She has Crohn’s disease, but Crohn’s disease does not have her.
I have suffered from Crohn’s disease for 20 years of my relatively short 32 years. I have had multiple surgeries, dealt with medication side effects, been debilitated by joint pain, sported a temporary colostomy bag and had the pleasure of experiencing random and beautiful spells of remission. The disease has run its gamut with me. My daily life is affected by this chronic monster, but I have learned to manage it, sometimes even gaining the upper hand.
Having Crohn’s disease and leaving the safety and comfort of your daily routine can be a physical and emotional challenge. Putting yourself in unknown environments and situations can leave you vulnerable to dreaded moments. All you Crohn’s sufferers know exactly what I am alluding to, I’m sure. But my belief is that in order to gain the upper hand in the battle with Crohn’s, you must not let it control or limit you. On the contrary, it’s about taking control and setting your own limits and boundaries. Anything is achievable if we want it bad enough, right?
My parents instilled the travel bug in me and my siblings early. My first trip was at the ripe age of two, and I have been hungry for more of that experience ever since. I’ve wanted it badly enough and, against whatever odds, have made it happen. I’ve been to Scandinavia, several other countries in Europe, South America and Africa. I have travelled hundreds of thousands of miles by car, train, plane and foot. I have enjoyed the cuisines of many different cultures, sipped on wine from around the world and learned the word “bathroom” in countless languages.
I have Crohn’s disease, but it does not have me.
I was married to my life partner, Shauna, in October of 2009. We began planning our honeymoon immediately, deciding to make it the trip of a lifetime as opposed to the typical sun-drenched week on white sand. She had been studying wine through the International Sommelier Guild, so it seemed appropriate to head through the very vineyards she was reading about. The trek would start in London and end in Paris, with stops in the following places: Brussels, Cologne, Rhein Valley, Strasbourg, Prague, Vienna, Venice, Florence, Chianti Classico, Rome, Cinque Terre, Nice, Burgundy and Champagne.
The plan was to travel by train with the occasional adventure by car. We prebooked all our hotels to minimize stress and give us a soft place to land at the end of every day. Shauna and I had both worked in the music industry for years, so planning a tour was a piece of cake!
We bought our train passes, printed out our itinerary, packed the GPS and used up our air miles to purchase the tickets. We were prepped and ready to go.
Now, as a Crohn’s disease patient, there are key tips for travelling abroad. Simple things to keep in mind to help you overcome the daily challenges of this illness and avoid unpleasant situations. Here are a few things I have learned over the years:
- Plan ahead: When planning your day, always know how long travel time will be. Make sure there are enough stops with bathroom access along the way, and plan your meals to accommodate your schedule. If you have a four-hour drive ahead of you, perhaps eat a light meal before you leave and plan to eat your feast when you arrive.
- Always know where the closest bathroom is: When you enter a museum, a gallery or a park always ask where the restrooms are so you don’t find yourself at the wrong place at the wrong time.
- Hydrate: Given that most of us have less than the normal amount of colon, or none at all, we don’t absorb water as well as we should. We often dehydrate quickly, and this can affect us in so many ways: pain, fatigue, headache, bad moods, etc… So always pack your own water and replenish it often so you are never left empty-handed.
- Carry snacks: Low blood sugar leaves us fatigued, on top of already feeling fatigued in general. Carry snacks in case you don’t get a proper meal when you need one and on the off chance you can’t find food that will agree with you.
- Comfort over fashion: Make sure to be as comfortable as possible. Fly in sweatpants. The last thing you need is a pair of pants whose waistband digs into your gut over a long flight or train ride.
- Rest: It’s great to see as much as you can when travelling in a new place, but pacing yourself is more important. If you push too hard you could ruin the whole vacation. Sleep in if you need to. Even if you see less, the experience will be pleasurable.
There are many other tips and tricks, but these six have come in handy for me on numerous occasions.
For this particular cross-Europe adventure, there was a new challenge I hadn’t faced in my previous travels. It was the introduction of a new Crohn’s treatment called Humira, an immunosuppressant used to treat the disease via weekly or biweekly self-injections.
Humira had been working wonders for me. (This is in no way a plug for Humira or the pharmaceutical company. It’s simply an account of my personal experience.) In the midst of a flare-up I had gone to see a new specialist, Dr Brian Bressler at the Pacific Gastroenterology Associates’ clinic in Vancouver (where I am blessed to live). Dr Bressler is a Crohn’s specialist involved in groundbreaking research who has had a ton of success treating select patients, me included, with Humira.
So here’s the catch: Humira must be refrigerated, which isn’t a big deal in daily life, but it becomes an issue when travelling. Well, at least I thought it would.
The company that makes Humira has a patient-assistance program called Progress. They contact you when you start treatment and send information, DVDs, disposal containers for syringes, dosing calendar reminders and travel bags. They also provide the number of a hotline to call if you have questions or concerns. Most impressively, they help you through the process of applying for financial assistance through the government (in Canada). Overall, it’s a very positive and useful resource for patients using Humira.
So, when I was trying to figure out how I would carry around my refrigerated Humira from city to city, Progress offered the solution — a specially designed bag with side-by-side sections for syringes and ice packs. I went online and found long-lasting (24-hour) dry-ice packs.
Then there was the issue of airport security. I got a letter from my doctor and a printout of my prescription from the pharmacy. When I walked up to security, I alerted them to the syringes in my carry-on and handed over my documents. Not a problem! Diabetics do it all the time. The documents I had stated clearly that the meds had to be kept refrigerated, so that excused my surpassing the allowable liquid quota — and away we went!
The next hurdle was refrigeration. At each of our hotels I had to be sure our room had a mini-fridge to keep the syringes cool, and I had to ask the staff to freeze my ice packs overnight. When there wasn’t a mini-fridge available, I had to entrust my meds to a staff member and give them a stern lecture on the gravity of the situation if they were to fail me. In all six weeks, there was only one incident, in Germany, where the meds were left on the counter for a couple of hours. Luckily the drug has a little bit of give and there was no concern in the end.
I had originally thought that travel would be hindered by my Humira treatment, but honestly, it was totally manageable and completely worth the extra effort.
So if nothing else, my hope is that in sharing this little story, some of you who feared travel or doubted your ability to escape the comforts of home, might be reassured or even inspired to do just that. Whether it’s for a weekend away in a neighbouring city or gallivanting around the globe, I encourage you to tell your Crohn’s disease to take a back seat and enjoy the ride!
You can find Mavreen on Twitter @moetweets
You can check out Mavreen and Shauna’s full trip blog here.
Originally this piece was shared on Brian Greenberg’s Intense Intestines blog, which is a great resource and inspiration for folks with Crohn’s and other IBD conditions.Tags:BC, Crohn’s Disease, Europe, Health, Honeymoon, IBD, Mavreen David, Travel, Vancouver, Wellness