: SEPTEMBER 16th, 2017 :
How many of you are familiar with the Whole Life Challenge?
If you haven’t heard of it, it’s a six-week challenge held several times a year; you use a point system to track and improve your life in the seven areas of nutrition, exercise, mobilization, sleep, hydrating, reflection, and well-being.
And, in September 2017, I was SO READY! I was finally going to join. I was back on Remicade every four weeks and feeling great. Ready to take back control of my life, I had given myself enough time to mentally prepare for it (something an introvert like myself desperately needs).
I remember the first day of the Challenge was September 16th…
…I remember because that’s the day another flareup reared its ugly head.
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, regretfully, hating that I had to revert back to the meds that crush my self-confidence.
This flare wasn’t normal. Not only was I getting Remicade every four weeks (instead of every eight, like when I first started) my doctor had also increased the dosage from 5mg 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 didn’t hate it!
For some reason, my body wasn’t reacting to Remicade, and my fear was that it 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.
I expressed these thoughts to my doctor, and she did agree that the option for surgery was back on the table. But she, of course, doesn’t make rash decisions.
Before we could even discuss the possibilities out there (getting a colectemy, trying Stellara, increasing my Remicade dosage again) my doctor needed to “gather data.”
This meant a laundry list of exams, tests, and procedures in my immediate future. The list included blood work, an ultrasound, a colonoscopy, a separate endoscopy, etc. I knew this would take time out of my days and missed days of work. I was ready.
The first step: blood work. On October 3, 2017, I did my seemingly billionth blood test. I’m not quite sure what my doctor was looking for in the results, but I was more than eager to do these tasks ASAP if it meant gathering data and helping us make a decision (hopefully surgery!) At this point, I was hoping for it; I was sick of the daily pain and the energy that this crippled colon destroyed.
About a week later, I met with my doctor to discuss the blood work results.
“Your liver antibodies are high,” she stated. If she was worried, she didn’t show it.
“What does that mean?”
“Something’s out of balance. We won’t know more until you do more testing.”
Completely confused about what my liver had to do with my colon, I left the doctor office in a state of anxiety. She wanted me go get the exact same blood testing in another two weeks, and we wouldn’t have answers until I do that second lab work, and the other tests. I hate playing the waiting game.
Two weeks of nerves came and went, and I did the same blood test. My doctor called me to discuss the results: my liver antibodies were still high.
She told me this with fingers flying on the keyboard (I could hear them in the background) scheduling me an emergent ultrasound—for the very next day!
The rest of that day at work, I couldn’t focus. What do high antibodies mean?
What’s happening to my liver?
How does my liver interact with my colon in IBD.
Does it interfere with my medications?
All these thoughts rushed through my mind, and I finished that day of work in a haze.
I fell asleep that night dreaming of the next day’s blue lights dancing in a dark room as technician presses the cold instrument along my belly.
…To Be Continued…