My Ulcerative Colitis Story:
I once read that ‘what doesn’t kill you, only makes you stronger.’ However I never really found the true meaning behind it until this past year. When I think back on my childhood, I am faced with an overflow of happy memories. What I remember doesn’t consist of stomachaches and worrisome thoughts, but instead a healthy child with a full of life attitude. That was until I reached my high school years.
In the homestretch of my junior year, I was diagnosed with Ulcerative Colitis. As a sixteen year old girl laying on a hospital bed coming out from anesthesia, it was those two words that gave me a reason for all the suffering and confusion I had been facing for far too long. Those two words were an excuse for the embarrassment and anxiety, and a logic for the adversity. Those two words defined what I never could put into words for those that surrounded me everyday.
With my diagnosis came another word, chronic. As fearful as I already was from a procedure I never thought I’d have experience until my adulthood, I became terrified. From being an English vocabulary word, I understood what chronic meant. Lifelong. As I looked into my new doctors eyes, I knew I didn’t have any other option than to believe him when he said it wouldn’t be long until I felt better. With several following weeks spent in doctors’ offices and at multiple hospitals, I began to become familiar with the idea of my disease. And with these visits, began the medicines. Little did I know that with the medicines I would experience another kind of pain. After my diagnosis, I was quickly put on a high dose of steroids and immediately noticed the difference. As the stomachaches lessened and my insides started to heal, I was braced with another challenge. What my doctor informed me for what would be the side effects of the steroids, did not come close to what I then battled.
As the summer began, I noticed the rapid weight gain. In all the areas any teenage girl would fear gaining weight in. My face gained the most water weight from the drug and day by day my reflection in the mirror became more different from the girl I used to see. With this came a different kind of pain: insecurity and anger. Ultimately the medicine had turned me into a monster that my family feared being around. I was never satisfied and set off too easily. I had lost a sense of confidence and reality. It was then that my family and friends began to suffer as well.
As the summer came to a close, I was overjoyed to hear that I would begin to rapidly taper off the steroids. In my head, this meant that things would slowly settle back to the way they used to be. However, what I didn’t expect was the return of the painful, uncontrolled, and abrupt life I had recently lived but seemed so far away. As fall started up again, so did the doctors and hospital visits and procedures I thought I’d never go through again. With the unknown of why I wasn’t getting any better, my senior year seemed impossible to enjoy.
Most of the fall and winter months, I spent trying to hold on and convincing myself I’d find a cure soon. I tried countless medicines, even some that involved weekly trips to Boston just to receive. Most of my senior year was spent sitting restless in doctors’ offices, or apprehensive in class at school of what the day could bring. Not only had I been cursed with an incurable disease, but with this began years full of anxiety.
There became a point where I knew I couldn’t live my life another day feeling like a trapped hostage. I had been afraid to experience so much of my high school career because of an uncontrollable illness. Originally I had feared the idea of having my colon removed as a senior in high school when it first became an option, but as the never ending battled continued I knew I would be making the right decision. When the sun rose on the morning of my surgery, my stomach felt the butterflies and my mind experienced the worry. However as ready as I felt, I was still unprepared for what the next weeks would bring.
Looking up at a blurry clock on the wall, I remember trying to form sentences to figure out if my surgery had been successful or not. When a blonde woman I had never met before told me everything had gone as smooth as it could, I went into a deep sleep and the following days were a blur. When most medications had worn off, I realized that many days had gone by that I couldn’t remember. I started to notice the tubes that came out of so many different parts of my body, and the pain that wouldn’t ease. Everyday from then on was a struggle. Lying restless and homesick in a hospital bed a hundred miles from my home brought tears to my eyes constantly. I couldn’t seem grasp the idea that I would get better from this surgery when it felt like I had taken a thousand steps backwards.
Without being able to do anything on my own, I lost a sense of independence. I hated the idea of needing so much help just to brush my teeth or take a shower. However each day I became a little bit stronger. I kept pushing myself to hold on because I knew that soon enough all the rain would wash away and I would soon see the light of day. As difficult as some days were, I continued to hold on and keep believing. Looking back I realize that everything I went through over the past few years has only made me so much stronger than I ever imagined. If I’ve learned anything from having this illness and everything it put me through, it would be that what doesn’t kill you, only makes you stronger.
Submitted by Brenna in the Colitis Venting Area
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