When some patients hear the words “traveling” and “IBD” they think of the question: “How?” Since living on the Crohn’s-disease or ulcerative-colitis roller coaster isn’t easy, you like to be around your creature comforts — places and situations that make you feel comfortable — this way if, inflammatory bowel disease (IBD) were ever to strike, you won’t feel out of place.
But is that any way to live? You don’t want miss out on seeing new places or opportunities because of your IBD. I’ve always said that with the right planning and preparation, anything is possible, but I now know that this doesn’t just mean physically — it means mentally, too.
Recently, I had a trip lined up to see friends in Washington, D.C., and then attend a work conference in Philadelphia on the way back home. Since a majority of this trip was for work, there was a lot of stress to get everything I had on my office to-do list completed before I left. Since we all know that stress can lead to a flare, this didn’t help my Crohn’s.
One or two days before the trip, I started to feel a little weaker than normal, but nothing that was upsetting me yet. There were some common symptoms in my life, such as nausea and chronic pain, which I’ve sadly gotten used to, so I began packing and getting ready as normal. I even packed all of my cycling and running gear to train in both cities for my triathlons.
Everything was set and I thought I was ready for anything. But was I?
Soon after the five-hour car ride down to D.C., I knew something wasn’t right. My body felt off, I was having trouble staying hydrated, and I knew I had to change my mind set into a cautious mode. What should I eat? What shouldn’t I eat? What is my hydration plan? Did I bring everything I needed? Is my doctor reachable? The normal questions started to go through my head.
Still, I didn’t know what was ahead of me and the battle that would be taking place.
The next day I woke up at my friend’s place and knew that things were heading downhill. I didn’t have an appetite, had stomach pain, was nauseous, and more. A flare was starting. My first one in about three years. Panic mode? Not yet. I was prepared, so I called my doctor and asked him to call in a prescription for Prednisone to the nearest pharmacy. About an hour later, I had something to keep me out of the hospital. But it wasn’t over yet. For my Crohn’s it still takes 36 hours or so for the Prednisone to really kick in. I still had to be on alert.
Since I already felt out of place, I decided to head to the conference a day early and get settled in my hotel room. This would be home for four days, so I figured it couldn’t hurt to take the stress out of driving there on the first day. This way, I could relax and hopefully catch up on what my body needed.
The next day I started to really head downhill. My entire body ached and my ostomy was dumping, which means going to the bathroom every 30 minutes to empty. This doesn’t happen often. In fact, I’d say it rarely happens but now it’s happening on the road. Time to start thinking of what I should do.
Since the Prednisone obviously needed more time to work, I had to start laying out a plan and communicating my problem to those in my support network. Since I was now going to the bathroom every 15 to 30 minutes with my ostomy dumping, I couldn’t get in the car and drive back home. I couldn’t even be certain to make it from exit to exit. So, what did I do?
I began the process to get through the remainder of the trip and I was able to do it successfully, even though it wasn’t an easy few days, by any means.
Here are some things I learned while on this trip and how to deal with a flare on the road.
Communication is key
It’s hard to communicate about your IBD at times and that’s normal. But this is not the time to keep things to yourself. I had fears of calling a loved one and having them say: “I told you that you shouldn’t have gone,” or thoughts that, if I put myself in this position, I have to get myself out.
This is not the case at all. We need to let our loved ones and support network know what is going on. They have been there for you in the past for a reason. They understand IBD. They know it’s not your fault, sodon’t hesitate to reach out for help. They will be supportive and help you through the battle.
Your doctor might not always be available at a moment’s notice. If you are going on a long trip or if you’re starting to feel a little off, make sure you have any medications that you might need ahead of time. If you know your IBD case well, you’ll be prepared and know what you need.
The last thing you want is to be away from home and not be able to get in touch with your doctor. So be prepared for anything.
If you’re an educated and well-prepared patient, you’ll not only plan out your trip but also be ready for anything. This means knowing what hospital options you might have in the area and even doctors that might be a part of your care.
Don’t hesitate to call your own gastroenterologist and see if they know anyone in the area, if you’re afraid of what might happen if you have a flare away from home. Also, make sure you know if your insurance is accepted and will cover you at any hospital you might have to visit. The last thing you would want is a large cloud of debt hanging over your head because you didn’t know your care wouldn’t be covered.
When you have a flare on the road, the easiest thing to do to at least get things under control is to call your doctor and get a prescription called in that will help you. But it won’t end there, you will likely also make pharmacy runs to pick up other creature comforts.
On my most recent trip, when I flared, I had to purchase a host of things to turn my hotel room into a personal space I could be comfortable in. This included calorie-filled shakes like Ensure or Boost, pickles to help retain hydration, over-the-counter pain and fever medication, a fan to cool me off, a heating pad to help with cramping, anti-diarrhea medicine, and much more.
Moral of the story: Know where the local major pharmacy is and be ready to go if needed.
Extra financial resources
How many times have you been on the road, your IBD starts to flare, and you have no idea how you’re going to afford the necessary purchases because you didn’t build these expenses into your budget?
Don’t deal with a large amount of pain and discomfort because you didn’t include at least some extra funds to deal with the unexpected. No matter how much you pack, when a flare arrives there will always be something else you will probably need. Make sure you don’t have to stress about taking care of yourself.
Be ready and relaxed
In the end, we all need to travel from time to time. We can’t just sit in our homes the rest of our lives and not doing anything. Whether it be for work or pleasure, you will end up traveling at some point. And at that point you have to be ready and relaxed.
If anything ever happens while on a trip, the biggest thing you can do for your IBD and mental well-being is to stay calm and know that you are ready for anything ahead. If you are prepared, then your IBD can throw many curve balls your way. And while you might not be able to hit a homerun, a base hit is all we want to shoot for when traveling with a flare.
Brian Greenberg was diagnosed with Crohn’s disease at age 11. His freshman year of college, he began a roller coaster ride of flares, hospitals stays, major surgeries, and more, with brief breaks of good health. After having an ostomy surgery 6 years ago, making it permanent 3 years ago, he is happy with his quality of life and enjoys helping others with their health journeys. When his health cooperates, he enjoys triathlons, hiking, climbing, skiing, and more. Find Brian on Twitter @BrianIIF.