My Food Odyssey With Ulcerative Colitis

Ever since I've been diagnosed with Ulcerative Colitis in 2011 I've been through a real food odyssey before finding the things that do and don't help.

Let me explain: Ulcerative Colitis is an autoimmune disease that belongs to the (chronic) intestinal bowel diseases.

It means that my immunesystem is pretty hyperactive, considers food being the enemy and reacts to it with diarrhoea and cramps.

Like when you get food poisoning, kind of. But then all the time. 

Here are my personal experiences regarding different diets and the things that ultimately really worked. 

From one 'specialist' to the next: starting the journey

When the first bad symptoms of the disease appeared, I went to see a specialist who (wrongly) diagnosed 'Irritable bowel syndrome'. 

So he told me to just 'pay attention to what you eat'. Well, okay then.. let the food odyssey begin.

I went to see another doctor who told me to cut out meat.

The next one told me to eat lots of sauerkraut. Seriously!!

That last one was the funniest one. Especially since sauerkraut makes me bloated and causes cramps - any kind of cabbage does that (see the list below).

Getting the right treatments in Leuven

At my very first appointment at the UZ Leuven, it immediately became clear that I needed other, more efficient treatments than what I got until then. 

Up to that moment, the only drugs I got were Imodium to stop the diarrhoea, painkillers for the cramps and corticosteroids for the inflammation (read here why should NOT be treated long term with these!).

This is also where they told me that every UC or Crohn patient is different and that I should indeed find out for myself what food works and what doesn't.

There are just a few general things that seem to be the same for everyone:

General food recommendations from the hospital during UC flare-ups

Don't eat or drink

Do eat or drink

My personal experiences regarding these general guidelines

For me personally, these recommendations work rather well when I'm having a flare-up. 

Kiwis and blueberries are on my blacklist in general as I was always react very strongly. And I haven't tried them since I'm in remission - better not provoke anything.

Raw vegetables are very bad for me as well. Even in remission, I can't eat raw bell peppers without regretting it afterwards!

And although I LOVE garlic, I immediately feel when I had a bit too much of it..

While they don't necessarily put wheat products on the list, I think it's good in general to not have too much of it. Today's wheat has been so modified genetically to increase production that our bodies aren't used to it anymore. At least that's how they explain the dramatic rise of gluten-intolerant or even coeliac people.

Regarding drinks: I LOVE fennel tea! I used to hate it when my mum made some when I was sick as a kid. But now I not only love the taste, it's also a life-saver when I'm not feeling well!

Another life-saver, totally unrelated to food, is this: get seat-heating in your car!!

My heaviest UC food-reactions usually came the next morning with severe diarrhoea, cramps and Tenesmus. That latter one is the symptom that lasts the longest!!

It is a kind of urgency sensation. Meaning you have the (painful) feeling that you have to go but once you're on the toilet there's no "relief". The sensation and the pain stay. So uncomfortable!

But at that time, I had quite a long drive to get to work and every time I put on the seat heating (at the maximum!), the cramps and the pain would have calmed down once I arrived. Or they would at least slow down the bowel movements so that I would make it the office-toilet..

This works well for menstruation cramps too!

Food journaling and different diets

After they told me to find out for myself, I started writing a food journal.

Every day, I'd write down in detail what I ate during the day. Every meal, every snack, every drink. It is time-consuming but it is the perfect way when you have absolutely no idea what exactly it is that triggers your intestins.

I googled a lot of stuff too and bought different books regarding diets for that specific disease on Amazon. 

And I found this one (in German): eating healthy with Crohn & Ulcerative Colitis

I would not recommend it if it were bad. It really helped me a lot! I bought this back in 2014 and I still use it sometimes to try some of the recipes. 

Sure, there are probably lots of them on the market now as the IBDs get more and more attention (which is good!) but back then, this was one of the few I could find. 

Yes, this is an affiliate link. So yes, I do earn a tiny percentage if you buy it through the link.

I could also just put an ad here with random Crohn&Colitis cookbooks in English to have a farther reach and more earnings on Amazon. 

But I won't as I really just want to link stuff on this blog that I personally find useful. 

This book contains detailed information about both diseases, why we have them and how they develop. Apparently that particular book got an update already as there are more and more studies on IBDs. 

The general tips regarding food rules still apply, though.

The recipes are all marked by colours divided into categories. This comes in so handy as you can easily see which recipes to use when:

The recipes are not too complicated, you won't need exotic superfoods or heavy machinery.

They are designed to give you all the important nutrients without overloading your digestive system.

Plus: they use ingredients with a strong taste of their own as one of the things to avoid when you're having a flare up are hot or strong spices. 

It's not A specific diet like the ones I'm showing below but I felt there was a lot of research and personal experiences behind the book.

Here are the other things I tried and tested over the years: 

The Specific Carbohydrate Diet (SCD)

There was another book I bought, in English this time. The Specific Carbohydrate Diet was not very popular in Germany or Belgium as it seemed, so it was impossible to get a version here. 

The reason I don't link the book I bought is that I hardly ever used it. So I won't recommend it.

I'm sure there is some pretty good stuff in there but the SCD didn't seem to work for me. It was just too complicated.

It's very popular on the American market apparently as this is the diet IBD associations over there generally recommend to follow when suffering from IBDs. 

But it was not for me, as I felt that this diet didn't provide all the needed nutrients. It's really a diet, not a nutrition-guide.

So what is it, then? It comes down to these rules:

You see, it's very restrictive and can get very expensive. Plus: you're at risk of getting nutrient deficiencies.

They claim that this diet "cures" IBDs.

So it cures incurable diseases that hardworking scientists still don't fully grasp..

'kay..

I din't even try it, really. I think I made two or three recipes from that book. Didn't work for me.

The Paleo Diet

Next stop in my food with Ulcerative Colitis: the famous Paleo-diet.

I jumped on that train maybe because it refers to a very old time. And as an archaeologist I appreciate anything related to mankind's old history - haha.

So this is supposed to follow the eating habits of man from what they call 'Neolithic Revolution'-era (around 20.000 to 10.000 years ago - it's just a theory) when mixed farming was at a high.

Basically, you are supposed to only eat what man ate back then:

While the fact that you eat only unprocessed food and no refined sugars is good, the diet is pretty unilateral.

And it's based on a time where people had a very low life expectancy - I don't know if that's any good. They seem to forget that the actual Homo Sapiens has evolved a few times and that our metabolism doesn't work the way it used to back then.

It does however improve blood sugar levels and decrease the risk of cardiac and circulatory troubles. 

But here again: you don't necessarily get all the nutrients your body needs.

Plus: I felt that there was quite a lot of meat in this diet. And, if you read further, you'll see that meat in larger quantities is not my friend when it comes to digestion. 

I did however try a lot of really good recipes from that book.

Going gluten- and lactosefree

Regarding the gluten, they tested me at the hospital. And it turned out that I'm not coeliac. I do feel a difference, though, when I eat wheat or spelt pasta for example.

Spelt flour isn't entirely gluten-free but it has a significant lower amount of gluten in it.

And that's the biggest change I made. It was not a difficult one, though. Nowadays, you can find anything made from spelt flour. And spelt flour on itself ain't much more expensive than the wheat one. 

But during roughly a year, I tried an entirely dairy - and glutenfree diet. I replaced everything either with plant-based products, or products where they had extracted the milk sugar (= lactose). 

One of the things that really annoyed me during that time was the fact that I couldn't eat any real good cheese. Me!  

I LOVE anything cheesy: give me raclette, cheese fondue or anything with melted cheese any day!

But when I went to the UZ Leuven, getting the diagnosis and starting the treatments, they told me to try out if eating dairy-free would help.

Here again: every person is different. What works for others might not work for you. 

To be absoultely certain if you're lactose-intolerant, there are specific tests. The problem is this: when your intestine is inflamed, the test doesn't deliver a reliable result.

So they couldn't do it as long as there were signs of inflammation. I had to just cut out dairy, without knowing for sure that this causes problems.

Back then, lactose-free products were incredibly expensive. I couldn't complain, I had a good job so I could afford it. But we felt it in our budget. 

Nowadays, I still buy plant milk because I like it better and I still can feel the effects when I consume too much dairy. That doesn't mean that I cut it out entirely. I can't resist cheese. I simply can't.

On a side note: if you are NOT lactose-intolerant, they advise against leaving out diary entirely. There are lots of probiotics and nutrients that your gut actually needs.

That strict GF/LF diet didn't really affect the development of my disease. It didn't make it worse either. 

And it was rather complicated to pay attention for both at the same time! My grandma was so incredibly sweet: she's the best baker I know but uses the "good" stuff, meaning lots of butter, milk and creme.

During my GF/LF year, she mananged to make healthier versions of all of her recipes just so I could enjoy them too. That was so much work for her! But she didn't mind doing it, she's the best and I love her. 

Here again: if you're not coeliac or gluten-intolerant, cutting it out of your diet entirely simply doesn't make sense. 

Vegan stuff

I went full vegan for a (short) while as I felt that less meat was doing me good.

But that didn't last long as I'm too much of a cheese lover - sorry, not sorry.

I hardly ever eat meat at home, though. I don't miss it, really. I'm perfectly fine with cooking entirely plant-based. I even prefer almond or oat milk to regular one. It just tastes way better.

But when I'm traveling or going out, there are some dishes that I can't resist. That happens once in a while.

Also, the doctors in Leuven tell you that less meat is good. But no meat or animal products at all is bad.

Because of the frequent bleeding of the intestinal wall, your iron levels have to be checked regularly. And although you can get the amount you need from vegetables, of course, you have to know exactly which ones and in what quantity.

At the same time, the constant inflammation of the gut makes it difficult to keep your vitamin B12 at level.

And that's the one vitamin that you simply can't get at all when you don't consume any animal product whatsoever. I actually needed injections to keep it at level.

So for me and my malfunctioning gut, it just doesn't work.

I try, however, to have a responsible consommation. Like I said: I rarely eat meat and if I do, it's well chosen. I do enjoy fish once in a while as well. And eggs if I know where they come from. 

Oh, and honey - my dad's an apiculturist. No overproduction, no harm to the bees. So that's the one thing no vegan ever could persuade me that this is something 'bad'.

But I respect everyone's opinion, of course!

Different countries, different food options

The year I first got diagnosed, we went to Morocco. I must say, I thought it would be worse, food-wise. But as they naturally cook with lots of fresh vegetables and potatoes and almost no dairy (especially butter), that food was pretty good for my guts.

Then again, I did not have my major flare-up at that time. The symptoms, i.e. diarrhoea, were just occasional. But I did not get the usual food poisoning from the water or orange juices as I was being extra careful.

The year after that, I got married and I remember having had a bad reaction to the bad food on our wedding day. I spent nearly an hour during the party sitting on the toilet with my enormous white dress.. 

We got divorced two years ago. But I don't think that my episode caused it - haha.

After the wedding came the honeymoon: a roadtrip through North-America. As I was having more and more troubles, my doctor at the time prescribed corticosteroids - bad idea!! 

However, those drugs were a big help through the honeymoon as I was able to eat greasy food like burgers, etc. - things I would normally have reacted to. Read here for more details about what happened next.

During the GF/LF phase, I went to New-Zealand for the first time. And I was amazed by the diet options offered on that island!

This was 2015, Europe (and especially Belgium) was not that far in "special diets" yet! And here in NZ was this paradise where I didn't have to do a whole research up front before going to a restaurant or snack bar. EVERYONE had GF/LF options! EVERYWHERE!

There's a Pizzeria in Auckland/Takapuna where I had the most amazing GF-pizza made of chickpea-flour! That tasted so friggin' good!

The same year we went to Mexico where things were a bit different.

Although they were not so keen on real GF/LF options, Mexican cuisine naturally uses a lot of corn flour that is naturally glutenfree. So that worked too!

I just had to pay attention for the spicy things. Those were very bad for my guts.

But just look at that food! I'm drooling!

2016 was the second time in New-Zealand and although I was not on the GF/LF-diet anymore - at least not in a strict sense, I kept looking for those options.

Actually just because they made them sound even better than the "normal" stuff -haha!

I wasn't in remission yet at that time. But I quit my job and got a way better one at the end of 2015, meaning my biggest frustration had disappeared. 

Although IBDs are genetic, the flare-ups are very much influenced by the psyche.

2017 we (my ex-husband and I) travelled through Namibia. Things were a bit more complicated as the Namibian cuisine involves a lot of meat (wild game, mostly), not so much vegetables and big quantities of oil.

But it was okay as the treatment I had been getting since the beginning of the year (Infliximab/Remicade) worked pretty well.

In 2018 we went back to New Zealand - you know how good that works - then Tonga.

Tonga was weird as you expect a Polynesian island to serve fish and fresh vegetables/fruit all thte time. Not there. It wasn't bad food but a lot of it were imported ready-to-eat meals and pretty fatty.

The coconuts and watermelons were incredible, though! And there was one evening where we got to see a beautiful Tongan song and dance show (with fire!). The food was a giant buffet with traditionnal Tongan dishes like seaweed marinated in coconut-milk, for exapmple. And suckling pig, of course.

After Tonga, we travelled through Indonesia: very oily food but lots of vegetables and hardly any meat. Lots of fish! I was still in remission, so everything went fine. And rice, of course! With every single meal.

Then came the divorce and I was expecting another major flare-up. But I managed to get my guts in the right place by focussing on a new life with lots of new possibilities, trying out new stuff, discovering unknown passions, doing a beautiful city-trip to Copenhagen with a friend, etc.

2019 I did my big solo-trip through Argentina and Chile, with an amazing visit to Easter Island. 

Of course, the Argentinian part involved a lot of meat. That's what they're known for, in terms of cuisine. I had the traditional Patagonian lamb and an asado in Buenos Aires, where they slow roast big chunks of meat on the grill. 

Like I said in the 'vegan stuff' part, I still eat meat. But I won't necessarily cook it for myself at home. I love trying local cuisine, meaning that I will eat the traditional stuff the country or region is known for. Meat or not. 

I met Sebi on a drunk night in Dublin on New Year's Eve and we went for a week to Malta and Gozo after roughly eight months of dating, having been on short trips to Brussels and Barcelona before that. The food in Malta is typical mediterranean and that's perfect for my guts.

My body appreciates anything mediterranean anyways. I studied in Barcelona back in 2010 and as I consider this city a second home, I try to get back at least once a year!

This city has an amazing variety of restaurants with GF and LF cuisine, vegan restaurants and even Paleo ones. No matter which diet you're trying out, Barcelona has it all.

I hardly ever feel anything when I'm there. Maybe because I'm just incredibly relaxed and happy then. That is, if I can keep myself from heading to the Boquería for the amazing Croquetas de jamón.. 

Read also | Food in Barcelona: amazing tapas and more

What about now? 

I just had my usual 6 months check-up at the hospital. Being on a new medication since December, I was slightly worried if the good results I was getting from the previous treatment would be maintained.

But everything looked fine! I'm still in remission!

So my UC now allows me to practically eat any food I want - except for deep-fried stuff. I can have some but not too much.

Other than that, I still pay attention but I don't have to think too much about what's getting on my plate.

I'm well aware that I could have another flare-up at any given time, though. So I will never push my luck too far with food and I will always remain careful. 

Like I told you before, I generally cook vegetarian, sometimes even vegan. But I'll have the occasional piece of meat or fish. 

I'll list you my favorite cookbooks I use the most below. Those are the ones I use almost every week.

They are so cool that I bought the same ones for my sister. Plus an extra one for cooking with kids called 'Little Green Kitchen'.

That last one is not in my possession but she thought the recipes were so awesome that she sent me some to try out new things.

Absolutely loved the "Little Swedish hoovers". Those are actually made of quinoa and spinach (for the colour) and dates for the sweetness. No sugar and plenty of veggies and they taste like chocolate-marzipan!

And the 'carbonara' with 'parsnip Pancetta' of that same book is out of this world!

From the 'Honestly Healthy' book, my go-to summer dish is the "Leek and halloumi millet salad". So easy and it tastes amazing!

Although you're not supposed to eat leek when having a flare-up, I find that this one is okay. And the millet is sooo good for my guts. This recipe is also the reason I ALWAYS have halloumi in my fridge.

Click on the images to find them on Amazon:

My new daily ritual is the 'Golden Milk'. That doesn't come from any cookbook though. I got the idea of Instagram, where Stephie, a girl suffering from Ulcerative Colitis and Lipedema, just I like I do, shares her tips for a healthy body. 

It's a mix of turmeric, barley grass, rosehip and ashwaganda powder. I add two drops of CBD-oil as well. Here are the details on the ingredients:

Check out the exact recipe I posted on Autoimmune Sisters.

Right now, my habits are slightly different, though.

I am actually writing this article from my hometown in Eastbelgium. With the Covid19-crisis, Sebi and I could not start our world-trip on April 1st, like we had planned. 

Instead, we are mostly at his parent's home in Vorarlberg, Austria. Except that I had the check-up at the hospital in Leuven, Belgium. I was supposed to have that particular examination before leaving in April.

So that means that right now, we are stuck at my parent's for a few days. While it is nice to be able to spend so much time with them, my dad's cooking style is a bit different from my own. 

As I told you, I tend to replace dairy by plant-based things and I rarely cook anything of meat for myself. 

But my parents are meat lovers. It tastes amazing, sure! But I do feel that my guts are wondering why I'm getting all this other stuff all of the sudden..

We'll see how that will turn out, right?  

UPDATE: we are currently on our road trip through Europe. After having all of our world trip plans cancelled, we decided to just take the car and drive down South.

So far we've been to Western Austria where the cuisine is very buttery and heavy with lots of cheese - you can imagine what this felt like for my guts. But as we knew all the stores and products, we cooked a lot four ourselves so it was okay. 

Then we spent a week in Slovenia where we absolutely wanted to taste the traditional Ćevapčići. Plus, they are known for their good meat products - see where I'm going with this? I felt it once or twice..

And now we are in Croatia where the food is more mediterranean, which is actually really good for my tummy ! Stay tuned for more!

If you found this post useful, don't forget to comment, pin and share 🙂

xx

Cyn

Don't forget to subscribe for the latest posts and tips on traveling with health issues!