After taking a one-year break from Remicade, I restarted the biologic in 2017. Unfortunately, it didn’t work as well as it originally did, and my doctor thought that my high liver numbers might hold the keys to discovering the answer.
In this blog post, I share why my elevated liver numbers threw a wrinkle in my health plans by suggesting that something other than just IBD was at play.
The First Signs of Yet Another Flare
I remember this flare reared its ugly head on September 16, 2017, because that was the day the Whole Life Challenge began. I was planning on joining that year, but my painful flare symptoms made that impossible.
My ulcerative colitis has the uncanny habit of showing up at some of the worst times possible. Luckily, I always kept emergency prednisone in my purse for times like this. I popped the pills, hating that I had to revert back to the meds that crush my self-confidence.
Warnings That This Flare Was Different
But this flare wasn’t normal. Not only was I getting Remicade every four weeks (instead of every eight, like when I first started in 2015) my doctor had also increased the dosage from 5 mg per kg of my body weight to 8 mg per kg.
The fact that I was flaring between frequent, high-dosage infusions made me extremely nervous. Something wasn’t right.
My doctor agreed.
Why was I breaking through on Remicade?
Why was I getting worse, not better?
Is there something deeper at play?
With every passing day, the cramps, pain, and urgency worsened. The thought of getting my colon removed crossed my mind, and I readily entertained the idea.
How This Flare Impacted My Emotional Health
For some reason, I wasn’t reacting to Remicade and I feared my body would similarly reject other biologics. With every day, every painful bowel movement, I became angry.
Angry at my colon. Angry at my body for attacking itself. I wanted to destroy my large intestine, banish it from my body. The thought of getting a colectomy grew from a bearable concept to an intensely desired option. I craved it. I wanted to fix my disease at the source. Nothing else was working.
I expressed these thoughts to my doctor, and she did agree that the option for surgery was on the table. But she, of course, doesn’t make rash decisions.
Before we could even discuss the possibilities out there (such as getting a colectomy, trying the biologic Stelara, or increasing my Remicade dosage again) my doctor said she needed to “gather data.”
Discovering My Elevated Liver Enzymes
One of the most efficient ways to gather data is through blood tests. My GI ordered various panels, and when she called a week later with the results, she broke the news that my enzyme levels were high.
I asked her what it meant and she replied, “It means something’s out of balance. We won’t know exactly what until we do more testing.”
Completely confused about what my liver had to do with my colon, I left the doctor’s office in a state of anxiety. She wanted me to get the exact same blood testing in another two weeks to see if they were still high.
Confirming My Elevated Liver Enzymes
Two weeks of nerves came and went, and I did the same blood test. My doctor called me to discuss the results: my liver enzymes were still high.
The rest of that day at work, I couldn’t focus.
What do high enzymes mean?
What’s happening to my liver?
Does it interfere with my IBD medications?
All these thoughts rushed through my mind, and I finished that day of work in a haze.
The Tests She Ordered to Understand My Elevated Liver Numbers
To get to the bottom of this mystery, my GI ordered a laundry list of exams, tests, and procedures in my immediate future.
This list included
- Specialty blood tests
- An ultrasound
- A colonoscopy
- A capsule endoscopy
- An MRCP
I knew all this testing would take time out of my days and I’d miss days of work. But I was ready. I needed answers
That night, I fell asleep nervous about my ultrasound the next day.
Read my follow-up blog post about the ultrasound and surprising results.
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