: February 2015 :
Happy blog-postin’ Thursday, friends of The Comical Colon! (That means it’s almost Friday!)
Today we’re starting day one of a three-part series on medication many of you have probably heard of: Remicade.
To set the stage, and as you may remember from last week’s post, in January 2015 I was taken off two medications—Clarithromycin and Apriso—because of their staggering side effects.
The nausea and inability to eat caused the shakes, fogginess, fatigue, and prevented me from excelling in my brand new business internship. After raising these concerns to my doctor, she took me off those meds, effective immediately, and I remained on Prednisone.
But alas, Prednisone was only the bridge to hold me over until we found the next drug for me to ease my aching colon. That’s when my doctor dropped the bomb:
My next drug would need to be escalated from an oral pill to an infusion. This news scared the poop out of me. I was wary of relying on going to the hospital for a three-hour long infusion every eight weeks. To me, that seemed like a lot of dependence on a drug.
My doctor had mentioned infusions before, but I never really thought I’d have to get them. I was fearful of such a potent medication pouring straight into my bloodstream, swirling around in my blood, making my veins its home.
We had delayed this option as long as possible, but there were so many pills I tried and failed. I went through Prednisone, Nexium, Amoxicillin, Sucralfate, Apriso, and Clarithromycin…
These either didn’t work or provided only a short-term relief before my body built an immunity to them. Isn’t that crazy? I got used to the drugs so that they became ineffective. Even Prednisone!
Building a Tolerance
By this time in late January 2015, I noticed even good ol’ Pred losing its effectiveness. The hunger pains died down, (I missed the looks on my family’s faces when I lingered at the dinner table still stuffing my face long after they were finished eating), the heat waves and night sweats became less severe, and my acne showed mercy on my face. But, as life would have it, I clung to that moonface though April.
Anyways, my doctor and I decided that an infusion medication would be the next best route. Something stronger, more direct, a hopeful long-term solution.
As much as I didn’t want to do this, I knew the fear of the unknown would be better than reverting to my endless bloody bathroom trips and welcoming any more Wal-Shart moments.
So what even is Remicade?
Remicade is a biologic therapy.
A biologic is a class of drugs that are genetically engineered from living organisms instead of from synthetic chemicals.
Biologics cannot be digested, which is why there are no pill forms of these drugs. So all biologics must be absorbed in the body by infusion or injection.
To further explain, you’re familiar with the immune system, right? It protects your body from foreign invaders by creating specific proteins, called antibodies, that attack specific agents like bacteria and viruses. Biologics are antibodies designed to attach to specific proteins involved in causing IBD inflammation.
Ultimately, biologics interact with your immune system and DNA to attack IBD’s inflammation-causing proteins.
Pre-Infusion Prep Work
It took a few weeks to get everything set up for Remicade. Everything had to get approved through my insurance (ugh, always a process) and I had to get a TB skin test.
A TB (tuberculosis) skin test is a screening where you see if you retract tuberculosis. A medical professional will inject a small amount of fluid into your arm—this is called the “placement”.
Then, between 48 and 72 hours, you return to the facility to get it “read”. The medical professional will look for a raised bump and any swelling around the injection site.
If you test positive, additional tests are needed and you may not be able to receive the biologic. (Time to talk with your doctor about what the next steps would be).
If you test negative, you pass and can get the infusion. TBs typically need to be renewed every year.
Infusion #1: February 2015
One fine weekday in February 2015, I missed class to go get my first Remicade infusion.
I drove myself to the hospital, hands clinging to the wheel.
Feeling totally unprepared.
Absolutely no expectations because I had no clue what this experience would be like.
(Looking back, I’m surprised I didn’t bring by then-boyfriend, Tyler, or my mom with me! Hmm.)
The drive felt like forever and five minutes at the same time. Finally finding a parking place after twisting my way through the intertwined roads of Sacramento, I drew in a breath. Pep talk time. Okay colon, I’m taking back the reins. If it takes shoving a needle into my arm and getting a medication placed directly into my veins, so be it.
Once in the office and after sitting a few minutes in the waiting room for a few minutes, a nurse walked me to the back. She took my temperature, height, and weight, explaining that they’ll take my weight every time because it determines how much Remicade you get that day.
I started with the lowest dosage, which is 5mg per kg of body weight.
Next, she led me back to what I guess what you can call the patient lounge. There were a dozen chairs throughout the room with people hooked up to IVs.
I have to say, the mood was a bit dim. Remicade is typically dosed in the chemotherapy ward, so some patients were receiving cancer treatment and others were collecting meds for rheumatoid arthritis.
I sat comfortably in the cozy sofa chair, when the nurse’s aid promptly asked if I’d like a pillow and blanket. Of course! I’m always freezing and will never decline such an offer. Plus, I knew they’d helped relax me and take away some of my nerves.
Blood Work & Pre-Medications
My doctor requested that before every infusion, the nurse takes some blood samples. That way, my doctor can analyze these results to catch any abnormalities, deficiencies, or signs that Remicade isn’t working and I am heading toward a flare.
It’s great to know my doctor always has eyes on what’s going on inside my body so we can catch things before they happen!
Next, we started the process by taking my pre-medications: Tyelenol, Benedryl, and solumedrol (a corticosteroid).
Their purpose is to reduce the chances of negative side effects from Remicade.
Specifically, their main goal is to prevent the patient from experiencing hypersensitivity, which is the immune system’s exaggerated response reacting to a foreign agent entering the body. Essentially, it’s your body rejecting the drug.
The chances of hypersensitivity are even higher during your first infusion, so it was important to get the pre-meds in my system.
I took the Tylenol orally, but the Benedryl and solumedrol were given through my IV.
If you’ve taken Benedryl pill-form, you know how quickly it can take effect. Now imagine it pumping straight into your bloodstream!
I immediately became extremely sleepy. My eyes closed, my head nodded, and speaking became a chore. The nurse squeezed it slowly through the syringe and I felt peaceful and relaxed for the first time in what felt like forever.
The Remicade Itself
Once these pre-meds were absorbed, they switched out the syringe for a long IV tube attached to a monitor on wheels. The nurse taped the tube to my shoulder and on my forearm so that it was easier to manage and less likely to tangle.
I remember the nurse explaining that now the Remicade will be entering through the IV; my sleepy ears heard her and I nodded with my eyebrows raised high but my eyes unable to open.
The bag of Remicade hung from the top, and—still drowsy—I remember seeing the clear liquid drip, drip, drip, down the bag, through the plastic tube, and straight into my veins.
It felt kinda surreal. In this peaceful dream-like state, I paradoxically felt both relaxed and anxious. Relaxed from the Benedryl, but anxious that I was attached to this machine for three hours and dependent on the contents it expelled into my body.
I pressed into the peace, focusing on this time that I could just be.
No pre-dosing my next week’s medications into my pill box.
It was a peace I had become unfamiliar with. Like a part of me that my disease stripped away was being reconnected. I let my thoughts wonder as I fell into a wonderful sleep.
Periodically, the machine would beep, and the nurse would stop by my station to turn the alarm off. She’d check it the medication’s progress, increase the rate, and take my blood pressure. Then back to sleep I’d go.
This is how it went for the three hours.
The final time I awoke, the nurse’s aid was standing by me, offering me food! Hospital food is not known for its quality, but let me tell ya, this was the BEST sandwich I ever ate.
This simple chicken sandwich, this plain-Jane bread with a single tomato slice and a sole lettuce piece, was absolutely amazing. For whatever reason—the pre-meds, the Remicade itself, or perhaps the long nap—made this sandwich oh so fulfilling. The food woke me up and by then, the Benedryl had worn off.
“All done!” the nurse chimed.
She extracted the needle from my skin and removed the blue tape that had secured the long IV to my arm.
I have no doubt that yank took some arm hairs with it. To be honest, that tape removal was so much more painful than the needle’s poke!
After strapping a Band-aid over my war wound, I gathered my things and walked out of the hospital awake, (energized actually!) with blood saturated with sweet sweet Remicade.
I have to say, I felt better immediately. Even during the infusion. I felt like it was putting my body back together. Like my colon was a broken puzzle and Remicade was the mastermind who could make it whole again.
Okay, kind of a lofty description, but what I’m trying to say is that I hadn’t felt this good in so long.
And this goodness continued throughout the next two weeks before my second infusion.
I was able to not only make plans, but stick to them.
I was able to enjoy my time away from the apartment.
I was no longer scared of 10-minute car rides.
I had normal bowel movements! Like from the good ol’ days of pre-diagnosis. I told my parents that I will never take a normal poop for granted again. It’s the little things in life, guys 🙂
And Remicade—the scary IV drug I initially dreaded—reminded me of this. It boosted my quality of life, and gave me the freedom that I had forgotten I once had. From day one, it began to stitch hope back into my life.
If you’re deciding with your doctor the next drug to try, be brave. You just mind find it’s worth the plunge.
In The Comical Colon’s Facebook group, let’s start a conversation:
Have you been on Remicade or another biologic? How did your first infusion go?! Tell us about your experience in private Facebook group!
I truly believe that the way to bridge this disease type’s chasm of alienation, fear, being misunderstood, etc. is to engage in community and share our experiences to help others along their journeys. Let’s learn to share our fears, our trials, and our triumphs to find the comical in the deepest, darkest crevices of our guts.