Bitter Party of 1: Remission News Felt Like a Big Fat Lie
Earlier this year, in order to avoid a colonoscopy, I participated in a non-invasive test that would provide real-time pictures of my insides. The results provided good news. Yet, it didn’t feel that way.
I don’t do well with colonoscopies or, for that matter, the prep that accompanies them. I’m also well overdue for one. These scopes are so important for Inflammatory Bowel Disease patients, regardless of whether you have Crohn’s disease or ulcerative colitis. The biopsies provide critical insight (pun intended) on the health of your intestines.
Biopsies mean the world to me. After my first colonoscopy, a biopsy was taken of what appeared to be healthy tissue on the surface. Deep below it was another story entirely. This is one of the reasons why scopes and their biopsies are relevant to my current treatment plan.
But oh how they mess me up.
It’s Like Swallowing a Little Robot
There’s another type of endoscopy that isn’t as invasive. It’s called capsule endoscopy (aka a Pill Cam). However, it doesn’t provide biopsies.
What’s cool about the Pill Cam is it’s not much bigger than taking two large vitamins together at the same time. Inside the capsule is a camera that beams pictures to a receiver pack you have strapped to your body. It’s like swallowing a little robot that takes pictures of your insides.
For those unfamiliar: I mentioned prep being an issue for my body. Some doctors do require a half prep to be used prior to swallowing the Pill Cam. But each doctor has their own preference.
My Brain Wouldn’t Shut Up
The results were ready at my next appointment. To put things in perspective, this flare began in 2012 and rendered me disabled. Since starting my new treatment in 2016, I’ve made leaps and bounds in my Crohn’s recovery. However, I still experience Crohn’s symptoms like searing pain, hypermotility, extreme fatigue, and nausea. I also live with Psoriasis, as well as arthritis located in the jaw, hands, and feet. The Psoriasis has improved very much, and arthritis fades in and out, but none of the conditions have completely cut me a break.
Questions for my doctor about the symptoms I was still experiencing raced through my head. Technically, I already knew the answers. But my brain wouldn’t shut up.
The truth is, even if you are in remission, your IBD (ulcerative colitis or Crohn’s disease) is not cured and you can remain symptomatic. I’ve heard it time and time again at medical conferences, but it’s different when you live it.
Next Up, Bitter Party of 1!
Once my doctor concluded her regular list of questions, she asked if I had any. Usually, I have a list. I didn’t this time. I only wanted to know one thing. But suddenly I became shy. Who am I?!
“Uh, do you have the results of the Pill Cam?” I sheepishly asked.
“Yeah, you’re in remission,” she replied nonchalantly while tapping out notes.
I asked her if she was sure. She laughed and said, “Yes. The pictures looked good. You still need a scope but we can hold off if you’d like.”
This news did not feel great. What exactly have I been chasing down these last six years? I was at a loss for words, but managed to sputter out, “But, the joint pain and inflammation? The Psoriasis? What about the days I live in the bathroom or when it hurts to eat? Why do my labs suck?!”
She relayed the arthritis symptoms err closer to Psoriatic arthritis, which made sense. My skin may go through clearing and patches. The labs, skin, arthritis and GI symptoms are the culmination of having more than one inflammatory disease, and additional meds are probably needed.
And the zinger I already knew but didn’t want to admit, remission for Crohn’s doesn’t guarantee being symptom-free. So unfair!
Not going to lie, I walked out of the appointment feeling salty. Why though?
Take the Win
After some soul searching, here it is, I’ve been chasing this intangible thing — REMISSION —for not just the last six years, but since I was a teen. Remission was the Holy Grail… the end game… my Olympic Gold. And it felt nothing like I had thought it would.
At my next appointment, I asked my doctor, “You said I was in remission, right?” She nodded. “What is my remission?”
My remission currently is visually confirmed. The images were pretty good in comparison to past imaging she received from my local GI. But, we still need pathology. So, for now, I’ll take the win with a grain of salt.
Have you been told you’re in remission and felt like remission was a lie?
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