Reporting on What is going on in the World. I'm a Crohn's Advocate and currently a Volunteer for the Crohn's and Colitis Foundation Of America San Diego and Desert Area Chapter.
Friday, October 28, 2016
Gutless & Glamorous: Gaylyn's Story
Gaylyn shares her beautiful story about being Gutless & Glamorous. For more than half of my life I’ve lived with a chronic illness that has affected, changed, and altered the course of my life. I was diagnosed with Crohn’s disease when I was 14 years old. At a time when your body is changing, life is new and exciting; my body started to turn on me and changed my life forever. I quickly learned I had no control of the changes that were happening to my body but what I have learned is that I do have control of how I respond to these changes. I have learned and continue to learn that I must remain true to myself to get through my often very difficult life with Crohn’s disease.
The summer before I began high school, I started experiencing symptoms such as abdominal pain, diarrhea, and severe weight loss. I knew in the back of my mind that something was terribly wrong. I knew that my pain was increasing and so severe that I needed something or someone to help get my life back. After a routine diagnostic group of tests, I was diagnosed with a severe case of Crohn’s disease. Little did I know at that time my life as I knew it was over. After I was diagnosed, I tried my best to maintain a so-called “normal” life and cope with my diagnosis. I was immediately started on an extremely high dose of steroids and stayed on it for years. I started a chemotherapeutic agent and immunosuppressant. I became increasingly immunudeficient from all the medications I was on; I developed the shingles virus twice; and I lost all of my hair. I stayed on these medicines for years in hopes that they would miraculously begin to start working and all my pain would disappear. Each time I tried a different promising drug it was in hope that my misery would subside. And after each drug failed me, my optimism began to fade. After exhausting all options, I had to have surgery.
I went into my first surgery in 2005 with such high expectations; I was admitted to the hospital in hopes that this surgery would relieve me of my pain and all would be well. That was all but the case - after my first surgery, all hell broke loose and I became the sickest I had ever been. I began stints of constant hospital stays and procedures. I suffered immensely with new symptoms. I was constantly loosing blood, was deathly tired, and could barely get out the bed. Shortly after that I had another surgery in 2008. I am not certain if I ever experienced a period of remission, severe Crohn’s had become my norm. For over a decade, I adapted my life to live while being in excruciating pain some days and in pain most. I became oblivious to the fact my quality of life was gone.
My last surgery was in 2011 during which I had a total proctocolectomy (removal of the colon and rectum), leaving me with a permanent ileostomy. I tried to hold on as long as I could to my colon. I was striving to be “normal” by clinging to the very thing that was slowly killing me. I strived to remain normal due to the stigmas associated with having an ostomy. But it came a time that I had no choice. Having my colon removed was the best thing that has happened to me. And now there is absolutely no way I would want to go back other than to do it sooner. My quality of life improved, hope resurfaced, and something that I least expected to emerge from this surgery grew stronger, self-love.
I’ve gone through many different physical changes due to having Crohn’s disease from the medicines I’ve been on, the surgeries I’ve had, and at times due to the cause and effect of living with the disease. Because of those physical changes, I’ve gone through many emotional changes as well. The stigma that comes along with having Crohn’s disease plus having an ostomy can have a drastic impact on self-esteem and self-worth. Through it all I have learned to remain constant in my beliefs and that is to not let the beliefs of others control how I view myself. I’ve learned the importance of loving myself and staying true to myself and knowing I am capable of overcoming anything. I’ve learned that one of life’s most rewarding challenges is to accept yourself for who you are and all that you are completely and consistently. I am so in love with my new body; my new body saved my life in more ways than one. I started Gutless and Glamorous as a way to empower and uplift those living with chronic illness and to raise awareness and erase the misconceptions of living with an ostomy. I don’t want others to suffer because of the fear of being stigmatized; it is my goal to help erase the stigma forever.
My body tried to kill me. Yet I survived. But it left behind a constant reminder that I must look at daily. I know what it’s like to see your reflection in the mirror and feel unattractive. I used to be disgusted at the very thing that restored my health. But then I realized, that anything that has the power to save a life can be nothing but beautiful.