Tina Aswani Omprakash was diagnosed with ulcerative colitis at 22-years-old. After many years of suffering from the disease, her colon was removed and she now lives with a permanent ileostomy. Tina shared with us how Inflammatory Bowel Disease has changed her life.
“I felt like I was at the top of my game after graduating from college with a career lined up on Wall Street—that’s when the colitis hit. At age 22 – just when my life was about to begin – every day boiled down to “where’s the nearest bathroom?” I began to realize how questionable my life was—bolting to bathrooms to avoid accidents, wearing adult diapers, using enemas, and taking medication daily.
Tina and her father, 1985.
It was a scary time for me because my dad passed away at 39-years-old from a severe case of Crohn’s disease which turned into colorectal cancer, and his sister quickly followed suit. Now here I was, about to have my first colonoscopy (the first of hundreds) and hearing words like, ulcerations and inflammation—it was unsettling and downright terrifying going through this experience.”
She continued with her career in investment banking, but had taken time off to heal from multiple surgeries. The stress, fatigue and constant flare-ups wore her down. Then, in 2008, Tina took a vacation for her 24th birthday that changed everything.
“Ten years ago, after returning from Cancun I caught a horrible case of food poisoning and was never the same again. I developed C. difficile, a debilitating infection in my colon from the antibiotics which resulted in 15-20 bowel movements a day, nausea and dehydration. Later on, the C. diff brought on an ongoing colitis flare that lasted eight years. I continued to lose weight and along with it, I lost my self-worth. I remember crying in my gastroenterologist’s office when I had an accident in the hallway. By mid-2008, I tried every medication and alternative treatment available. I lost another 50 pounds and was being fed through an intravenous PICC line in my arm. I felt like I was dying.”
On the fourth of July in 2008, Tina was rushed to the hospital to have her colon removed in an emergency ileostomy operation. She was so ill at the time, doctors were unsure she would survive.
“I had no choice. I was told death was certain if I didn’t have surgery. As Independence Day came and went, I woke up alive and very thankful to no longer have a disease-ravaged colon inside me. Literally overnight I had a brand new best friend, my stoma “Snuffleupagus” (named by my devoted husband). It took a few more months of IV nutrition and antibiotics before I began to eat. I fully recovered six months later and went through more surgeries to create a J-pouch which allowed me to use the bathroom normally again. Unfortunately, it wasn’t long before I developed pouchitis (inflammation inside the pouch) with symptoms that felt very similar to ulcerative colitis. Then the pouch began to fistulize, burrowing holes into other organs. My diagnosis suddenly changed from UC to Crohn’s disease! I fought so hard for six years to keep that J-pouch, but had exhausted all my options—I felt like I had failed. Yet again I was rushed to the operating table, this time for a permanent ostomy.”
In 2016, Tina finally heard the word “remission” for the first time in her life and was overjoyed. When a disease takes control over so much of your life, how do you begin to live again? For Tina it started by giving back. Her personal mission for creating the blog, Own Your Crohn’s, is to raise awareness for Inflammatory Bowel Disease and lifesaving ostomy surgery.
“After three near-death experiences, I am thankful to be alive. Thankful for ostomy surgery. Thankful for every single breath. Every time I’ve fallen, I had to reach up higher than before to survive. That is my very own personal miracle and greatest achievement to date. My medical staff, friends and family, and the Crohn’s & Colitis Foundation have been a constant support system. Every time I lose hope, they help me carry on. My battle with IBD has given me a newfound appreciation for life. Not a single day goes by without remembering how far I’ve come and how much I have yet to live. I may not be able to work yet, but I am able to contribute to society through volunteering. Co-facilitating the women’s support group of the Greater NYC Chapter has given me a platform to raise awareness for IBD and help others advocate for better treatment and care. I also participated in a case study for IBD conducted by renowned doctors and surgeons across the country, with the hope their research will someday serve future patients.”
Each year, the Crohn’s & Colitis Foundation recognizes patients at Take Steps walks nationwide as Honored Heroes. Tina was recently honored by the Greater NYC Chapter for sharing her story to raise awareness and inspire others.
“12 years, hundreds of procedures and 20+ surgeries later, I’m happy to say that I am still here today—continuing the fight in loving memory of my late father, for my dear mother and husband, as well as all my friends who stood by me along the way. I fundraise for the Crohn’s and Colitis Foundation so that new treatments can be developed and possibly a cure someday. I advocate for you and me, for all of us with IBD. Thank you for selecting me as an 2018 Honored Hero, New York City!”
Join Take Steps and walk with Tina’s team on Thursday, May 17, 2018 at Pier 16 at the South Street Seaport in Queens, New York. For more information about this event and to find a Take Steps walk near you click HERE.
Connect with Tina on Twitter @ownyourcrohns and Facebook.
Originally published in OstomyConnection. https://ostomyconnection.com/news-and-culture/tina-aswani-omprakash-take-steps-honored-hero
