Traveling Abroad Long-Term with Ulcerative Colitis
This is a bit difficult for me to dive into and talk about because it’s personal, but because I have met so many people suffering silently from the same thing or worse I want to share my story through a travel diary.
Where it all began
Today was really difficult. I started thinking that my life goals, my dreams, and what I wanted to accomplish could be deleted forever because of my ulcerative colitis. Immediately, I felt scared. I felt a wave of frustration and I felt trapped.
I wanted to live abroad long-term, I didn’t want a 9-5 job, but now I saw no hope of accomplishing my travel goals. I thought of all the worst-case scenarios as tears streamed down my face in my doctor’s office. I was completely overwhelmed.
That is what UC does to you. You never know if it’ll be okay. Doctors don’t know, you don’t know. It’s the hope that you’ll remain in remission that keeps you going, but the fear of a flare that sends you back into the doctor’s office.
So, how did I get here?
My boyfriend and I purchased one-way flights to Bangkok for January 2018 (I am writing this August 2017). We decided to leave our jobs and travel Asia and Europe.
Since I am leaving my job, I will lose my health insurance. So, responsible me decided to talk to my doctor five months prior to my departure to discuss my health care options.
My ulcerative colitis history:
At 17, I was diagnosed with Ulcerative Colitis. I was very ill and had to be put on steroids before finding alternative Western medication. In conjunction with that my parents sought other homeopathic remedies for me to take.
Eventually, my colon healed and I stopped taking the pills prescribed by my doctor. The next 6 years I was off medication. I went to college and I started working all without medication. I even lived overseas [Europe, South Pacific, Asia] for 14 months.
Only once I landed in New York City did I get sick again. Next I had a serious flare ten months after being home. I was hospitalized for four days because my body’s inflammation levels were too high.
I had to take steroid infusions 3x/daily. Since leaving the hospital, I have been on Humira [an Epipen every 2 weeks] and Remicade [a 2hr infusion every 6wks], but decided my body was more suited for Remicade. Now, my inflammations are normal and I feel much better.
Back to my doctor’s office and the tears..
Telling my doctor, “I will travel”
Since I have been in remission for a few months, my body has been feeling health and new. I knew I wanted to move overseas for 6 months so I decided I would tell my gastro I would be leaving the country.
I knew traveling with an auto-immune disease in Asia was going to be a challenge, so I decided to prepare my body before my departure.
I was confident that I would have my doctors reassurance to wean off my current medication. I believed [and still believe] that my body would [and will] adapt.
According to my doctor, I didn’t think everything through.
I knew there would be complications, but didn’t really anticipate the repercussions of getting off my medication. I had been Remicade dependent for maybe almost 2 years.
I also anticipated my doctor to be empathetic and give me recommendations for health insurance while living overseas. Instead, he wasn’t very empathetic.
The doctor’s options
He took the doctor’s route: He showed no sympathy and no emotion. My doctor only gave me the scientific options. He told me scenario A, B, C, and the worst case option.
I asked for suggestions for travel protection. He gave none.
Instead, he changed the conversation to what really mattered: acknowledging that becoming medically independent could ruin me.
The best advice my doctor gave me was, “you need to live your life, don’t let it live you.”
Then came my options, A, B and C:
- Stop medication and stop everything. This could result in my body building up antibodies and never being able to be on Remicade again. If that happens then I have to find another medication, then another if it is denied, and another until it works. Worst case scenario, I have surgery.
- Try a cheaper medication that I could afford monthly without having health care.
- Don’t travel, don’t quit your job, stay put.
Staying put was not an option for the lifestyle I wanted.
I hated his scenarios. I couldn’t help it, I cried. I thought I wouldn’t be able to leave the states or wouldn’t be able to quit my job because I wouldn’t have health care.
Part of me screamed, “Live your life!”
But on my other shoulder there was another tiny voice that screamed “Don’t get sick – stay put!”
A little movie motivation and encouragement
That same night, I went home and watched a documentary titled, “What the Health” [please also ready the Time Post about it]. This Netflix documentary discussed the repercussions food has on our body. I became totally sold on the idea that diet could resolve health issues or act as a preventative.
I have always anticipated the food we digest to be a major contributor to health issues. Even if it’s not a causation, it fuels the fire.
WE ARE WHAT WE EAT and food should be used for energy and replenishing our bodies not just for pure consumption.
If the foods we eat are chemically altered and loaded with pesticides, who is to say it won’t negatively affect our internal organs? Won’t that cause disease?
Deciding to travel and think for myself
A few hours earlier I was crying in front of my unaffected doctor about my Ulcerative Colitis. Now I had validation for changing my diet and a serious motivation [to travel and stick to a diet] that I hadn’t had before.
I have decided to question everything health. I want to live more holistically.
I am ready to take on my doctor and challenge my disease. I am changing to a vegetarian diet (90-95%) and will question everything I put into my body. I am ready for the next 10 months and living medication free with ulcerative colitis.