One of several Crohn’s disease symptoms is fatigue. You can get tired easily, you sleep a lot, you can’t keep up with your friends.

When you’re pushing your limits, you can end up in pain. On the toilet, on the floor, in your bed or even in hospital. When you cross that line, sometimes you realize it wasn’t worth it. Listen to your body.

Sometimes it’s okay to stay in bed, take time for yourself insteaf of going out with friends. If they love you, they’ll understand…

Me and food. This is probably the most common topic in my life.

I love food and it scares me at the same time. Yes, you’re reading right – I’m afraid of food. Why? Because of the fact that I am sick, I have certain diet “restriction” from time to time and when the (pre)winter season comes, other problems often come with it. It’s always getting worse when winter is coming. It’s quite strange for me to write about it, because I’ve always been afraid to discuss this topic. I was ashamed of my illness. It’s an embarrassing disease. I still wonder what disease is more embarrasing than the one that’s about shits. Digestive problems – vomiting, diarrhoea, constipation, cramps, fatigue, pain and countless times of bleeding. It’s a pretty thorny subject. Especially for girls, because girls don’t fart and do number two. Ha ha ha. I know so many people who are disgusted by this. It’s so normal! One eats, the intestines start working, and then you do number two. Ordinary thing – but not for everyone. For us, IBD people, it’s a pure horror countless times. To poop. It’s like opening the Pandora’s box and not knowing what’s coming. I mean unless you eat something bad, it’s clear that Mr. Diarrhea is going to come for a visit. Who would ever have constipation from off milk?!

Now I actually think I should start with the classic IBD mantra. I think the primal idea of every person suffering from IBD is something in the sense of “enter and Neuškoď.” or “I don ‘t give a damn.”, and in the worst case, “perhaps it neucpe me.”. So or so, food is always such a challenge for us (challenge). Everyone has an “anchor” – a meal that won ‘t hurt him. For some, it’s bananas, rolls, mash, rice. For me it is a need for baby food with Piškotama. Those little ones. There was an affair that they were produced in Poland. I can’t figure out how many times in my life I’ve been glad for eating a roll or just biscuits. I remember how my parents brought me home from the hospital and the next morning – on Saturday, I got breakfast – a roll with butter! Lord in Heaven, how happy I was. I looked out of the window at the passing cars and proudly, knowing that I had fought it out, I chew(bacca)ed the roll with butter. It didn’t cost 70 Czech crowns back then (another Czech affair, this time about expensive butter).

Here you have two samples of classic breakfast in the children’s (and not only children’s) hospital.

Here you have my favorite breakfasts, lunches, dinners. Of course, when the intestines are angry, I curse even my most popular food.

Breakfast 1: millet porridge, pears, raspberries, maple syrup.

Breakfast 2: sausage/ham, roasted tomato with cheese, beans in a sweet barbecue sauce, hashbrown.

Lunch 1: chicken or turkey breasts on herbs, stewed carrots, roasted bacon, potatoes.

Lunch 2: white fish with mashed potatoes.

Dinner 1: Honest home soup – root vegetables, mushrooms, hail, potatoes. (Thanks mom, you’re doing the best)

Dinner 2: sushi maki – salmon, avocado. Classic.

From the photos you can see that I’m a total masožrout. However, the more I feel that my meat is not doing well. Therefore, when someone invites me to lunch or dinner, I refuse in a weaker period (sorry, gentlemen). Because if I’m sick, there are three things for me: meat, milk, raw vegetables. Not only that. Even if you actually an what I eat, it can happen that the intestines just refuse. And how quickly it went in, so quickly it goes out. I really like meat, I’d have used to tell you that medium-rare steak is my favorite food, but it’s not. Now I try to eat more vegetariánsky and vegetables mostly heat treated. How many times I don ‘t want to eat. Not only do I have the power to prepare the food. I have no desire to bite anything. I mustn ‘t forget that I’d rather be hungry than having a few dozen minutes and sometimes hours of cramps and pain, in the better case only in bed.

To finish it off in a humorous way, I’m adding a degustation photo, a few days after the hospital release. Suprise, suprise, but I haven’t sh.. myself.  🙂

Les Moules and my lobster with lobster sauce.

PS: It is better to have at least 2 toilets at home because with Crohnie you never know how long it’s gonna take. 🙂

I’ve been on a diet for two weeks and all I’ve lost is two weeks. – Totie Fields

Do you know the feeling when you feel like a ball, a fatty, a roly-poly, an overhydrated walking zombie? I do, and it really sucks, I’ll give you that.

You’re ashamed to go to the public because people are always staring. Again and again. Wherever you go, they just stare all the time. You feel like some foiled fool. I hate it so much.

People usually don’t realize you are not an eatard, but only a person who takes milligrams of corticosteroids which overhydrate you every day. I’m sorry about the inappropriate language, but that’s just the way it is. When I think about it, you really eat like hell. You have this big appetite as fuck because of those shitty hormones. It’s insane. Literally. I remember my favorite combination. Roll, Parisian (salty spread), strawberries, whipped cream. Do you understand why I’m writing that this is fucking insane?   These are simply the hormones. Mood swings – one minute sweet like a sunshine, another time an angry Chihuahua. Appetite that I’ve already described. Insomnia – You go to sleep at 10 p.m., asleep at 2 a.m. One is swollen/watered – that’s the greatest horror. Mostly the face, then the abdomen and then hands a bit. I hated when my fingers were so big. So many times I wasn’t able to clench my fist as it was that swollen. Yeah, and sometimes my butt. Well and on top of that, i had acne. Like a fucking teenager. Everywhere possible, the worst is of course the forehead + my chin. Now it’s the right moment to show you the fatty Annie. I hope you won’t get scared to swelling. 🙂

Oh yes, summer 2013. Chubby cheeks and trying to smile. Don’t mind the snapback, I had a snapback period so…

Yes yes, at the Rock for People Festival with a handful of full of drugs. What’s that? A couple of prednisone, Helicid, probiotic, Imuran, Entizol, Espumisan. More than a dozen pills.

Sometimes I tried to save my look with some glasses, non-dioptric. It didn’t help much.

And here you see smiley, swollen hamster. Eyes like tiny peepholes and tensed cheeks are impossible to miss. Thank God for Dusinek from the photo, buddy as it should be, in the summer 2013 he was my rescue. When he saw me he wasn’t scared of me and even wasn’t ashamed for me in public! 🙂

Yes yes, the era of snapback “The Baddest”, the Nokia 3410, the chequered shirt, and the melon (pigtails) on my head. I even have swollen boobs a bit. Oh, and the nutrition probe! That was a “savoury”. Never again.

So here you see part of the tangled head, eyes like a rabbit and slightly swollen belly. (This untangling was a real hell, thanks Petulka!)

I look like Annie The Swelling. Even looking fancy in a Brno mall that looks like cheese full of holes. 🙂

And with this unguided smile, double chin and red fingernails it culminates. 🙂

Well, you saw a parade of Corticoid Lady, I hope I didn’t really poisoned you. 🙂 With corticoids it’s not easy at all. You can also “get” the disease that makes bones thinner (and also teeth). I’ve got that one too. Osteoporoses? No, osteoporosis. 🙂 Haha.

Xo Xo, and when you see some swollies in public, you need to smile at them. Just don’t stare or they will be even more ashamed of themselves, and we do not want them to! Not everyone is healthy, so be grateful you’re healthy. 🙂

Health is not everything, but without it, everything is nothing. – Arthur Schopenhauer

It’s been so many years, but I can see it like it was only yesterday.

A redhead nurse is coming to me, carrying a plastic cup. My stomach is in knots, because I know what’s gonna happen in a while. It’s gonna be about forcing and fighting myself, saying to myself. I gotta drink at least a quart of contrasting liquid on my empty and bad stomach. Me? This little kid who weighs 77 pounds including bed? Stressed out, skinny, miserable? Haha. That’ll be something.

‘You have an hour,’ she said.

My stomach tightened even more. Ultimatum. Deadline. Oh boy.

Heroically I started drinking that disgustingly sweet water. It wouldn‘t be as bad if it was bubbly, but it’d be me asking too much. It’s not Perrier, right. So I was sipping, trying and trying. However, 40 minutes gone and I only downed two small cups. The nurse was very nerveous by then. Even I was nervous. I was feeling worse and worse. Thank God I had my beloved sister on the phone. She was supporting me, telling me I’m the hero and I’m gonna make it. She promised taking me to the movies and have a lobster together afterwards! Only the idea was literally divine. I love lobster – assuming someone already had got rid of the shell (for me).  I was telling myself I have to handle it… but unfortunately, the ginger nurse approached me and started pitching into me.

‘Drink it immediately as we have to take you to MR in a moment. All the liquid must be in there, in your stomach.’

‘I can’t, I’m getting sick,’ I said.

‘Do it, or I’ll pump it into your stomach through the enteral feeding tube! You don’t want it that way,’ she yelled.

Tears in my eyes, I was ashamed and afraid. I felt like nobody, zero who couldn’t forced a damn baryum down into my stomach. I heard more of ‘Do it!’, holding my breath and downing half the cup! Success!!!

Unfortunately, it wasn’t enough for miss Redhead. She started to yell more (sorry for the language) of the bullshit and I suddenly couldn‘t hold it anymore, it went out. Everything. My stomach was in cramps as fuck. What fuck, like fucking fuck! Angels in front of my eyes and I thought I‘m gonna pass out. Thanks, you non-empathic, kids unfriendly nurse. All of my effort, nerves, time and strength were gone. All of my will to continue this hospital crusade, to accept another round of the substances, injections, colonoscopy, tubes, was gone.

My beloved sister on the phone heard all of it. Well, of course she didn’t leave it that way. She started to solve it immediately. Like a lio(n), which she is. She has always been ‘cut the bullshit’ kind of person and this was a typical example. She immediately wanted the Readhead on the phone and right after she spoke with the senior (head) nurse.

I just remember it got somehow solved. Perhaps even with the Chief physician. By the way, even miss Redhead with a million earrings in her ears apologized. 

But what is an apology when one can “harm” a child like this… I just hope that there is a total minimum of nurses like her in children hospitals. I wouldn’t wish any child to be treated this way. I think that especially pediatric nurses should be empathic, open-hearted and kind. The kids don’t even know what’s going on. They don’t have their good sister there on the phone. They don’t have their mums by their side. And I’m thankful for my girls, mom and sister, to the universe every day because without them I would have given up a long time ago.

I‘m also grateful for my favourite, kind, smiling nurses from the pediatric hospital in Cerna pole. They were such an angelic souls, only occasionally with some kind of injection or a pill in their hand.

For your idea to see how how I was doing in the hospital (year 2007, barely 20kg)…

With the help of my Asus, with my crush as a wallpaper (my brother’s friend from his rock band), several glass paints, four-layer toilet paper and my favourite Poopie chair! 🙂 Well do not laugh at me… 🙂 This Poopie chair you can see in the picture, was the best thing that lifted my mood when I had got it in my room. It didn’t have the wheels like the others had so I wasn‘t slipping away (while using it) and shit in peace… 🙂 You’d be grateful for it being in my position, too. It was better than sitting on a potty (God, it was so humiliating even for me as a kid). Poopie chair power! 🙂

It is by disease that health is pleasant; by evil that good is pleasant; by hunger, satiety; by weariness, rest. – Hérakleitos