We all encounter times in our lives where our world is spinning out of control, like a vicious tornado that destroys everything in its path, resulting in devastating consequences. Those times have been greatly amplified for me as a lifetime of life altering events have been crammed into the past three years. I have experienced an array of emotions that immensely challenged my capabilities. These arduous events tested my endurance, patience, and perseverance every day. They forced me to muster every ounce of strength I could find and use that as a shield to keep me from completely falling apart.
It's difficult to put the past three years into an organized chronological format. In my head the events are scrambled and in utter disarray. My world completely fell apart in December 2010 when necrosis took over the bones in my knees and Crohn's took a sudden sharp plunge into a vastly deep, dark hole. The days, weeks, and months are all a blurred horror of a depressing monotonous bed ridden life. The only change being switching from a hospital bed to my own bed many, many times.
Fate had other plans for me in June 2013 when I made the biggest decision of my life, that only looking back now can I see the magnitude in the truth that everything happens for a reason. It took me a long time to open up about the reality of my disease, and there is another significant reality that I have not publicly opened up about yet. There is another difficult part of my life that coincides with the challenges of Crohn's and only added more insult to injury. I do foresee writing about it in my future, but the truth of the situation impacts more than just myself. All I can say is that it is what forced me to make the decision that has taken me to where I am today.
In June I moved from Texas back to my hometown in Jersey. I had currently started a new drug called Tysabri and was skeptical that it could really improve things, but hopeful because the thought of surgery was too scary to be an option. As the weeks went on my condition quickly deteriorated. Pounds just fell off my body as easily as leaves fall off of trees. Getting out of bed was near impossible as weakness consumed every muscle and bone, while the lower right quadrant of my stomach constantly writhed in excruciating pain.
Every doctor for the past three years pushed surgery as the only plausible option. I was adamant against it and determined to find another way to make things better. The weeks continued to pass me by as my condition only continued to get worse every day. The pain was so intense that no amount of pain medicine could even remotely make it go away. When the pain became too much to bare and everyone around me looked as though my expiration date was quickly approaching, I knew it was time to accept the very thing I had feared for years. Surgery was imminent.
By the time I accepted my fate, I learned an abscess had developed into a fistula in the right lower quadrant of my abdomen. On top of that and an immensely ulcerated colon, my terminal ileum had become obstructed and my bowels were perforated. If I didn't want to die, I had to get my colon removed. Although I was experiencing about as much bad luck a person can have, I was fortunate enough to find the best surgeon at the University of Pennsylvania. I had to undergo a series of arduous tests every day for a week, so she could have a clear cut picture of exactly what needed to be removed in surgery and what could be salvaged.
I had never been more nervous in my life when the day of surgery arrived. Irrational thoughts flooded my brain as I convinced myself I might never wake up from surgery or something terrible would go wrong. I had developed a very high tolerance to opiates through the years due to the severity of my disease. Because of this, the anesthesiologist gave me a horse tranquilizer to ensure I wouldn't wake up during the procedure. Nothing could prepare me for the amount of pain I was about to endure when I woke up.
I had been given so much pain medication during the surgery, I woke up to a spinning room and immediately threw up. That felt awesome on my stomach which now had a gaping four inch incision stapled together starting from right above my belly button down. I had a temporary ileostomy; a small part of the small intestine is brought through an incision on top of the right side of the abdomen (called a stoma) where poop involuntarily comes out to give the rest of your bowels a break so they have a chance to heal. Most of my colon was removed with the exception of the rectum, anus, and a part of the sigmoid colon. Because the surgeon was able to salvage those remaining parts of my colon, when my body has adequate time to heal, another surgery will take place to put the stoma back inside and reconnect the pieces so I can move my bowels normally again.
The weeks that followed surgery were a painful blur as I was on high amounts of pain medication due to the fact that I was very sick, weak, and only 80 lbs at the time of surgery. I began to feel very hopeless and depressed because the pain was exceptional and overwhelming. There were moments I completely regretted going through with it at all, as I stared at my deep incision in awe of the reality of what lies beneath the surface of the epidermis. A surge of self esteem issues rose to the surface as I obsessively couldn't stop staring at my incision and stoma. I kept pondering how I would ever be confident again and if any man would ever accept the changes in my body. Thoughts like this began consuming my mind as I feared that no one could ever love me again, not even myself.
I had been bed ridden for so long that getting up was a long process. The muscle atrophy made each step I took almost unbearable as my heart pounded and my legs felt harder to move than concrete. With some physical therapy and a lot of determination, walking slowly became easier. The immense pain finally began to subside as my old self began resurfacing. After six long and intense weeks in the hospital, I was finally able to go home.
Two months have passed since I have been home, and my body is improving every day. My appetite has finally come back full swing and eating is enjoyable again. I have yet to undergo the reversal surgery and a double knee replacement before my life can completely go back to normal. I still face physical, emotional, and psychological issues as I fight my way back to my old self. Even though I am FINALLY in remission from Crohn's, there is no cure for this disease.
Just because I have Crohns, it does not define who I am. I still want what every young woman desires; a career, true love, a family one day, but most of all acceptance of myself. Each of these challenges has proven that I am a strong individual who will continue to fight until the bitter end. Even though I am a fighter, I still have insecurities and fears for the future. It is very important for me to share my story due to the impact it has had on my life; but all I really desire at the end of the day is for people to see me for more than just the girl that has Crohn's.
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