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My Crohn's disease

Crohn's disease diagnosis and how it all started

When I turned thirty, I went to Naples. After a full day of eating, my stomach suddenly started cramping. It was my first real flare-up. I didn't know what it was. I experienced stomach issues before that day, but they always passed after a day or two. But this time, it was as though something was stuck inside my stomach. I was constipated, and it hurt like hell. Weeks went by, and it didn't get better. I couldn't eat without feeling pain. I didn't go to a doctor. Instead, I googled "what to eat when constipated."

Crohn's disease diet and early mistakes after my diagnosis. What NOT to eat during Crohn's flare.
I was bloated and in pain. My stomach was so full I had to get whatever was there out. My google search suggested that the best way to get rid of constipation is by eating fiber, which I did, a lot. I usually never ate fiber, but suddenly I was eating the most fiber-rich food.
I even bought small fiber-dense cubes. It resulted in more abdominal pain. Today I understand that my stomach needed rest, both from eating and how I was living—more on how I lived later. I should have had a super simple soup or broth if I had to eat.
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Unlucky with my first Crohn's disease "expert." 
It took me a while to see a doctor. The MRI showed I had inflammation in my intestines. A few days later, a 45-year-old angry doctor, most likely tired of his occupation, called and told me I had Crohn's disease. "I never heard of it," I told him. I was frightened. I thought I was forever young and healthy—a superman.
The more a doctor can empathize with his patient, the more he will be able to feel and understand his patient's needs. Unfortunately, my first doctor didn't want to book an appointment with me or even take the time to explain to me on the phone what this horrible disease was. When I tried to ask how I had gotten it, he sighed and said, "Nobody knows. It can be anything." "What can I eat?" I asked. "It doesn't matter what you eat. You need to take these medicines." "But isn't there a diet I can follow? What can I do to make this go away?" "Take these medicines," he said with annoyance, making me feel like an idiot. Before that call, I had never heard of the disease.

Finding answers.
I remember googling with eyes full of tears, "What is Crohn's disease?" I was frightened, and the googling made it worse. It sounded horrible. I was shocked; this was permanent; you could never get rid of it. I was sick for life, according to some sources. I know now that that information is complete horse shit. There are so many people living a "normal" life. I don't even know what normal is, but you can definitely get through this and come out on the other side STRONGER. I will explain this with examples later on.
Crohn's medications.
I was weak and fragile, grasping for any quick fix. I accepted the various medications he suggested without ever having met him! I was not in my right mind. Back then, I thought doctors knew everything. I trusted him blindly and took everything he told me to take. And sure, I quickly got better and went back to my old habits. But the problem was that one could not take cortisol forever. Cortisol disguises the pain. When we lowered the dose, the pain came back worse than before.

Answering the question, what is Crohn's disease?
I read books and articles, trying to understand the problem. I wanted an answer,“How do I get rid of this?”I was convinced that there had to be a pill or some magical medicine. We can cure people with HIV; you can clone people, land people on the moon and get back. You’re telling me we can’t solve stomach pain?

Healers, knowledgeable people, alternative doctors.‍
I remember one article pointing me towards a seven dan former Kung Fu champion that used to live in my city. I had seen him on TV do the most crazy acrobatic things. He was in his fifties, and still in good shape. He was recommended by a friend of mine who referred to him as a “healer”.

He told me, “You need to breathe correctly.”
Back then, I didn't get the concept of breathing at all. Sure he struck me as a wise and knowledgeable man, but come on; I breathe automatically! My stomach is hurting. How is breathing supposed to help me? Again, I wanted a fast fix, a simple cure, an easy solution. “Take this and you’re fine.” Today, ten years later. I know more about health and my own body. I realize I should have listened to the man. But  I was weak, hurting, sad, frustrated, fragile, alone in this. I was panicking. Where was my magical fix?

Overall health cannot be good without a good gut health

When Crohn's intensifying. 
Things got worse. Way worse. I couldn't eat, I was constantly constipated, and it steadily got worse. I was transferred to a real specialist with a lot of experience who told me I needed surgery. At first, I resisted, but I gave up after weighing in one morning at 56,7 kilos, feeling I was dying. Every time I sat down, I felt my spine press against the chair. I had no energy and I was in serious pain.  
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Not eating before the surgery.
The new doctors were serious, kinder and mindful of my feelings. “The best thing you can do,” one of them said. “Don't eat anyfood until the surgery.”
The surgery was 2.5 half months away. They wanted to keep me alive by inserting a tube in my nose, down my throat, dripping a nutritious dense, anti inflammatory drink. I could feel the tube in my throat and I wanted to vomit every minute it was in. Having that tube up my nose, down my throat, letting it drip into the stomach... It was too much for me. I told the doctors I preferred to drink the fluid instead. It was a nasty horrible tasting drink, but it saved my life. I managed not to eat for more than two months before the surgery.

People getting Crohn's disease are around 30?‍
I had my surgery a few months after my 30th birthday. I was in pain for a few weeks after, but then I was pain-free for a while. Before I was released from the hospital, I asked every doctor and nurse,
       "Please, please tell me what I can eat and not eat." I wanted answers, a list, clear detailed instructions on what I needed to do to make the disease stay away.

They all told me the same thing, "You can eat whatever you want. This disease has nothing to do with your diet."

They were doctors, and I didn't know better. I trusted them blindly, even though I knew deep down inside, “OF COURSE IT MATTERS!” And today, ten years later, I know wholeheartedly, OF COURSE IT MATTERS!

Be careful what you eat after the surgery.
‍I wasn't allowed to eat real food until a few days after the surgery. When it was finally time to eat again (my first meal in 3 months), my brother brought me a kebab pizza and ten candy bars. In hindsight, I wonder if he wanted to kill me. I know he only meant well; he just didn't understand better. I couldn't eat the pizza nor the chocolates. I couldn’t even look at it. I was nauseous and in pain.

I had a real chance to start over with my health and do things the right way. But I didn't know what the right things were. unfortunately, it didn't take long before the pain was gone and I went back to old habits. I still didn't know gluten cause inflammation (YES IT DOES). I didn't know dairy wasn't good for me (It's not!) I didn't know I should stay away from sugar. That sleep, fasting, stress, living a harmonious life mattered (They all matter).

I have to add something important; I was in a horrible relationship at that time, and in a bad place in life. After only a year, the disease snuck up on me again. This time things got nastier. The inflammation clogged my intestines. Food couldn't pass through my small intestines, and it was a new kind of pain I had never felt before.

In and out of emergency rooms.‍
I was in and out of the emergency room on a weekly basis. For a month or so, my stomach began cramping after eating. Most of the days I withstood the pain. But some days, pain was the only thing that existed in my world. The pain would be so excruciating that I couldn’t stop hitting the floor with the palm of my hand, begging for the pain to be relieved. First, the doctors helped emptying my stomach. Then they put a needle in my arm and gave me morphine. And suddenly, the pain was magically gone.

Another surgery
The MRI scans had the doctors convinced I had to do another surgery. I was devastated. I won't detail everything that happened between surgery one and two. It's enough to say that those two years were definitely the worst years of my life. My life didn’t suck because I was sick. I think I was sick because my life sucked. I was in a bad relationship. I was stressed, both with life in general, and work. The doctors told me I would probably need to get a stoma bag this time, with hope for removal in the future. Again I went three months without eating, only drinking that horrible-tasting drink to increase my chances. When I woke up from the surgery, they told me the surgery went well and that they managed to close me up without the bag. I was in pain but happy and relieved to hear that.

A Real Change Is the Only Way

After two years of pain and two surgeries, I realized it was time for a change. A REAL change! I couldn't postpone it anymore. I wasn't young and indestructible. 

Becoming conscious of my diet.
I still occasionally ate bread, still stressed and worried, but way less than before. I completely let go of dairy for a while. Once or twice a year I would have a nice cream, but I was still way more conscious of what I was eating than before. 

Keep a food journal
Keep a journal of what you eat and how you feel afterward. I know it's a bit of work, but these days with your iPhone, it's so much easier. It will take you less than one minute to write down what you eat. At every day's end, write how you feel and felt throughout the day. You'll discover patterns sooner than you think. 

I always thought coconut milk was super healthy and good for me. But thanks to my food diary, I realized the correlation between nausea and the intake of coconut milk. This might only be true for me, but that's exactly what I want you to understand. Your body is unique. You have to tailor your life and diet so that it fits YOU. Others can give you guidelines and point you in the right direction, but you have to take responsibility for how you fuel your body.

‍EXERCISE
It may sound like a no-brainer, but I know how hard it is to work out when you feel bad. Maybe you can start with walks? Then, later on, try to get your heart rate up for at least a few minutes a day. A good rule of thumb is to break a sweat at least once a day.

Right decisions regarding your Crohn's will lead you to more right decisions.
There is not one single thing that will make you go from 0 to 100% healthy. There's not even such a thing as 100%. Take, for instance, Curcuminoids, which are the bioactive compounds in Turmeric. Numerous studies have shown it reduces inflammation. Will that alone do it? No, but it will probably help a tiny bit on the way. Will fasting do it? No, but it will help quite a lot.

Do a lot of things that are good for you, and you will increase your chances significantly. And this is why there are no magical things you can do. You have to see this as a lifelong investment; it's the only way. When you truly understand what is good for you, making the right choice will come easy. And slowly but surely you work yourself to a healthier life.

Once you get rid of the pain, life will become so much more joyous. A good stomach is a stomach you don't notice. It's not in the way of your living. Next time you crave something you know is terrible for you, for instance, a doughnut, let it be. Know, have a deep understanding that it's such a short time pleasure that will cause you much harm in the long run. Even if it's just one! One single doughnut can't be that bad for you, right? No, wrong, because bad decisions bring out more bad decisions. Instead of getting just a little bit better, you get worse.

Eating right.
The tough part about "eating right" is that sometimes you think you're doing everything right, but somehow, things go wrong anyway, and you have a flare up. Some days too much fibers can cause pain. Here you thought you were doing everything right, eating optimal and healthy, but somehow it still ended up wrong.

It's easy to get deterred these days, but stay strong. Try to have friends and family you can talk to that can support you. Don't give up. Continue doing good things. Keep a diary, and you might even find out that an item you thought was good for you, is actually bad for you.

And just a sidetone, if you do happen to overeat fibers, let your stomach rest. Don't push the food. Go hungry for a while. Drink a lot of water. When you eventually eat, maybe you can eat an easily digestible soup.

Your intake of fibers should increase slooooowly! Don't push it. Be nice to your stomach. Listen to what it has to say. Chew carefully. Eat mindfully.