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
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.
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.
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!
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 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!!
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)
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.
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!!
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.
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!
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!!
- 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!
