Living with The Invisible Disease: The Start of the Journey


Crohns to many people is a very unknown and unheard of disease amongst generations. Which is why people refer to autoimmune disorders as an invisible disease. For goodness sake, I had no clue what it was before I got diagnosed with it at the age of 15.

And as a 15-year-old, all I knew was how much I wanted to go to my softball practices, band concerts, hang out with friends, go to school, and just eat a whole meal without feeling sick. 

There are so many people who talk about losing weight fast and quick.
But no one understands the mental effect losing 25 lbs in 2-3 months had on me. I wasn't even trying to lose weight; I was hungry but the food was going right through me. 

Has anyone ever felt like they had no control over their body? 
Because I sure didn't. 

I was bending over in pain no matter where I was or what time it was and it felt like knives were stabbing me constantly. And I had absolutely no way to control it.




On Easter 2016, my dad and I decided it was time to go to the doctor because we had no clue what was going on. And let me tell you I had them stumped on this one. There are a lot of patients who aren't as lucky as I was to have an amazing group of people who worked hard to find out what was wrong with me. These people go awhile being misdiagnosed with things like irritable bowel syndrome. 



As young as I was, my doctor wanted me to go to an adult gastroenterologist who made me take multiple blood tests, and samples. Who then realized I had an abnormal amount of white blood cells that were attacking each other.

After this, he suggested that the best way to distinguish between Ulcerative Colitis, Leukemia, and Crohn's was to get a Colonoscopy and an Endoscope.

And for those of you who never had a Colonoscopy, I can speak for everyone when I say the prep they make you drink and the fasting they make you do the day before is the absolute worst. 

The. 
Worst. 

Waking up after the procedure felt weird because I knew at this point I was getting more answers than when I walked in the door. Meeting up with the doctor afterward seemed like a med school class. He was using all of these medical words, that Crohn's is a "chronic autoimmune" disease and creates ulcers in the inner surface of the bowel. This inflammation can happen in not just the large intestine "the colon" but in the small intestine as well. 

For me, it was a long road to find out that I had it first hand. For years since 3rd grade, I used to sit in the nurse's office and I was afraid the teachers never believed me. I feel like they commented about how I was trying to get out of class/to get out of tests. I always thought it was just bad timing that the unbearable pain occurred before a test. Which now makes total sense cause most of my flare-ups occur when I'm under extreme stress.

And as we all know school is not a walk in the park for everyone.

My life after this moment changed forever when I heard there is no cure, and that I have to change my diet and lifestyle forever.

The low fiber diet was the most interesting diet I have ever heard of before. There were about 7 pages of things I couldn't eat for goodness sakes.

Most of the foods were the normal foods everyone talks about that are "good for you."

Me not so much.

Foods like grains, vegetables, fruits, seeds, yogurt, ice cream, bacon (anything with grease), whole-grain graham crackers, pretzels, whole milk, potatoes with skins, raw meat/ fish like sushi, cheese, an excess of butter, spicy foods, coffee, oils, corn, chocolate, and carbonated beverages are things they are strongly against during flare-ups.

I remember looking at this list and thinking


THERE IS NOTHING TO EAT!




Ironically my favorite foods were and still are chocolate, steak, sushi, bacon, and hot wings.

And don't get me started on people thinking there are cures for Crohn's. Most of these people that say this don't have Crohn's and obviously don't know how Crohn's works.
First off there is no cure for Crohn's disease, only ways to make daily life bearable. Every day I hear people tell me about all these remedies of Crohn's disease like flaxseed oil or aloe vera. And I can't even look at some people cause I'm stuck on the fact that they think seed oil and plants can cure inflammation and ulcers. 

Are these people CRAZY?! 


This disease has a different journey for everyone that gets affected by it. Some people need surgery, some people only need steroids, and other people need infusions and shots. 


Copyrights
http://www.quickmeme.com/meme/3otimm
https://draxe.com/health/gut-health/crohns-disease-symptoms/
dr3.livingnaturallyautoimmune.com/
https://rubellesmoon.wordpress.com/2014/05/13/how-i-feel/



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