How to survive a road trip with Crohn’s disease

Are you going on a road trip or do you have to travel anywhere by car? And you have Crohn’s disease, Ulcerative Colitis, or another inflammatory bowel disease-related illness? Traveling can be a pain in the bum when you have an IBD. Read my guide on how to survive a road trip with Crohn’s disease and you’ll see that you can still travel, even when you have Crohn’s.

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Crohn’s disease

For people who are not familiar with Crohn’s disease or have just recently been diagnosed, I’ll give a short recap of this illness. Crohn’s disease is a chronic inflammatory disease of the gastrointestinal (GI) tract. Together with Ulcerative Colitis and Irritable Bowel Syndrome, it’s part of the inflammatory bowel diseases (IBD’s).

Crohn’s most often affects the large and small bowels, in my case the last part of my ileum. Crohn’s disease is difficult to diagnose, but once you are diagnosed, there are a number of drugs to keep the inflammation under control. Crohn’s disease is a roller coaster ride.

Remission and flare-ups can come and go as they please. People who suffer a flare-up have the following symptoms.

Abdominal pain

The most common thing about Crohn’s. There is always a pain in the abdomen. Especially right after a meal. You can suffer from cramps. Feeling bloated.

Your tummy makes all kinds of weird noises and you can’t touch your stomach because it hurts too much.

Diarrhoea

Frequent and severe diarrhea is part of the game too. For frequency think more than 4 times in 1 hour and by severe think about Melissa McCarthy in Bridesmaids “It’s coming out of me like lava”.

Other symptoms

Other symptoms of a flare-up are painful bowel movements and bloody stools. Some people suffer from weight loss but that never has been a side effect for me.

Too bad.

I do suffer from anemia and fatigue, which basically controls my whole life. If you want to read more about Crohn’s disease and IBD’s, check healthline.com with more information about Crohn’s disease.

Or find your national Crohn’s organization, like ccfa.org. As you can imagine with these symptoms, it’s not easy to have Crohn’s, even when you’re in remission. But that doesn’t mean you can’t travel or go on a road trip. I sure didn’t let it stop me from traveling!

My Crohn’s disease

I was diagnosed with Crohn’s disease when I was 14 years old. After some internal probing (ha!) they found the reason for my stomach aches and my irregular bowel movements. I was put on medications and things calmed down a bit. I was hospitalized twice for an emergency prednisone drip. When I turned twenty, I got heavier medication. I have been taking Imuran for over 15 years now and they keep my Crohn’s disease under control.

My main struggle is my fatigue and my frequent and irregular toilet visits. This hasn’t stopped me from traveling through. I went on many short and longer trips around the world, even going to Mongolia and Tibet.

I had some really rough times on the road and had a difficult time surviving a road trip with Crohn’s disease. I even had to come home earlier once. Some days, I spent more time at the restroom than at the tourist attractions but that hasn’t stopped me from traveling again.

Although I love traveling by train, taking a road trip is an adventure on its own. Visiting a city at the other end of my country, or touring around a whole different country on another continent. A road trip gives you the freedom to see remote places where no public transport can take you.

It doesn’t matter if you plan a family vacation around some national parks or you have to travel to another hospital across the state. Road trips can be a nightmare when you have Crohn’s disease, but it doesn’t necessarily have to be.

Check my below tips on how to survive a road trip with Crohn’s disease and you’ll be able to travel, just like everybody else.

Preparation for your road trip

I think preparation is key to make a success out of any road trip, but it’s even more important if you want to survive your road trip with Crohn’s disease.

Of course, it’s nice to prepare yourself for what you’ll see along the way, but I’m talking practical preparation.

Avoid stress

Is a road trip coming up? Plan ahead to avoid stress. As we all know, stress is not good and it will add to your anxiety to travel on the road. Start long before you will actually take the trip and make sure you have enough time for your road trip.

Don’t plan too tight but leave enough room for (multiple) stops along your route.

Research gas stations & toilet stops

If you take a road trip and drive from A to B, you’ll likely find some gas stations along the way. It’s important for us Cronhies to know where the toilets are. When I was traveling multiple times up north in the Netherlands, I mapped out all the gas stations with toilets along my route.

I knew there was a stretch with no toilet options and I made sure to mark the last gas station before it, as my must-go stop. If you plan a road trip through a national park or remote area, make sure you know when the next available toilet break will be.

You can join sitorsquat.com before you leave for your road trip. This is a website that maps many public restrooms across the globe.

You can even join them, download the app and they will find a toilet near you if you’re in need. If you’re a member of AAA, you can map out your road trip online with TripTik and check the list of restrooms along your route. This research can help you survive a road trip with Crohn’s disease.

Bring enough coins and change to pay the toilet lady

Going to the toilet in public facilities might cost some bucks. You might need to donate a small fee or the doors won’t unlock unless you have the proper change with you. You do not want to have to run back to the car or ask strangers for the right amount of change when you’re in need of a loo urgently.

Bring enough coins and save up all your change. When traveling in Germany, you’ll get a receipt when you visit the toilet. With that receipt, you’ll get a discount for the same amount when you purchase anything in the shop. So make sure to go to the toilet before you buy your coffee to go.

What to bring on your road trip?

Going on a road trip is a great way to travel because you can stuff a lot of things in the car with you. You do not have any luggage fees and you can bring as many fluids as you want with you.

If you want to survive a road trip with Crohn’s disease, I advise you to bring some important things.

Bring your own toilet paper

People with Crohn’s disease already bring their own toilet paper where ever they go, but I thought I just state the obvious once more. You cannot count on toilet paper being provided at your toilet stop. The facilities might not be as clean as you’re used to, so make sure to bring your own products.

Also take wet wipes or nappies and some hand sanitizer, just in case.

Keep medication close at hand

Of course, you’ll need your meds. If it’s just a 1-day trip or a multiple-day road trip, make sure you bring your medication. Last year, I was driving somewhere and after half an hour, I realized I’d forgotten my medication.

Oeps. There and back again.

So don’t forget to pack them, but also keep them close at hand. Your medication is no good to you hidden at the bottom of your suitcase and stuffed in the trunk of your car. Especially when you absolutely need them, like now!

Bring a scarf or sheet

Bring a large scarf or sheet when you go on a road trip. It comes in handy when you’re in the middle of nowhere and there isn’t a toilet in sight. And there isn’t anything else in sight either. This was the case with my one-week Gobi desert tour in Mongolia.

There are not many bushes to hide behind in the desert. With a scarf or a sheet, you can build some sort of privacy corner when you have to go do your business.

This way, you’ll have a little bit of privacy and you do not have to show your bum to all the other cars passing by.

Wear comfortable cloths

Sitting in the car for multiple hours in your tight jeans will leave a mark on your legs and belly. You do not want your tight belt buckle to hit your stomach with each bump in the road. Maybe your bum is hurting from the last toilet visit.

Make sure you wear comfortable clothing, like sweat pants or linen trousers in summer. Maybe even bring a donut to sit on, to relieve the pressure from your butt. Anything to make you more comfortable and survive a road trip with Crohn’s disease.

Bring your own food and snacks

Driving and road-tripping can make you hungry. It’s always nice to snack on something. But you do not want to eat the sugar-loaded, fat, and old food at gas stations or roadside diners. It’s better to bring your own food and snacks.

This way, you’ll know what you put in your mouth and how your body reacts to it. Don’t know what to bring? Consider nuts, dried fruits, granola, rice crackers, or oat cookies. Basically, anything that you know works for you.

Change your eating pattern

If you’re not comfortable traveling and you’re constantly anxious about finding a toilet, you don’t want to add more stress. You might want to consider changing your eating pattern for the duration of the road trip.

Slowing down the digestive system or shutting it down completely, might prevent you from rushing to the toilet and helps you survive a road trip with Crohn’s disease.

*Important note.

Eat food that is light on the digestive system

Don’t eat a heavy meal or a hearty breakfast right before your road trip. You want to be gentle for your intestines and give them as little work as possible. Make sure to eat natural food, which is non-GMO. Drink plenty of water and bring a water bottle with a filter to avoid catching any bacteria. Don’t let people put ice in your drink and avoid ice cream.

If you really want to shut your system down, to avoid #2 on the road, consider only take fluid Nutritionals. You can start with this 12 hours before your road trip. You take large amounts of clear broth, tea, cranberry juice, and other light juices. Consider Jell-O and popsicles.

This will keep you hydrated and nourished on your road trip. Don’t eat a big meal the minute after you arrive, but continue with the liquids for half a day longer.

*Important note.

Other tips to survive a road trip with Crohn’s disease

You’ve researched the toilet stops along the way. Took the things with you and kept them close at hand during your road trip. You have looked at what to eat and drink during your drive. Please take note of the following tips to help survive a road trip with Crohn’s disease:

Take breaks

It’s tempting to put the pedal to the metal and drive as quickly as possible (or allowed). This way, you’ll reach your destination as soon as possible and you’ll be safe. However, taking breaks is important. Put the car aside and take some fresh air.

Walk around and get some exercise to avoid constipation. This way, you’ll be able to concentrate again and be a safe driver and survive a road trip with Crohn’s disease.

Avoid traffic jams

There is nothing more nerve-racking than getting stuck in a huge traffic jam. Slowly the cars in front of you come to a stop and you’re stuck. Avoid the stress of being stuck in traffic and take a detour when the option presents itself.

Or better yet, stop at the first gas station or diner and take a break. This way, you’ll be close to a toilet and you do not have to worry about having to go when you’re stuck in traffic.

Accept company

If somebody offers to drive along with you, take the offer. It’s better to drive with 2 or more people than on your own. Especially when you have severe flare-ups and you’ll experience heavy stomach pain. It’s not responsible to drive when your stomach is having you fold over the steering wheel in pain.

You can take turns driving, which isn’t so exhausting and they can distract you with conversation. Or, if you find yourself in the middle of nowhere, they can hold up your scarf as an improvised toilet as mentioned above. Traveling together can help you survive a road trip with Crohn’s disease.

Inspiration

As you can read above, with a little preparation there is no reason not to go on a road trip with Crohn’s disease. In case you’re wondering where to go, here’s some inspiration.

Top 10 road trips in Europe by triphobo.com. They take you around Europe and listed the best road trips on the continent.

15 American sights you’ll see on Route 66 by matadornetwork.com takes you along the mother road of America with epic pictures to get you inspired. If that doesn’t spark your wanderlust I don’t know what will.

*Important note: I’m not a doctor and I did not study medicine. All the above are my own opinions or the experiences of other people with Crohn’s disease. I also learned from my own life with Crohn’s disease.

Each disease is different and what works for me, might not work for you. In case of any doubt, consult with your doctor and make sure to follow the advice of a medical professional.

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Do you have Crohn’s disease or Ulcerative Colitis? What preparations do you take before going on a road trip? I’d love to learn what works for you to survive a road trip with Crohn’s disease. Please share your thoughts in the comment section below.