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. 

Comments

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    I got married to my first love when I was 23 and we have a beautiful daughter together.My husband literally adore the ground I walk on and he means the world to me. We were sohappy as a unit until 3 rd September 2018, when tragedy struck and I was involved in a ghastlymotor accident which left me bed ridden and confined to a wheelchair ever since.It was as though my whole world has crumbled as I became helpless and a burden to my loved ones. My little daughter of 8years suffered the most emotionally in all of this. However, my husband was giving me all the support both physically and emotionally as I was being nursed back to health. However, as my health deteriorated with the passage of time, I noticed my husband’s attitude towards me had changed. He started keeping late nights and coming home drunk. This continued for some time and then what I feared the most happened. One faithful morning, he moved out of the house without a word. He wouldn’t return his calls or messages. Even his family members claimed not to know his where about. By this time, my kid sister had moved in with me to help with the chores and taking care of our daughter. I had countless sleepless night and would drench my pillow every night before going to bed. Then there was this Sunday evening that my kid sister invited her friend over for dinner. He met me at the lobby on my wheelchair and was very warm and chatty. It was obvious my sister had already briefed him on my situation. We ate dinner and during our conversation, he said his acquaintance had a similar situation like I did with my husband and the lady’s husband is now reunited with her and their kids after she encountered some certain man. I hesitated at first since my case was different but my sister somehow convinced me to give it a try and I obliged. We connected and I was introduced to DR MARIAN. Let me not bore you with my long sermons. To cut the long story short, the only man I ever loved, the man that walked me down the aisle is back home where he rightly belong. RIGHT BESIDE ME AND MY DAUGHTER Thank you DR MARIAN for taking your time to attend to my needs. I had already given up on online spells Because of my past experiences with scammers who claim to be what they are not, But DR MARIAN made me happy again. DR MARIAN is an expert at what he does with 30 years plus of experince and i strongly recommend him to anyone facing any matrital issues as his works are 100 percent GUARANTEED which i can continue to testify to. DONT LET THESE NUMEROUS ADS YOU SEE ONLINE OF SOMEONE TESTIFYING ABOUT A DR FOOL YOU AS THEY ARE ALL FAKE. DR MARIAN STILL REMAIN THE ONLY TRUE SPELL CASTER I KNOW AS HE HAS PROVEN TO BE LEGIT AND HELPED ME. SO BE SMART AND CONTACT HIM NOW TO GET YOUR PROBLEM SOLVED VIA:

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    DISCLAIMER!!!
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    My story is like that of Beauty and the beast.
    I got married to my first love when I was 23 and we have a beautiful daughter together.My husband literally adore the ground I walk on and he means the world to me. We were sohappy as a unit until 3 rd September 2018, when tragedy struck and I was involved in a ghastlymotor accident which left me bed ridden and confined to a wheelchair ever since.It was as though my whole world has crumbled as I became helpless and a burden to my loved ones. My little daughter of 8years suffered the most emotionally in all of this. However, my husband was giving me all the support both physically and emotionally as I was being nursed back to health. However, as my health deteriorated with the passage of time, I noticed my husband’s attitude towards me had changed. He started keeping late nights and coming home drunk. This continued for some time and then what I feared the most happened. One faithful morning, he moved out of the house without a word. He wouldn’t return his calls or messages. Even his family members claimed not to know his where about. By this time, my kid sister had moved in with me to help with the chores and taking care of our daughter. I had countless sleepless night and would drench my pillow every night before going to bed. Then there was this Sunday evening that my kid sister invited her friend over for dinner. He met me at the lobby on my wheelchair and was very warm and chatty. It was obvious my sister had already briefed him on my situation. We ate dinner and during our conversation, he said his acquaintance had a similar situation like I did with my husband and the lady’s husband is now reunited with her and their kids after she encountered some certain man. I hesitated at first since my case was different but my sister somehow convinced me to give it a try and I obliged. We connected and I was introduced to DR MARIAN. Let me not bore you with my long sermons. To cut the long story short, the only man I ever loved, the man that walked me down the aisle is back home where he rightly belong. RIGHT BESIDE ME AND MY DAUGHTER Thank you DR MARIAN for taking your time to attend to my needs. I had already given up on online spells Because of my past experiences with scammers who claim to be what they are not, But DR MARIAN made me happy again. DR MARIAN is an expert at what he does with 30 years plus of experince and i strongly recommend him to anyone facing any matrital issues as his works are 100 percent GUARANTEED which i can continue to testify to. DONT LET THESE NUMEROUS ADS YOU SEE ONLINE OF SOMEONE TESTIFYING ABOUT A DR FOOL YOU AS THEY ARE ALL FAKE. DR MARIAN STILL REMAIN THE ONLY TRUE SPELL CASTER I KNOW AS HE HAS PROVEN TO BE LEGIT AND HELPED ME. SO BE SMART AND CONTACT HIM NOW TO GET YOUR PROBLEM SOLVED VIA:

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