Long Haul Travel Tips

I recently got back from a trip to South Korea. Being on the road from 3am on Wednesday and finally getting to my hotel at 3pm on Thursday was intense to say the least (allow for 8hr time difference). Over 24hrs of travelling, plus jet lag will have people saying you look tired - so here's what I do to help myself.

My number one holy grail piece of advice is - get airport assistance. Ideally get in touch with your airline 48hrs before your flight but if you're reading this while on your way to the airport, you can request the assistance you need at the check in counter. Some airport have more... assistance on hand than others (In Seoul I had to wait 1hr for my assistance to arrive). The sunflower lanyard is univerally recognised, at least in airports, as a way to indentify people with disabilities (if you don't have one - get one from the assistance desk, you can reuse it every time you fly)

The assistance I get in airports is the same:

Access to priority lanes through security.

Access to priority lanes in customs and immigration.

Someone to walk with me through the airport (I like this for long trips mainly. Having someone to help navigate security while carrying medications is a massive mental load off)

An aisle seat on the flight

Access to preboarding

A cart to get around - which was very useful on my return to Heathrow

I did get offered a wheelchair at every airport. I only accepted in Amsterdam after we got to the gate and the person accompanying me was informed we'd have to walk to the other side of the airport for precheck. I was able to board the flight early but at what cost. I could feel people staring at me, wondering why I was in a chair because of the invisible part of my illnessess. The person pushing the chair, super sweet and kind though.

I should add here preboarding is the best thing and worth a few awkward stares. I was able to get to my seat before other passengers and sort out what I needed during the flight. Eye mask, face mask, headphones, compression socks, nutritional drinks. It's also an ideal time to a chat with the air stewards if I need store meds and check my access to toilets.

I've done long hauls trips many time and they are usually a cake walk, when I'm not flaring. But I am in a flare right now. And I haven't been to Korea in 6 years.

I did get the go-ahead from my doctors before I booked the flight and made sure I got travel insurance that same day. Shop around;  there are many insurance companies that cover pre-existing conditions but you do pay a premium. I paid around £65 for 10 days. I got mine through my car insurance comapany as they had an offer for adding additonal policies. Getting insurance is an added layer of protection if for any reason you fall ill or need to leave your holiday early. Booking it asap, gives coverage from the day you purchase the insurance to when you return from your holiday.

My final tip of course is bring food and snacks. I had breakfast with me because I'd driven to the airport before dawn. I had a 1hr flight to Paris and a 2hr layover, so food wouldn't be served until well after 10am. I wasn't prepared to navigate French duty free for anything more complex than water as I am on a restricted diet. I panic bought rice cakes and made too many rice flour rotis just in case the day before, which came in handy around lunch time.

Remember to carry a water bottle and stay hydrated.

My long haul essentials

Assistance

Insurance

Food

Compression socks

Face mask

Water Bottle

Sunflower Lanyard

10 things that make a Crohnie Happy

1. Soft Toilet Paper - Asda Shade is my number 1 choice. I have tried all kinds of “soft” toilet paper. Nothing has yet to change my mind about Asda Shades. Catch me in hospital carrying around my own roll because I refuse to use the hospital sandpaper.

2. Bidet - Nothing feels better than feeling squeaky clean. My first visit to Japan ruined me, and since then I have been waiting for the day I could design my own bathroom with a Bidet toilet. Since that day is not going to be soon, I use a travel bidet. Add some epsom salts for those extra sensitive days. I own a HappyPoo travel bidet which has saved my butt when soft TP has not been available.

3. Free toilets - Nothing worse than searching for the loo and discovering you’ll have to pay 20p. London does have free toilets but once in a while the urgency takes hold and the nearest toilets you can find cost money but you now have to find your card in the bottom of your bag.

4. Fluffy socks - Something warm and comfy. Socks are a big must and the first item to enter my hospital bag. Scan rooms are cold and if my feet get cold I feel cannot get comfortable.

5. Satin Pyjama Bottoms - I exist exclusively in hospital gowns when I am admitted but I do wear satin trousers to keep cool and feel a little more covered.

6. Moisturiser - La Roche Posay Cicaplast has saved my skin from hospital air. Though it gives me a ghostly look. My daily moisturiser is the Nurtic Intense by the same brand. My Skin feels plump and well cared for.

7. Headphones - When the ward headphones stop working being able to pull out your own wired headphones has meant I can watch Bargain Hunt without relying solely on the subtitles.

8. Toilet spray - V.I.Poo‘s Royal Flush is my go to pick. It’s clean, fresh, and covers some of the most nuclear of bowel movements. There are many on the market for pre and post flushing. Feel a little less self conscious when I experience urgency at Westfields.

9. Allergens Menu or an Allergens key - my number 3 pet peeve is having to read an allergens list. By the time I work out what I can eat, the table has received their own food. I always enjoy a restaurant that makes an effort to make ordering easier.

10. Short wait times - Nothing makes me happier than a hospital visit that is under 3 hours. Before I was diagnosed with Crohn's disease I would spend whole days sat in waiting rooms as other patients were seen before me even when I arrived first. These days I can be in and out of hospital within 3 hours but I never forget those long days.

    
    
    

A Crohnie in Copenhagen - Story Time

 A siblings weekend jaunt to mainland Europe became a battle between me and Murphy’s Law. A weekend to rival the plot of Lemony Snicket’s A Series of Unfortunate Events. Younger brother and all

My train to the airport was delayed by 1 hour. The straw to my entire travel plans camel back. Airport, Food, Security, Toilet, Water, Plane.

I was already feeling tense from travelling for the first time since COVID and my anxiety was doing a number on my insides. Once on the train I realised that I had forgotten to eat my lunch earlier. With so many food restrictions I knew chances of finding food past security that I could eat would be slim to non-existent.

Upon arrival at the airport, the security line was barely moving and our flight was “on time”. We skipped looking around at resturants before secuirity and joined the queue. Once passed security all the restaurants that catered to my dietary restrictions started closing. Murphy 3: J 0 and starving.

After an hour in the queue for Whetherspoons and after some gluten containing chicken wings it’s apt that this does remain bad. My travel anxiety and the wings started translating to nervous bowel energy. And the 5 minute bathroom break almost led to us missing our flight #crohnielife.

Exploring Copenhagen was less dramatic. A stark contrast to the apparent battle to get in and get out of the city. There’s an array of gluten free and vegan restaurants round the city. And if you can ride a bike it’s fairly affordable to explore.

You’d expect that the journey back could not be as dramatic as the journey there but somehow it took 3 trains to get 1 stop. A 18 minute journey became a 1 and a half hour quest to get to the airport.

At Central Station the train on our ticket kept getting pushed back with seemingly no end in sight, so we opted to just catch the next train that arrived. The next train made it 100m out of the station and broke down. They attempted for 40 minutes to get the train moving till they eventually gave up and we headed back to Central Station. 2 trains, 1 hour, 0 progress, 100 % stressed.

With our flight departing in 2 hrs we started looking at our options. Taxis: Way too expensive, the traffic was unpredictable and the jouney would be way too tight, also how would we get our money back for these train tickets. Bike: riding for 1 hour was out of the question.

Then the third train arrived.

We made it to airport with our flight leaving in 1 hr, and a 30 minute security line ahead of us. Leaving us just enough time to pick up a souvenir fridge magnet and run for our gate.

Lesson learned: never trust transport to the airport to be on time. 

3 Sites for a Crohn's Expat in Beijing

 Crohn's disease in Chinese is 克罗恩病 Kè luó ēn bìng.

In 2018 I packed my bags and moved to Beijing. It was an easy choice for the trip of a lifetime, but it was so hard to find any information about what life was like for a Crohn's Expat. I spent 3 months before departure researching: local hospitals, IBD doctors, medications, and insurance and trying to find out any information about life as a Crohn's patient in China.

Here are some useful sites I found to help you start planning your travels:

*The Beijinger - a Beijing Directory and news source

https://www.thebeijinger.com/

• I found addresses for local hospitals - some places listed fees and included reviews

• It's not always up-to-date and you occasionally have to try a few variations of search terms to find where you are looking for but this was the best directory available.

Crohn's and Colitis UK - for insurance information

https://www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/insurance-ibd

• Health Insurance - I could not find an affordable provider who covered my Crohn's as it came under pre-existing conditions.

• I opted for Travel Insurance - I was covered to fly back home or receive emergency medical treatment if I went to hospital. I did end up flying back home a couple times.

IBDPassport - for IBD hospitals around the world

https://www.ibdpassport.com/

• I was able to find hospitals in my area of Beijing with an IBD doctor

• Some hospitals also listed medications they had available (my biggest concern) like Azathioprine.

While this list is by no means exhaustive, these sites were a great starting point for planning. My two years were challenging and fun, and no two hospital visits were ever the same. Having these as a reference point before departure made travelling a lot easier for me.

If you know of any other websites let me know in the comments.

~J

Flights, Crohn's, Medication

 Having Crohn's often means taking medication at specific times. Travelling with temperature controlled medication is always a challenge. I currently take Humira and as someone who loves travelling I have had to figure out how to take my medication with me on my trips.

Here are some tips I have learnt for carrying my Crohn's medication with me.

Flights

1. Ice ice baby and an insulated cooler bag - I have reusable gel ones. they are malleable enough that my meds can fit right in too, and no potential of accidental leaks

2. Ask your flight attendant - On some of my longer hauls, attendants kindly keep my cool bag in a cool storage place. On my shorter flights they provide some ice.

3. In case of emergencies, snap and freeze - The bit after flights but before the hotel can be unpredictable *flashback to the 2hr immigration line in Malaysia*. Having a some emergency snap and freeze packs on hand is a lifesaver and will help keep meds cool if queues take longer than expected *Side eyes my trip to Malaysia, seriously 2 hours in passport control*

Hostel, Hotels, Accommodation

1. Putting it in the fridge - Add a label if its a common area fridge, all the hostels I've stayed in had one. And most hotels will have a mini-fridge listed in room amenities, I also looked up photos of rooms and will email to check to be sure.

2. Finding a private spot - I never feel comfortable injecting in the bathroom of hostels. But there was one room where people rarely enter - the laundry room.

3. No one really minds - if the laundry room is occupied just use your space no one usually minds. If you still want some privacy ask reception, they are usually super nice and will lend you a private space.

Medication

1. Enough plus 1 or 2

Number 1 tip:

Call ahead. For flights, and hotels. Find out what assistance is available and don't worry if the person on the phone doesn't know, usually the people on the ground are willing to help if you make it clear that you have medication. Ask when you arrive and enjoy your trip

-fin

What's in my hospital bag?