Who doesn’t love a good road trip? Especially as a child, listening to the hum of the car, peering through the window as trees pass you by, and drifting to sleep as your parents chat.
Now that I’m older, it’s more like seeing new places, meeting new faces ... and discovering new bathrooms! In my pre-IBD days, that would not have been part of my itinerary. It would have never crossed my mind to think about how my diet or medication could affect my activities or might halt travel plans. It was all about simple enjoyment -- spending time with my family and being in the moment.
It’s interesting how priorities can shift and life plans change to accommodate an illness. Now, the planning and packing agenda becomes more than just choosing the right shoes for an outfit. I have to think about how to handle medications, purchasing and preparing meals and snacks in advance, and making sure I have both an ice pack and a heating pad.
In 2015, a terrible flare landed me in the hospital. After discharge, I was still struggling with keeping down food and water. That’s common after a flare. It usually takes several weeks to months to readjust. When you can go back to a “new” normal of diet and activities depends on the degree of inflammation and current medications.
In fact, one thing doctors don’t widely discuss with you is how to plan to move forward after recovering from a flare. I was torn between wanting to jump immediately into everyday activities, especially outdoor activities, and feeling uncertain and scared how my body would respond. I was terrified of possibly being in an embarrassing situation and not being able to get out of it fast enough.
And I think I may have manifested that fear into reality. Several days after being discharged from the hospital, I was invited to a close friend’s wedding. She was having an outdoor wedding near a campsite an hour away from home. I was still very much symptomatic and running to the bathroom after every meal and every sip of water or tea. My travel plans went as far as getting up from my bed to the downstairs powder room, the master bathroom in my parents’ room, or the upstairs hallway bathroom -- whichever was available for touring. My younger sister also has IBD, so it was good that we had more than one restroom!
I wanted to go to the wedding, so here’s how I talked myself into it:
- An hour trip isn’t too bad, as long as I don’t have anything to eat several hours prior to leaving the house.
- There will definitely be a bathroom at the campsite if I need it.
The wedding was lovely, and the outdoor location was just gorgeous -- the simplicity, the trees, the food. After taking a small bite of the beautiful saffron rice with kebob, I felt immediate regret. My stomach wasn’t happy.
I was able to locate a bathroom when we first got there, but I didn’t really have any idea of what it might look like on the inside. This was my first time at a campsite. And that was not something I was prepared for -- chalk it up to naivete and denial. I was so desperate to achieve any kind of normal that I didn’t plan further. That experience led me to be more proactive in any type of trip decision-making.
There are several factors I now consider when I travel. They give me peace of mind so I can enjoy my trip while still being prepared for worst-case scenarios:
1. I avoid travelling when I’m experiencing a flare. It’s difficult to not experience every happy occasion with dear friends and family, but it’s part of the journey with chronic illness. And it’s a hard one to accept.
2. When I do travel, I carry with me a small medication bag for easy access. It includes my regular medication regimen, as well as any PRN, or as-needed drugs, and pain medication.
3. If I happen to travel by plane when I’m due for my next injection, I request a specific note from my GI in case it gets flagged by airport security.
4. For any long-distance trips by car, ice packs or heat packs are really helpful. Some patients experience frequent abscess and fistulas, and their bottoms can be extra sensitive to any type of friction or movement. They also help a great deal with soothing abdominal pain.
5. Bathrooms are a big deal for me! My condition comes with quite a bit of anxiety as is. Patients with IBD are more vulnerable to infections and particularly a gut bacterium called C. difficile. I carry travel size cleaning products with me to disinfect restrooms before using (unfortunately, I can only do that on road trips). It certainly isn’t necessary if toilet seat covers are available, but I like to take extra precautions to prevent any flare-ups of disease.
6. Follow instructions 1-5 and have fun! And remember to take selfies!
Photo Credit: damircudic via Getty Images