Winner, winner! Inspirational role models we look up to. Ostomy awareness involves advocacy, and to be effective in advocating for change we need influencers. Advocacy can be standing up and speaking out for a cause, voicing concerns about misconceptions, or connecting with individuals and organizations who need support. All of these exceptional women have won awards this year for their public advocacy efforts. Amber Wallace won a WEGO Health Award. View image on Twitter WEGO Health@wegohealth Congratulations to 2018 #WEGOHealthAwards Best Kept Secret winner Amber Wallace! @ostomydiaries Check out all the finalist & winner videos from this year’s celebration here: https://wegoh.co/2OWMWdb 4:50 PM – Oct 8, 2018 4 See WEGO Health’s other…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
Real Talk about Ostomies
On the eve of World Ostomy Day, I write this blog post in hopes of debunking many of the myths surrounding living with an ostomy. So here goes nothing… I always get super excited when friends and family muster up the courage to ask about my ostomy. It makes me feel so connected to them and like I’m being recognized for all of me and not just the healthy-looking parts of me. I feel their concern, their love and most of all, their interest in how I live my life, chronic illness and disabilities abound. See, the thing is, living with an ostomy is often the proverbial elephant in the…
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No More Secrets: An enlightening film that reveals the stigma of having an ostomy in India
In a world that’s still struggling with the concept of life-saving ostomy surgery, India comes chock full of psychosocial taboos. In addition to the challenge of costly medical supplies, ostomies are widely viewed as unacceptable in this country and can even become barriers to pursuing careers and relationships. Filmmaker Anisha Vijayan recognized the need to educate the masses about living with an ostomy in India. After months of interviews and countless hours of research and production, her documentary No More Secrets was released earlier this year. She shared with OC the inspiration behind creating the film and how it’s offering encouragement to ostomates in South Asia. Read the full story on…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
The Value of Support Groups
In a world where medical professionals have only a few minutes to go over a whole slew of symptoms, medication interactions, and surgical complications, it is impossible to cover the psychosocial aspects of one’s condition(s). These aspects include methods of coping with the emotional roller coaster of living with inflammatory bowel disease (IBD).This is where support groups come into the picture. They fill that gap between doctor-patient interactions and provide real-time support and understanding to patients caught in the rigmarole of hospital visits, health insurance, and invasive testing. But more than this, the true value of support groups lies in empowering patients by fostering lifelong friendships through a deep understanding of…
- acceptance, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
Metamorphosis
This past weekend marked 3 years since my series of surgeries at the Mayo Clinic in Minnesota. That trial was my greatest test to date. 3 surgeries back to back to clean out remnants of j-pouch, rectum and anal sphincter that left behind a wound the size of a small football. From daunting saltwater whirlpools, Jackson-Pratt drains, Hydrogen Peroxide flushes into my pelvis, a wound VAC and procedures under sedation every other day to clean out the wound. I was on 6 different painkillers and I was barely hanging on for life. In the months prior, I had drains galore, one from my back down my leg with a bag…
- acceptance, advocacy, awareness, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
Being Brown and Coming Out of the IBD Closet: The Chronic Illness Experience
***Originally published in Brown Girl Magazine on August 2nd, 2018: https://www.browngirlmagazine.com/2018/08/being-brown-coming-out-ibd-closet/*** Just as soon as he landed from India, a good friend called me, half laughing: “Tina, I know exactly what it feels like to be you now! I’ve had diarrhea for the last three weeks after eating at Elco Market in Mumbai! What do I do?” Another time when I was deathly ill, languishing from anemia, malnutrition and weight loss due to 20-30 bloody bowel movements a day, I remember the aunties ridiculing me. They would cackle behind my back as they proclaimed that I did this to myself. “She must have eaten lots of junk food and drank…
- 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…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
12 News to Your Health IBD Segment
My TV debut with News 12 NJ! I discuss having inflammatory bowel disease (IBD) and ostomy surgery alongside Rosemarie Golombos, Executive Director of the NJ Chapter of the Crohn’s and Colitis Foundation. Thank you, Prashanthi Musapet, for the special segment and for helping to create awareness and acceptance for these awful diseases!
- acceptance, awareness, caregivers, colorectal cancer, coping with flares, Crohn's, Father's Day, living with IBD, patient rights, stigma, Ulcerative Colitis
Honoring My Late Father
(Daddy at his Doctoral Commencement at Columbia University in the ’70s.) This Father’s Day I honor all fathers. I especially honor my father who devoted his life to the sciences and to his family. He toiled endlessly until the very last minute working until he couldn’t anymore all to ensure his wife and daughters could get by without him. Not a day goes by that I don’t wonder how much better life would have been if he could have lived to see his girls all grown up. ? His battle with Crohn’s and later colorectal cancer may have taken his life but he has become my inspiration to fight incessantly for my…
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Coming Out of My IBD Closet as a Desi Woman
Every single year the Crohn’s and Colitis Foundation chooses a local Adult Honored Hero who shares his/her story and is honored at the Take Steps Walk in the spring. And every single year I attend the New York City walk, raise awareness and funds to help find treatments and someday a cure for these awful diseases. I bring my friends and my family together along with the Foundation’s Women’s Support Group so they can see that we patients don’t suffer alone, that many folks from all walks of life have been through hell and back at a young age. And every single year, one of my closest girlfriends has tears…