Travelling with Crohn's Disease

on: October 4, 2018

5 things I do when travelling during a flare-up.

Living in pain had become so normal once I had my first Crohn’s flare. The constant cramps, nausea, diarrhoea and chronic fatigue really made my life hard. From the moment I become ill until after my first surgery I had many times where I thought I was well but really I had just adapted to this painful lifestyle. It's just something I had got used to. In the 10 months from first becoming ill until I had my life changing surgery, no 2 days were the same. The symptoms were the same, they just gained in intensity but how my body reacted, how I mentally reacted and the day's activities, they all varied. It's a roller coaster living with a chronic illness and you don't know what's around each corner.

Because I am someone who doesn't let my illness control my life I still went about life as per normal even if it took every bit of energy I had left. This is probably one of the factors that landed me in hospital. 

I love to travel!

Disney ears - Paris

In January this year, I had an incredible dance trip booked to America and I was not letting my disease stop me. I was filled with a lot of anxiety. How would my body react to flying? What would I be able to eat?  Would I want to eat? will my body let me dance? What if I was so exhausted and sick I spent the whole 2 weeks in bed? What a waste of money that would have been? As I said no 2 days looked the same so the prospect of 2 weeks away was actually extremely daunting.

The trip was a complete success! I had one morning where I had to miss activities in order to have a rest. But I actually came back from the trip feeling better than when I left. I am not sure why this was the case and it was probably a fluke.

So how did I do it?

This blog is not a guide to the best way to travel during a Crohn’s flare-up. I am so new to this that I am far from being qualified to give definitive advice on such a topic. However, this blog is a list of a few things I did in order to help me make it through. They are tips I heard from others or I worked out for myself. These worked for me and I hope they might be able to give you some ideas for your next trip away.

Here are my 5 tips to travelling during a Crohn's flare.

1. Ask for an aisle seat.

Long flight or short flight this tip is the best one I can give. A month and a half before my diagnosis I was all booked in for a trip to the States. I had been sick for 4 months before my diagnosis but I was adamant that I was still going to make it on the trip. We had been planning it for 2 years. Two weeks of dancing at some of the most amazing dance schools in L.A and New York. How could I miss it! As the trip got closer, I got extremely anxious. I couldn’t go half an hour without running for the bathroom, how was I going to go on a 14-hour flight or even a 3-hour flight. I was desperate. How was I going to survive a long haul flight?

About 2 weeks out from the trip I read the best piece of advice, EVER!

Ask for an aisle seat.

WOW! Bingo! This was life-changing. I wouldn’t have to climb over people, I can get up and down with ease, and I can stretch my legs in the aisle if I needed to. My anxiety faded with this revelation and it was completely gone when the travel agent made it happen for all of my flights. One thing I have had to learn with having Crohn’s is speaking up for myself. This sounds so small but it is the small things like changing seats that can make your life so much easier.

It is worth learning to speak up!

Aisle seat on aeroplane

I was lucky enough to have no physical symptoms during my long flights (There were 2 flights to get to L.A). But knowing for a fact that I was in a good position just in case was so good. My piece of mind was worth it. Throughout the entire 2 week trip we took a total of 6 flights and I had no anxiety throughout any of the flights because I had an aisle seat. 

If you are having a flare up and you need to travel. Don’t fear, ask for an aisle seat. This won’t fix everything but it will help with knowing you have easy access to the bathroom if you need to use it in a hurry. Be brave! If you tell the airline you have Crohn’s disease they will more often than not try and make this request work.

2. Research the food available at your destination.

I think this is a tip for everyone regardless if you have a chronic illness or not. We all get used to the types of food available to us at home and often when we travel the products we love are not available at our new destination. So when you head to another country what are you meant to eat? I was new to Crohn’s and my flare up had already taken some food away from me, like coconut, broccoli, cauliflower and nuts. I was also trialling going gluten free and dairy free as much as I could, so what was there left to eat? I knew on the trip breakfast and dinners would be easy but what about snacks and lunches while we were dancing? A lot of healthy snacks use nuts and coconut. I was really puzzled about what I would survive on. This caused me to become very anxious.

I got in touch with Kristen Boehmer who is a blogger from America that I follow and admire. Kristen has Crohn’s disease as well and talks a lot about food. She gave me links to all of the types of snacks she eats and some places that she enjoyed to go to eat. This was a great stepping stone into learning about the types of food I could eat in America. From there I was able to google other products like the ones she had sent through and then find things that I would be able to eat. Armed with this advice my anxiety about food diminished. Anxiety is so common with Crohn’s sufferers as there is so much that is unknown. I am learning to trust myself and not get stressed or anxious about new situations. For me, researching helps.

For me, fruit is my go-to snack. I can tolerate most fruits (just not apples) and this means that there is always something I can eat. I eat a lot of fruit when I travel as its easy and knowing this alleviates some of the anxiety. There are times when I won’t eat the fruit. When I was in Bali a while back, I wouldn’t eat anything uncooked from street vendors. I always feel bad for this but it is not worth getting sick while you are on holiday. Even if I am eating in the hotels, I will investigate the fruit first before I eat it. Anyone else this fussy as well?

Eating out is another kettle of fish. Kristen suggested using the Yelp app. This was great advice. I was able to type in the type of food I was looking for and many options popped up. This is a great option when you don’t know about any of the restaurants around you.

Food Collage Yum

I am also someone who believes in trying the local cuisine. So I have to admit, when I was in New York I had a hotdog from a street vendor and I also tried NY style Pizza (as you can see above). It was worth it! I loved both! I don’t eat as strictly as many other people with Chronic Illnesses do. I eat 90% gluten and dairy free but I let myself have some of these things on special occasions or once a week. But try for no more than twice a week. When I am on holiday I am a lot more relaxed with this as I hate missing out on trying new things. But I am always evolving with my eating as I do more research so this may change by the next time I travel.

Do you have any tips on eating while you are on holiday? Leave them in the comments below. I would love to hear about them!

3. Take more medication than you need.

Taking regular medication is a new thing for me. Before my Crohn’s diagnosis, I hadn’t ever taken regular medication. I was fit, healthy and never needed it. However, with the diagnosis came a whole lot of medication that needs to be taken multiple times a day and so I knew I would have to be organised.

I always put half in my carry on, clearly labelled and I ensure it is in the correct packaging. This means if you get stopped and questioned at security then it should all be legitimate. Having more than needed on me at all times also means that if my luggage goes missing or we get stranded at an airport during a layover for longer than expected, then I can continue taking my meds at the correct time. Which we all know is an essential part of getting the full effects of our meds and staying in good health.

Health medication

Whilst travelling, I try and keep the times I am meant to take the medication as close to when I would normally take it as possible. This is hard when you are crossing many different time zones or taking multiple flights. But one thing I have tried in the past is to work out the times at my final destination and then take the medication to sync in with that time zone. I work out when on the flights I need to take it. This doesn’t work well if you need to take it in the middle of the night and you are sleeping. Try a way that works for you!

I then have the other half in my checked in luggage. Again I have more than needed just in case. What if there is bad weather and the airport shuts down? What if you or someone you are with injuries themselves and your travel plans need to change? What if you are loving your holiday so much, you choose to extend it? You need to be prepared.

Take extra medication with you in your carry on and checked luggage.

4. Stay hydrated.

I know I have written about this in previous blogs but it’s because it is just so important for someone with Crohn’s to stay hydrated. We spend a lot of our time in the bathroom so we need to replace what is coming out. Every time I have ended up in hospital I have had a lecture about my liquid intake. I have always been someone who drinks a lot of water and very conscious of how much water I consume. However, when I am in a flare up and feeling nauseous the last thing I want is water.

It’s a vicious cycle.

The sicker I feel and the more I should be drinking water, the less I want it. So when at home I try and consume around 2 litres of liquid a day. This includes water, tea/coffee, juice and smoothies. I try the best I can to stick to this while I am travelling as well.

On the plane, I take a drink bottle full of water. I will always finish this and more often than not the air hostesses will refill it for me or some planes have a help yourself tap somewhere (normally around the toilets woohoo!). I then try and have a drink each time the drinks service comes around. I don’t often drink fizzy drinks or juice but if I don’t feel like a cup of tea or coffee I will have one. I always have a drink with meals on flights. So needless to say I stay super hydrated and I then appreciate my aisle seat even more.

Hydration needed

Once I am at my destination I buy all of my water. I am lucky enough to come from Christchurch where we don’t add anything into our water so it has an amazing clean taste (except recently some water stations have been adding chlorine into their water, nooooooooooo). I am ruined for life with how lucky I am so it means when I travel I buy all of my water because I can’t stand the taste of it anywhere else. I buy a 1-litre bottle which I carry around with me and then I buy bigger bottles to keep at my accommodation to refill the 1 litre one. This saves money as the smaller the bottle, the bigger the cost. I then take up every opportunity to refill during the day. If there is a water filter anywhere then I top up my water. At the end of the day, I always know if I haven’t had enough liquid and then it is even harder playing catch up. Now being an ostomate as well, I have to be so careful so I carry electrolytes on me to help if I do get dehydrated. These are great when you are walking a lot or in my case on my trip to America, Dancing.

Hydration is so important regardless if you have a chronic illness or not, so I hope these tips are useful for your next trip.

5. Remember to rest.

I am like a kid at a candy shop when I get to a new destination. I like to land and go straight to exploring. The first thing I always do is go for a walk and suss out the lay of the land. This gives me the best opportunity to orientate myself and find out what the accommodations surroundings are like. 

Central park bridge

This has only backfired once. When we were in Bali 5 years ago, I did my normal land and then wander. However, our travel agent had forgotten to inform us that our hotel was not in a tourist area and once off the main road we were in a normal neighbourhood. I really learnt about what poverty was that day and I felt terrible for all the children we passed who had hardly any clothing on, no shoes and lived in tiny ‘houses’. We knew we didn’t belong there when the residents started lining the streets and watched us walk along. We quickly turned around and made our way back to the hotel.

When I travel, I want to do everything, see everything and experience everything.

So how does that work when you have a chronic illness? Planning! I have found planning the itinerary helps. This way I can plan activities and add in rest times around them. Otherwise, I will keep going so I don’t miss out on anything. Remember to stop and take some time out to rest is something I am not great at but I am definitely working on it. On our latest trip to Sydney (the week before I ended up in hospital, so I was very ill) we did all of our exploring in the morning, then would go back to the hotel for a nap in the afternoon and then we could go out and do things at night time. This was fabulous as it meant I got the best of both. I got to see a good chunk of Sydney and I got to rest. This is so important.

You can’t always plan for everything. I get that. But I think planning for rest means I am more open to negotiation if I need to rest at different times. I can change up the plan and not feel like I am missing out on things. For example, on the dance trip to America, we were dancing every day at IDA. I at this point knew I couldn’t do a lot. So instead of doing the 4 classes a day, I would just do 1 to start and see how I went. The very first day came around and I did one class. It was amazing! It was a hip hop class with Matt Tayao. We had a great time and worked really hard. I knew that the one class was my limit and I watched the last 3 classes. It was hard to sit and watch but I still learnt a lot. However, the next day I woke up and I felt terrible. My body was beyond exhausted, my stomach was upset and my cramps were at an all-time high. So I lay in bed while the other girls went to class. I let myself rest more than I had planned because I knew if I had pushed it, I would feel worse for longer and potentially ruin my trip. I took the morning to rest and made it in time to watch a class with Michelle Soulchild. YESSSSSS! Great choice on my behalf. Taking the time to rest then meant I could do other things throughout the trip. We danced at IDA in L.A and then in New York we danced at Broadway Dance Centre, Steps on Broadway, Alvin Ailey (my favourite) and the others also did a workshop with the Rockettes. It was a fabulous trip organised by She Shines on Dance tours. They were amazing with me as well. They totally understood that I needed to rest and that support made a huge difference to my trip as well.

 

Rest when you can and when your body needs it. This is something I am still learning but it does make a huge difference.

And Finally:

There are so many different things you can do when travelling with a chronic illness to make it easier and less stressful for yourself. These are just 5 things that made a huge difference to my travels. You may find they work for you or you may have other ones that work better. If you have any other tips feel free to leave them below. I would love to have your input and tips to make travel even better.

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