: November 7 & 8, 2017 :
Today is Part 2 of Rare Disease Day series, and the continuation of my camera capsule endoscopic adventures!
Or, read this TL;DR: I swallowed a flashlight/camera/exceptionally large pill that sends my doctor photos of my entire digestive tract.
So, thankfully the results of the capsule endoscopy were normal. Or, at least, as normal as could be. Remember, I was in a flare still, so results were normal in the sense that inflammation was limited to my large intestine.
This was good news, given the circumstances.
Concerning Liver & MRCP
But, my liver was still a concern to my doctor, and to me by association. And since the camera capsule couldn’t take photos of the inside of my liver, my doc scheduled an MRCP for November 8, 2017.
An MRCP is a Magnetic Resonance Cholangiopancreatography. (Wow, that’s a mouthful.) Basically it’s non-invasive imaging that analyzes your liver, gallbladder, bile ducts and pancreas, and it searches for:
- Obstructions, blockages, or stones
- Swelling and inflammation
- Infections in the bile ducts, called cholangitis
Ultimately, an MRCP would help us determine if I have PSC or not.
I was particularly dreading this procedure because I knew it would involve the intestinal dye, barium sulfate, just like last time when I had my MRE. Just its name brings back nightmares of the thick, slimy, milk-like substance that I could barely keep down.
But there was one slight issue about my MRCP. My capsule procedure was the week before, and I still hadn’t —ahem—passed the camera. At least not to my knowledge.
That’s bad news bears because MRCPs involve magnetic waves. So if there’s still a hunk of metal leisurely chillin’ or lodged and frightened somewhere deep in the crevices of my bowels, I needed it out within 24 hours.
My doc put in an urgent appointment for an x-ray of my midsection to find out.
I drove from my doctor’s office to the lab right then. I had to wait for a while, but finally got called back and tied on my medical gown.
The male technician was so sweet. He laid the protective covering over my uterus so it wouldn’t get any dangerous waves, and kindly said, “Now, I’m going to adjust this. Is it okay if I touch your hips?”
My mouth said, “Yeah, that’s fine.” But my mind said, “Dude, so many doctors have seen my butthole, I literally don’t care. This is your job, touch my hip if you need to!”
And remember—I was in the midst of a flare! And when in an unfamiliar building with no eyes on the bathroom, time is of the essence.
It was a simple, five-minute x-ray, and the results were processed that same day: No capsule in neither nook nor cranny of my intestines. Guess I had passed it sometime during the week, I just hadn’t seen it.
That meant the MRCP scheduled in less than 24 hours was a go.
The MRCP Process
So that next day, I arrived for my MRCP. This technician wasn’t as kind as the previous one, handing me a glass of barium sulfate and informing me to drink it quickly. Thank God it was only one glass instead of four, but even one is difficult to get down.
*(The barium is used to dye certain parts of your intestines so the imaging can capture a clear shot and any abnormalities can be easily identified).
I drank the revolting potion as fast as I could. Which was slowly.
He sauntered back to my waiting station and told me that if I didn’t finish it now, I’d be skipped and he’d start the imaging for the person after me.
So I threw my head back, and somehow, managed to keep it down.
The technician rolled me into the cylindrical machine, and I let the white walls and buzzing noises cradle me. I prayed the flare wouldn’t attack while in the middle of the machine. It didn’t.
A week later, I got an email that I could review my results online.
Somehow, in the middle of a flare and rising liver numbers, the results said, almost mockingly, normal and “unremarkable.”
I mean, I’d say it’s pretty remarkable that my liver numbers were high and that ulcerative colitis and Primary Sclerosing Cholangitis (PSC) are linked and that many signs were pointing toward that, yet, the results were normal!
Stay tuned for Part 3 of Rare Disease Day and we’ll chat about the final method that led my doctor to believe I have the rare disease, PSC.
In The Comical Colon’s Facebook group, let’s start a conversation:
Do you know someone with a rare disease? If so, how do you plan to get involved today? (There are SO many awesome options on the Rare Disease website!)
Let me know your plans either in the comments or in our 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.