What's the word?

By: Nicole K.

A vast vocabulary has always been one of my strongest tools. As I grew up, my vocabulary has changed, as anyone does. I learned new words like “autoimmune disease”, “Crohn's Disease” and "Stoma Swimwear." 

I was diagnosed with it when I was 14 years old. Before then, I was assumed to be a liar. A typical high school freshman trying to evade class and work. But my mom kept going to bat for me because she knew staying at home all week was making me miserable.

I quickly learned about ignorance and mistrust, so many missed prognosis and doctors that dismissed my pain. I learned words like Remicade, a medication that reduces the effects of a substance in the body that can cause inflammation. 

Fast forward to 2015, I discover some new words: “right hemicolectomy” and “fistula.” All of a sudden, I need an emergency surgery to remove over a foot of my bowels. Two years later, in 2017, I understood the meaning of loss. Loss of self, body, lover, job and confidence. They say nobody likes you when you’re 23. Well 23 did not like me!

In March 28, 2018, my internal dictionary grew into a whole new series: “The Ostomy Diaries.” As someone unresponsive to Crohn’s Disease medication, I was recommended to get an ostomy and so I did. Words like: wafer, flange, coupling, bag and pouch, are part of my day-to-day life. I also got a deeper understanding of survival. Although the medical community doesn’t like to use the word “promise,” they did use it many times with me. “We PROMISE you Nicole you will be able to get out of the house,” they said. “We PROMISE you will be able to get a job,” they said. Over a year after getting my ostomy and that has yet to be the case. 

The ostomy helps me divert my bowel movements pass the places that were badly damaged by ulcers. But now, I pass a mucus created by my colon, which the doctors said it wouldn’t be a big deal, but it is. Now I don’t have as many bowel movements, but I go sometimes 50 times a day to the toilet because of the mucus. I now struggle to maintain whatever weight I gain. 

Nicole wearing stoma swimwear

Doctors suggested that I should get a permanent ostomy, which would mean removing my colon and thus having less mucus to pass. That would be good, except that it wouldn’t mean that my Crohn’s would just magically disappear. Crohn’s Disease can affect anything between the mouth and the anus, the entire digestive system. 

And yet during my doctor visits, my doctor always assumes I am doing better. My problem is that at first glance I am never taken seriously. That has nothing to do with me being pretty or young, it has everything to do with the fact that doctors should never assume that because you look good that MUST mean you are feeling good. 

Nicole with her friends at a Girls with Guts event

Since last January, I have been on disability. I am aware of how lucky I am that my claims were processed so quickly. From May to September of this year I was able to stay away from the hospital, not because I was feeling better but because I grinned and beared it. In August I met someone, he pursued me and he was actually interested in me. Yet I was not aware he had a pill problem and later would find out he stole 30 of my Dilaudid pills, an opioid six times stronger than morphine. My dad, like the angel he is, was able to work with the police and the pharmacy to replace the pills I so desperately needed.

I have my scars from multiple abdominal surgeries and now an ostomy, and I’m a hot girl. Despite my scars and drain, my confidence flows freely as my health does. The two are directly tied, and that’s what truly is saving me. I have joined the Girls with Guts community and attended their retreat back in June. I felt empowered in their company and I am steadfast in my commitment to helping others that have gone through the same as me. I now have the November retreat to look forward to and will continue to be engaged with this community, as I have learned this is the only way to cope with the pain and isolation of Crohn’s Disease. 

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