What it's like to hike and travel with an autoimmune disease (2)

Hiking and Traveling with an Autoimmune Disease: A Rambling Unicorn’s Story

Today, I am thrilled to bring you this guest post by Katy Shaw from A Rambling Unicorn. Katy is kindly sharing her story as part of my Diversity in Travel series.

Katy, aka “Unicorn”, is a long-distance hiker, traveller, and blogger. In 2017, she hiked over 1800 miles on the Pacific Crest Trail and in 2016 she hiked the 95-mile Wonderland Trail around Mt. Rainier. In 2019,
she embarked on a multi-year trip around the world that was cut short by the pandemic. These days,
she and her husband Daniel are living in an RV and travelling around the United States on a socially-
distanced road trip.

It was a gorgeous sunny morning in California’s Sierra Buttes Wilderness. Rugged mountains framed the horizon in stark profile against a clear blue sky. I had spent the past 3 months hiking along the Pacific Crest Trail (PCT) in my quest to thru-hike from Mexico to Canada. This was some of the most spectacular scenery that I had encountered so far, and I should have been elated. But I hardly noticed my surroundings. I was miserable. 

I have an autoimmune disease called Ulcerative Colitis (or UC). UC is a chronic disease which means that once a person is diagnosed with it, they have it for life. Sometimes the symptoms go into remission for long periods of time, and sometimes flare-ups occur. Well, I was having a flare-up…in a big way. I was experiencing abdominal cramps and bloating and had to constantly use the bathroom. 

Except that there is no bathroom in the wilderness. I was miles away from flush toilets, running water, and the medication I desperately needed. I had to keep running off trail to find a private spot so I could dig a cat hole. And each day I went without medication, the symptoms got worse.

Three days later I emerged from the wilderness to the town of Sierra City, where I checked into a hotel with a private bathroom. It was heaven. And that was the end of my attempt to hike the PCT in 2017, at least for the time being.

My Journey with Ulcerative Colitis

My journey with Ulcerative Colitis began in 2014 after a vacation to Playa del Carmen in Mexico. After returning home, I came down with a case of traveler’s diarrhea that never seemed to go away. In fact, the symptoms got progressively worse. When I saw blood in my stool, I began to get worried and contacted my doctor.

Several months and a colonoscopy later, I finally had a diagnosis: Ulcerative Colitis. UC is a disease which causes chronic inflammation in the colon and rectum. It’s the same disease as Crohn’s, except Chron’s Disease persists throughout the entire digestive system. UC, on the other hand, is confined to the colon.

Thankfully, my case is relatively mild. Ulcerative Colitis is typically treatable with medication, although the medication differs depending on the person and severity. In my case, since the disease is primarily confined to the end of my colon, I take an anti-inflammatory medication that is targeted to the disease’s location. To put it in plainer terms, the medicine is administered via enema every night before I go to bed.

I’m not going to lie. Putting an enema full of cold medicine into my butt every night before I go to bed – and then keeping it there all night – is not fun. I really struggled with it when I was first diagnosed 7 years ago. In the beginning, I only took the medicine when I had symptoms and then stopped as soon as my symptoms went away. But when the flare-ups came roaring back, worse than before, I learned to take the medicine for the full 3 months as prescribed by my doctor.

Ove the years, I’ve gotten used to taking enemas. It’s actually not so bad once I got used to it. Now that I know more about Ulcerative Colitis, I’m grateful to have medicine that treats my disease so effectively. Many people with UC are much worse off. Some have to take immune-suppressing drugs or biologics and others must have parts of their colon surgically removed.

Preparing to Hike the Pacific Crest Trail

Hiking the Pacific Crest Trail has long been a dream of mine. Stretching for over 2600 miles from Mexico to Canada, the PCT travels through high desert and alpine wilderness areas along the spine of the Sierra and Cascade Mountain ranges. Hikers who attempt to finish the entire trail in one season are called thru-hikers. This undertaking typically involves hiking an average of 20 miles a day, every day, for 5-6 months.

When I hiked the PCT, it wasn’t something that I took lightly. I prepared and researched and trained for years before embarking on my journey. I was obsessed with finishing the entire PCT in a single season and did everything I could to make that dream a reality. I bought ultra-light gear to minimize my pack weight, worked with a personal trainer, and prepared over 30 resupply boxes for my husband to ship me along the way.

I also checked in with my gastroenterologist because I was worried about hiking with Ulcerative Colitis. Back in 2017, I was still a relatively new Ulcerative Colitis patient. I was diagnosed with the disease in my late 30’s and had only experienced one flare-up at the time. In fact, I was secretly hoping that it had all been a fluke. After all, I hadn’t had any symptoms in over two years.

Hiking the PCT with Ulcerative Colitis

With the blessing of my doctor, I began hiking the PCT in April 2017. I traveled over 1000 miles in three months with no complications from my autoimmune disease. I grew stronger and leaner and learned to hike faster. I earned the trail name “Unicorn” for my signature Unicorn rainbow trucker hat which never left my head.

All that changed in July 2017 when I experienced a UC flare-up. After I finally made it safely off the trail, I flew home and made an appointment to see my gastroenterologist. He ran a battery of tests to ensure I hadn’t contracted giardia or worse and then put me back on the enemas. 

When my symptoms improved a few weeks later, I was itching to get back on the trail. By this point, I knew there was no way I’d finish the entire trail in a single season. I had lost too much time recovering from the flare-up. But I wasn’t deterred. I wanted to continue hiking and finish as much of it that I possibly could.

Next came the fun part. What was I supposed to do about my medication? I still had to continue taking enemas every night, even though my symptoms had improved. I had been careful to keep my pack weight as light as possible to avoid injuring my feet and knees. I couldn’t fill it up with a month’s supply of enemas.

It was a difficult challenge to solve, but not insurmountable. I decided to carry 7 enemas at a time on the PCT. Since I typically picked up one month’s supply at the pharmacy, I had to ship myself boxes of enemas to towns along the trail. This meant hiking on a tight schedule to ensure I picked up packages on time and periodically refilling the prescription at random pharmacies. I also had to remove some clothing from my backpack to make room for the extra weight. 

Somehow, I made it work. I resumed my through-hike on August 1, 2017, and hiked another 800 miles with enemas in my backpack. While I didn’t finish hiking the entire PCT in 2017, I did hike over 1800 miles in a single season. I’m hoping to complete the sections I missed someday, but we’ll see. Life seems to have other interesting things in store for me. 

The Great Vagabonding Adventure

After returning from the PCT, I began planning my next adventure. My husband and I decided to move out of our home and spend the next three years traveling the globe. We got rid of most of our possessions, packed tiny travel bags, and flew to Barcelona in October 2019.

Obviously, we hadn’t planned on a global pandemic happening. Daniel and I were in Italy when the Coronavirus outbreak occurred and had to flee the country as a result. We both caught the virus on the flight back to the United States which was a surreal experience (you can read more about that particular adventure in my COVID-19 Diary).

Before the outbreak occurred, however, we did travel for six months together across Europe. After spending a month in Croatia, we visited Montenegro and then travelled by train to Bosnia & Herzegovina, Serbia and Bulgaria. By December we had made it to Romania where we planned to spend the Christmas holiday. It was during our visit to Bucharest that I experienced my sixth Ulcerative Colitis flare-up.

Travelling across Europe with Ulcerative Colitis

I had been wondering what would happen if I got sick in another country. My medication is outrageously expensive. Would I have to see a local doctor to get a prescription? How much would it cost? How would I handle lugging around enemas in my travel backpack?

Well, I was about to find out. After emailing with my doctor back home in the United States, I headed to a local pharmacy. As it turns out, pharmacies differ from country to country in how they fill prescriptions and dispense medication. Sometimes pharmacies in the same country or even the same city have different policies. 

I located a pharmacy in Brașov during a tour of castles in Transylvania and spoke with the pharmacist. She had the medication I needed but under a different brand name. This medicine was in suppository format, rather than enema format, which was about the size of large pill. I didn’t need a prescription and it was a fraction of the cost that I had been paying back in the United States.

This was excellent news! I hadn’t even heard about the option of using suppositories before. They are much easier to store and carry around than bulky enemas. I wasn’t sure if the medicine would be as effective in this format, but I was curious to try. Thankfully, my doctor agreed.

Since I was only able to secure a month’s supply of medicine in Romania, I had to get refills as we went. This turned out to be difficult at our next location (Istanbul) so I tried again when we arrived in Amsterdam. I had better luck there, thanks to the Expat Medical Centre in the train station which made the process very easy. A month later I had to do it all over again during our visit to Odense, Denmark.

What I’ve Learned from Traveling with Ulcerative Colitis

Flash forward a year and I’m still traveling, although these days I live in an RV and travel across the United States while trying to avoid other people. I still suffer from periodic flare-ups and have to take enemas (although they’re lot easier to transport in a motorhome). 

But I’m determined not to let Ulcerative Colitis stop me from doing what I love. Sometimes I get sick and have to stop for a while, but then I figure out a way to keep on going. I research destinations in-depth before leaving and keep our travel plans flexible. I stay in touch with my doctor and come prepared with everything I might need in case I get sick.

Sharing my experience with other people helps too, as does having a sense of humour. Pooping isn’t generally a topic that comes up in polite conversation (unless you’re a runner or a hiker). But let’s face it – the whole situation is actually kind of funny. And it’s really not a big deal. So what if I accidentally poop my pants? I just clean it up and write a funny story about it on my blog.

Then I keep going and never look back.

For more information and resources on this topic,
check out Katy’s article on hiking with Ulcerative Colitis.

You can follow Katy’s travel and hiking adventures on her web site A Rambling Unicorn
or her A Rambling Unicorn Facebook Page.

9 Comments

  1. LOVE this! Thanks for sharing this and being an inspiration for others with UC. Also tips on traveling and medication expenses is super helpful for people feeling like they cannot leave home without restraints!

    1. Thanks Taylor! I admit the idea of travelling was a little scary right after my diagnosis but once I got out there I realized it was totally doable!

  2. WOW! What an absolutely incredible story. I think it’s amazing that you didn’t let ulcerative colitis stop you from seeing the world and then continuing to travel across the US! You’re an inspiration 🙂

    1. Thanks Megan! I’m more of a day hiker these days too. But every once in a while I get inspired to do a longer trail.

  3. Wow, what a powerful story! I don’t think I’d heard of Ulcerative Colitis before this. Thank you, Katy, for being so vulnerable and sharing. Your resiliency is so inspiring! Can’t wait to hear about more of your travels!

    1. Thanks Riana, that’s very kind. I confess, I hadn’t heard of Ulcerative Colitis before I was diagnosed with it either. Now I know way more about it than I ever wanted to know LOL!

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