How To Travel With IBD: Tips And Information

How to travel with IBD? What are the things to watch out for? Is it even possible to travel with an inflammatory bowel disease?

When I was first diagnosed with Ulcerative Colitis, an autoimmune disease that belongs to the so-called 'inflammatory bowel diseases' (short: IBD), I thought that my travelling days were over.

At least, that's what the first gastroenterologist I encountered told me.

Luckily, after a very severe flareup of the disease, I came to the UZ Leuven in Belgium, one of the very best hospitals in Europe. With the help from an incredible IBD-team, I was able to gain a better understanding for my disease. I learned to live with it, all the while not letting the disease taking control over my life.

Because exploring our beautiful planet is incredibly important to me and I'm a very stubborn person, I found ways to travel with my autoimmune disease, while still being careful to not end up with bad symptoms in the middle of the jungle.

Here are my personal tips on how to travel with IBD. 

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What are IBD?

The term 'Inflammatory bowel diseases' - short 'IBD' - designates all the inflammatory diseases linked to the colon and the small intestine.

These are generally chronic and (so far) incurable and are a part of what is referred to as 'autoimmune diseases' due to the immunological response of our bodies causing inflammation.

The origin is a combination of genetics and environmental conditions such as diet, stress and physical activity, resulting in an irregular pattern of flareups and 'remission' episodes.

Among the IBD, the two main types are Crohn's Disease and Ulcerative Colitis, presenting themselves with similar symptoms but affecting different parts of the intestine.

If you'd like to find out more about these diseases before actually continuing to read on how to travel with IBD, you can find detailed information on the website (in English) of my trusted hospital, the UZ-Leuven.

How to travel with IBD: preparation

Research is key

The healthcare system

The first thing I check when I choose a destination is the general healthcare system. To me, that's almost as important as - if not more than - criminality rates.

Sure, the dangers of getting mugged or worse are real (we've been there) but statistically, I'm more at risk to end up having bad symptoms from my disease than anything else.

Whenever I research a destination, I make sure I know where the closest hospital is, the number of doctors nearby and the general level of both hospitals and doctors. Hospital doesn't equal hospital and doctor doesn't equal doctor. The academic standards aren't the same everywhere in the world.

A generally bad healthcare system doesn't prevent me from visiting a certain destination, though. It's just that my travel pharmacy will be packed accordingly and I will have to be a lot more careful.

Water hygiene

This something you absolutely have to check beforehand as access to clean water is crucial, especially when you suffer from an inflammatory bowel disease. Traveller's diarrhoea is frequently caused by unclean water and this could easily provoque a flareup of your disease.

And even 'normal' diarrhoea is dangerous because of the amount of fluids you loose during an episode. So water is essential.

When you can't buy bottled water (in sealed bottles!), there is a possibility to properly boil the water before drinking or using it (see the CDC's recommendations here) and you should always have some water purifying tablets like these for any destination. Even in places where the tap water is considered safe to drink, you never know how your body might react.

Also: avoid ice, both from the machines and in bars, restaurants or cafés. Always ask to get the sealed bottle when you have water and clearly say that you don't want ice in your drink.

Here's an overview of the general situation in the world:

America | The USA, Canada and Greenland are said to have generally safe tap water. In South and Central America it should be avoided. Except for urban area's in Costa Rica. You should still be asking on location whether it's safe or not because it's not the same everywhere.

Africa | Generally unsafe.

Asia | Generally unsafe, except for Singapore, Japan, South Korea, Hong Kong and Brunei. Israel is considered safe while neighbour Jordan is most definitely not.

Europe | When you travel around in Europe, drinking water from the tap is generally pretty safe when you're in the Western or central part of the continent. In Eastern Europe, though, it's more likely not safe to drink, with some exceptions like Slovenia, for example (neighbour Croatia: unsafe).

Oceania | Only Australia and New-Zealand have tap water that is considered safe to drink. Especially on smaller islands like Tonga or Easter Island you should avoid drinking from the tap at all cost. Even on Bora Bora or in French Polynesia in general, there were signs everywhere, warning to drink the water.

The climate

Your destination's climate is also a very important factor to consider when you plan to travel with IBD. If it's similar to what you are used at home, it shouldn't make that big of a difference regarding your symptoms.

If, however, you travel to a hot and moist country for example, things might be a bit harder. The heat sometimes even triggers flareups for people with IBD. But even when that's not the case, your body might experience symptoms like fatigue, increased pain, trouble sleeping, headaches and so on.

Usually, these symptoms tend to disappear after a few days once your body had the time to adjust to these extreme climatic changes, though.

As with all symptoms of any disease: every person is different so you might not feel anything at all. Still, it's good to be prepared: checking out the climatic variations per country and season is a good idea.

How to travel with IBD: your medication

The type of medication

When you suffer from an inflammatory bowel disease you may or may not be currently treated with quite heavy medication.

I myself went through a whole array of drugs before we found something that actually put me in remission.

Read more | Travel and Ulcerative Colitis treatments: my personal experience

The treatment I get now is an interleukin antagonist called 'Stelara' and comes in pre-filled syringes. I give myself a shot every eight weeks.

The big downside of this type of treatment is that the syringes have to be kept cool all the time. You can imagine that travelling with these requires some thoughts and preparation. 

While we just kept them in ice-packs during our Euro road-trip when driving and then in a fridge at the accommodation, carrying them around in hot countries like Costa Rica, Belize, the Dominican Republic or French Polynesia was a different story.

My solution? I bought this mini-fridge developed for diabetics to carry their insulin and it worked perfectly. I managed to keep the jabs at a steady temperature, I could plug it in the car or at the accommodation and I wasn't even bothered at the airport. I have a certificate from my doctor that I am allowed to take the syringes on board but so far, nobody ever requested it.

The timing

Several of the newer drugs used in the fight against IBD are administered at the hospital as an infusion. That's what I had before the Stelara. 

It was a TNF-alpha-blocker called 'Remicade' and it required me to be at the hospital every eight weeks for several hours. 

When we decided to do a year-long trip, that wasn't an option, obviously. And so my doctor at the hospital suggested to try the Stelara instead, see if it would keep me in remission. That way, my presence at a hospital wasn't necessary.

The side-effects

While some of the drugs I tried and tested didn't have any side-effects at all, others had a bunch. These side-effects also need to be factored when you plan to travel with an IBD.

There are pills like Azathioprine that usually get prescribed with IBD before they start exploring the possibility of biologic drugs (like the Remicade and Stelara) that you can get in big packages and just carry around wherever you go. But these specific ones, for example, render you photosensitive.

Given that you probably want to visit sunny countries once in a while, that's something to bear in mind. You will have to protect your skin with clothing and sunscreen with a high protective factor at all times to avoid nasty side-effects like rashes.

I use the 'Anthelios' series from Laroche-Posay: mineral sunscreen with high protective factor (50 or even 60) that is very soft to the skin. They come in all sizes, even as miniature sticks in case you really don't have any space left in your luggage.

Travel vaccinations

If you want to travel with IBD, you will have to consult a specialist to get all of your vaccinations up-to-date. That's something every traveller should do, but especially people with IBD.

Not only are you at risk of developing more severe reactions to diseases pretty much anybody can catch, but said diseases or symptoms can cause a flareup of your IBD as well. You don't want that, don't you?

Together with your specialist, you have to think about which vaccinations to get. You should approximately know your destinations and whether there are compulsory vaccinations like the Yellow fever shot in Peru or Polio.

Then there are recommended shots because of diseases being rampant at certain times of the year and that vary greatly from country to country. 

It also depends on your travelling-style: will you be staying at all-inclusive resorts all day or hike through the dense jungle in Tortuguero or stay at tiny hostels in the Colca Valley with other people?

Then there is the timing: live vaccines aren't recommended when treated with biologic drugs for example. So you would have to schedule these in-between treatments.

For more information specifically on IBD and travel vaccinations, check out below:

Read more | Ulcerative Colitis and travel vaccinations: things to know

Travel insurance with Ulcerative Colitis or any IBD

For healthy travellers, travel insurance usually is a no-brainer. Either they are daredevils anyway and don't take any insurance whatsoever (which is - quite honestly - just plain stupid), or they can just go for one the common package deals most insurance companies offer.

That's not the case for people who want to travel with an IBD.

Chronic diseases are generally not included in this kind of coverage. And I had trouble finding insurances that actually have the option.

I myself have a pretty good private health insurance that doesn't cost very much. I pay a little extra as a 'chronic patient' but it saves me a lot of trouble and money for my expensive medication. They offer travel insurances specifically for people with Ulcerative Colitis and other IBD.

Now I know that I'm very lucky that we have an amazing healthcare-system in Belgium and I definitely don't take this for granted.

Wherever you live, if you want to travel with an IBD, you will have to find something though. The chances that you get a bad reaction or have a flareup can be greatly minimised by following the tips in this article. But that doesn't guarantee anything either.

The travel pharmacy

Regardless of your destination, if you plan to travel with IBD, your travel pharmacy should always be packed accordingly. 

There are some items every IBD-patient should carry at all times - things that healthy people won't even think about because they will most likely never need them.

After getting all your vaccinations in order, it's time to see with your GP and/or your specialist, what else you might need that is only on prescription such as a general antibiotic for example. 

Other than that, check out my travel-pharmacy guide below with mostly prescription-free medication I put together based on my experiences of travelling with IBD. I even added a handy checklist to make sure you cover all the basic needs.

Read more | Travel pharmacy: the essentials for the journey

How to travel with IBD: on destination

The heat

Like I said earlier, it's very important to research the climate and seasons of your planned destination.

Especially regarding sun protection and the heat.

In order to have the best time at your destination - if you happen to choose a hot and sunny one - there are some things you can do to better tolerate the heat:

The food

IBD and diets

Your food habits are intrinsically tied to your disease when battling an IBD. That's no secret.

While there are numerous diets and food recommendations for IBD and autoimmune diseases in general, the truth is that every patient is different. 

Either you just try out every possible diet that's on the market - that's what I did (read below) - or you start journaling and find out for yourself what works well with your gut and what doesn't.

There are tons of reading material on that subject out there (see a selection below) so I won't go into detail.

What is important to know, is that, before you can even begin to travel with IBD, you should already have a very clear picture of what foods you can eat and what triggers a bad reaction. 

That way, you arrive at your destination prepared and you'll know where to pay attention, what to choose on the menu and where to make specific requests to the chef.

Read also | My food odyssey with Ulcerative Colitis

Foreign cuisines

Also, knowing the food-culture of that destination beforehand helps. I already knew before we went to Mexico, that I would have to specifically ask for mildly spiced food every single time. Or in Namibia, where I had to ask the cooks to use less oil than they normally do (Namibian food is very oily).

On my solo-trip through Patagonian nature, I knew I would have to research restaurants before getting into on because they are all about meat. And while I can eat meat, I should can't have a lot of it because my gut just doesn't tolerate it.

Fish, on the other hand, works very well. Even the fatty ones like salmon and tuna. On Easter Island, I had a blast because they love their tuna! 

One of my favourite regions - at least food-wise - is the Mediterranean. That's the kind of diet I'm totally fine with: fresh vegetables, no butter but quality olive-oil instead, lots of fish and light cheeses. Pretty different from what we have at home in Belgium or when visiting Sebi's relatives in Western Austria.

I absolutely enjoy eating my way through Malta, Slovenia, Croatia, Greece and Crete. Add to that the best pasta in Bari when we went to see the Sassi di Matera or the most delicious moussaka in a picturesque little village near the Meteora monasteries and I'm in food-heaven.

A little heavier but still incredibly yummy: Barcelona's food. I might be a little biased here as I lived there for six months. But I just looooove and can't get enough of tapas of all kinds.

Are you drooling? Want more food-stories? Check out below!

Read more | Food in Barcelona: amazing tapas and more

                        Costa Rican food is amazing and here is why

                        Restaurants in Cusco: where to find the best food

                        French Polynesian Cuisine and what to expect

How to travel with IBD - final words

While it seems to be a lot of work to travel with an IBD as it just requires so much more preparation and organisation, I can honestly say that it is absolutely worth your time and struggle.

There is nothing like venturing out, discovering new cultures, mentalities and cuisines, broadening your horizon and getting back with a bag full of incredible pictures and memories.

True, it isn't always easy and in my years of travelling, I did experience a few setbacks. And there were times when I felt like giving up because it just was too complicated.

But I didn't. I pushed through. Getting creative with little tools that help me on the road (n° 1 tip: always - ALWAYS - have toilet paper in your luggage) and a fighter-mindset that really is the foundation of everything.

Not to mention that I have a loving and supportive travel partner with a LOT of patience (being a fighter also means being rather stubborn and unwilling to compromise...) that makes travelling in such hard conditions a lot easier.

I hope this post shows you that there is always a way and that it can inspire you to get out there and accumulate unforgettable experiences, despite everything you're going through.

I feel you and I am here for you if you need help or just a silly quote to give you a boost. IBD-fighters stick together.

Please pin and share this post for others who might need a little push - and to support us in the endless fight against the algorithm.

As ever

xx

Cyn

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