Living with Ulcerative Colitis: 10 Tips For Traveling

Living with Ulcerative Colitis: 10 Tips For Traveling

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Ulcerative Colitis (UC) is a big part of my life. Ten years ago, as I was packing up my apartment to leave for Indonesia, circumstances started to get a bit messy.  I began seeing the signs and symptoms of colitis, and scopes revealed minor inflammation in the left side of my colon.  I managed to somewhat successfully live abroad for the year, regardless. Fighting corrupt customs for maintenance medication and accidentally ingesting a parasite made me appreciate my time abroad even more. I worried that I would never again have the opportunity to travel, especially after starting to see more aggressive UC symptoms. Living with Ulcerative Colitis is truly life changing, but chronic illness does not have to be life ending.

Living with Ulcerative Colitis is truly life changing, but chronic illness does not have to be life ending. Click To Tweet

living with ulcerative colitis

My Diagnosis 

I barely managed my symptoms, but the blood and gore never cleared up during the first 8.5 years of my diagnosis.  Acclimated to this way of life, I watched as my risk for colon cancer skyrocketed. Unlike many others, I did not struggle as much–blood transfusions and hospital stays–considering myself lucky and not really that ‘sick.’  UC did not affect my jetsetting.

Then there was that fateful day when my GI doctor came out of the colonoscopy room and sat on my hospital bed. A sign that life was about to implode. I left the outpatient center that day sobbing.  My colon could be a goner and the passion I lived for was smashing apart before my eyes. How could anyone travel with newly labeled ‘severe’ Ulcerative Colitis?  I could barely make it to work.

My UC flew out of control and continue worsening each day. I had no energy, I lost too much blood and weight, and I woke up sick to my stomach every day. Everything I ate made me look like a blowfish, I had sores in my mouth, working was getting harder, and my joints hurt. I had chronic fevers. Some days, I drank a bottle of water and only ate rice crackers with peanut butter and bananas.

I’m not one to give up and host pity parties, especially when I am lactose-intolerant. Pigging out on coconut milk ice cream just isn’t the same.  Luckily after many trial medications, Remicade saved the quality of my life.  There was hope to reclaim my international traveling lifestyle, with some modifications.

Traveling With Ulcerative Colitis

Although I am feeling much better lately, I have been reading more and more about how people are afraid to travel abroad with UC, IBD, and other chronic illnesses. I understand: I have minor anxiety before a trip, and I still tend to get sick abroad. Questions race in my head as I book tickets: Will I be too sick to fly? Will I catch some bad cold on the germy plane with my now suppressed immune system? What will I eat? Will the food make me sick? What if I go down while abroad? How do I stay healthy? Will I be too exhausted and miss out on the fun? Can I sit in a car for hours? Tour buses with how many stops?  Eight to 16-hour plane rides with limited food and bathrooms?

When thousands of dollars for a vacation are on the line, traveling with Ulcerative Colitis can seem scary and impossible.  Rest assured, I will always travel. I have been all over the world to places including Indonesia, Turkey, Greece, Guatemala, Brazil, Panama, Nicaragua, France, the Netherlands, and so many more.  I make modifications and travel differently since my diagnosis, but my adventures are still amazing.  These are my tricks.

Pin 10 Tips For Living With Colitis and Maintaining a Travel Lifestyle:

Living With Ulcerative Colitis and Traveling Abroad Infographic

Ten Tips To Make Traveling With UC Anxiety-Free and Easier:

While I am not a doctor and always recommend seeking advice from a professional, here are a few ways that I travel abroad anxiety-free with UC and manage to stay healthy and happy:

1. Tell your GI doctor that you will be traveling abroad

At times, I am the worst GI patient. We recently traveled back to my Indo home for two weeks. While we planned more tourist activities, like Bali fire dances and rice paddy climbing, we also had a more local agenda. Friends to visit, fellow teachers to see, adopted family members to dine with. Local food. How could I not eat from my favorite street vendors? In Bali, I trusted 4-star hotels and drank the smoothies. I ordered salads and ate non-peeled fruit—because I wanted and needed to stay healthy. I made tummy fatal flaws.

Mind you, I lived in Indonesia for a year. I got sick. Not a little sick.  I mean crawling-on-the-ground-begging-to-die-from-yakking-so-much sick every single dang month. I know better.  You can only imagine what happened on our two-week vacation. One week was shot, and the worst part: I didn’t talk to my GI doctor before leaving. If I had, he would have prescribed hardcore tummy drugs to help with the nausea and end the plentiful gore. He knows what medicines won’t destroy my intestinal bacteria. Instead, I suffered much longer and more painfully than necessary. I had to let the food poisoning run its course.

Trust me, tell your GI doctor and get preventative medication.

2. Bring extra prescription medications. Have a copy of the prescription with you, and in some cases, a doctor’s note.

Extra Meds

You never know what type of crisis may arise while abroad. A volcano erupting can cancel flights for a week. A hurricane may push back everything for two. Imagine not having enough of your required medicine. I always carry extra; [legal] drugs are the first thing I pack. Sometimes bringing more prescription meds means pleading and talking to the insurance company. Just do it, especially if you cannot afford to go a day without your medicine.

Living with ulcerative colitis and traveling with chronic illness

Labeled Prescription Bottles and Script

Some countries are also stricter about bringing in medicine from another country, like Singapore.  Make sure that you are carrying all medicine, prescription or over the counter on you—do not check it, if possible.  P.S. You can carry large liquids like say, rectal enemas, with you as long as you have a doctor’s note. Make sure all medicine is properly labeled with your name. Your mom’s Xanax will get you stopped in some places; don’t hide it in Dramamine bottles.  Just sayin.’ Have a copy of your written prescription on you, and in some cases, a doctor’s note.  Europe has not been this strict for me yet.

I also carry an abundance of over the counter U.S. tummy meds like Gas X, Lactaid, and Beano. You can find these lifesavers abroad but not always.  Uncorked Librarian fact: somehow I always end up at a pharmacy abroad.  I forget bandaids, slice my finger–and we know Remicade turns that into a near amputation–or my allergies flare.  I have some pretty funny stories.  Not all countries have items like Neosporin without a script.  You know who you are, cough, Italy and France.

3. Learn how to say your food allergies and intolerances in the language of your destination(s)

Not everyone with UC has food intolerances. I have always been lactose intolerant. For some unexplainable reason, with UC, I also cannot have capsicum—peppers destroy me. Spice in general is a huge no with IBD. And get ready: My husband has Celiac’s Disease and is also lactose-intolerant. It’s why I married him. Before leaving the U.S., we learn how to say phrases such as ‘no wheat,’ ‘gluten-free,’ and ‘I cannot have milk’ in the country’s native language. Trust me, it helps. Most countries, especially in Europe, are allergy friendly. Ireland numbers their menus with intolerances, and we were shocked with how well Italy caters to gluten-free pasta and breads.

Don’t forget you can download the Google Translate app too.  Be sure to set-up your international cell service. Sometimes our guidebooks have a phrase section as well.  P.S. Lonely Planet is my travel bible.

4. Check for international and walk-in clinics before picking your hotel. See if hotels have on-call doctors

Remember that Indonesian medical disaster? Well, I knew the location of international clinics beforehand and our selected hotels had on-call doctors. A hotel doctor came up to our room, took care of us, and brought my husband prescription medicine within an hour of calling. She even gave us Gatorade packets. Lucky for us, Indonesia has universal healthcare and medicine is cheap.

Having doctors readily available that speak multiple languages is a huge anxiety reliever. You can also research these clinics while abroad if you get sick, but it is much less stressful to have an idea in advance. If you are already taken out, gosh knows you can’t even move let alone try to figure out what to do.  I should also warn you to find reputable doctors and stay at reputable places with sanitary practices.  Ask around.  A doctor abroad once merely looked at me, told me my colon was collapsing on itself, and wanted to scope me when I had just drank some bad ice water.

5. Consider travelers’ insurance

This brings me to my next point: think about travelers’ insurance. If you get sick a lot, you might want to be covered abroad. Plans are pricy and hard to get for chronic illness patients. I don’t have all of the answers on this one, but ask your insurance company what is covered.

Also, if you are like me and worried about a flare before leaving, we get AAA insurance for the whole trip; gosh forbid I’m too sick to go. AAA, for Americans, is cheap and covers pretty much everything from airfare to hotels. The cost of insurance is based on the cost of the vacation or how much you want insured. Sometimes we get insurance and other times we gamble.


Don’t forget to check out some of my travel guides and favorite workout activities:
Hidden Finds in St.Augustine, Florida & Beer Yoga

6. Order special meals for the plane in advance. If online options are limited, call the airline. Carry snacks and meals for the plane if the flight is long or if you still have concerns.

Living with Ulcerative Colitis and traveling abroadSpecial Meals

Almost all airlines these days have the option to order special meals.  Some food choices offered include: vegetarian, gluten-free, and lactose-free. Special meals differ across airlines and if you do not see an option listed, it never hurts to give the airline a call.

Keep in mind, even if you select a meal in advance, sometimes mistakes are made. On both of my flights to Ireland and back, I did not receive the requested meals. I called, talked to customer service at the airport, and ordered online. The flight attendants graciously found me lactose-free food, mostly fruit, which was very acidic on my sensitive and empty stomach.  On one long leg, they could not find any hot meals. Thankfully, I am always prepared:

Packing Snacks

Once we clear airport security, the first thing we do is head to the convenient store—like a Hudson News—for waters. Typically, I already have healthy snacks packed in my carryon. Sometimes I will pick up additional treats at the airport. We also grab a meal right before an international flight so that we are not too hungry at the start; we do live far from our airport. If you choose to eat at the airport, know your options beforehand to save time.

If we are flying 16 hours straight to Dubai, we order a second meal to go. I cannot tell you how many times this has saved me from starving on a flight. BUT, be careful about perishable food and getting sick. Most places warn you that 90 minutes without refrigeration is way too long. We push the limits, if we are desperate. Be safe and smart.

7. Don’t alter your habits just because you are on vacation

Did we make it out of the country yet? YESSSSS!!! Once abroad, first off: have the time of your freaking life. Seriously. Take in the scenery, talk to the locals, rent bikes, relax, and go see all of the musts.

Because you are traveling and possibly vacationing, do not go wild, though. For people with UC, some routines are good. Try to go to bed around the same time and eat consistent meals while adjusting to time changes. Don’t change your diet 200% or eat and drink things that you can’t usually at home. Your country may have changed but not your body.

Don’t forget to take your medication. I have to think about how to divvy up my UC pills and vitamins across big time changes. Even 6 hours for Portugal messes up my system—bathroom, meds, digestion, sleep.

Be conscious of what you are doing to your body and how you feel. I know that it usually takes me a few days to feel better after landing.

 

 

8. Get plenty of sleep and know your limits; take days to just recoup and relax.

Sleep

I originally typed “Sleep” as its own number. I cannot tell you how important and hard this one is. We landed in Sicily after not sleeping on a redeye. We visited our sweet family who jacked us up on espresso and delicious food. I had not adjusted to the time zone.  Jet lag is always for real, and coffee late at night is BAD. For a week, I wrecked my sleeping patterns. Half the day, meet zombie Christine, and the other half try to catch up with wired Christine.

Lack of sleep irritates my belly more than anything. My advice: try to get on the country’s schedule the minute you land. If this means no nap, it means no nap. Don’t overcompensate with coffee either.

Rest and take days off

Along with sleep comes rest. When we landed in Portugal, we had a city walking tour that night. We hadn’t slept in a day. For the next three days, we had early morning, full day tours. By Day 3, colitis body said: I am done. Tired, on the verge of tears, and catching a cold, I could take no more. We canceled the tour and slept in—happily. A small waste of money, but a better lesson for the future.

We had the same exhaustion problem on our honeymoon: Mykonos, Santorini, Athens, and Istanbul in two weeks.  The last three to five days, I had a miserable cold.  Although I had fun sniffing a drugged tissue in a Turkish pharmacy, my recommendation: take it easy.  See a few less places in exchange for experiencing more where you are.

Now when I book vacations, I take it slower. I know my body. I book days for rest in between. These aren’t wasted days. We ride bikes and picnic, we hike, and we drive around and explore. These days are some of my favorites, and hidden gems always find us.

As I get older, I like less group tours and more private ones that suit my interests and health needs. We also rent cars frequently and do our own thing. Don’t get me wrong, I love the occasional bus tour through Tuscany to wine taste and see the musts too. Our 40+ person tour helped us beat the lines in Giverny, France to see Monet’s gardens.

9. Eat healthy and limit your alcohol intake.

Booze doesn’t have to be your vacation life-force

Guys, I am The Uncorked Librarian. I love my wine and craft beer.  I attend brewery yoga weekly.  Even more, I love Sicilian wine, Dutch gin, Guinness, lemoncello from the Amalfi Coast, and Mexican margaritas. Paper cup with cheap pina coladas, over here please!   None of this is conducive to UC unless in moderation. I try to only have an alcoholic bevie with lunch and one with dinner. Order just a half pour of beer. Skip the sugary additives and go for straight on the rocks. I can still taste local flavors without killing myself.   Note: My GI would probably recommend one drink all week. I know. I have UC vices.

With alcohol drinking comes hydration. Drink water. I am not a camel, which is unfortunate for long car and bus rides. However, water is another huge factor in maintaining colon health.

Living with ulcerative colitis

Food is soooo good and so very bad     

The same advice goes for food: moderation. Do not pig out and don’t eat too rich of foods every day. Sometimes we take a break from heavier meals—French cuisine was delicious but hard on our stomachs—and find Pho, even when in Dublin or Amsterdam. Local foods are great but if you aren’t used to them, find a place with blander food that is similar to home.

We also love to grocery shop abroad. Dublin, Amsterdam, and Seville had the best gourmet markets with specialty food and drinks. You can buy fruit, water, organic wine, healthy snacks, and so much more. If you cannot find a big store, we also peruse convenient stores for essentials like bottled water.  Grocery shopping abroad is like taking a mini tour of the country.

Grocery shopping abroad is like taking a mini tour of the country. Click To Tweet

At home, I take probiotics but they require refrigeration. When abroad, I’ll look for lactose-free yogurts and natural substitutes.

Lastly, we always contact our hotels and let them know about our food intolerances. While we never expect a place to go out of their way, most hotels will make sure to have gf bread and some type of dairy-free milk on hand.

10. Schedule time to workout or plan physical activities

Living with Ulcerative ColitisThis is my hardest and final piece of advice.  At home, I commit to a workout 5 days a week for one hour a day. I cannot maintain this regime abroad, no matter how cool and fit I think I am. I do, however, pack my iPad and a lighter, cheaper yoga mat. What’s up Yoga With Adriene in Jakarta. Doing yoga on vacation keeps me mindful and relaxed. I stretch after being crammed into a tiny airplane seat while getting in a workout. Adriene’s videos are only 20-40 minutes long, which are perfect for a quick AM or bedtime stretch. Just hope your hotel room is big enough or that they have a gym. P.S. Girlfriend is addicting.  My favorite yoga mat brand for travel and home: Manduka.

Although I pack running shoes, guess what?! Never do I run. Nor do I sludge my way to the machines. What is more motivating is hiking or naturally exercising. In Ireland, we hiked the Burren and Connemara National Loop. In Lucca, Italy we rode bikes for hours around the city walls. Finding natural exercise lifts my mood, tires me out for bedtime, and improves the quality of my day.  We already know exercise does wonders for UC patients.

Phew, I hope this list makes living with Ulcerative Colitis and traveling a bit less intimidating.

I am interested to hear your thoughts or feedback in the comments.  What habits and tips make living with ulcerative colitis better for you?  How do you travel safely with chronic illness?

Disclaimer: Please remember that I am not a medical professional. While I know and understand my body pretty well, it is always best to seek professional advice when traveling. This post is based on my personal experiences and is meant to give you ideas for conversations with doctors.  I find that by reading and connecting with others in similar situations, I learn a lot about my body and am inspired to take proactive steps to living to my fullest potential with UC.

Know Others Who Could Benefit That Are Living With Ulcerative Colitis?  Sharing Is Caring:

Living with Ulcerative Colitis

 

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