Travelling Despite a Chronic Disease – Personal Story
This is the story of a 30-something woman travelling the world despite one significant chronic disease and a few additional health issues.
The present article depicts my personal health odyssey, paved with lots of obstacles which did not prevent me from travelling the world. And I intend to keep it that way.
It contains some medical information to give you a decent background of the diseases (and their addendums) I'm battling daily.
The main ones are Ulcerative Colitis, an inflammatory bowel disease, and lipedema, a metabolic disorder. If this doesn't concern you, you should still read on if you struggle with your health, as some information is helpful in various situations.
Also: it might inspire you to let go of a possible fear of travelling that your health issues might induce.
So here's my story of travelling despite a chronic disease!
Good to know:
A word of caution: Even though I'm not showing anything frightening, some pictures might be disturbing.
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The Beginnings: A Normal Childhood
I was a pretty healthy kid. No major health problems; I was fortunate. And look at how cute I was! I had cried right before the picture was taken, but still.
The only thing that bothered me - and consequently my parents, as they had to care for me - were a few digestive problems. Nothing too bad, just stomach cramps regularly.
There was this one time when it got so bad my parents had to rush me to the emergency, suspecting appendicitis. I had to stay at the hospital for a few days for observation.
But it turned out to be a false alarm, and up until much, much later, we never knew what caused those awful cramps.
Adolescence And Unusually Heavy Legs
Fast forward to when puberty hit. The moment I went through a bunch of hormonal changes, i.e. menstruation and birth control pills, I put on a bit of weight.
Naturally, nobody suspected anything weird as this is a natural thing to go through as a young woman.
I wasn't worried that I had a rather unusual weight distribution, i.e. a slenderly built torso with a nice, flat belly and at least two sizes larger from the waist down.
It didn't seem weird either that I had no visible ankles. Or that there were sometimes painful "lumps" where those ankles were supposed to be.
My mom used to say, "Those are your grandma's legs". That this was just something inherited, nothing more.
Little did she know that it was indeed more. Until a few years ago, when things got pretty obvious.
But I'm getting ahead of myself here. Let's back up to my student years and the start of inexplicable stomach aches.
The Start Of A Medical Odyssey
University Life
It was my last year at university. Until then, I had the usual body reactions when alcohol and bad food were involved.
Which happened occasionally. And by occasionally, I mean more often than I would like to admit.
I was a busy bee during my studies. Still, I also enjoyed the incredible student life Louvain-la-Neuve had to offer. I re-did my first year as this new life was overwhelming, and I got carried away.
But aside from that failed first year, I nailed my studies and graduated magna cum laude.
Anyways, that last year at university, I started to get heavier reactions to food I used to tolerate well before.
Me (right) and my best friends in full-on student mode
Painful Stomach Every Morning
Since I woke up almost every morning with cramps, I had to consult a specialist someday. So I went to a local hospital where I had the first of many colonoscopies. The procedure per se wasn't that bad, but the preparation was dreadful.
Conclusion: irritable bowel syndrome. Basically, the doctors told me to pay attention to what I ate and get on with my life.
Keep smiling - especially when you're scared
Finally A Diagnosis: Ulcerative Colitis
It took another two years with diarrhoea and bloody stool to find a doctor in my home region, the very east of Belgium, who finally named the disease I had been carrying for a while: Ulcerative Colitis, one of the two primary intestinal bowel diseases or IBD.
If you are unfamiliar with these diseases, I briefly explain them in my post regarding travelling with IBD.
Ulcerative Colitis is the sister of Crohn's Disease, which is better known.
It's a chronic autoimmune disease, causing your immune system to mistakenly attack harmless stuff like food.
The symptoms: Bloody, mucous stool and frequent diarrhoea, accompanied by a general state of exhaustion and joint pain.
Treating Symptoms, Not The Cause
Focusing on IBD symptoms: this had become my life back then. The doctor who first named the disease wasn't a bad one. But he treated the symptoms, not the actual condition.
Meaning I took a considerable amount of corticosteroids over a few months.
While it helped with my body's inflammatory reaction and slowed the bowel movements, it didn't do anything for the general fatigue or the blood. And it brought a few nasty side-effects like troubled sleep and constant nervousness. I developed anxiety as well, and my muscles seemed to be disappearing.
On the other hand, thanks to the medication, I could go on a honeymoon that same year. The corticosteroids did what they were supposed to do, as I was able to travel despite my chronic disease. And eat terribly greasy food because our honeymoon was a road trip through the United States.
Finally Focusing On The Condition
"Corticosteroids?" Prof. Van Assche asked when I had my first appointment at the UZ Leuven, "you will never retake those."
This was in 2014.
For the first two years, I went through an entire food odyssey with Ulcerative Colitis, testing various diets to see which one suited me best. It was a trial and error phase because there are no general rules; every UC patient is different and has to find out what works and what doesn't.
To me, the most challenging thing about getting diagnosed with Ulcerative Colitis was to accept the disease. Accepting that I would have to live with it, that it's something you can't heal from (yet), and that I had to slow down, adapting to my struggling body. And thus: cut back on travel.
No matter how long you've been symptom-free, a chronic disease can always surprise you with a severe flare-up.
Genetics and mental state
It has to do with genetics, apparently. You are born with the disease, only it breaks out much later, during adulthood. The main reason you need a proper treatment is because permanent inflammation can cause cells to develop into something cancerous.
Of course, there is a mental part as well: most flare-ups occur when something weighs very hard on you psyche. For me, that was frustration in my previous job, which I ultimately quit.
Fast forward to 2018 when I am finally what they call "in remission". Meaning: I don't have diarrhoea, nor blood in my stool samples and I'm feeling fine.
And between the very first diagnosis and now, I can say that I've traveled the world quite a bit, despite having a chronic disease.
Finding the right treatment
The reason I could still travel was because at some point, I found a treatment that actually tamed by rebelling guts.
But it took around 6 different Ulcerative Colitis treatments to get to that point
Some didn't work from the beginning, others didn't perform well enough to be covered by the health insurance companies. There is some really effective but overly expensive medication on the market and, sadly, health has a lot to do with business.
Anyway, the last treatment for which I had to get an infusion at the hospital every 8 weeks, finally did what it was supposed to do: my symptoms practically disappeared.
Three hours, every 8 weeks
Healthy at last ... or not: Lipedema
Yay, I'm was (seemingly) healthy again!
Haha! Nope!
Like they say: when it rains, it pours. In this case chronic diseases.
Remember when I talked about my heavy legs and lumpy ankles here? Let me introduce yet another disease called Lipedema: a chronic metabolic disease that causes your fat cells to enlarge abnormally.
Wanna know why it sucks that much?
No diet or exercise can change or prevent it from getting worse. And it's painful. You bruise SO easily and your joints are constantly swollen.
Not some normal genetic leg-form
So, yeah. My heavy legs were not "normal" like we initially thought when I was a teenager.
Only we didn't know until my cousin, who also seemingly had what my mom had called the "Guerenne-legs" (no surprise here, we share that specific set of genes from my grandma), had a very bad flare-up of that particular disease.
She went from being a super active spinning-instructor to not being able to do long walks anymore. I can't thank her enough for pointing out that I might have the same disease.
Lipedema and prejudices
This was another disease that was hard to accept. And hard to talk about.
The reason I started this blog in the first place was not only to inspire others maybe struggling with their health to push through and try to make the most out of their lives anyway, but also to break with certain taboos on these kinds of diseases.
For the Colitis, I had to learn to openly talk about poo, mucous and bloody stool.
For the lipedema, I had to deal with the prejudices people have. Non-informed reactions are saying things like "you should exercise more", "try this/that diet", "cut back on that/this".
Yes, there are lipedema-patient also struggling with overweight or even obesity. But saying that this is purely due to "their own laziness" it so wrong.
The pain you feel in your limbs and joints is sometimes excruciating. So you stop exercising. Naturally, you gain weight. The pain gets worse. You move even less. It's a vicious circle nearly impossible to break, especially when the disease gets never diagnosed. And it rarely does: 1 out of 4 women (!) is affected. But only a third of them will ever get treated.
Four stages of pain
Because you see: there are four stages. I was somewhere in-between stage I and II, meaning the bruises and swelling were there, but the pain was still bearable.
And above all, it wasn't too late to act. Stage IV means, you are basically chained to a wheelchair because walking alone is too damn painful.
Source: LipoClinic Dr Heck
Decongestion therapy: compression garments and drainage
I went to a phlebologist to get the confirmation that I was, in fact, suffering from Lipedema. I was pretty bummed to hear the diagnostic but at the same time relieved because that explained why I couldn't loose weight during my teenage years (at a point that I risked developing an eating disorder), no matter what I did.
And remember that I wrote about my major colitis flare-up before getting treated in Leuven? Well, I lost about 15kg in roughly two months. Only, my legs barely changed. I felt this was weird back then but didn't think about another underlying reason than bad genes.
Both chronic diseases are apparently related, by the way. They started doing extensive research on this in Leuven a few years ago.
I started with what they call the "conservative therapy": flat-knit compression stockings and manual lymphatic drainage at least twice a week. This is something you're supposed to do your whole life.
Your. whole. life.
Wanna know something funny (not)? It doesn't even prevent major flare-ups, it just slows down the progression a little bit and can help to reduce the pain. No way that this was going to be a long-term solution for me.
Painful surgery
Surgery is actually the only really effective treatment for that nasty condition. So that's what I did: one very painful surgery on the lower legs, one slightly less painful one for the upper part.
It's a form of targeted liposuction where they remove the sick fat cells. It hurts. So much. Each surgery took a few painful weeks to recover.
Also, I always get suuuuper sick from anaesthetics. Apparently, when you have a sensitive stomach (I get car- and seasick quite easily), that's usually the case.
Another downside is, of course, that you're left with a large number of small scars. But I have bad tissue anyway, so I have scars all over my body.
The upside: I can do things with my legs again that, up to the surgery, were not possible anymore. Like exercises with a lot of jumping movements. Or Flamenco. No pain in my ankles and I can wear boots again! So yes, it definitely worked for me.
But there are still a few negative things: because that kind of liposuction has only been performed for around 10 years now, they don't know if this will prevent any new flare-ups. Long-term studies are missing.
That also means, that the majority of health insurances won't cover the cost - yet.
I want to be brutally honest with you: it cost 10.000 € for both surgeries. And it will probably take another 5.000 € for both arms as they are affected by the disease as well, only at a much slower pace.
WARNING! Quickly scroll down below the pictures if you are sensitive to the sight of blood!
If you want to learn more about Lipedema, its symptoms and therapy: click here. This is the clinic where I had my surgeries and I completely trust them with the information they provide.
Next surprise: oh, what's that on your trachea?
A few days after the second surgery, I experienced a panic attack because I had trouble breathing normally. It felt like I was suffocation.
At first, I thought this was related to my allergic asthma that a pulmonologist had diagnosed a few years early (yes, I'm also slightly asthmatic). But this was different, I couldn't breathe properly.
Pulmonary embolism? No.
Because Lipedema-patients are prone to experiencing DVT (Deep Vein Thrombosis) that can cause pulmonary embolisms, I was rushed to the emergencies.
Here they x-rayed my chest and kept me one night for observation. The next morning, a doctor came to visit me and here's what he told me:
"Your lungs are fine, nothing to see there. Oh, but I got you an appointment with our oncologist because we saw a 'mass' pushing on your trachea"
Cool! Wait.. what? Why an oncologist? What sort of mass? But he was already out the door and left me completely bedazzled.
Activity on the PET-scan
So I went to see said oncologist who sent me to another hospital to get a PET-scan. You know, the kind where they inject some radioactive stuff to see if you have living cells multiplying at a high rate, like cancer cells.
Well, the scan showed some activity. Still doesn't tell you if cancer or not. And I can already tell you: it was not, so that was awesome!
But at that time, I didn't know it yet and it took another two months and two biopsies to be sure that it was benign.
I spent that time thinking about what my future would look like, doctors prepping me for what treatments I would endure if it turned out to be malicious. Telling me things like 'you should think about whether you'd prefer a wig or scarves once you're going bald'.
"You won't be able to travel for a long time (despite having basically fought for that with my other chronic diseases - bummer!)" is what the doctors said.
Cutting my throat: the mediastinoscopy
The second biopsy was a rather traumatic experience as they cut into my throat to extract a sample, performing a 'mediastinoscopy' (Wait! Don't click on the link if you don't want to be traumatised!).
It left me with a heavy suffocation-sentiment that lasted for weeks.
Ever since that surgery, I can't have anything covering my face without experiencing a panic attack. And I am super aware of my breathing all the time, checking if there is anything abnormal about it. I have tried hypnotherapy to get rid of that feeling but it didn't help.
Oh, and also: I get sick very easily! Usually from the anaesthesia (happened after the leg surgeries as well) but this time from the morphine they gave me as I was in so much pain. Try throwing up while having a severe cut on your throat - burns like hell!!
Little side-note here to my lovely mama. She stayed with me at the hospital and took care of me the whole time. Even though I was already 30 at that time, I felt like a scared little girl and I really needed her by my side.
Read also | How to avoid getting seasick: the solution?
Wishing for 2018 to end
Both leg surgeries and the biopsies for my suspicious 'mass' (which is still there, by the way) happened in 2018.
And in autumn that same year I got divorced. Needless to say I was glad when that year was finally over. Although I had a really cool and rememberable city-trip to Copenhagen with a lovely friend during the winter of 2018.
On New Year's Eve I met Sebi in Dublin and my life got so much better all at once.
Poor guy had to wait for me though, as I had planned a four-week-solo-trip through Patagonia in 2019. I also left him alone while I was exploring Easter Island.
But he was patient and just so glad once I was back.
The world-trip
Starting to make plans
Despite having a few chronic diseases, it never stopped me from travelling. Sure, it requires a bit more preparation than for someone with a completely healthy body.
But it's doable. That's why I created this particular travel blog: to inspire others with the same or similar health issues to look at ways to still realise their dreams.
In autumn 2019, after having spent a beautiful vacations on Malta and Gozo, we decided to plan for a trip around the world. The doctors at UZ Leuven were very supportive. They provided yet another treatment, one that I can administrate myself with injections. Just to be sure that I won't be experiencing another flare-up while somewhere in the jungle in National Park Tortuguero, for example.
Only downside of that new treatment, the medication has to be kept cool at all times. But if you read the linked article: it worked.
Word-trip on hold: Corona
Everything was ready: my replacement at work signed a contract, I myself signed off both my car and my flat.
That was March 2020, the year we were supposed to take a whole year to travel around the world, despite all the chronic health issues.
Instead, we spent the first lockdown in Austria because of Covid-19. And we started to throw away our whole original world trip plan. It was quite frustrating not to know how long this whole situation would last.
Who'd have thought that this virus will be part of our everyday lives from now on?
Road tripping through Europe
As soon as the situation started to get better thanks to the sunnier weather, we embarked on a road trip through Europe, starting in Western Austria to get to know Sebi's home country.
Then we discovered a destination we never had in our plans: the beautiful little country of Slovenia. Then we drove down the coast of Croatia, exploring Pula, Split and Dubrovnik.
After a quick stop in Italy to have a look at the Sassi di Matera, we took a ferry to get to Greece and were in awe with the Meteora Monasteries. We marvelled at Santorini's epic sunsets and discovered hidden gems in Crete.
Leaving Europe
By the end of September, central America was seemingly doing better with the crisis and that's when we (rather spontaneously) flew off to Costa Rica in October and we stayed away from Europe for more than six months.
Read also | 10 days in Costa Rica itinerary for epic trips
From Costa Rica, we went to Mexico where we visited a friend and explored the authentic centre of the country. That's when we heard that Peru was re-opening to tourists! So we headed to Cusco and experienced incredible things like Machu Picchu without mass tourism and the flight of the majestic condor during a Colca Canyon tour.
The original plan was to fly home for Christmas to be with our families. But because our respective home countries Austria and Belgium were in lockdown anyway, we decided to have a Caribbean Christmas and New Year in the Dominican Republic. We were supposed to meet another friend of mine from my time at the university during these holidays but that too got cancelled due to Covid.
We managed however to hop to New Orleans for a short week where she has been living for the past four years - it was so cool to catch up and to visit that really cool city, even though it wasn't the same without all the people.
Next up was Belize, a small but truly fascinating country that left us longing for more. And from here, there were not many choices and we took on a long journey to reach French Polynesia, one of the main highlights of our trip.
Then it was time to head back towards Europe - due to Corona, the only flights leaving from French Polynesia went to Paris, France. But before definitely going home, we went backpacking in Jordan for a few weeks where we explored the inside of Petra and went on a Wadi Rum camp adventure.
Travelling despite a chronic disease
It's not easy, it requires a certain level of determination - or stubbornness - and a lot more preparation. But it is possible. Of course it depends on your health issues, the degree of them, the symptoms you deal with and so on. I myself have had different phases of the disease, some easier, some harder. But I still went on at least one longer and a few shorter trips every single year since the diagnosis.
I did have some misadventures i.e. having severe diarrhoea at moments where I really couldn't enjoy the country I was currently visiting. But that didn't keep me from trying again. And again. And again.
Every person is different. But if travelling the world is your dream, you shouldn't let a chronic disease hold you back. Instead, try to explore every possible way in order to find the best feasible options for you personally.
I hope my story could inspire you a little and feel free to comment or send a message with questions, suggestions, remarks or whatever you feel like!
Also please don't hesitate to pin and share for others to see.
As ever
xx
Cyn
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