awareness,  coping with flares,  Crohn's,  Independence Day,  living with IBD,  Ostomy,  stigma,  Ulcerative Colitis

My Very Own Independence Day

           Today, Independence Day 2018, marks 10 years since my colon and rectum were removed in emergency. I was 24 years old, 85 lbs, being fed by a PICC line and the hair on my head was greying from malnutrition. I was dying from IBD my doctors warned me as they urged me to have surgery. I remember that day so clearly when my then boyfriend/now husband, Anand, along with my close friend, Radhika, drove me into the city to have emergency surgery. And when my surgeon came up to me in the emergency room, he expressed that I may be too far-gone, that he was unsure I would come out of this alive. Nevertheless, I told him with all the faith and courage that was left in me to take my colon out and give me an ostomy. It was a huge step for me after having watched my father suffer in misery and in shame with IBD and an ostomy before he passed away.
            Despite all the trauma surrounding Independence Day, all that comes to mind today isn’t the horror of the last 20 some odd surgeries and hundreds of hospitalizations and procedures I’ve endured over the last decade. What comes to mind is the word, “shukr,” which means thankful in Urdu. I’m thankful for so many things. I’m thankful to be alive. I’m thankful for amazing doctors. I’m thankful for my mom, husband and amazing friends who continue to support me even today through this arduous process. I’m thankful to modern medicine and surgical techniques that now save lives that were taken just years before me. I’m thankful to have doctors learn from my aggressive disease progression and help other patients like me. And most of all, I’m thankful for my very own day of independence when I can celebrate the excision of my disease-ridden colon that nearly killed me AND the birth of my stoma that gave me life again.
            This illness can take my health. It can take my career. But it cannot take my spirit! Shukr always and forever.

Tina is a health advocate for patients living with chronic illnesses and disabilities. Via her writing, social media and public speaking engagements, she spearheads public health causes, including those creating awareness for inflammatory bowel disease (Crohn's & Colitis), life-saving ostomy surgery and initiatives supporting global women's and minorities' health. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance. She owns her chronic illnesses and disabilities and her goal is for you to as well!

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