The Art of Finally Accepting a Prognosis and Relenting to Doctor’s Orders

It’s a humbling experience.
It being the realization that one can no longer be the sole decision-maker when it comes to one’s own health. To realize that it is time to relent and finally say “Okay, doctor, you win. We’ll do it your way.”
It’s especially humbling when this realization took three years and a whole lot of denial, in addition to being a stubborn pain in the neck with the professionals.

My previous treatments for my Crohn’s disease have not helped. In fact, my Crohn’s is worse than ever, and I have been suffering dangerous reactions from my medications. (Low white blood cell count, wacky liver enzymes, as well a slew of unfortunate side-effects like debilitating fatigue.) After learning the results of my most recent colonoscopy, endoscopy, and MR-enterography (my 3 strictures are significantly worse; my intestines are in a constant state of being partially blocked by undigested food; I’m at risk for growing a fistula, which is life-threatening; I will almost certainly need to get surgery after the active-inflammation in my intestines start settling down) my doctor said “I’m sorry to say it, but we’re going to have to twist your arm. You need to begin Remicade.”

And so, yesterday was my very first Remicade (infliximab) infusion treatment.
Since I was diagnosed with Crohn’s Disease in 2012, I have refused to be treated with Remicade. Why? Well, it’s a disgusting medication. It’s risky, extremely intrusive, has awful side-effects, puts your already-ailing body through a lot of stress, and it has the potential of fatal complications. It also makes pregnancy a very tricky proposition. But I don’t even want to get into that now. It’s an anti-TNF drug, (anti-tumour necrosis factor). Super short and concisely, from the Crohn’s and Colitis Foundation website, “[Remicade] is a chimeric monoclonal antibody. In other words, it’s a hybrid consisting of 75 percent human and 25 percent mouse protein sequence. It works by binding to and preventing the activity of TNF-alpha. It is given as a drip via intravenous infusion.”

Basically, I sit in a big comfy chair for 2-3 hours every two weeks (then eventually every eight weeks, depending on how my body responds), I get an IV stuck in my wrist, the medication drips into my veins, the nurse takes my vital signs and temperature every 30 minutes, and I read.

There’s clearly a lot more to it, but I can’t for the life of me muster up any motivation or enthusiasm to go into more detail.

Nothing wrong or abnormal happened to me during my first infusion. Obviously that’s very good, but unfortunately, a lot of people don’t exhibit adverse reactions until their second or third infusion. But so far so good.

Afterwards, I felt like I had been run over by a truck. I could barely lift my head for the rest of the day. Every bone in my body hurt, I was dizzy, and my head felt as though it weighed one thousand pounds. I was warned, however, that this is to be expected.

Today I am feeling significantly better than that, but still not great. My body aches, my head is throbbing, and I’m still quite exhausted. If I feel this way tomorrow, I have been told to alert my doctor. Here’s to a better day!

At this point in the game, I am just desperate to feel better. Being in so much pain every day is incredibly trying, physically (obviously) and also mentally. My moods suffer, and I feel like a terrible wife. I want to be better.

Oh how I hate to have nothing but sickly, complaining things to say. Oh how I just want to write about lovely things. And since I don’t have only lovely things to say, Oh how I wish I had some great big wonderful profound moral of the storySome clear-headed, uncomplicated, truthful, meaningful thought to express about what it means to be sick, what it means to relent to doctors, and what it means to try and live a life worth living, when it feels like you cannot.

Maybe I’ll think of something tomorrow.