emerging from the hospital, I found a few local people with ostomy bags who said they’d be happy to talk to me. My husband and I even met with a surgeon who could take my colon out.
But now it’s my third year on the drug, and I seem to have become complacent. The feeling of borrowed time is still there, but it’s just so amazing to feel healthy. I’m dragging my feet on making a change.
I’m relishing the simplicity, the delicate, blessed balance, of right now. I don’t know how long this feeling of health will last. I want to make the most of it, enjoy it, never take it for granted.
So I always leave my Remicade infusions with a sense of gratitude and push aside any worry about the future. This is working for now. I just want to enjoy my life.
