: October 18, 2017 :
Hi you! You deserve a shout out. That’s right, before we dive into today’s topic, here’s a gargantuan thank you for your patience when I disappeared on an unexpected three-month hiatus!
During those months of being extremely ill, stressed with accelerated summer courses, and—near the end of that hiatus—hospitalized, I wasn’t on The Comical Colon much. Which, upon my return, I’m KICKING MYSELF because as a writer and aspiring novelist, I realized I left you guys on a cliffhanger from Chapter 14 – Searching for the Reason for my High Liver Antibodies! Ahh! That’s a big no-no in the writing world!
So you deserve a shout out and a hug for coming back after all this time, after a “To Be Continued” hanging off the cliff.
(I promise, I’m not intentionally trying to pull a Game of Thrones here…)
High Liver Antibodies
As you may remember, in September 2017 (wow, a year ago!) my doctor starting noticing high liver antibodies in my routine blood work. I was also starting to slowly stop responding to Remicade, the miracle drug that I was confident would carry me through remission to a ripe old age of 101.These two red flags are signs that there is something deeper at play than just a dysfunctional colon. And a lot of the time, these signs point to a dysfunctional liver and/or bile ducts.
But, before my doctor jumped to any conclusions about the state of my liver, she scheduled me for an ultrasound and a colonoscopy (my third one, to be exact). We had to do these procedures in order to put the pieces together:
Why do I stop responding to medications after a certain period of time?
Why are high liver antibodies showing up in my blood work?
The purpose of the ultrasound was to scour my entire belly, analyzing every organ to try to identify any abnormality. When I walked into the room in my thin medical robe that October morning, the room was a comforting dim. The blue screen made up for the lack of florescent lights and the chair was comfy too.
When I sat down in it, I realized I was tense. Nervous. Worried about the ultrasound finding something abnormal, and equally worried about what it would mean if it didn’t find anything. The fact that my stomach was empty from fasting and grumbling boorishly didn’t help the intense knot of nerves in my stomach.
The technician spread the gel all over my belly and pressed, tickled, and smoothed the machine head over each of my organs: liver, gallbladder, pancreas, spleen, stomach, kidneys.
While at it, she also checked my aorta and my hepatic portal vein—the blood vessel that carries blood from the GI tract, gallbladder, pancreas, and spleen to the liver.
I watched the grey-black images of my belly compress and rise with every inhale…hold…exhale. The text on the screen was a foreign language to me, but her hands glid knowingly, seamlessly, to each keyboard button, snapping photos of my insides.
It tickled when she compressed the head into my ribs, and I was so thirsty from fasting that when I inhaled a chuckle, my dry throat clogged with the dry air. But if that’s what it takes to discover why my liver has high production of antibodies, it’ll more than make up for my ticklish ribs and desert throat.
Wishing the results were instantaneous, I left the building with livers and Chick-fil-A breakfast sandwiches on my mind.
Fast-forward about a week, I was filled with Chick fil a and the ultrasound results were in. I read my test results as soon as they were available to me online: “Mildly echogenic fatty liver. Normal appearing gallbladder and common duct.”
Fatty liver didn’t sound good. But the fact that my gallbladder and duct appear normal was great news!
My doctor explained that the excess fat in the liver is likely linked to the increased enzymes. Though this fat abundance doesn’t necessarily sentence you to to disease or death, it certainly can lead to liver problems down the road. For example, excess fat can lead to eventual inflammation, fibrosis, cirrhosis, and/or liver failure. Yikes.
“We need to keep a close eye on this,” my GI doctor said. “We’ll get more info when we do your colonoscopy soon.”
Let me tell you, colonoscopy could not roll around fast enough; I’ve discovered that most of my time with this disease is comprised of waiting. Hoping. Dead air.
The time in between procedures,
between procedures and results,
giving medications enough time to kick in…
Just less than a week, I told myself. It’s mid October, and I’ll soon have a nice pre-Halloween colonoscopy.
So a week before Halloween, I breezed through the colonoscopy prep, fasting, water deprivation, and dehydration headaches. Okay, well I didn’t really breeze through all this because it sure takes a toll on your body, but at twenty-three years old and doing your third colonoscopy, it felt like it was starting to become second nature.
(In fact, I discovered a few new, awesome tricks that I wasn’t aware of for my first two scopes, so be sure to sign up for my E-newsletter to get alert when this next post comes out! I’ll be sharing lots of practical tips on foods to help the preparation process!)
When I awoke from the scope, I was, of course, very groggy from the anesthesia.
I remember my GI doctor hovering over me, trying to tell me information. My parents were there, which is why she did this; because they were jotting down notes since I wouldn’t be able to remember everything, being super high and all.
But I remember bits and pieces.
Blurry motions of her on one side of the room, then the other.
Her liquid voice talking quickly, knowingly. She was telling me about my ultrasound results and my colonoscopy.
“You have excess fat in your liver…” My eyes shut and memory went blank.
Seconds later, (or maybe an hour?!): “Your scope was normal though. Hardly any inflammation.” My eyes widened. Focus on her face, her words. Don’t close your eyes.
Still picture of my mom furiously scribbling in her notepad.
Woke up in a panic with a gas bubble in my stomach. Am I about to shit? No, they just need me to pass gas before they’re allowed to let me leave.
“I think you might have PSC.” Okay, now I was more awake.
Those three letters strung together sounded foreign, haunting.
“Primary sclerosing cholangitis,” she added.
Ugh I’m drugged, how am I supposed to remember these words? Are they even English?
Both my parents were staring at my doctor. My eyes closed, but this time, the light beyond my lids stayed visible.
“All the signs are pointing toward it. We’ll talk about it more next time you see me in clinic.”
That’s all the information I remember. She had to go, she had another scope to do. (Guess that’s what I deserve for leaving you guys on a cliffhanger! A taste of my own medicine!)
Primary Sclerosing Cholangitis (PSC)
We left the hospital with even more questions.
What exactly is PSC?
How does it relate to IBD?
How will it affect my short-term and long-term treatment plan?
Is it life-threatening?
How quickly does it progress?
My doctor suggested to NOT look it up online. On most sites, it’s portrayed as a dangerous disease filled with hopelessness and life-long complications, so be careful of where you get your info. She assured us that there are medications out there that will stop it before getting anywhere near this point.
Now, I don’t want to ever leave you guys on any cliffhangers again. So I’ll provide a link if you would like to learn more about it now:
PSC Partners Seeking a Cure is a wonderful organization centered around PSC patients. I attended an informational PSC conference over this summer, and this organization is reputable and definitely focuses on hope in the midst of this disease. If you choose to research the disease, check it out here on this page 🙂
However, I will go into detail in future blog posts, so if you prefer to wait you can do that as well 🙂
So October 2017 was my unique period of time learning about spooky diseases, going on a haunted hay-ride of ultrasounds and colonoscopies, discovering mysterious liver fat, and facing my elusive liver boogeyman.
As I wrapped up October and Halloween, I kept my eyes on the positive—the medications available for PSC, the extremely low inflammation of my colon, and the thought that, heck, there’s still a chance I might not even have PSC!
Join me on this journey of discovery! Stay tuned as I dive deeper into PSC, delicious colonoscopy-prep recipes, and the comical that this crazy colon reminds me to pursue.
In The Comical Colon’s Facebook group, let’s start a conversation:
If you or a loved one have IBD, do you also experience symptoms outside your gut? How do you manage these extraintestinal manifestations? We’d love to hear your story, ideas, and advice in the 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.