Charley-A New Patient’s Story

This month I have a guest!!!   Charley is a newly diagnosed UC patient; unfortunately–at the age of 16–she’s had a crash course.  She is open and brave enough to share her experience in order to educate others.  Thank you Charley for allowing me to share your story!!
Charley’s Story
December 16 th , 2010. This is a date that changed my life This is the day that
I was diagnosed with Ulcerative Colitis, and auto-immune disease of the colon.
This is the day that I understood that everything truly does happen for a
reason, and what doesn’t kill you can make you stronger.

All my life I have had digestive troubles, but during band camp my junior year,
I noticed running and carrying my snare drum, which was something that had never bothered me in the past, sent sharp pains into my lower abdomen. After

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numerous doctor visits, I was diagnosed with IBS and was scheduled an appointment with a pediatric gastrologist for December, almost 5 months from my when my first
symptoms showed up.

After my first appointment the doctor gave me an anti-inflammatory medicine to
take 3 times a day until the colonoscopy she had scheduled for the next week at Kosair’s Children Hospital, where I would have my procedure done. After waking
up from the anesthesia, I was informed that the doctor had found about seven
inches of inflammation and ulcers in my colon. This meant that about a third of
my colon was inflamed and was the cause of all my pain. The doctor then put me
on high doses of Prednisone, a steroid used to fight inflammation.

I was on multiple medications for my disease, but nothing seemed to help.

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Eventually, in February, my body had taken all it could take. I had gotten to the point to where I was constantly sick and could barely walk due to unbearable pain. After having my steroids increased twice, the doctor sent me to Kosair’s immediately.

My mind was spinning. What seemed like a few months ago, I was fine, and now I was headed to Louisville to be placed under hospital care. My mom was in tears, which scared me because I rarely saw her cry. This is when I knew I was seriously sick.

I spent 5 full days in the hospital, and was diagnosed with C-Difficle, an infection that was making my ulcerative colitis worse. I was put in isolation and given IV fluids, medicines, and countless pills. The doctor even mentioned that if I got much worse, my colon could need to be removed.

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After leaving the hospital I was put on over 30 pills a day to treat my colitis, and still receive IV infusions every 8 weeks. The steroids made me gain 25 pounds, become lactose intolerant, made me lose almost all of my hand function, and made my face swell to where I felt unrecognizable. My confidence was at an all time low.

Months later, I am slowly regaining a “normal“ life. I am off steroids and
slowly improving. I can do simple activities that were impossible in the past. Even though I am doing extremely better, every day is a struggle I will have for
the rest of my life. but this struggle has made me determined to be the best I can be as a person. Ulcerative Colitis had highly affected my high school experience, but I will by no means allow it to define who I am.


3 Comments (+add yours?)

  1. Autoimmune Maven
    May 31, 2011 @ 01:32:58

    Thanks for all of the encouragement! Charley is a sharp girl & I’m really proud of how well she’s handling the whole thing. I was thrilled when she agreed to share her story. Thank you guys for reading!


  2. mo
    May 27, 2011 @ 20:29:51

    What a story. I have Crohn’s disease and had a section of my colon removed a few years ago. It helped with the pain, but not so much for my everyday symptoms. I also have Addison’s Disease, and I take steroids to manage that illness, and I think the steroids help to keep my Crohn’s in check. Keep up with your great attitude and I am sure you succeed in whatever you do.


  3. hibernationnow
    May 27, 2011 @ 19:35:32

    Charley, I admire your courage and honesty. I am just like you except I have Fibromyalgia and an auto immune disease of the thyroid (Hashimoto’s Thyroiditis). I refuse to let my illnesses define me and in my blog I write a lot about Fibro but also about EVERYTHING ELSE, from food to fun to Oprah to grief and beyond. Nice to meet you, Laurie


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