There are many different reasons why someone might consider getting a colonoscopy: they’re 45 or older, have a family history, or are experiencing symptoms. For me, being only 23, it was a combination of the last two reasons that I finally scheduled my colonoscopy for February 14, 2024; Valentine’s Day.
Making The Appointment:
I’ve always had unexplained changes in my bowel habits ever since I was a little kid, but I just chalked
that up to “something that everyone experiences, but doesn’t talk about.” It’s not necessarily a “normal” topic to bring up with a friend or a coworker. “So, do you get random weeks of constipation and random weeks of diarrhea that change for seemingly no reason?” And while it IS a very normal topic, it’s considered taboo.
Now, I could have brought it up with a doctor, but I come from a family that’s pretty doctor-averse. And although this was an inconvenience, it didn’t feel like a problem. So I went about life like that until last year when I began working with the Colon Cancer Coalition. I learned about all the ins and outs of colon cancer, how there are many people who put off talking to a doctor and getting screened, and was gloriously thrust into a community where no subject was taboo if it meant you could save someone’s life. Talking with your coworkers about your bowel habits became a very normal thing.
That same year, I began to notice blood while wiping after using the bathroom. And no, it wasn’t “just my period” like one doctor tried to convince me it was. The unfortunate reality is that even when you get up the courage to finally see a doctor, some of them can be dismissive of your problems, which just perpetuates the cycle of “sucking it up and moving on.” Which, to clarify, you absolutely should not do. And I didn’t. That pushed me to dig my heels in even deeper.
With the new knowledge I had in my back pocket, the added symptom, and the insistence from my boyfriend; I went to see a doctor. I went over the head of my family doctor (Mr. “It’s just your period” guy), and on my own referral scheduled an appointment with a gastroenterologist that summer just after my college graduation.
From my symptoms alone, and being a seemingly healthy 23-year-old, my GI thought it could be any number of things: Constipation, hemorrhoids, IBS, Crohn’s (my guess), Colitis, or colon cancer
(unlikely). It got very easy for my brain to jump between, “You’re fine, you just need to eat more fiber, call it off” and “You have colon cancer, you’re going to die because you ignored it for so long.”
However, these thoughts were pushed out of my mind when my whole world changed that fall. My mother was suddenly diagnosed with stage II cervical cancer. I became her main caregiver and put off scheduling my colonoscopy to take care of her.
During that same period, my mother lost her aunt to cancer and we found out that her estranged father, my grandfather, was diagnosed with stage IV colon cancer. If that isn’t the biggest wake-up call, then I don’t know what is.
Had my mom gotten regular pap smears, had my grandfather gone in for a colonoscopy at 45, their cancers could have been caught before developing into cancer. But, like the rest of my family, I used being “strong” as an excuse to ignore my fears. An excuse that’s cost my grandfather the rest of his life, and still could cost my mom hers.
Why is it so easy to ignore ourselves,
to dismiss how WE feel,
but expect everyone else to be different?
To expect our parents or our children to be different?
I decided to break that cycle. I scheduled my colonoscopy for the soonest they could squeeze me in – February 14, 2024. Happy Valentine’s Day to me! The biggest act of self-love I could give myself. It would either grant me peace of mind or save my life. Either way, I couldn’t lose. Both are priceless.
Pre-Prep:
Two weeks before my colonoscopy, my pharmacy called to tell me that my colonoscopy prep medications were ready to be picked up. Yet no one ever discussed what my options were with me. I never talked with anyone at all even though I was promised that I would get to, two weeks before my colonoscopy. I had no information on the details of my colonoscopy (Would I be sedated? How long would it take?). Frustrated, nervous, and determined; I picked up the phone to advocate for myself.
I had been prescribed the disgusting “Golytely,” which I knew from listening to others is disgusting and an insane amount of liquid. So I had them switch me to their second choice that’s still covered by insurance– Miralax you mix with Gatorade to help with the taste– which they seemed more than happy to do once I threw in, “I work for the Colon Cancer Coalition, I know what I’m talking about.”
But when I went to my pharmacy to pick up my prep medications, nothing had changed. They gave me “GaviLyte” which is just an off-brand version of “Golytely.” I was crushed. I felt ignored, and small, and I just wanted to give up. In my mind, I thought, “Why try advocating for myself if it’s not going to change anything?”
Luckily, I have an amazing boyfriend who doesn’t let that kind of thinking slide. He picked up the phone and called multiple numbers for the GI clinic, but it was a Saturday so they were closed. He then called a nurse line and handed me the phone when someone finally picked up.
I explained the mix-up with the prep medication, and the nurse assistant was more than happy to help correct the situation. And you know what she said? “I wish I’d known that there were other prep options when I had my colonoscopy.” That’s when it really sunk in that what I was doing – talking about it and advocating for myself – was important; and if I wouldn’t tell someone else to give up, why should I?
I waited for a phone call that Monday about changing my prescription, but when one didn’t come I picked up the phone and called them myself. A different prep nurse told me that they were no longer offering Miralax and Gatorade as an option, due to part of the medication (magnesium citrate) being recalled, and that the ONLY prep they offered was Golytely/GaviLyte. I realized that I’d hit a dead-end, and prepared myself to endure the unfortunate prep that awaited me.
Then I got another phone call that I COULD pick up the Miralax and Gatorade and that the magnesium citrate was just out of stock at most pharmacies, but mine had it.
What a rollercoaster.
If you ask me my opinion on why people don’t get colonoscopies, especially younger people, it’s because of this. The terrible prep that’s forced onto patients as the “only option,” and the lack of communication between a patient’s care team instills a total lack of trust. Because it’s not just me that’s experienced this, and not just at my specific GI clinic. It’s a lot of different people across numerous GI clinics. And if you’re young and healthy, it becomes very easy to convince yourself that you don’t need to go through with it.
When I complained to my mom about my situation,
she told me not to go through with it.
She wouldn’t have.
If she wouldn’t, how many other people don’t?
But I’d come this far, and I wasn’t going to turn back now! The next day was prep day, and I would be as prepared as I could.
PART 2: My COLONOSCOPY: THE PREP AND PROCEDURE ABOUT US GET EDUCATED
