INSIDE/OUT: My Battle With IBD (Full Documentary) | Rebecca Zamolo



Once I Let Go of My Colon, I Could Finally Take a Giant Bite out of Life

The Fight to Feel Normal

After diagnosis I tried my best to maintain a so-called normal life and cope with my new diagnosis. I was immediately started on an extremely high dose of steroids and stayed on it for years. I started a chemotherapeutic agent and powerful immunosuppressant. I became increasingly immunodeficient from all the medications I was on; I developed shingles twice; I lost all of my hair and had to be isolated at one point. I tried everything to try to alleviate pain and symptoms. I tried the holistic route. I changed my diet. You name it, I have been on it. I even tried experimental drugs not yet approved for Crohn’s disease. I stayed on these medicines for years in hopes that they would miraculously begin to start working, and all my pain would disappear.

cocktails for a cure

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 I exhausted all options I had to have surgery. I went into my first surgery with such high expectations; I was admitted to the hospital in hopes that this surgery would relieve me of my pain. That was all but the case. After my first surgery, all hell broke loose. I was the sickest I had ever been. I began constant stints of hospital stays and procedures. I began to suffer immensely with new symptoms.  I was constantly losing blood, deathly tired, and I could barely get out the bed. As a result, I had to have a blood transfusion. Couldn’t take that much longer, so I had another surgery. I am not certain I ever experienced a remission. Severe Crohn’s had become my norm.

For over a decade, I adapted my life to live under excruciating pain on some days and in general pain most days. Crohn’s Disease took my health in every way possible way. It distorted my mental and physical health. I became oblivious to the fact my quality of life was gone.

During my last surgery, I had a total proctocolectom (which removes the large intestine and rectum) leaving me with an ileostomy.  I held on as long as I could to my colon because if it didn’t work then what next? I was trying desperately to be “normal” by clinging to the very thing that was slowly killing me.

But in the end, I had no choice to lose the colon, and it was the best thing I did. My only regret is that I didn't do it sooner.  My quality of life improved, and feelings that had escaped me, such as hope, resurfaced.

Embracing a New Normal

Mein Mexico

This disease has radically altered my life, as well as the lives of those who are close to me. For over a decade it has been a never ending roller coaster of feelings and emotions, learning to cope with a chronic illness. On the days that it seems as if I can no longer take another insult to my body and mind, I realize I can. I have therefore chosen to make the best of it. I decided that I wanted to make a difference and improve the lives of others dealing with not only IBD but others living with an ostomy. I aim to encourage young women and men to embrace their ostomy through my blog and volunteerism with CCFA. I am living my new normal. I am in love with my new body, a body which saved my life in more ways than one. I want others to embrace their new normal and not be afraid or ashamed of having an ostomy. My life with Crohn’s has been difficult to endure, but it has also taught me endurance. I have extreme gratitude for my journey with Crohn’s because without it I would not have stumbled upon my ability to persevere, and to teach this perseverance, in turn, to others.

Gaylyn Henderson works in Public Health. To follow Gaylyn her blog is GutlessandGlamorous.com, Twitter @GutlessGlamour Instagram: @GutlessandGlamorous and Facebook Facebook.com/GutlessandGlamorous

Read more stories of struggle, strength, and survival on Everyday Health’s My Health Story column.

Last Updated:3/3/2014
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Date: 06.12.2018, 17:36 / Views: 32153


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