In April 2018, I was contacted by a new-ish medical information website about an article on traveling with Crohn’s disease. They asked for an interview, with a plan to publish in a few weeks. (Not Healthline, BTW. I love them!)
I was honored they asked and excited to participate; I have developed many strategies for dealing with Crohn’s while traveling and have honed my travel routine to minimize the chance of accidents.
I was painfully honest. As is my usual fashion, I pulled no punches. Besides, people with Crohn’s disease don’t need more platitudes and well-wishes. They need concrete, real world examples of how to deal with their shit, both literally and figuratively.
Four months have passed, and still no article.
Oh, well. Guess I’ll publish it myself.
1. Does Crohn’s disease influence the places you choose to travel? Or the method you use to get there (plane, train, car, etc.)?
Definitely the method! Three years ago, I left a 20-year career in litigation because of Crohn’s disease. I had a choice: I could sit around waiting for the next urgent bathroom blowout, or I could travel North America in a motorhome, where I always have a toilet with me. I thought about naming the blog “Have Toilet, Will Travel,” but I didn’t want Crohn’s to dominate the blog, or my life. It is part of who I am, but it does not define me. The blog is www.theladyisatramp.net.
2. What are some of your biggest concerns about traveling with Crohn’s disease?
When I am not in the motorhome, the biggest, prevailing, pervasive concern is, will I find and make it to a bathroom in time? When driving the rig, will I find a safe space, large enough to pull over, and get to the toilet before I have an accident?
3. Do you make special travel or hotel accommodations?
When flying, I always book an aisle seat. If I am having a particularly bad day, I introduce myself to the flight attendants and show them my Crohn’s and Colitis Foundation membership card, which says on the back, in capital letters, “I CAN’T WAIT.”
I recommend everyone become a member of the foundation and get that card! I’ve showed it to cut in long lines in restrooms around the country, and even once to a police officer when pulled over for speeding to get to a restroom (he let me go, and I made it!).
When the rig is parked and I am driving the car for sightseeing, I am always on the lookout for fast food restaurants, rest stops, construction site portables, and gas stations. For those times when there is just nothing around, I carry a “Luggable Loo” portable toilet in the the car.
It is a bucket/bag system most often used by campers, but it also works great for those bathroom emergencies. Open the two car doors away from traffic and have a seat!
On sightseeing tours, I look for buses and trollies with on-board facilities. If they are not equipped with a bathroom, I ask about the number and frequency of bathroom breaks. If there are none, before the tour I don’t eat, take prescription-strength Lomotil (Diohenoxylate-Atropine), and wear an incontinence undergarment as a backup. (Same routine for taxis and Ubers, mass transit, etc.)
For parades, large community events, and outdoor concerts where even a Porta-Potty might be hard to find, I splurge for VIP tickets with dedicated bathrooms. Mardis Gras and Jazz Fest in New Orleans, the Kentucky Derby, and Fourth of July fireworks in Bar Harbor, Maine from a boat with a head on board are just a few examples.
4. Are there certain items you always travel with? What are they?
Crohn’s and Colitis Foundation Membership Card
Prescription Lomotil
Tissues and wet wipes
Travel-sized Lysol for the poor person who has to follow along behind me in the public restroom!
Luggable Loo in the car
5. Tell me about traveling with medications. Are there special precautions?
I receive an infusion of Entyvio, an immunosuppressant, every eight weeks. For the last two years my health insurance covered me around the country for the most part, but now I must travel to Seattle every two months for the infusion. It’s not ideal, and it’s putting a pretty serious cramp in my nomad lifestyle. For now I’m finding ways to make it work, parking the rig, arranging care for the animals, and flying back to Seattle.
For a short time I was prescribed a drug that was self-injected in the abdomen. It required refrigeration. I empathize with anyone who is traveling with those sorts of drugs (and needles), especially through security checkpoints. You’ll have to ask them how they do it, as I wasn’t on that drug for very long, thank goodness.
6. Are there any ways to help prevent a flare while traveling?
For me, heavens no. Just the stress of travel can bring on my symptoms pretty fast. I don’t really have trigger foods; it all seems to go through me the same way. But, if your readers have foods that trigger flares, they should obviously avoid them while traveling. And, eat what I call the “Glue Foods:” Plain potatoes, white bread, white rice, saltines.
7. What are some of your best tips for traveling with Crohn’s disease?
Plan ahead. Choose trips and events that fit your reality – this may not be the year to travel via camel across the Sahara. Call and ask about restrooms and bathroom breaks. Don’t be embarrassed to tell the people who need to know about your condition. Stay positive!
8. Is there anything you’d like other people with Crohn’s disease to know about traveling?
You can do it. Don’t stay home. There is a way.
9. Is there anything you’d like someone who is traveling with a person who has Crohn’s disease to know?
Be patient; you will stop for breaks more often, and for longer intervals than you are used to. Keep your eyes peeled for restrooms. If you both need to go to the bathroom, let your Chronnie go first. Understand your Chronnie may get up and leave you mid-sentence to get to a bathroom in time. It’s not personal!
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Keeping It Real!
This Post Has 7 Comments
I first heard about you from, I believe, from Gone with the Wynns and am so happy they spoke of you, Tammy. Every time I read your blog there is something to chuckle at, be in awe about, and always be inspired by. This post describing your travels with Crohn’s disease, well I finally had to comment. Again, your writing talent grabbed me. I so appreciate your explanation of the obstacles you live with and how you have chosen to not let this stop you from living out you dream. Boy do I admire you! I wanted to pass on to you how much you have inspired me to “take the leap” and follow my dream too.
Thank you so much for sharing who you are. Keep up the terrific work and best wishes for safe travels.
BTW, I am from Sammamish and I enjoy your Seattle blogs too! Thanks Tammy!
Jane, thank you for your kind words of encouragement! They mean a lot.
Nice job, Tammy. You have such a great attitude and perserverance! Having had a right hemi-colonectomy (meaning I lost the right assending third of my colon) about 5 years ago, I have similar issues. I am lucky as they are mostly in the morning, and that’s it, so I can work better around it. My hubs gets it, but forgets once in awhile…
And, if you ever need help with the pups and Boss Tweed, put me on your email list. If we are ever in the same area again (we met last spring on the MIssissippi River near Natchez), we would love to help with pets and rig security if we can!
Take care and happy travels!
Thank you for the kind offer, Laura!
I have irritable bowel disease, which is similar to Crohn’s but not quite as bad. I appreciated all of your tips, but I have found that eating very small meals all day instead of regular meals helps me. (Luckily, I live alone and do not have to cook for anyone else.) Restaurant meals are a serious problem even if I take home half of my meal for later. However, traveling via motorhome is wonderful!
I recently spent 6 weeks in the UK, where it was a serious challenge to find toilets on time. I ended up not eating in the mornings and eating very small lunches when out because I might have trouble finding a toilet. Sometimes I was afraid to eat until mid-afternoon. This and a ton of walking meant I lost 15 pounds over the 6 weeks, which I guess was a bonus.
Judy, thanks for your tips. My last trip to London would not have been possible without Starbuck’s bathrooms!
Yes, thank heavens for Starbucks and McDonalds, two places where you can be certain of finding a restroom. Also good are department stores like Marks & Spencer and museums. I bought a lot of takeout from places like Pret a Manger so I could eat small meals in my hotel room. So far, I manage with over-the-counter Imodium, which I am glad of. Thanks for posting this so other people can understand the problems some of us have.