The Day I Had To Accept My Ulcerative Colitis

"You have a chronic condition called Ulcerative Colitis. I will explain in detail what this disease is and does to you, but the first and most important thing to do is accept it."

That's what Prof Van Assche from the renowned UZ Leuven hospital told me during our first encounter.

After I did a brief roundup of what kind of treatments I had gotten so far, the next thing was: "No more steroids. Ever!"

I had been battling Ulcerative Colitis for a few years without knowing the actual name before finally mustering up the courage to try another hospital.

Countryside Hospitals & Misdiagnoses

First Symptoms Showing

Here's the thing: I grew up in a small 300-people town in the East of Belgium. So while we have a hospital nearby, it's relatively small. And specialists are hard to find there.

Ulcerative Colitis is an autoimmune disease, meaning I was born with it. But it didn't cause significant problems until my early adulthood. I probably had a first flare-out during my studies already, but I wasn't aware of it and had associated the symptoms with bad eating and drinking habits that I had back then.

First Colonoscopy & Corticosteroids

So I went to my GP first, as I always did. She prescribed some probiotics but, this time, told me to consult a gastroenterologist as well, which I did.

Because I never knew anything other than the hospital in my home region, that's where I went. I had my first (of a long series of) colonoscopies here, and the diagnosis was severe colon inflammation.

The doctor's conclusion was: "Irritable bowel syndrome. Pay attention to what you eat, and you'll be fine."

I got discharged, and that was the end of it.

Only, of course, it wasn't!

The following doc I saw (still in my home region) prescribed corticosteroids, and while these helped calm down the symptoms, quitting was complex. And once I did, it caused my heaviest flare-up yet.

Long story short: I finally switched hospitals and ended up at the UZ Gasthuisberg Leuven (Belgium).

Read also | Traveling Despite a Chronic Disease

The First Correct Diagnosis

Back to the beginning of this story.

So here I was, sitting in this small office space in one of the biggest and best hospitals in Europe, and this doctor was saying that I had to accept a chronic disease and that I would have to live my life differently from now on.

My initial reaction was a blend of anxiety, panic, and frustration, sprinkled with anger directed towards my body for letting me down.

Then I cried.

Figuring Out How To Slow Down

Humans are creatures of habit. So naturally, anything that comes in the way of what we are used to freaks us out. And so when someone tells you, an active, creative 20-year-old girl who dreams of exploring the world, to slow down, it sucks.

It is one of my most annoying traits: I get restless when forced to rest. I hate being sick. I hate lying on the couch, not being able to do anything. I get nervous and have to get up. I can't just spend time in bed doing nothing.

But I had to learn to do just that.

It took a lot of hospital visits, nasty flare-ups of my Ulcerative Colitis that struck me down and had me bedridden for days at a time, some intense psychological following and a few ugly anger bursts to come to terms with my disease.

Not Very Acceptant Yet

The most frustrating part? I tried to slow down, eat healthily, and not stress. But this disease is unpredictable; sometimes, a bad episode would catch me off guard while I was confident I was doing everything right.

But maybe I wasn't? I remember that I passed the state examination for a government job in Luxembourg during the months that I had one of my worst episodes. A preparation of several weeks and an exam that lasted about ten hours.

I remember having a paper from my general practitioner to certify that I had a chronic intestinal disease to be allowed to use the restroom outside the official break times.

It was a time when I had diarrhoea and heavy cramping every day—a time when I was fragile thanks to my body not retaining any nutrition, a time when the only foods I could stomach were biscuits and mashed potatoes.

Looking back, I am incredibly proud of myself and my strong head for having battled through. Not only did I pass that exam, but I also did so well that it caught the attention of my future director. Unfortunately, they didn't have a spot for me yet.

Still, I was invited to an interview, resulting in a position specifically created for me at the institute where I currently work.

But it was still a significant additional stress factor for my body. I am so glad I did it, but I also know that if my doctors at the hospital had caught wind of my plans, they wouldn't have been very supportive.

It ultimately all turned out well, though.

Accepting Ulcerative Colitis: Family & Friends

Another aspect of the acceptance path concerns the immediate surrounding of a patient with IBD.

It wasn't only me who had to accept the disease. It was my then-husband, my family and my friends.

Finally, there were the coworkers from whom I kept it secret until problems started to arise, and I was blamed for things related to my disease but interpreted differently. That was another stressful period that ended up with me finally leaving my job at the time and passing the previously mentioned state examination in Luxembourg (again: best decision!).

Ulcerative Colitis & The Partner

Even though our relationship ended badly, my ex was supportive back then. At least to a certain extent. But it certainly put a strain on us, me being sick all the time, having to travel to the hospital (about 1h45 drive one-way) regularly, and being moody and angry with myself and the world.

It was challenging. However, it wasn't what wrecked our marriage either, to be honest.

Today, I am in remission. But I have occasional outbursts of the disease, harrowing ones where I lie on the floor, screaming from pain. They last a few hours but only happen every other month or so.

My current partner Sebi (my rock, my everything) never saw me during my worst time, when these outbursts occurred almost every day. Though I know he will be there should it worsen (knock on wood!). He is the sweetest, most caring soul I've ever met.

Even though the appointments at the hospital that I have now are regular check-ups, he drives me every single time just because he wants to be there for me.

He plans his work schedule around these appointments, and he would never have me go alone to one of them because he considers the UC his problem as much as mine. We're a team.

Ulcerative Colitis & My Family

Everyone's Support

When the problems started, I didn't talk much about them in the family. But once I did, people were naturally concerned.

My parents accompanied me to the hospital from time to time; my dad made freezer-compatible meals that I tolerated well (my ex wasn't much of a cook, and I was too weak to do it myself).

Even my grandma switched to gluten-free flour and lactose-free milk and butter for her cooking while I was still testing my food tolerances.

Everyone did their best to help during the episodes.

The only (minor) downside is that people forget quickly. And especially since I am in remission, everyone in the family seems to have forgotten that I am still battling this disease and that it can be tough on my body, even without constant diarrhoea.

So they expect me to be present. And sometimes can't help but show their disappointment when I'm not. So that hits hard at times.

Chronic fatigue is real. The vision troubles (a side-effect of the UC), the joint pain, the rashes (a side-effect of the treatments), and the fear of it all coming back are all very real.

The Issue With Travelling Much

After my first major flare, that's also when I started to focus on travelling, living the day and planning less for the future. I don't know what kind of future I'm going to have. Nobody does.

But, statistically, for me to stay reasonably fit until well into my 80s (like my grandparents currently are - bless them) is unlikely. And I am well aware of that.

So it's not easy for my family to understand that I put my hard-earned money into travelling now instead of saving up for a house and my pension later. I don't even know if my body will last that long. I hope so, but I don't want to rely on that.

This creates tension with my family from time to time, but we get through it, and ultimately, they always respect my decisions.

Like they did when Sebi and I announced that we were going on a world trip for a whole year. There were lots of discussions, arguing, and even a bit of yelling at first.

But it turned out to be the best experience both of us had, and my family was just happy that we managed to get through it without significant scratches (they don't know what really happened in Costa Rica, only that my phone ended up stolen).

Ulcerative & The In-Laws

Good Genes

This is a painful one, and it involves the (still ongoing even though people seem to have forgotten) Covid19-pandemic.

Being classified as 'highly at risk' thanks to my lovely Ulcerative Colitis, asthma I got as a side-effect from another one of the treatments and the current meds that artificially slow down my immune system, it was difficult being suddenly exposed to such a dangerous virus.

First and foremost, Sebi's parents are delightful, and I couldn't wish for better in-laws.

But we don't always see eye to eye when it comes to health and science.

Let me explain: Sebi's family members all have great genes. As a result, they are hardly ever sick, and nobody has ever had significant health issues (talking about the immediate family, not the extended one).

Clearly, they haven't dealt with the things I have.

So when the pandemic started and we were quarantined in Austria during the first lockdown, there were some clashes. They believe in "thinking good thoughts" and eating weird herbs. They hardly accept anything modern medicine preaches.

Modern Medecine in The Era Of Youtube-Academy

I, on the other hand, am a scientist. I think like a scientist and trust modern, evidence-based research and medicine. And I especially trust my doctors at the hospital since they practically gave me back my life. With the help of what? Right; modern medicine and treatments that are developed based on scientific research. Not homoeopathic globules. Not teas and dubious powders and such.

The term 'vaccine' is taboo inside their household (but taking toxic dewormers is okay), and in their opinion, you are only sick when you think you are sick.

It took a long time for them to understand what the pandemic meant to someone like me with a malfunctioning immune system. And they still haven't understood it entirely.

They didn't comprehend that there were things they could do to protect me and acted pretty selfishly at times.

But for the sake of peace (and I can't stretch this enough: I really love them!), I just decided to stop arguing.

The solution now is to avoid broaching the subject when visiting. There are just some things now that will remain unsaid.

I am confident that this pandemic will be over someday. And while we can't forget everything that has been said and done, they are family, we love them, and we'll just take precautions whenever we're visiting.

Ulcerative Colitis & Friends/Acquaintances

I also had similar clashes with friends or at least acquaintances and with a few other people in my extended family.

For my own sake, in my mind, I labelled them as selfish and ignorant and practically crossed them out of my life. And you know what? I feel a lot better that way! These were relatively toxic people anyway, something I didn't want to see until then. So in that sense, the pandemic opened my eyes.

I now know my faithful and loyal friends, and I don't need more.

Tips For Accepting a Disease Like Ulcerative Colitis

Read!

The more you know about the disease you are stuck with for the rest of your life, the better. Knowledge is power. And that's also valid for chronic diseases.

It takes the fear and allows you to look at it more rationally. Instead of panicking about what it might do to you, knowing it will enable you to act accordingly.

Be Patient

Being patient is crucial in the process of accepting a chronic disease.

Be patient with yourself. But also with your immediate surroundings, your partner, family and friends.

Be patient, too, with your medical team. Mine is fantastic, and I couldn't ask for better. But there are also many doctors out there who mean well and try their best with the amount of knowledge they have.

Feel free to do extensive research and then take these bits of information to your doctor. See how they react.

Find a Medical Team You Feel Good With

If you are ever in doubt, see someone else.

If you suspect they only focus on the symptoms, see someone else.

If they dismiss your disease as trivial, if they diminish it, see someone else.

To accept it, you need to be medically well-surrounded.

Talk About Your Disease

This is also a very critical one. Don't hide your disease.

Yes, there still is a certain taboo on bodily functions that should be considered normal. For example, people still cringe at the thought of diarrhoea.

But a disease like Ulcerative Colitis comes with this and many other unattractive features. So not talking about it doesn't make it go away.

And talking about it, especially when it's not going well, helps to accept that you have Ulcerative Colitis.

And this, in turn, helps to deal with it.

Linked to this:

Find Fellow Sufferers

Find groups and people battling the same disease.

Nobody understands you better than a person struggling with the same symptoms.

Here again, communication is vital. Of course, what works for one only sometimes works for another. But the exchange is still essential.

Get Creative

Here's another idea that can lead to accepting a disease like Ulcerative Colitis: be creative.

Are there specific hobbies you fear you might not be able to do anymore? Please don't give up on them. Instead, think about ways to adapt to these hobbies. Don't give them up entirely; there is always some way around it.

My biggest fear was that I couldn't travel like I used to.

But isn't this blog proof that this isn't the case?

Here are but a few examples of 

If you landed here, chances are that this is precisely what you want to do: travel despite a chronic disease. But you're scared and have no clue how to do it.

Then check out the articles below and let me help take some of that fear.

If you landed here, chances are that this is precisely what you want to do: travel despite a chronic disease. But you're scared and have no clue how to do it.

Then check out the articles below and let me help take some of that fear.

Here are but a few examples of what I did in the past three years alone:

Accepting an Illness Like Ulcerative Colitis

Accepting a chronic illness like Ulcerative Colitis takes time; it doesn't happen as soon as you get diagnosed.

And even once you have accepted it, that doesn't mean you won't feel discouraged now and then. I still sometimes get outbursts of anger when a flare-up occurs at the worst possible time. And then I think how unfair it is that I was born with this disease.

Then there are also times when I am just grateful that I can still live a relatively normal life with adjustments. I take it gladly if this is the worst that can happen to me.

Accepting Ulcerative Colitis is a process, a constant one. Don't be too hard on yourself when you feel down. Just remember to get up again.

I hope this post helps you to not feel alone in this situation. If you have any questions or remarks or need some comforting words, feel free to comment or message me.

Also, please pin and share this post to serve others.

As ever,

xx

Cyn

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