: December 2017 – February 2018 :
Happy Friday! I hope this 3-part series in honor of Rare Disease Day has been interesting and eye-opening, too!
Today is the third and final installment to the events that led up to to my gastro doctor believing I have the rare disease, Primary Sclerosing Cholangitis (PSC).
Until my next medication got approved by insurance, Prednisone and Remicade were my temporary salvage. And, honestly, that sucked.
I had grown a tolerance to Prednisone, so all I got were its side effects without feeling better. (AKA moonface, insomnia, and ravenous hunger).
Also, Remicade was also failing me! Now, it was only helping me for four weeks instead of the original eight! And the only reason it worked for four weeks is because we increased the dose to 8 mL per kg of my body weight, instead of the original 5 mL/kg!
I was sick of going to the hospital every month for a three hour-long infusion that didn’t even do its job anymore. It wasn’t a good use of my time or money.
My Friend’s Wedding
Although I was feeling incredibly sick, I was determined to not let it stop me from going to my friend’s wedding in Texas. All I could do was wait for my doctor to get my next medication authorized, so I figured I’d keep living my life in the meantime.
But at what cost?
Attending a wedding looking like a real-life bobble head 😂😂😂
On the bright side, my friends and I had time to explore the city of Austin, Texas a few days before the wedding!
But no matter how hard I tried, I wasn’t myself.
I was fatigued; I felt sick; no matter how much sleep I got I was drained. Thankfully, I had a Remicade infusion a few days before I left, so I didn’t have any poop-related emergencies.
The trip was fun and the wedding was ABSOLUTELY gorgeous (it snowed and looked like a winter wonderland), but I was sick and, in the simplest terms, I felt ugly.
This is the BIGGEST my face has been because of Prednisone. I was embarrassed to have my friends see me without makeup (and they were ALL my previous roommates! They’d seen me without makeup billions of times).
I felt like I was in someone else’s body. I wish I wasn’t sick so I could have been more present.
The Next Medication: Vancomycin
After the wedding, I returned to California, still struggling with pain and chronic fatigue, but at least my next medication was approved!
This medication should help me and my doctor figure out if I have PSC or not.
If I DO respond well to the medication, it means I have PSC and the med is doing its job by relieving me of the symptoms.
If I DON’T respond to the medication, it means I don’t have PSC because there’s nothing for the med to act on.
The medication was the antibiotic, Vancomycin.
Now, taking Vanco for PSC is a HUGE controversy; the main reason why people are prescribed this antibiotic is to exterminate Clostridium difficile—or C. diff—which is a bacteria that causes diarrhea, stomach pain, fever, and even death.
Some doctors (like mine) are confident that Vanco stops the progression of PSC AND treats your ulcerative colitis symptoms.
Other doctors don’t believe there’s enough evidence supporting this, so they tend to prescribe their patients a drug called Ursodiol. (Urso is comparable to Vanco, but has its differences. But that’s a story for another day).
And, surprisingly, in a third category, some doctors haven’t heard of treating PSC with Vanco since it’s such a new method.
To find out which was true for me, I agreed to stop Remicade and start Vanco. If, in six to eight weeks, I’m out of my flare, we can pretty confidently say I have PSC. But, if in that time I’m still sick, I likely don’t have PSC.
Waiting for Vanco to Kick In
Simply awful. No Remicade to hold me over. Prednisone that had lost its effect on me. Those weeks felt like eternity, waiting for Vanco to kick in.
Trying to go to work but often calling out sick.
Scared for ten-minute car rides because there was no immediate access to a bathroom.
This pain and discomfort was similar to how it felt when I was first diagnosed.
The Happy Results
But after EXACTLY six weeks, the clouds parted. I had no urgent bathroom runs. The pain vanished. I got my energy back. I didn’t have to keep calling out of work.
I returned to my doctor at that time, my cheeks finally returning to their natural state. She was elated. She said I looked healthy. I hadn’t felt this great in years.
It was AMAZING NEWS that Vanco put me back in remission. But it also confirmed our fears of PSC.
Although Vanco is believed to stop the progression of PSC, it’s still not 100% confirmed. Vanco’s use for treating PSC and ulcerative colitis is brand new. So, I’m kinda like a guinea pig.
Although I’m extremely grateful that Vanco has put me in remission, I also live with a fear in the back of my mind about what my life will look like 5, 10, 25 years from now with PSC.
There is no cure for PSC; a liver transplant is the only solution. That’s why I created this 3-part series about PSC for 2019’s Rare Disease Day.
It Starts with Awareness
Awareness 👉 Funding 👉 Research 👉 Cures
I hope one day, I won’t have to take six pills of Vancomycin each day. I hope I’ll take one pill or get one injection, and my PSC will be cured! I believe it can happen, but it all starts with awareness.
I’d SO appreciate it if you would like and share this post. Let’s spread the word so we can eradicate PSC, IBD, and those puffy chipmunk cheeks!
In The Comical Colon’s Facebook group, let’s start a conversation:
What’s one thing you’ll do to help spread awareness? (It can be as simple as liking or sharing this post!)
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.