I’ve been meaning to write a post about this for ages. It is something that has changed me, changed our relationship and the way how we travel.
I started showing symptoms when I was 24 years old, just 5 months after I came back from backpacking Southeast Asia. After about a year and a half of terrible stomach pains and ulcers, going back and forth from doctors who poked and prodded, scanned and starved me, the Doctor’s finally gave me a diagnosis. Crohn’s Disease.
It didn’t happen from backpacking, or by putting my body into a new environment, but rather because I didn’t have any money upon returning, so I ended up working for this terrible company which packed on the stress. Yep, it came out with stress. Stress can be killer.
And since the diagnosis, the way I work, the way I eat, and especially the way I travel, has forever changed.
**Before you proceed below, please note there may be some graphic photos.
Let’s start here, what is Crohn’s disease?
Well, every person is different in how they feel, the symptoms they show, the diets they are put on, the medication they use and the way the doctors diagnose the Crohn’s. Let’s start off with general symptoms and the ones I was showing.
Fortunately for me, I have a mild case of Crohn’s (no illy bag but others aren’t might not be so lucky). My symptoms include:
– Extreme pain and pressure in both my upper left quadrant (so where the stomach and intestines meet) and my lower right quadrant (my colon, and generally where most Crohnies feel the pain).
– I would have 10 – 12 mouth ulcers at any given time on my gums, my tongue and my palette for the full year of no diagnosis.
– Crippling body aching pains where just getting up out of bed was one of the hardest things to do.
– Episodes of vomiting and extreme nausea.
– Rapid weight loss and minimal appetite. Like 11 pounds on 129. I got thin and I got thin fast.
– Diarrhea (and lots of it and at the worst times).
– My hair was falling out and noticebly thinning. It looked like there were just strings on my head. It made me feel really self-conscious.
– I was so extremely fatigued and felt so useless. Everyday tasks seemed to be so hard to get up and do. With the fatigue and achiness, I almost didn’t feel human anymore.
– Night sweats that would soak up all my clothes and my bed sheets. Like totally drenched.
– And with no answers for a full year, I put myself into a slight depression, crying every night, wishing for a diagnosis. Any diagnosis, really. I would stress myself out not knowing what was happening, going through hundreds of different tests hoping for some kind of answer. This was definitely the worst part, the unknown and feeling a bit crazy.
So that’s my story. That’s what I have been feeling.
But anyways, enough about me and my symptoms, here is what Crohn’s is in a sciencey way.
Crohn’s disease is an autoimmune disease that causes severe inflammation and obstruction in various parts of the gastrointestinal tract due to swelling and scar formation. It can cause problems like bowel perforation, abdominal swelling, severe pain, and fever.
Sounds like fun, right?
How I was Diagnosed:
I was feeling these symptoms for a year before we had a definitive answer. Through that year, I went through 2 MRI’s, 2 Biopsies, 3 Colonoscopies and Endoscopies, 16 doctors, 9 liquid diets, acupuncture and holistic therapies and a lot of shots and tests.
6 months prior, I backpacked Southeast Asia and got stitches in Vietnam, convincing my mom Vietnam nurses used unsterile needles and to be tested for HIV and aids. Yep, one of the scariest weeks of my life was waiting for that test back. So I got all these tropical disease tests too.
But finally, we got the answer through a pill camera. I swallow this pill, it goes all the way through my body, and out the other end while taking pictures on its way down. Ulcers and inflammation through all my intestines and colon.
But I got the best thing out of this test. An answer.
How Crohn’s disease affected my travels
– Since diagnosis, I have started my treatment called Humira, a biweekly immuno-suppressant injection. It comes wrapped in ice packs, packaged in a Styrofoam ice box.
Now here is the problem, I have to plan my trips thinking about how I can travel with my Humira – like when will I get my deliveries? How will I keep it cold? Where can I keep it cold? What if I go camping? What if they don’t deliver my injections in the country I am in? Where do I dispose the needles?
But that’s not all, there are a lot of things I need to think about/plan with Humira that can ultimately affect my travels.
– Humira also affects certain vaccines. We had the intentions to travel to Africa next year but I can’t take the Yellow Fever vaccine while I am on Humira. I must be off Humira for 3 months to then take the yellow fever and then start Humira once again a few weeks after. It’s unfortunate because I’ve really wanted to go to Africa, but we will figure out another way.
– Food is such an important part of exploring a countries culture for us and with Crohn’s, it becomes a bit difficult. I love to eat so to say I can’t eat something to get a taste of their country dishes, kind of sucks.
There are a lot of foods that can trigger a flare – spicy foods, dairy, gluten, steak, seeds, acids, alcohol, fried foods and the list goes on…. (unfortunately).
And you know what that means? Papaya salad in Thailand, or coffee at a coffee shop in Melbourne, or pineapple in Hawaii, or steak in Argentina, or wine in Tuscany. I can’t have those. Well, shouldn’t have them but sometimes I can’t help myself!
I love to try new foods when traveling, but at the end of the day, I know what my body can and can’t handle and I decide what is worth the flare (and it’s definitely not spicy food).
– Crohn’s can flare up due to stress, and when you travel, you are constantly changing your environments, finding the right foods, figuring out ways to keep your Humira cold, and always on the move. Which, yep, surprisingly can lead to stress. And you know what stress leads to? Yep, flares.
I like to call this an environmental stress, and although I love to move around and travel, Crohn’s does make me more tired and flare up more often than usual. When there are a lot of moving parts and uncertainties, travel becomes more of a burden than pleasure.
– My body hurts a lot more than it used to. Some days I can do an 8 mile hike with no issue and some days walking two blocks pains me. I now need a lot more rest and sleep between activities which I never used to.
– I can’t (and never really did in the first place) drink anymore. Alcohol has proven to be one of the worst things to trigger a flare and just 100% not worth it.
When you travel, drinking seems to be the easiest social lubricant and parties are an easy way to meet people (like the full moon party or tubing in Laos). But since I no longer drink, I don’t want it to make people think I don’t go out or that I am boring. (I know I know, I shouldn’t care about what people think. Thanks, mom…)
– My medical bills have been higher than ever. They say don’t stress or you will cause a flare up, but after $25k of medical bills of going back and forth to the doctors, how can you not stress? It could affect my credit score, I’ve had to start working paycheck to just to pay the bills, and plus $25k is a lot of travel I am missing out on. It sucks.
– Long flights and car rides haven’t been the easiest on my body. Those pooping episodes love to catch you off guard. Usually happens when there are no bathrooms anywhere close.
Also, did you know that if you have Crohn’s, you can sign up for a restroom card? I haven’t gotten one but the Restroom Request Card makes it easier to discreetly communicate your IBD condition and request access to restricted restrooms when unexpected symptoms arise.
– Speaking of the wonderful pooping issues, you never know where the next bathroom will be. Good luck!
How will I continue to travel despite my Crohn’s?
Crohn’s does not and will not define who I am and how I will travel.
In fact, I have taken this whole thing with a new positive light. For a full year, I was in and out of the hospital with no diagnosis, constant pain, and on the brink of depression. I couldn’t hold a job (because of all the job appointments), I hated being in public because I felt frail, ugly and sick, I always cried to Jack and felt like I just pushed people away because I was just sad all the time.
I couldn’t hold a job (because of all the doctor appointments and sick days), I hated being in public because I felt frail, ugly and sick, I always cried to Jack and I thought I just pushed people away because I was miserable and negative all the time.
I started questioning my relationship with not just Jack but all my friends. Why would people want to be around someone who is so unpleasant? I felt powerless. I was annoyed and frustrated there was NO answer. I felt like a lab rat.
And worst of all, I felt alone.
But traveling gave me something to look forward to. No matter how hard it rained, or how lost we got or had things stolen, I still felt so privileged to experience traveling to a new place.
At the end of the day, I was able to go somewhere not everyone gets to. I was able to get out of bed and see something new. I get to ride in a Tuk Tuk or swim in the ocean. I got to breathe in fresh mountain air. I got to taste pieces of different cultures.
I may have some difficulties, but not everyone gets to do and see the places I do. I’ve made this my priority and I won’t let Crohn’s stop me.
That year was one of the hardest years of my life, but now I get to explore the world, with my main man by my side and I love every second of it.
I can’t let a negative experience get to me (mostly because if I stress about it, I get a flare) but shit happens (no pun intended) and you just have to push through. If you dwell, you can’t move on. There is no point of throwing myself a pity party because 1. it’s a party for 1 and 2. crying and whinging about it won’t get me anywhere.
My gameplan for how I travel in the future is to take it slow and take it positively. I know I am bigger than this whole thing and that I have come a long way since. I am really excited to see what the future of travels hold for me (us!).
Tips for future travels with Crohn’s
– Talk to your doctor before you go. They might give you some medication that can help with any flare ups, indigestion, or discomfort. Immodium is always a good fall back but your doctor will know best.
– Always bring some extra toilet paper. Some flares and episodes will catch you off guard – you never know when you will need to go.
– If you are on a road trip, mark all rest stops just in case you need to go. Just note that there is a rest stop in the next X amount of miles north and south. It will put your mind at ease and help plan out any needed unexpected stops.
– Traveling is already exhausting for someone without a chronic illness. But since the whole Crohn’s thing, I find myself getting tired easier. Listen to your body, YOU know YOUR body best. Make plans that are flexible in case you need to rest, try not to overschedule things, and again, listen to your body.
It’s ok to take a break and it’s ok to take a day off.
– Don’t be afraid to reach out. One thing I have learned was that I am (unfortunately/fortunately) not alone. Having a support group there for you has kept me sane. I joined a few groups on facebook before I even had my diagnosis (just a research list of webMD possibilities with my symptoms).
I was going back and forth from the doctors so often and received the same response over and over – “Your blood work came out perfect!” “Your body is in great shape!” “We’re not finding anything wrong.” I felt crazy like I was making it up. These support groups had my back and helped me understand that it does in fact take time.
I even joined a humorous Crohn’s group that makes you laugh about the shitty situation. (Get it?) You already have Crohn’s so why not laugh about it?
– Keep a list of all foods that may give you a flare up. If you know spicy foods are no good, maybe try Pad Thai instead of the spicy papaya salad or eat chicken instead of steak. Keeping a list will help you remember which foods could cause a flare up and essentially cost you a full day of your travels. And no one wants that.
– Stick to bottled water, and if you can, alkaline water. Especially when you have stomach troubles, vomitting, and diarrhea, you need to keep hydrated. When you’re dehydrated, your body can’t function properly and you can ultimately lose a full day on your travels. Keep your body at a balance.
– Stress is unavoidable, but you can take control yourself by making time to relax and enjoy yourself. There are plenty of amazing relaxation techniques that can help reduce stress on your travels like (beachside) yoga, swimming, reflecting at a beautiful view point, and listening to music.
– Make sure you take your medication. Just because you are feeling good for at the moment (maybe you just went skydiving and you are on some euphoric feeling), you should still always take your medication. That is the reason you are still feeling good. Also, along with the meds, keep your diet in check.
– Depending on where you are traveling, you may need to get a vaccination to protect yourself from certain diseases that are more common in that area (like yellow fever in Africa). You should always consult your GI before doing this and make sure to plan this well in advance as you might need to get them as far as 8 weeks before you plan to travel.
– Don’t let anyone tell you how to handle your Crohn’s (apart from your doctors). You know what you can handle, you know what works for you, “my friend has Crohn’s and he uses…” no. It’s you and your body.
**I am not a doctor, I am just telling you about my personal experiences with Crohn’s and how I have dealt with it. Please consult a doctor before doing anything.
Other inspiring travelers who travel with chronic illnesses:
– Anna Everywhere – Reynaud’s syndrome
– Wayfaring Sarah – Fibromyalgia, Endo, IBS, GERD & Hypermobility syndrome.
– Probe Around the Globe – Crohn’s
– The Katie Show Blog – Endometriosis