advocacy – Page 4 – Own Your Crohn's

advocacy, awareness, Coronavirus, COVID-19, Crohn's, Disability Justice, invisible illness, living with IBD, Ulcerative Colitis

An Interview with News 12 NJ: How Does Coronavirus Affect YOU?

April 6, 2020

Earlier today, News 12 NJ journalist Prashanthi Musapet interviewed IBD patient advocate Tina Aswani Omprakash of OwnYourCrohns.com on Instagram LIVE on her experience as an immunocompromised patient living with Crohn’s Disease in the midst of the #COVID19 pandemic. To watch the interview, view the video below. In the video, you will hear Tina’s thoughts and experiences about being #HighRiskCOVID19 and how critical social distancing and taking responsibility for public welfare is during this outbreak to save lives like hers. I hope you found this interview informative and I especially hope that speaking up about being immunocompromised during #Coronavirus helps to create awareness and education in the able-bodied world about chronic…

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Tina Aswani Omprakash

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Coping with IBD & Stress & Anxiety Around COVID-19

April 1, 2020

Last night I had the honor of doing a Facebook Live with Dr. Tiffany Taft (Psychogastroenterology, Northwestern University) and Amber Tresca (About IBD, IBD Moms) in conjunction with the Crohn’s & Colitis Foundation. We discussed all the emotions around COVID-19 from fear and anxiety to grief and loss and how we can cope best with stay-at-home and social distancing order in light of the challenges being presented to us in recent times. Hope you all found this discussion informative in learning some coping skills around the novel coronavirus (COVID-19) and living with IBD. For additional resources and updates on COVID-19 and IBD, please visit the Crohn’s & Colitis Foundation Coronavirus…

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Tina Aswani Omprakash

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Colon Cancer & Its Devastating Impact on My Family

March 19, 2020

I was 8 years old when I walked into my father’s room in the hospital as he laid there coma-stricken in his final days. I told him I had gotten an A on my Science test, hoping in all my innocence that an A would make him so proud that he would wake up from his coma. He passed a few days later and I was heartbroken. My father, Dr. Moti Aswani, had long-standing Crohn’s Disease which turned into stage IV colorectal cancer 13 years into his diagnosis at the age of 37 (see An Ode to My Father & Fellow IBD Warrior). You see, Daddy had been told to…

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Disability Awareness in the Midst of Coronavirus

March 12, 2020

The past 3.5 months I’ve spent much of my existence fairly immobile and mostly homebound: 2.5 weeks in an aircast, 8 weeks in a boot and 4 weeks in an ankle brace. Why? Because of a torn ligament in my ankle. And more recently, I’ve been in a neck brace due to a herniated disc in my neck/back. And now because of the infamous pandemic, Coronavirus. And during this time, I have come to understand the synergies at play within my body. You see, this hasn’t just been a simple ankle or neck injury for my body. They are excruciatingly debilitating on their own and even more so because I…

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A Valentine’s Day Special: Dating & Relationships with an Ostomy

February 25, 2020

A couple weeks ago, Amber Wallace Ogle of Ostomy Diaries and I did a Facebook Live in conjunction with Hollister Incorporated regarding dating, relationships and intimacy with an ostomy. Yes, folks, it is possible and that’s what Amber and I aimed to share–our stories of happiness and heartbreak and how we found lasting love and continue to thrive in our relationships while we live with permanent ostomies. Feel free to check out the video below. Enjoy! So, own your Crohn’s, own your ostomy, and take charge of your relationships and remember that our ostomies are not a flaw. They make us whole again and help us survive what we may…

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IBD Insider: IBD 101 Live Discussion on Facebook

January 16, 2020

Last Wednesday night I was honored to moderate a panel discussing IBD at the 101 level with two physicians who specialize in the treatment of inflammatory bowel disease: Dr. Jami Kinnucan of Michigan Medicine and Dr. Rajeev Jain of Texas Digestive Disease Consultants. IBD 101 is meant to be a precursor to IBD INSIDER, the more intermediate level discussion that will take place on January 25th, 2020 at Crohn’s & Colitis Congress, a premier conference sponsored by the Crohn’s & Colitis Foundation and American Gastroenterological Association (AGA) in Austin, TX. In our discussion, we covered topics ranging from what Crohn’s Disease and ulcerative colitis are to the treatment of these…

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What Will People Think? ~A Short Documentary by Chealynn Feaster

December 27, 2019

This past fall I had the opportunity to meet and film with filmmaker Chealynn Feaster, a fellow ostomate and Crohn’s Disease warrior. Together we pieced together a short documentary called What Will People Think? (Hindi/Urdu: Log Kya Kahenge?) which shines light on my advocacy work and the inspirations behind it from my father and aunt’s illnesses and subsequent deaths to my own constant battle with Crohn’s Disease and multiple colorectal surgeries. One of the aspects of living with inflammatory bowel disease (IBD) that I advocate for most is the nuances that racial and ethnic minorities face. Having a bowel disease and living with an ostomy, no matter how life-saving, often…

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Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada

December 15, 2019

By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…

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“I Had an Ostomy—and It Changed My Life”

December 11, 2019

For these people living with Crohn’s disease, ostomy surgery made everything from the ordinary to the extraordinary possible. By Jennifer Rainey Marquez Excerpt taken from HealthCentral. Article originally published in HealthCentral on November 27th, 2019: https://www.healthcentral.com/article/ostomy-crohns-patient-stories “I feel more ‘myself’ than I have in years.” ~Tina Aswani Omprakash, 36, New York City “As an Indian American, getting an ostomy was so culturally taboo that I waited until I was near death’s door to finally have the surgery. I was told nobody would marry me, and I was very afraid that I’d be discriminated against. To my surprise, my ostomy didn’t just save my life—it made me feel alive again! Not only…

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How a clinical trial helped this Crohn’s advocate finally reach remission

November 24, 2019

Originally published on November 22, 2019 on Antidote’s website Like many people living with Crohn’s disease, Tina Aswani Omprakash had trouble finding a treatment that would send her symptoms into remission. After trying many of the common Crohn’s treatments on the market, she still wasn’t getting a response. She also had developed fistulas: abnormal connections between organs in the digestive tract, typically between one part of the intestines and another. That’s when her doctor suggested she join a clinical trial… To read more of this story, please visit Antidote’s website: https://www.antidote.me/blog/how-a-clinical-trial-helped-this-crohns-advocate-finally-reach-remission As always, I welcome all your thoughts, comments and feedback! Love hearing from you all! ~~LOVE,…

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