Crohn’s Blog Post #3: When the Sh** Got Real

A short reflection on four months of international travel with Crohn’s disease

WARNING: This post contains some graphic descriptions of intestinal issues… If you have never experienced abdominal/intestinal distress, you should consider halting the reading of this post right now (but let’s be honest, we’ve all experienced bowel issues, am I right?)

It has been too long (a couple of months) since I last gave updates on my international travels with Crohn’s Disease, so I wanted to write this last post to fully update everyone! Since my last post, we have traveled through Chile, Argentina, Uruguay and Colombia. Overall, the day-to-day travels with my meds (Cimzia) became second nature and very easy for us. It truly just became part of our everyday travel experience, and I am so grateful for that.

Significant updates

With about a month or so left of our travels, I began to have worsening GI symptoms that to me, seemed like the signs of a flare-up. I was experiencing more frequent stools, urgency (a couple times almost didn’t make it to the bathroom in time), and abdominal pain. Nothing that I haven’t dealt with before though, and for a while, it was totally manageable. I did start to monitor it more closely and jot down when and how frequently I had stools, what they looked like, what I was eating, etc. For whatever reason, I REALLY did not want to take action about it until I returned home. “I was fine,” “I was fine.” I think that whenever I continually feel the need to say that I am fine, that should be the first sign that I am not fine.

I finally reached out to my wonderful team of doctors at Northwestern (who have been involved and aware of my travels) to see if I should just take a dose of Uceris (the steroid). They agreed. 

Two days after taking it I had my first solid poop I had had in a month! Woo! But the excitement and improvement didn’t last long. I then went on a four-day trek through the Colombian Sierra Nevadas where our entire group came down with what we guessed was food poisoning. So I was back to feeling miserable and “pooping my brains out” for a couple days, but I took an antibiotic, continued to take Uceris, and began to feel better again.

This was actually when I had been scheduled to return home to the US. I had to plan my return home at the time I would run out of my four months of Cimzia that I had brought with me. (This was a very frustrating reason to come home for me, but it was the reality). I scheduled an appointment with my GI docs right away and found out some very interesting things!

They ran their standard stool sample tests on me (which I always have to do, hate doing it…it’s gross, and they always come back negative, so it’s a waste of my time). However, this time, they didn’t ALL come back negative. I actually was positive for Giardia AND Salmonella! And had no idea! Gross! The antibiotic I took in Colombia doesn’t cover either of those, so I still had these parasites/bacterium and didn’t even know it…. I started two different antibiotics right away and have been feeling better since.

I wanted to share this because my doctors and I realized that my worsening symptoms could be from a Crohn’s flare-up and potentially from a decreased efficacy of Cimzia (which I was convinced that I needed to switch treatment for a while due to my symptoms and need to take a steroid again), but also I could have had these symptoms from the parasite or bacterial infection. YIKES! But such a good thing to consider and not to overlook while traveling. I was constantly eating street food and exposed to things that could easily get me sick.

So, here are my retrospective tips for long term/international travel with Inflammatory Bowel Disease (and for people who are on a biologic):

Carry your meds with you. (Insurance companies refuse to ship out of the US unless to an Embassy- and Embassies refuse to accept packages for citizens….a big bummer).

Have a proper and good quality cooler for your medication, whether you are on Humira, Cimzia, etc.     With my Cimzia cooler that I have used since the end of November, long-term bus rides and other times of travel without a refrigerator became way easier and less stressful. Honestly, it all became second nature to me. (Call your specialty pharmacy and/or Humira or Cimzia themselves, and they should help with this!)

Come prepared with a “Plan B” if your symptoms worsen and you flare while abroad. I brought a couple doses of Uceris, a steroid that has worked well for me in the past. (Although I hate the need or possibility of taking any steroid unnecessarily, you just have to be prepared for anything.)

DO NOT overlook the possibility of another GI bug and/or parasite being the cause of worsening symptoms. Exhibit A: me. 

Be in contact with your Gastroenterologist before, during, and after your trip. My doctors made my travel plans possible and sent me to South America with everything they could prescribe/recommend/warn me about. They also made themselves available to me through email while I was traveling, and got back to me extremely promptly when I most needed it. And my immediate follow-up appointment when I returned was a Godsend…. who knows how long I would have unknowingly dealt with that intestinal parasite.  


Last but not least, I want to highlight how possible international and/or long term travel can be while managing a chronic illness! There were more hurdles to jump over and things to plan for, etc, but I cannot stress enough how possible this is for anyone who has the desire to travel. It can be stressful and scary at times, but it all just adds to the adventure of life. I am a firm believer that life is too short to not take risks to pursue your passions. Travel became a passion of mine, and I was determined to make it work. Please, if you or anyone you know has Crohn’s, another Inflammatory Bowel Disease or another (chronic)
illness and desires to travel and would like to talk with someone who has done it, please get them in touch with me at any time!
And thank you all who read this for enduring all the poop talk!

  

God bless,
Alli 

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2 thoughts on “Crohn’s Blog Post #3: When the Sh** Got Real

  1. Alli,

    You don’t know me, but my name is Enrica. I’m 24, and I was recently diagnosed with Crohn’s disease and prescribed Cimzia, which I haven’t begun taking yet. When researching tips and trips for how to keep my Cimzia cold during a 14 hour door-to-door trip from California to New York at the end of the month, I stumbled on this blog. You. Are Amazing. Your journey is inspiring and is honestly getting me through the anxiety I’m feeling as I get ready to travel with this mystery drug that I don’t even know how I’ll react to.

    I’m not sure how to reach out to people privately through WordPress, but if you do, please sent me a private message because I would LOVE to get in touch with you about your journey. My own blog (which I haven’t updated in like a year) is samruna.wordpress.com.

    Hope to hear from you,
    Enrica

    Like

    • Enrica!! I apologize for replying so horribly late! I am so happy my posts helped you- that is why I wrote them! I’d love to get in touch with you and see how you are doing. My email is agslamkowski@gmail.com. Or we can connect on Facebook as well! So sorry again, and I hope to hear from you.

      Like

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