Backpacking with Ulcerative Colitis

My wife and I made a major life decision in late 2018. We had both toiled away since university, working our way up to relatively good positions within our respective businesses. But we just couldn’t help feeling that there was something missing. Something that we had both wanted to do for a long time without really talking about it too much. We wanted to travel. Full-time and probably for a year. But how can you do that with a chronic illness? Hopefully this article outlines how it is possible to go backpacking with Ulcerative Colitis…

Temple at Sunrise, Bagan

Initial Steps

The first step was leaving our jobs. A particularly difficult step since we both loved our companies. It also meant stepping into the murky, unknown waters of unemployment. Then, it meant wrapping up our lives in Germany. Leaving behind a close-knit group of friends and the existence we had built over 5 years there. But, thanks to Facebook Marketplace, we sold most of our belongings. Then scooped up our cats and headed over to London in February 2019. Arriving armed with only a handful of boxes and a whole lot of hope.

We made our travel plans. Heaps of spreadsheets, Trello boards and Lonely planet guidebooks pointing us in the right direction. For years I had dreamed of going India and Nepal. Especially trekking the Annapurna circuit in the Himalayas. We added these to South East Asia, a trip around China, along with stops in Australia and New Zealand to see family.

And, flight tickets in hand, hotels booked and a pretty good looking itinerary, we were ready to leave in early April 2019. First stop, India!

Disaster strikes

Then disaster struck. About three weeks out from our leaving date I had a fever and an upset stomach. Having had the nickname “sick note” from some of my closest colleagues, I initially thought it was a virulent bout of food poisoning. Terrible timing. But at least it would be out of the way before I got to India, the country synonymous with Delhi Belly.

But I couldn’t shake it. As a few days turned into a week. Then two. And the departure date crept ever closer. I started to panic. After some frantic enquiries and phone calls, we managed to snag a private (and eye wateringly expensive) appointment with a Gastroenterologist.

During a quick consultation, and after hearing my symptoms and family history, he was pretty certain that I had Ulcerative Colitis. An incurable autoimmune disease.

Those few days around the appointment and then desperately researching this new disease seem a little bit of a blur. There was definitely a lot of uncertainty. A hint of fear. And a sprinkling of stress. The doctor had also given me the advice not to travel until I’d had a colonoscopy and so we also needed to cancel a bunch of things. That pricey travel insurance sure came in handy!

Being diagnosed

Two weeks later, I was horizontal on the hospital bed, waiting to go in for my colonoscopy. Ever the optimist, even at that stage I felt sure that they wouldn’t find anything wrong and I’d be able to re-book the travels that evening. But after the quick procedure, it was confirmed that I did have UC. Diagnosed with moderate Pancolitis. And then put on a course of Prednisolone and Asacol.

Over that following week I started to feel myself again. Gradually, the drugs really kicked in and my symptoms seemed to ease quite a bit. I know that I’m one of the lucky ones. For many, they don’t work. And it’s a case of continually trying a different range of medication to get the disease under control.

The good news

After having my blood work done, my doctor was confident enough for  me to go backpacking with Ulcerative Colitis that he signed me off. He suggested I kept a food diary to see what reacted well with me and what I should perhaps avoid. He also gave me some sound advice around local hospitals (most of which can be found on the IBD Passport website – a lifesaver when travelling) and asked me to check in regularly and get blood tests done in 6 months, wherever we might be in the world.

Reclining Budhha Wat Pho, Bangkok

At that point it was back to the spreadsheets and our planning started again in earnest. And, just five days later, lugging 5 kg (no kidding) of medication in a new Osprey backpack, we were en route to Heathrow and headed to Bangkok, Thailand! Since then we’re already circled Thailand and made our way through Myanmar, wandering the streets of Yangon and taking in the sunrises over the temples of Bagan. A dream of mine for almost 20 years. At time of writing, we’re off to Laos, before hitting up the rest of South East Asia on the first leg of our trip.

How is this possible?

Backpacking with Ulcerative Colitis is no easy thing. For the most part, it is about super organised planning. I plan ahead to ensure I know if there is a nearby restaurant or a public bathroom, and the conditions on buses, trains and boats that we book.

Take my medication religiously, with handy alarms set in both of our mobile phones. I always carry tissues/hand sanitiser/baby wipes everywhere (plus a spare pair of undies on long trips – you just never know!)

Also, I talk to pretty much everyone about it. Whether it’s the diving instructor to understand hand signals that I might be making underwater, or the coach driver in case we need to pull over for an unscheduled pit stop. It’s actually quite refreshing chatting to other travellers about it. 9 times out of 10, they have also had some pretty bad tummy troubles and experienced some less than pleasant bathrooms on the road.

And finally, but most importantly, I’ve looked at building a supportive community around me. Rallying family and friends, joining and engaging in support groups online and speaking to other travellers experiencing the same thing. I remember coming across the profile of one such traveller, the inspiring Uncorked Librarian, on Instagram and her blog, who has spent many years managing her Ulcerative Colitis. Speaking to her filled me with hope that, like her, I too could travel extensively with my condition and instead of making it a hindrance, use it to help and inspire others.

Some with this condition (and others like it) might not be able to travel the world, as we are attempting to do. But I hope that, if anything, this article provides proof that you CAN even backpack with an incurable disease, as long as you’re careful about managing it and take appropriate precautions. It might not be convenient to seek out a bathroom in the backstreets of Bagan, Myanmar but it IS possible. Just keep those wet wipes handy… And be ready to drop your expectations.

Bluerama pool, Koh Pha Ngan

Are you suffering from a condition like mine? I would really love to get in touch with you to exchange stories. Get in touch via the website or feel free to contact me via Instagram.


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2 Comments

  1. 6th June 2019 / 1:39 pm

    I am so glad that you enjoyed the post I wrote as well as the honesty. Thank you for reaching out, too!

    UC is tough. When I first got diagnosed, I tried to avoid everything online. I feel like people search the web for answers but mostly find that information disheartening. It’s easier to complain or be sad vs talk about the positive. (It’s like reviews–studies show that we are more likely to write a bad review than waste our time writing a good one). Forums scared me so I just stopped completely talking about it, which doesn’t help anyone.

    I started with Asacol, too, and was on it for about 7 years. Sadly, my new insurance stopped covering it (gahhh), and I am on Apriso (basically the same drug) along with Remicade infusions. For now, they work–and I love being able to eat all the good veggies again.

    I am so glad that you are still traveling. It is possible. There will be good days and bad, but you have to be you and live your life. I truly believe that everything falls into place, and you can get care anywhere in the world. I look forward to following you on your adventures.

    Plus, UC makes life more interesting. I am not defined by it, but UC changed my life. I had to alter my life–I just HAD too. It’s taught me a lot and added an unexpected element. I am not sure how my life would have turned out without it, where I would have lived, and what my job would be (I quit working with the public since autoimmune suppressants make it nearly impossible), but I’m happy for who I’ve become dealing with it. I hope you will be too. I will never stop traveling–that’s for sure! We got this!

  2. 3rd September 2019 / 9:41 am

    Hey James kuddos to your spirit to go for a vacation even after being diagnosed with a disease really enjoyed reading your article and felt quite motivated to do something in future if anything like this arises with me also, thansk for sharing this article will help others too.