My first symptoms

I think I was 15 years old when I started to have bowel problems: pain, diarrhea, feeling sick, feeling tired, my belly would swell up and shock from time to time. I have been to my doctor many times and she had all kinds of explanations: you may have a virus, you may have a lactose intollerance 'I will send you to a dietistion', you may be stressed, it might be your period, etc.

I think I was 18 years old when she finally gave it a name: Irritable Bowel Syndrome (IBS). I wasn't really sure if I was happy with this diagnose, I still think it's a made up name for symptoms they can't name. 'Oh it's something with your bowel? Well than we know what you have, IBS'. An easy way on how to put people at ease because we tend to need names for our symptoms to cope with it.

But even I never thought that I would have something like Crohn's disease, because in my mind those people where really sick and as I mentioned earlier, very skinny and I was a normal size girl, and if I would eat everything that I liked, I could grow pretty fast. I couldn't eat anything I liked, my bowel would protest, but I never compromised on food, I would eat what I liked, even if it would mean my bowel would hurt or I had to find the nearest bathroom really quick. I just thought this was semi-normal and I just had to deal with it.

About 4 years ago my bowel really started to hurt, swell up, I felt sick and it just wouldn't stop. We even thought that I might be pregnant, but the test was negative. So again I went to see my doctor. She wanted me to draw some blood. The result came in a few days later and it showed an infection. So my doctor prescriped me some antibiotics and after almost 3 months I started to feel better.

When I would go on holidays I always made sure I had pill's against diarrhea with me and was hoping I wasn't going to be to sick this time. Not like I can't do anything sick, but just not feeling very well.

It was the same with going away by car. Unconsciously I know every gas station with a toilet along the roads. I thought everybody knows that, but when I ask people, they don't. They even start to laugh when I tell them this. Guess it's not that normal.. haha.

So I have had al sorts of symptoms and discomforts since I was a teenager, but I just didn't really know any better. That was just part of me, and everybody has stomic pains from time to time, right?

When I was diagnosed with Crohn's it all fell in to place. Maybe I wasn't just a lazy teenager, I just needed the extra sleep. And maybe that's why I had the flu more often than other people. And more obviously that's why I had the bowel problems and pain.

What is Crohn's disease?

There are lot's of discriptions of what Crohn's disease is, you have:
- The medical point of view
- The patients point of view
- And the point of view of people who may have heard of it.

Since this is my blog I'm just gonna write it from my point of view;)

But first my point of view about the Crohn's disease before I was diagnosed: I thought that it's probably something that has to do with your bowel, that it hurts, that you frequently have to go to the toilet, that you become very skinny and have to be on a diet. Oh and that it was Chronic eventhough I couldn't really understand what that would be like for someone.

Many people would first disribe Crohn's as a chronic disease in which (parts of) your colon and/ or small intestine is/are inflamed. Yes, that's partially true. That's also my short version.

The longer version is that Crohn's is something you were born with, it's already in your genetics. It's a autoimmune disease and sooner or later you will start having the symptoms of this disease. There's something going wrong with the defence mechanism of your cells. You have this army in your body who's only purpose is to protect you from intruders, for instance bacteria that make you sick. When you have Crohn's, your army is not the smartest one on the planet. They fight with each other and are making antibodies against your own tissue. With Crohn's this will cause an inflamation of the gastrointestinal tract. That means from mouth to where you poop. The symptoms are numerous but the most damaged part is usually the bowel.

What is a fistula?

For this topic I'm gonna quote Wiki first: a fistula is an abnormal connection or passageway between two organs or vessels that normally do not connect.

Did you know a fistula can occur from head to toe?

With Crohn's fistula's usually occur:

• Anal (perianal), these connect the anal canal to the surface of the skin near the anus
• Bowel to bladder (enterovesical or colovesical)
• Bowel to vagina (rectovaginal)
• Bowel to skin other than near the anus, like the abdomen (enterocutaneous)
• Between bowel and or intestines (enteroenteric or enterocolic)

About 1 out of 3 people with Crohn's will sooner or later develop a fistula(or two). Fistula's are much rarer in people with Colitis.

I have a fistula in what they so clinically call the perianal region. That means the fistula is near my rectum. When I have to discribe to people what it is, I always have two kinds of explanations:

1. it's like a pacman. A pacman (bacteria) has been eating it's way through my inflamed bowel wall searching for a way out. Don't ask me why but this pacman just kept eating his way down to my butt, of all places. Guess he thought this was a shortcut. The path he has created is what we call a fistula;
2. it's like the white nerve you see in steak.

The longer version is that the inflammation with Crohn's can spread through the whole thikness of the bowel wall. When this happens particularly in the lower part of the bowel it can cause small leaks and abscesses(collections of pus). As the abscess develops it may 'hollow out' a chamber or hole. This then becomes a passage or channel linking the bowel to another loop of bowel, another organ, or the outside skin. When the abscess bursts, the pus will drain away, but the passage or channel may remain as a fistula.

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http://bodymri.stanford.edu/clinical-services/perianal-fistula

http://bodymri.stanford.edu/clinical-services/perianal-fistula

*Above a MRI of a Fistula, the white stuff you see is the Fistula track

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Crohns

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