Travel And Ulcerative Colitis Treatments: My Personal Experience

Okay first of all, the question people sometime ask me: can you even dare to travel while suffering from Ulcerative Colitis? Can travel and Ulcerative Colitis treatments match?

From my personal experience, I can say: yes. But it does require a lot more preparation and a different mindset than with a healthy body.

In this post, you'll find my personal story with the experiences I made while in different stages of the disease: the beginnings with no real diagnosis, the starting problems, the heavy flare, the bettering of the symptoms and the remission.

What is Ulcerative Colitis anyways?

General definition

I'm not going to give you detailed scientific definitions of the disease and the symptoms as there are tons of better sites like the Mayo-clinic or the one I'm treated at, the UZ Leuven, to give you more accurate information.

But just to give you a quick and simple overview:

 - Ulcerative Colitis is one of the diseases classified as IBD, Inflammable Bowel Diseases.

 - It's a chronic and so far incurable disease causing inflammations and ulcers (sores) in your digestive system. 

 - It mainly affects the large intestine and the rectum. This is the big difference with the sister-disease, Morbus Crohn, which can also affect the small intestine.

 - Although you're born with it, it generally only breaks out in your twenties (there are exceptions, though).

 - It comes in flares, meaning there can be longer periods without or with less symptoms between heavy outbursts of the disease.

 - The origins are still unclear but so far they discovered that it has to do with genetics but also an over-hygienic society. Personally, I guess the fact that I had antibiotics administrated as a kid has also influences the severity of the disease. 

 - UC is an autoimmune disease, meaning your immune system is overreacting and fights harmless things like food, thus causing diarrhea.

Main symptoms of Ulcerative Colitis and how they affected me

The main symptoms are generally the following, although every person is different and they can vary a lot:

When I was flaring, I had all of the above except for the fever. But that's because I generally have a very low body temperature (35.3 °C).

I actually NEVER experience higher temperatures than 37 °C at the absolute maximum. That would already be feverish for me haha.

The blood and the mucus had been my constant companions for almost 4 years before finding a treatment that at least stopped the bleeding.

The cramps and abdominal pain are still present whenever I eat to much of the wrong things. Even in remission.

And the diarrhea, well.. during my heaviest flare I lost around 15 kg in two months - that was scary. I had diarrhea literally EVERY SINGLE day.

Secondary symptoms of the disease

There are accompanying symptoms that people sometimes fail to connect with the disease:

These symptoms aren't that common but if you have UC and experience any of this, it's absolutely related.

I myself had the joint pain and itchy eyes.

And unfortunately, the dry skin with eczema spots are now part of my life. But having a good routine like using shower-oil instead of gel helps a lot.

The reason you might frequently experience anaemia is because on one hand, your intestins are constantly bleeding. And on the other hand, an inflamed gut can't assimilate things like ferritin from the food.

Same goes for vitamin B12.

The goal of the different treatments: remission

Getting you into the state of what doctors call 'remission' is the main goal with every treatment. This means that, while the disease is still present (you'll never get rid of that beast, sorry), you are entirely symptom-free.

Flare-ups and remission usually alternate. But you can have one serious flare and then be in remission for like 20 years for example, that happens quite often actually.

What type of treatments are there?

I only talk about the ones I personnally tried and tested, which are (brace yourselves!!):

 - Mesalazine (Colitofalk)

 - Cortisone (Medrol)

 - Azathioprine

 - TNF inhibitors: Adalimumab (Humira) and Infliximab (Remicade)

 - Integrin antagonists: Vedolizumab (Entyvio)

 - Interleukin antagonists: Ustekinumab (Stelara)

Okay, this all sounds like gibberish, I know!

So let me break them down for you: I'll give you the type of treatment without too many scientific stuff around it and whether it worked for me or not.

This is the chronological order I had them in:

Mesalazine: short-term impact but long-term use

What's that?

Mesalazine belong to the aminosalicylates or 5-ASA drugs. They act on the substances that cause inflammation in your gut.

They work best on mild to moderate forms of UC and can in some cases remain the only drug you'll need for a very long period of time.

It's also the go-to medication when you are in remission but don't need any of the other stuff anymore.

It can be taken over a very long period of time (years) and helps keeping you where you are supposed to be: in remission.

They come as pills but also as suppositories and rectal suspension (= enema). In the last two forms, it acts faster but it's obviously less comfortable...

Mesalazine also prevent the formation of cancer cells (due to the permanent inflammation).

My experience with Mesalazine: Colitofalk

In my case, I was never on Mesalazine alone as my symptoms were too heavy already. 

I took Colitofalk as pills (six every day) for about four years before Remicade worked so well that I didn't need any of them anymore.

 Pro's:

 - Pills: easy to transport

 - They have a long-term effect and can be the only treatment you'll need

 - No heavy side-effects (depends on the person, of course)

 Con's:

 - When you take six pieces every day, you need a huge stock!

 - Suppositories and rectal suspension: really uncomfortable

Cortisone : short-term impact and nasty side-effects

What's that?

I think Cortisone doesn't need a lot of introduction, right? 

It's pretty much a very heavy anti-inflammatory drug that comes with a few nasty side-effects when you take too much of it over a longer period of time. 

Before getting these, I was misdiagnosed quite a few times (read here) and I tried to heal my gut by changing my diet or experimenting with naturopathy - didn't work for me. At all.

My experience with Cortisone: Medrol

During my treatment with Medrol, I traveled through the US and was able to eat greasy food like burgers and fries without having diarrhea afterwards.

But I experienced the side-effects of that drug during at least 6 months AFTER having stopped taking them. This being: sleeping trouble, anxiety, fatigue, muscles disappearing.

And while they helped me with the symptoms, they were actually part of the trigger for my heaviest flare ever!

The moment I got admitted in one of the best clinics in Europe for IBD, the UZ Leuven in Belgium, doctors told me that I was never going to take that stuff EVER AGAIN.

 Pro's

 - It stopped the diarrhea

 - It allowed me to eat what I liked without cramps

 Con's

 - Heavy side-effects like insomnia, anxiety, panic attacks, amyotrophia (muscles disappearing)

 - Major flare-up after stopping the treatment

Azathioprine: short term impact and nasty side-effects

What's that?

Azathioprine is an immunosuppressive medication. It doesn't directly have an effect on the inflammation symptoms, like corticosteroids, but instead slows down the entire immune system.

My experience with Azathioprine: Imuran

I only took it for a few weeks as I was already experiencing side-effects from the drug: frequent vomiting.

Plus, it was absolutely incompatible with my job as an archaeologist: Aza makes you super sensitive for sun-light! With that drug, I would have had to basically quit my job and get an inside office-job. 

Which wasn't an option. So I needed alternatives.

 Pro's

 - Has a deeper effect than Cortisone 

 Con's

 - The light sensitivity was not compatible with my outdoor job

 - Nasty side-effects like vomiting

TNF-inhibitors : long term impact but still side-effects

What's that?

The TNF-alpha is a specific cell that causes the immune system to overreact, it works as a chemical messenger.

So basically, a TNF-alpha inhibitor blocks that particular cell and slows down parts of the immune system.

Remember that I told you about the overly eager immune system? Well in VERY easy terms: these drugs put a break on it.

It's administrated by subcutaneous injections once every two weeks.

My experience with TNF-inhibitors: Adalimumab (Humira)

Humira, or the generic name Adalimumab, was my first 'heavy' treatment after the Cortisone and the first one that really made a difference.

As I wasn't afraid of needles, I did the injections myself.

This was actually super handy as I didn't have to get to the hospital twice a month and could just treat myself in the comfort of my own home.

But I experienced some side-effects like hair-loss (a lot!) and brittle nails. And while I already had dry skin due to the UC itself, Humira caused an outburst of Psoriasis.

The blood in my stool disappeared but there was still pus, false urgencies (tenesmus) and thus inflammation signs.

This is why we had to stop the treatment and get on with the next. The results were good, but not good enough.

 Pro's:

 - It stopped the bleeding

 - It reduced the risk of diarrhea

 - I felt generally fitter

 Con's:

 - While it's also used to treat Psoriasis, it can provoke it when you didn't have it before starting the treatment. Which it did in my case.

 - Side-effects like hair-loss and brittle nails

 - The pus and inflammation were still present

Integrin antagonists : long-term impact and hardly any side-effects

What's that?

Integrins are a protein that carries inflammation through the body. Integrin antagonists are thus antibodies that slow down this 'transport'.

It's administrated by intravenous infusion at the hospital every eight weeks after a starting-period of infusions at weeks 2 and 6. It is possible to reduce the interval to six weeks.

My experience with Integrin antagonists: Vedolizumab (Entyvio)

When Humira didn't deliver the results the doctors were expecting, a brand-new drug entered the market: Vedolizumab or Entyvio by its trade name.

It was supposed to be THE miraculous drug with hardly any side-effects that helped so many Crohn and Colitis patients all around the world.

But as all these new drugs are incredibly expensive in production, insurance companies will only allow a testing period of three months at the maximum. 

If by the end of that trial-period the symptoms have not drastically improved, you're not allowed to continue the treatment - how lovely is that??

And this was the case for me.

Although my symptoms were still quite okay (thanks to Humira), I did not 'improve enough' in the eyes of the insurance companies and we had to stop the treatment.

The doctors were disappointed as well as they knew that three months is actually not long enough to really see the effects!

So maybe Entyvio would have been my miracle drug but I didn't even get the chance to try it..

 Pro's

 - Brought me into a state of remission, i.e. symptom-free!!

 Con's

 - Not handy as hospital presence is required

Although this treatment is of a different kind than the Remicade, it seems to work as well.

I've been on it for about seven months now and only have the occasional minor diarrhea - but that's because we eat a lot of stuff on our trip that I don't usually - makes sense, right?

 Pro's

 - Seems to keep me in remission, i.e. symptom-free

 Con's

 - Syringes have to be kept cool all the time (see the travelling part below)

Read on for my personal experiences on travels and the Ulcerative Colitis treatments I had so far as well as a handy overview of my therapy odyssey.

Travel and the different Ulcerative Colitis treatments

In general

Before starting any trip, be sure to get a thorough check-up at your doctor's or the hospital!

Before starting our current world trip, I went for a complete examination at the hospital I've been treated at since 2014: 

First I had a general check-up with the usual stuff.

Then we scheduled an appointment with the travel doc' to see which extra vaccinations I might need, other than the usual flu shot and the one protecting me from pneumococcus.  

Before getting the yellow fever shot I needed for Peru, I had to be 'treatment-free' for at least three months. So I had my last Remicade-infusion in August and waited until November to get the vaccination. 

Then I had to wait another month after the shot to begin the new Stelara-treatment.

And this is what I experienced with the other medications since 2011:

Mesalazine

As they come in pills it's very easy to travel with. I did quite a few trips with Colitofalk in my bag.

The only thing is: I always had a huge box of them as I was supposed to take 6 pieces a day. Quite a big pharmacy to travel around with.

Cortisone/Medrol 

Very easy to travel with as you take them as pills and they are admitted in planes, etc.

I traveled with them to the US and was able to eat very greasy food that would have resulted in diarrhea otherwise.

Azathioprine

Never travelled with them myself but I guess it's also pretty easy as it's pills as well.

Adalimumab/Humira:

While being treated with Humira, we did go on holidays, etc. But I wasn't able to take any syringes as they have to be kept cool and we travelled by plane a lot.

So all of our trips were always two weeks or three at the very maximum.

Vedolizumam/Entyvio

I did not travel while under Entyvio it was only a 3-months trial.

But it would have been quite easy for trips that are less than eight weeks as this is the time period between infusions.

Eight weeks is quite long so that's pretty cool.

Infliximab/Remicade

Here again, same as for Entyvio: eight weeks is a long time to go on trips!

We did a six weeks-trip to New-Zealand, Tonga and Indonesia while I was under Remicade.

I scheduled an infusion right before and there was no problem at all! Same with our trips to Malta and Gozo.

Ustekinumab/Stelara

Like I said, this is now my current treatment and it seems to work pretty well!

The only downside is: the injections have to be kept cool all the time.

So far, as our plans had to change a bit due to Coronavirus and we are currently travelling through Europe, we managed to have a fridge at every accommodation we booked.

But for the second part of our trip, which will start either in South Africa or Asia, I will get myself one of these (super expensive) mini-fridges for syringes (affiliate link) just to be sure.

Here's a little overview of the different treatments I had over the years and how well they worked for me:

And this was it! An overview of everything I had so far and whether it was possible to combine travel and Ulcerative Colitis treatments or IBD medication in general.

I apologize for all the scientific terms but if you are suffering from Ulcerative Colitis, you'll probably get to know a few of them yourself - still hoping that Mesalazine will suffice for you, though!!

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