Travelling with Crohn’s – Community Q&A

So, recently I was contacted with a question about whether or not I had ever been travelling whilst having Crohn’s Disease. We’re not talking about a 10 day Holiday to the Balearic Islands, but more like a 10 month trip around Asia. Sadly, I have not done the ‘travelling thanggg’ so rather than give up and be unable to help with any advice, I put the feelers out to you wonderful people, and have managed to get your feedback and create my first Community Q&A post – using your words, your experiences and getting answers from there!

Daina, @daina__h

I was diagnosed with Ulcerative Colitis in November 2010. I was lucky in a way, I got quite sick, quite quickly, dropping 14kg to a pretty unhealthy weight (42kg). I was diagnosed quickly and started medication and responded reasonably well, however I have only been able to actually achieve a proper remission in 2017!
In December 2011 after finishing my undergraduate uni degree I decided to take off for a holiday before facing the real, working world. I was planning to be away for 2 months in total, including a month volunteering in Cambodia, my sisters wedding where I was maid of honour, a good friends birthday and 2 other countries in South East Asia.
Initially I was worried about travelling, especially how I would manage longer flights, where I could access bathrooms and taking lots of medications into South East Asian countries which are known for quite strict drug laws. I was terrified about a miscommunication with my prescription medications leading to trouble, so I got every letter from doctors, pharmacists, specialists I could to support why I needed them! After all that it turned out customs at each country were all very lovely and I had no problems at all. My time in Cambodia was actually fantastic for my health and I managed to regain the weight I had initially lost which I had not been able to do the entire year before!
I have spent shorter periods of travel overseas since. I had a 2 week trip to Bali only a few short weeks after discharge from a 1 week admission in hospital from a flare-up in late 2015. Recently I have travelled to Thailand with a group of 7 for 2 weeks.
My best tips for tavelling during a flare-up or even just a not so great time – take things at your pace! Travelling alone this was really easy to do, travelling in groups brings challenges, but don’t be afraid to do what you need to do – be it later starts, afternoon naps or eating in particular ways. Let the people you are travelling with know what is going on and why you want to do things a certain way and it should be easy to manage, even if it means you just catch up with them later.
In my experience, travel has actually been the best thing for me, some of the periods where I have actually felt the healthiest and gained weight back! There are the awful moments of running through an airport to only find squat toilets available and barely making it in time, but that can happen anywhere – you may as well be somewhere new and exciting that you have wanted to go!

Here are some of my tips for going abroad with Crohn’s:

Research the food, when I first came to Spain I was a vegetarian and followed a low residue diet. While a lot of what I read was information I knew it helped me to feel a little more prepared.

Let these around you know what condition you have. This might not apply if you are there for a short time but for me I was moving for a least a year. Telling some of the friends that I made I had Crohns certainly helped and they have been incredibly supportive ever since.

Bring enough medication. Depending on the length of your trip. I would bring enough for the trip and a little extra. If you trip is for a longer time then bring enough to give you time to settle and see about getting the medication abroad.

If you are staying somewhere for a while then get registered with a doctor ASAP. This was the tip that I should’ve followed better. When I decided to move my crohns was improving, unfortunately this didn’t last. While the Spanish health system has been brilliant, things might have been smoother if I was registered with a specialist before I felt I needed them. I would also have a better understanding of the health system here. If you are going to need to register with a doctor then bring a letter from your current doctor which gives a brief explanation of your current journey. That being said I would advise carrying a doctors note outlining medication with you regardless.

Remember to continue to look after yourself. This one may seem obvious but I found when I first moved I got caught up in some bad habits again, drinking too much and smoking. It doesn’t mean you have to miss out or say no to invites but ensure you keep a good balance.


Sophie, @sophhpos92
I travelled in Jan-March 2017 after only just being diagnosed the Dec before. I had been told (by an IBD nurse) that there was no way I would be able to travel with my Crohn’s in the state it was but I was determined to not allow it to ruin my plans. So I asked the consultant if there was anything he could do and he gave me a huge amount of help. Firstly, he gave me a prescription for some emergency steroids, in case I had a major flare up whilst I was away. He gave me a print out of all of the injections I had ever had in case of need in a foreign hospital, he gave me a letter explaining my diagnosis along with the contact details of the IBD department at my local hospital. Most importantly, he gave me the go ahead to go travelling!
I travelled to some pretty incredible places (Vietnam, Cambodia, New Zealand, Fiji and Hong Kong) and I enjoyed every second, even when I was lying in the back of our camper in NZ resting, in a car park whilst my partner went on a luge for the afternoon!
Having thought about it, I’ve noted a few key tips that I think are important when travelling with Crohn’s:
1) Insurance- it’s worth spending the extra money! I paid quite a lot for my insurance, but it also reduced a lot of the anxieties- I had ‘push doctor’ as part of my policy; a service which allows you to contact a doctor back in the UK 24/7 over an app and although I never used it, having it as a back up reduced my stress which can often be a trigger for my symptoms.
2) Plan ahead- we all like to be spontaneous and I did too, but I also think it’s important to plan your accommodation at least 1/2 days ahead so you know where you’re going to be/ what the facilities are going to be like to support your Crohn’s needs etc. This also goes for what you are taking with you; what I detailed above that my doctor gave me also reduced my stress as any medical attention I gained, would be informed of my situation.
3)Don’t ignore your Crohn’s- Yes, you’re there to have the most incredible time, but you’re not going to enjoy walking round that ancient temple if you feel like you are going to be rushing to an often non-existent toilet. If your Crohn’s is telling you to stop, do it! Find a beach to chill on or a park to relax in or even a local bar to people-watch from. It can be just as enjoyable if you’re comfortable.
It is so possible to have a life-changing adventure with Crohn’s, don’t let the Crohn’s monster beat you!

Kelsey, @kelsheff_

From over a month of travel around ecuador, to moving my life from the United States to Spain, and traveling all over Europe, I’ve done my fair share of traveling around the world. Many people back home tell me how brave/adventurous/scared I must be to travel across the world by myself. Of course traveling is always an adventure, but what no one else can see are all the extra obstacles I have to face when traveling because I have Crohn’s Disease. Traveling is my passion, so I never want to let Crohn’s stand in the way of that, but there are some extra steps that I have to take to be prepared and to take care of myself.

The most important thing when traveling with Crohn’s is to prepare ahead of time. Depending on the medication you take, It can take months to a year to get approval from the insurance company to get a vacation override to get more than a month’s worth of medicine in advance. It’s also important have a conversation your main doctor back home to let them in on your plans. They can be helpful in providing emergency medications beforehand or in case you need any help while abroad. Bring plenty of extra medical supplies for whatever you may need. I usually carry Imodium, emergency steroids, cold/flu meds, and a round of antibiotics for whatever my weakened immune system won’t fight off. A tricky part of traveling with Crohn’s is obviously the lack of access to your normal foods and eating routine. I find it easiest to book Airbnbs instead of hostels or hotels so that I have a kitchen to prepare my own meals (as well as my own private bathroom). And as much as you may want to try that Italian gelato or mysterious Ecuadorian dish, always remember to consider the possible consequences of unknown foods and make smart choices about which international foods are worth eating. (I, personally, am lactose intolerant, so I can usually ask around and find a local vegan place that sells dairy-free versions of traditional local foods and treats!) Lastly, remember to take care of your body while out of your normal routine and comfort zone. It’s easy to get caught up in the lifestyle that other travellers may be living, but just remember that your body needs a little extra love and may not handle that 2nd night out so well, or may need a couple extra hours of sleep at night.

Don’t be afraid to get out there and explore the world! It’s totally possible for us with Crohn’s to be just as adventurous as others, it just takes a bit of extra preparations and precautions!

Traveling with Crohns:
I was diagnosed with IBD in 2015. I was fortunate and caught the symtoms pretty earlier on so I was able to start treatment straight away. I have now been diagnosed with Ulcerative Colitis.
In 2016 I applied to do Camp America that summer, June-September. I was placed in San Francisco, California.
When it got closer to the time I was due to leave I did start to get anxious and worry how I would be while away. Being in a foreign country, different routine, different food. Completely unaware what my new ‘normal’ would be. Not to mention travelling on my own!
While I was out there I managed to stay pretty under control which I was thankful for. I had the typical morning rountine and typically after meals I would be on loo for little while after.
As I was in a camp environment I was always around people. I went out my way to ensure I told the managers and leaders what I had and explained I may disappear at times but I always ensured I made the time and apologised – which can be embarrassing especially when you haven’t blurted it out to the whole of the staff and you can tell they’re often wondering where you’re running off too.
After camp my boyfriend came out to me and we travelled for 3 weeks. San Francisco-Los Angeles-Las Vegas-Grand Canyon. This was the most amazing trip. The good times on this trip definitely outweighed the negatives, I would always encourage to not let our illness stop you.
I went through a horrible flare start of last year and currently still recovering – I had plans to go on trip through Europe but I put them off due to how I was. I was able to go to Paris for my birthday in August, minus the mad rushes to find toilets here and there it was amazing!
I understand everyone’s situation isn’t the same. Travelling can be the most daunting thought.
I would always advise to pack spare underwear, bottoms, wet wipes, black bags and spray!
Also if you can somewhere they don’t speak your first language – learn how to say toilet/restroom!!

Hmmm… where do I start. I was 18 years old when I was first diagnosed with Ulcerative Colitis, the diagnosis later changed to Crohn’s. I have never been in remission. In the early days of my diagnosis i suffered from situational depression. I worked and went to university but that was about it. I let the disease get to me. Then I got accepted to go on a exchange with my university to Israel . I was worried about my Crohn’s but I wasn’t going to let it stop me. I went at 21 for a month. I was living in a dorms and it was a amazing experience. I was able to use medication to get me through the trip. The travel bug was then ignited. The following year I signed up for another month exchange program to Poland. I decided that I was going to go to Europe for 4 months and spend a full month back packing. This was THE BEST experience of my life and I am so glad I did not let fear of the disease stop me. Was it easy? Absolutely not. I had to use some really sketchy bathrooms one particular one I remember just had a hole in the ground with no toilet….  I had alot of accidents…. and even more really close calls. I was embarrassed at times when groups had to wait for me. All of those things were more than worth the memories and experience I was able to encounter.
Some tips of traveling with Crohns:
Flights:
Always, I repeat ALWAYS get an isle seat on the plane. The altitude of the plane will upset your belly and you will more than likley have to go more than once and you dont want to be stuck.
Do not drink anything other than water on the flight (especially not tomato juice or coffee)
Stick with a meal that you know you are ok with
Bring some snacks that you know you are ok with and are not heavy on your belly
Buy a bottle of water in a convience store before boarding the plane. You need to stay well hydrated, plus its easier to have your own water to take medication instead of dealing with the tiny cups
Take a anti nausea medication when you board, this will help you sleep but also keep your stomach at ease.
Keep an eye on the flight schedule, when you know you are getting close to your destination go to the bathroom, even if you don’t have to. As the plane starts to descend and the altitude changes your stomach will tell you and you will most likely have to go, if you don’t go before the seat belt sign is on this might mean a mad dash to the bathroom baggage area and those are usually pretty far from where you get off the plane
(You can always ask one of the flight attendants to let you know before the plane starts descending and that you have health issues they are very helpful)
General travel:
Always wear a disposable pad or regular pad pulled further back (I recommend treehugger cloth pads). This way if you have a little accident or you cant make if you have something protecting you from it getting all over you and seeping through your pants. These pads have saved me thousands of times.
Have a extra pair of undies with you at all time
Carry a small package of wet wipes and Kleenex with you. Alot of bathrooms you will come across may not have toilet paper.
If you have problems with leaking and rashes from your bum, it can be useful to rip a piece of Kleenex in half and place it in between your bum cheeks when going for long excursions or walks. Change it every time you go to the bathroom.
Make everyone around you aware of your Crohns. It may be awkward, but its better they know and can help you look for a bathroom in a emergency then be annoyed with you.
Know what foods sit ok with you and stick to those, especially on days you will be away from a bathroom.
Keep a snack with you at all times as well. Sometimes you may get stuck in a situation where you will not have food for awhile and you don’t want to go to long so your stomach starts hurting
Keep hydrated, keep water with you alwaysMost important HAVE FUN. Be careful and Listen to your body.

SHIT HAPPENS… don’t let that stop you from experiencing life.

Now I will leave you with one of the most embarrassing stories of this summer, to let you know that no matter what happens you can get over it, move on and have a amazing trip.

We were on a 4 day sailing excursion in Greece with the top deck trip I was taking around Europe. We were docked at a beautiful island and we had a amazing night drinking at a bar right at the boat dock. It was like a club. There were at least 8 or 9 boats with our tour, each boat had 5-6 people on it. Our boat consisted of my best friend, me and 3 other guys that we had never met before. Because we were the older girls on the trip and one boated needed to be mixed genders because we had uneven numbers of girls and guys. Anyways they guys where awesome but I was embarrassed and didn’t share that i had Crohns (which in hindsight I defiantly should have). Everything was going fine until this night. There was a tiny bathroom in our tiny sail boat that was in between where we slept and the guys slept. (which was also the kitchen area). This was a really small boat, so it was very squishy.
Anyways back to the night at the club. We had a fantastic time, drank way to much and didn’t head home till around 5am. We got to the boat and went to sleep. Well I am not sure what happened, I am sure it had something to do with how drunk I was but I had a full poop in my TINY bed at the end of the boat!!! I woke up and panicked and dragged the mattress all the way out of the boat up to the top, over onto the dock and to the showers… which was at least a 5-10 min walk… Luckily this was maybe 530-6am and everyone was still asleep. I was still drunk and decided that I was going to spray it in the shower and use shampoo to get it off. Luckily I was able to get most of it off and drag the sopping wet mattress back to the boat. At this time the guys where awake and the smell on the boat was DISGUSTING… my best friend covered for me and told them I had thrown up and they used some spray. We tried to dry the mattress of on the top of the boat but it was a disaster. I was mortified that I pooped the bed, but guess what????? What doesn’t kill you makes you stronger!!!  I don’t even remember those guys names and I definitely haven’t spoke to them since, plus I have a hilarious story to share with you all!!

Follow your dreams. Push yourself.
You are going to be in the bathroom no matter where you are, so it might as well be somewhere beautiful!
Keep your head up and do what you love!!


Jess, @jesshalee

Carry all medications with you in your hand luggage incase your suitcase goes missing and have a letter from your doctor with the list of your medications you are on so that you won’t have trouble if customs in any country questions your medications.

Travel insurance!!!!!!!
When flying request an aisle seat if you can near the toilet for easy access
Make sure the people you’re travelling with know your disease and also understanding how to ask for the toilet in the language of the place you’re going
(Just got back from a 4 week holiday in Europe so had all of this down beforehand!)

I travelled for 9 months last year – I don’t have Crohn’s Disease but I’m on and off tube-fed and rely mostly on Ensure. It’s a real challenge getting medication to follow you everywhere (especially getting 70 bottles of Ensure to Thailand)! It can be done, you’ve just got to know your limits and just stay really wary of certain foods. I basically stuck to the same 4 foods from the 7/11 in Asia.
I lived in Australia too, which worked as they have a free Medical Care system and I could find food and go to the doctors etc easily. Don’t let it stop you from travelling!

Georgie, @georgie2196
I have been in Australia for a year now! Here are my top tips for travelling with IBD:
– Research your destination’s healthcare situation. Is there entitlements to free healthcare? What is the standard of healthcare like etc? (This is more for long term trips such as working and living).
– Make sure you have enough medication! This is a big one; you don’t want to be left short when you’re feeling low. So ensure you have meds for your whole trip.
– Carry a brief copy of your medical history, just in case you run into trouble and need treatment.
– Get suitable insurance!
– Carry a doctor’s note of a script in your hand luggage with any medication you have. Especially for airport security, incase they question any tablets etc.
– Think about anything that might trigger symptoms, e.g. Diet. I always eat ‘safe foods’ whilst on holiday, for me that means no spice or grease, etc.
– Remember that people with healthy guts get weird tummy’s on holiday due to heat/food/bacteria! So don’t immediately freak out because that’ll cause unwanted stress. Just be mindful. Ultimately, no one knows your body better than you.
– Try to take the holiday mindset back into your daily life when you get home.
Travelling is ‘da bomb’! Anyone who has travelled will tell you that. I’m not sure when I will be home, but as along as I can keep having fun, embarrassing myself in exotic places, I will.

I’ve been diagnosed with Crohn’s for over 2 years after previously having a colostomy bag for a year and then being lucky enough to have it reversed but undergoing a total colectomy in this surgery also.I have been working as cabin crew for nearly 12 years so have gone through this whole process whilst flying (even worked whilst having the bag)I fly worldwide so have encountered a lot of situations!!

Top tips I can offer for those with a colostomy bag:
1-Pack in your cabin bag enough bags to last the whole trip in case of lost bags and also pack in your hold case just in case you need extras with diet changes
2-I felt happy enough to wear a bathing suit when I had my bag just make sure you stick it firmly and make sure your skin is fully dry before heading out to swim and catch some rays,I’m lucky enough to head somewhere hot most weeks and can say I never experienced the bag slipping off whilst going in and out of pool
3-I always packed jelly babies and marshmallows to thicken my stool if I was effected by any food problems (same for those experiencing diarrhoea)

Useful information for on flight:

For us Crohnies that nervous feeling when crew are doing demo and securing your seats unfortunately due to safety take off and landing is the time we can’t make any exceptions of letting people run to bathroom☹️for myself after my reversal and during different stages of my diagnosis I had the same worry as us crew are restricted to seats, I found wearing an adult diaper gives you that comfort of if you do need to go there’s a safety net which you can remove and dispose of after the take off

Avoid fizzy drinks!!!!bloating can be a buggar and with the aircraft pressure you will feel it ten times over same with alcohol drinking on the air is a total different scenario to drinking on ground !!!

Sit near a toilet where possible and take aisle seats so again you’re not “trapped” and if crew are out doing food/drinks they will move so don’t be scared to ask!!

You can book special meals on longhaul flights so always check with your airline if you do require a special diet.

After 12 years of flying the jet lag is still horrific!!on top of having crohns it can wipe you out but I’ve found using Emergen-C(available from most pharmacies)really helps it’s basically a vitamin C drink so when you’re lethargic I’ve found this an amazing option not just for travelling but for daily life also.

If you’re taking any medications with you make sure you have prescriptions with you I inject Humira and always keep my prescription in my cabin bag in case I’m challenged as you’re aware some countries forbid certain drugs (tramadol for example)so get that cover let from your drs if you’re concerned.

And finally…I’m living proof that travelling with Crohn’s is achievable always prepare for the worst packing enough medications etc and also usual travel tips as don’t drink water and pick food choices wisely!!


When I was diagnosed with Crohn’s disease in June 2016, my initial worry was not about how it would affect me for the rest of my life. I had booked a one way ticket to Bangkok leaving at the end of August that year and was determined to go. I finished my stint of prednisolone the week before leaving, and my consultant had ok’d my trip providing I was “sensible”. However, she did think that my trip was going to last about a month.
          Arriving in Bangkok was so exciting after working and being unwell all summer. However, my first bout of food poisoning found me not even 48 hours after landing, which was pretty bad going. The only redeeming factor being that I wasn’t the only one elbowing people out of the way for the toilets, as my friend Rowan was definitely green around the gills too.
We had arranged to spend the first couple of nights in Bangkok in a nice hotel to get over the jet lag. In hindsight it was a good way to combat the fatigue of flying and allow your body to get used to the cooking in south east Asia (in private). We spent the first month travelling around Thailand , and I felt completely symptom free. Spending so long in the sunshine and eating fresh food definitely helped and but I was worried that at one point I was going to eat the wrong thing and that would be me hospitalised abroad. When going to markets and eating street food I tried to stick to stalls you could see a queue at, or you could watch be made in front of you. If all else failed stick to the veggie option.
            From Thailand I went to Myanmar which definitely put my bowels to the test, and it was here that I had my second round of food poisoning. Myanmar is one of the most beautiful and untouched countries I’ve been to, with so much to offer. The cuisine is a mix of curries and veggies which served me pretty well again sticking to my rules. Halfway through my time in the country we decided to do a trek from Kalaw to Inle lake. We had a local guide and slept in homestays at night. It was amazing. I count it in the best things I have experienced, but by the end of the 3 days I felt a pang for some comfort food, and we found a western restaurant in Inle lake. I had pizza for dinner and it wasn’t long until the familiar rumbles began. I was up all night and the vomiting and diarrhoea continued for 4 days. A good thing about travelling is the people you meet. Even strangers at the breakfast table were giving me tips on how to soothe my belly, toilet talk is accepted if not welcomed in hostels! I soon felt better and moved on to a small town, where I contacted the local doctor as I still was absolutely exhausted from my sickness. The doctor checked me over and found no problems. I was a little bit sceptical but knew that if any problems persisted Bangkok was only a short while away and had a great medical reputation.
           We flew from Myanmar to Cambodia, and by sticking to my maxims with the addition of NO WESTERN FOOD, and I found no problems either there or Vietnam food wise, and the food in Vietnam was exactly what I was looking for! Dishes changed in the direction we travelled in (south to north) but it soon became part of our itinerary to find out what each new town has to offer. It is worth noting that it is fairly easy to find dairy and gluten free options anywhere in Asia, as most dishes are naturally. It was easy to take things at my own pace and generally was asymptomatic for the rest of my time in Asia, which included Kuala Lumpur and Singapore. Singapore’s street food is amazing, and is so heavily inspected by the government it is of a really high standard hygiene wise.
              I had packed 4 months worth of tablets with me, at this point I was on omprazole and melasazanine daily. I had no problems taking medication in and out of anywhere and it was kept in a compartment of my backpack. Another tip is to really pack lightly. Trekking about with a 20kg backpack is really not what you want when the fatigue hits.
              My final destination was Sydney, where I lived for 9 months. The UK and Australia have a reciprocal health agreement meaning that we receive Medicare (their NHS equivalent) for free (kind of). I was able to sign up with a GP and have my prescription renewed. I was even going to have an MRI, but returned home to pursue my nursing career. My most recent results show some improvement to the Crohn’s in my terminal ileum. I honestly do put that down to diet, which I have amended since my trip. Travelling gave me a sense of care free that I hadn’t felt in a long time while studying and living undiagnosed, and I can’t wait to plan my next trip!

Char, @charkeefe  
  • First and foremost, don’t go ahead with a trip unless you are in remission and your doctor gives you the green light confidently. You might think you can handle a few weeks away with a bit of tummy trouble; but when you find yourself somewhere like Bali, where the infamous ‘bali belly’ strikes even the most seasoned traveller with a stomach of steel, adding bowel disease into that mix is scary stuff.
  • Buy a flexible ticket. If you book through an agent like STA Travel, they offer ‘flexi-tickets’, giving you the ability to change a flight at a fraction of the cost of a new flight.  Following the advise of my gastroenterologist, I paid the extra money and changed my return ticket to allow for one date change, so that I could fly home early to seek treatment if need be. This meant that when I inevitably had to, my flight change cost me £100 instead of a £900 new flight home from Australia.
  • Make sure you have comprehensive health insurance that is aware of your medical history and condition.  If you then need to take a trip to the doctors or hospital, you should be covered to claim back any costs.

 

  • If you’re going to be spending a good amount of time in one place, it’s good to know whether they have health service agreements with the country you live in. When I had to receive emergency care and spend four days in hospital in Perth, Australia, I didn’t have to pay a penny. This is because the UK and Australia have a reciprocal health agreement, where if you need emergency care, you won’t be denied or charged.
  • Make sure you have enough meds and food/vitamin supplements before you go! It’s good to buy a pill box to keep on track of what you need to take because if you’re like me and being on your holidays makes you forget what day of the week it is, it’s super helpful to keep track.
  • If you’re travelling to places like South East Asia/Indonesia/India, it’s a good idea to make sure you’re stocked up on extra medicine too. Things like rehydration and electrolyte meds and activated charcoal tablets are essentials to combat traveller’s diarrhea.
  •   If you’re like me and can’t eat all the fun stuff any more like gluten and dairy, make sure you let your airline know your meal preferences before you fly and stock up on some tummy friendly snacks in your hand luggage. Peppermint/ginger tea bags are a good idea too, because you’re unlikely to find them at 30,000 feet!
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A massive thank you to all of the above contributors!

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