Finally, what you’ve all been waiting for: my first Crohn’s blog post!
When I started researching what it would be like to travel long term with my Crohn’s medication, I soon realized there was not a lot of information about the “how to’s” with this disease. So, I figured I would write down my experiences here so that others with IBD or similar ailments might be able to learn from my experience!
So, here we go.
Background info: I take Cimzia, 400 mg every two weeks, which requires that I give myself two subcutaneous injections twice a month. This one downside in exchange for living a mostly symptom-free and active lifestyle is totally worth it. I’ve been using the drug since early 2010, right around the time it was approved in the US for Crohn’s disease. The kicker to Cimzia (and traveling with it), is that it must remain refrigerated. (Although I did call the company that manufactures Cimzia to make SURE it must remain cool…. They explained to me that yes, for now there is only research that states that Cimzia is still safe and effective 24 hours maximum at room temperature, no longer).
The logistics of being on-the-go constantly while traveling city-to-city and country-to-country started making me a little uneasy as my trip drew closer.
Here are some ideas I had.
My (failed) options:
1) Convert to oral steroids while I travel to reduce the stress and hassle of worrying about taking Cimzia. When researching about other people in my similar situation, I ran across this solution multiple times.
**Why I decided against this: Cimzia is one of the few drugs in its class of “biologics” that is prescribed for Crohn’s disease. Once I stop taking it, my body will not allow me to go back to it. So, I’d like to take it for as long as it works for me. Also, there are many risks with long term steroid use, so I want to avoid those at all costs.
2) Plan ahead with my loving parents to ship me my meds from the US every month.
**Why I decided against this: Shipment of anything international is a little sketchy, especially medication that must remain at a refrigerated temperature. It could get rejected, damaged, lost, etc. I also did not know how long I would be in one place at a time or if I would be able to use a safe and appropriate address for where I thought I was going to be.
3) Try to have my insurance company ship me my meds to the US embassy in each country I visit. No joke, I emailed each embassy and spent hours on the phone with my insurance company 🙂
**Why this plan failed: My insurance company will only ship out of the US if I gave them an embassy address or a US military base address. Unfortunately, no embassy accepts mail “of any kind” for US citizens, even though I explained my ‘dire’ situation.
4) Call Cimzia, and see if they could send me the unconstituted version of the drug; that way I would not have to refrigerate it the whole time. I called Cimzia, and unfortunately, even if my insurance company approved that, the unconstituted version still must remain cold. So that was a hassle that wasn’t worth it.
My final decision:
To carry four months-worth of meds with me. This way, I could ensure that I would have access to the meds when I needed them, and didn’t have to worry about the logistics of receiving them from home.
The final prep:
I regularly receive a shipment of doses every three months, so I have three months worth stock piled. But what if I want to backpack for more than three months? I wanted access to at least one extra month of Cimzia.
So, I called my insurance company, and they said they could help me out with this one. They can issue what is called a “vacation override,” a very useful piece of knowledge! So, if there is another time that a vacation overlaps with a shipment of meds, it is possible to have an extra few doses shipped to you early. Therefore, I was able to have four months of Cimzia doses to carry with me to South America. (Should I have gone for five?!)
Not ideal, but at least now I had the ability to stay for four months, if things went accordingly!
My Crohn’s Packing List:
– 4 months worth of Cimzia syringes
– Two 30-day doses of Uceris, in case of a flare-up while traveling (this is an oral steroid)
– 4 thin refreezable blocks of ice (each about the size of a CD case)
– Collapsible cooler, just big enough to fit all ice and syringes (fits in the top of my backpack too)
– Small combination lock to secure the cooler with meds while in communal refrigerators but not large enough to draw attention to the pack
– Name tag, with full name and purpose of meds, etc.
– 3 XL Frio cooling devices ** I did a lot of research on the best and most realistic way of keeping my meds cool while on the go. These were the best I found. You soak them in cold water for about 10 minutes, and then as long as they get some airflow, they stay cool for DAYS! More on these and my experience with them later….
****** Also, an important note: I cannot stress enough the importance of preparing EARLY if you are going to go on an extended trip like this. Doctor’s appointments, research, and phone calls with drug companies and insurance companies takes a lot longer than it should and a lot longer than anyone wants it to. As prepared as I tried to be, I spent my final day in the States on the phone with my insurance company because I did not receive my extra month of Cimzia, due to various miscommunications. They same-day shipped it to a random CVS pharmacy in the middle of Manhattan (where I was), but not without a fight. So, I cannot stress enough how important planning is! I also cannot stress enough how important assertiveness and determination is throughout these bumps in the road. They can and will get worked out!
Alas, I was as prepared as I ever would be with this packing list and with four months of Cimzia shots in hand.
Next up: Do the ice packs work? Can the meds stay cold and safe? Can Alli and Elizabeth find people they can trust with refrigerators throughout South America?