During the summer of 2011, I had been volunteering at the hospital, just as I had the previous two summers. I was in standing at the pre-op desk early in the morning, helping to label patients charts for the day when all of a sudden a wave of nauseousness came over me. My face went white and my knees started to buckle. This was the breaking point. We had to find out what was going on. For the previous six months, I had been having inconsistent BMs (sometimes up to 15 a day), was tired every day after school, would nap whenever I could, and experienced continual weight loss. I tried a multitude of dietary restrictions and while things may have worked at first they always reverted back soon after. Whenever my mom asked about it, I always chalked it up to stress, whether it be exams, or a show that we were opening soon, or a tough test I needed to focus on. Turns out my guess wasn’t 100% wrong. Stress was a factor.
In October of that year, after a series of trials and tests, I was diagnosed with Crohns Disease in my senior year of high school. It was great knowing that this issue finally had a name, but the more I learned about it, the more this disease became a “ball-and-chain.”
What is Crohns Disease? It is an autoimmune disease in your gastrointestinal system where your immune system is trying to fight off the bacteria in your gut.
The doctor said:
“Its a textbook case.”
“It has no cure.”
“You’ll be on medicine for the rest of your life.”
While I didn’t have any career plans at the time, I did like having options, and this disease felt like it was closing one door after another before I even had the option to explore them.
They started me on the most aggressive form of treatment which were biologics and a scattering of other medicines. It started with Cimzia. After the loading dose of four shots in my abdomen, it went down to two shots once a month. This system worked for a year or so until the effectiveness started to wear off. Then we switched to Humira. It still required administering shots to my stomach, which over time I had learned to administer myself.
Eventually there came a point where I wasn’t going to let my Crohns (more specifically the medicine) dictate the limitations of my life anymore. In February 2016, my friend Erica and I booked a flight to Norway. We didn’t have a plan or itinerary, but in the fall of that year we knew we were going to backpack Europe. I didn’t even have a plan for what I was going to do about my medication that needed to be refrigerated and administered every two weeks. After searching and scouring the internet for people traveling with Crohns, it wasn’t surprising to find that there are not too many people who travel for extended periods of time with Crohns Disease. At this point, we knew we were going to be on the move through Europe for approximately three months. Many nights of researching and digging through the internet, I found a blog post of one person who backpacked through China for three months while on Humira.
That was it. That was all it took. One post and I was sold. The impossible was becoming possible!
For my birthday that year, the best gift I received was the travel case that would hold all of my Humira pens. Now the next obstacle was getting the right amount of Humira needed for that trip. Six syringes to be exact. Shout out to my mother for being a “tiger” (exact word used by my GI doc to describe my mother) for being such a medical warrior on my behalf and getting the clearance needed from the insurance and pharmacy companies to get me the medicine I needed just hours before my flight departed.
Traveling definitely had its challenges. Language barriers, long travel days, hostels with no freezers. I stored my medicine in everything from beverage refrigerators in the airport to high end hotel kitchens. I can vividly remember washing out my travel case in the sink of the airport and drying it under the hand dryers as soon as we landed because one of the icepacks ended up popping and getting gel all over everything during our first flight of the trip.
Shortly after arriving back in the states, the idea that this Humira was doing nothing for me manifested itself in my thinking. That coupled with the fact that I hated taking these shots led me to do something very stupid: I quit all of my medicine.
It wasn’t until about 6 months later, when my mom confronted me if I had been taking my shots that I was caught. I don’t quite remember how the news was broken, whether I told her or she found out, but it was not a happy moment and she promptly, for lack of better words, tattled on me to me GI doctor. Blood work was ordered, appointments were made, and next thing I know, i’m sitting in front of my GI doctor with lab results that were slightly unexpected. Being six months med-free, my doctor expected the lab values to be completely haywire, but they weren’t. They were a little high, yes, but no where near as bad as expected. Still salvageable so to speak.
There was a couple of problems though moving forward:
1. Going back on Humira wasn’t a great option because its likely my body has built up antibodies to the medicine.
2. I really didn’t want to go on Humira again.
3. I was a month away from joining AmeriCorps, which involves a lot of travel and as we have seen before, traveling with Humira is not an easy process.
Due to my unexpected lab values and my previous track record with how well my Crohns has been doing, doc decided to put me on a daily low dose medication. It was honestly a dream come true. This is the answer to what I have been looking for! I can live freely without feeling tied to a refrigerator for the rest of my life!
When I saw my GI doc after AmeriCorps, a year later, there was one lab value that was waving a GIANT RED FLAG, the C-Reactive Protein test. This test is a blood test marker for inflammation in the body. The higher the number, the more inflammation in the body.
The normal range for a healthy person is 1.0-3.0 mg/L.
When I left for AmeriCorps a year prior, it was at a 5-6 mg/L (roughly).
When I got back a year later, this past May, my lab value for this test was at 17mg/L!
Med dosage was quadrupled and the test was taken again two months later. It came back at 14mg/L.
Through the concern, I think Doc was a little boggled too. All through my life with Crohns, not once have I experienced any abdominal pain. Abdominal pain is almost always the most common symptom of Crohns disease and I have never experienced it. Even now when my inflammation is quite literally through the roof, I still felt pain free. There were no answers for this.
Unfortunately, things were not looking good for me and concern was definitely prevalent for Doc and my mom. I was days away from departing on the World Race for the next 11 months and these test results were too high to be comfortable in letting me go.
I was about to leave for foreign countries where I am susceptible to diseases and illness without easy medical care. What if my body decided to have a flare up? What if I became very ill from due to my low immune system? Would I have enough meds? Can we try putting you back on Humira? So many questions raced through their heads.
Doc sent me off with a script to get the C-reactive protein test completed every three months while I was on this trip. My mom even told me, “I am giving your doctor authority to tell you to come home if he does not feel comfortable with the lab results when they come in.” While not ideal, all of this was a fair compromise I was not about to refute.
During our first month in Chile, some weird things happened, and by weird I mean FREAKING amazing.
For the first time in seven years, I had consistently solid BMs, for 3 weeks. That in itself was truly a miracle of God. Wanna know what I changed? I cut out vegetables. I have now become a vegetable-intolerant person apparently. In Ecuador, I had a hard reality check/confirmation that vegetables mess me up when I had Humitas (a heavily corn based food) in Ecuador.
All through this time I am just praying that the lab results in Colombia will reflect what I am feeling on the Race. I am praying that the lab results can be a reflection of Gods healing. I am praying for good results, because despite how I am physically feeling, its the labs that show the hard facts.
This past Monday morning I went to the hospital in Medellín, Colombia with my squad mate, Frieda, who was one of many blessings that morning.
1. Frieda translated for me everything from registration to the nurse who took my blood.
2. The test only cost $30 (without insurance). Whereas I was expecting to budget $100-$200 per test.
3. The nurse found the vein on the first try. I normally have bad veins and in the states and they usually end up drawing it from my hands.
4. We were in and out in under an hour.
5. I would have the lab results emailed to me by 2pm that afternoon.
As 2pm approached, I was refreshing my email nearly every minute. In my mind, this was the moment of truth as to whether or not it would be questioned if I had to be pulled to go home. It may not have been that drastic, but thats certainly how it felt.
Shortly after 2pm I got the results: 0.28mg/dL
I was confused. The range wasn’t even the same as back in the states. I forwarded the email off to my mom and through some clarification and overlooked conversions, it turns out my lab result equated to 2.8mg/L. I was under? I was in the safe zone? How can this be?
I went from 14mg/L to 2.8mg/L in just 2.5 months!
I was in shock, that cant be right. There is no way it came down that drastically. The same medicine and lack of vegetables couldn’t have possibly made an effect that drastic. The truth is, I really don’t think it did. While it may have helped, somewhere in these results God healed. I have been praying for this since the day I left the states, I have been prayed over by leadership, teammates, and squad mates. In addition to healing, I prayed for peace of mind for my mom and Doc as I go on this year long journey, that the results give them peace of mind about my being abroad for such an extended time. The big prayers were sent and God concretely answered.
While I cant have vegetables still and what I want more than anything is an apple on travel days, I know He isn’t finished yet. This was just a preliminary healing, this was just for peace of mind, there is more to come.
