This year I’m starting a new series called Own Your Crohn’s (OYC) TrailBlazers in which I share stories of other chronic illness warriors and their experiences. And who better to begin this series than my father, a long-time veteran of Crohn’s Disease? Dr. Moti Aswani was born in New Delhi, India, and came to New York to study at the age of 21. And, oh, did he study! He held five degrees: a Bachelors, Masters and Doctorate in Electrical Engineering and Masters degrees in Philosophy and Business Administration. He was a Senior Systems Engineer for the prestigious Bell Labs in New Jersey for many years thereafter. On paper, he was…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, Father's Day, living with IBD, Ostomy, stigma, Ulcerative Colitis
- acceptance, advocacy, awareness, Colorectal Surgery, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
OstomyConnection SPOTLIGHT: Dr. Harikesh Buch works to shatter stigma and improve post-surgery care for ostomates in India.
Dr. Harikesh G. Buch recognized the difficulties faced by homeless people in his home city of Mumbai early in his medical career. A skilled colorectal surgeon, he devoted himself to operating on those unable to pay for his services. Then something happened that changed the course of his life: At the age of 29, he was diagnosed with rectal cancer and underwent colostomy surgery, an operation that would serve as the focus of his volunteer work for many years to come. Dr. Buch recalls that he was “devastated” after the cancer diagnosis and, though it didn’t take him long to become accustomed to living with a stoma, he had initial…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, Fistulizing Disease, living with IBD, Mindfulness, Ostomy, patient rights, Pelvic pain, stigma, Ulcerative Colitis
Real Talk About Fistulae
As I sit here today with a very heavy heart typing out this blog post, I’m not sure if the excruciatingly painful nodule I felt earlier this week is just another health scare or yet another horrifying abscess from a fistula. I hold back tears as I wonder what my next steps are and what I can do to keep spiraling anxiety in check. Now many of you might be wondering what I’m even referring to–abscess? Fistula? What the heck are those and why am I such a mess over them? Well, get ready for some real talk about the most harrowing experience I’ve faced as a Crohn’s patient. According…
- acceptance, advocacy, awareness, Crohn's, Gratitude, living with IBD, Mindfulness, Ostomy, Ulcerative Colitis
Owning My Crohn’s Mindfully This New Year
A journalist recently asked me, “Where do you see yourself in 5 years, Tina?” It was a mind-boggling question; I could barely wrap my head around the chronicity of my illnesses forget about thinking so far ahead into the future. The truth is I don’t know what tomorrow will bring, sickness or health, and I’m not so sure I want to even think about it. Sure, the future appears bright with many new medications and research in the pipeline to treat inflammatory bowel disease (IBD). But one thing I’ve come to learn in all the ebbs and flows of living with IBD is that I need to live for today…
- advocacy, awareness, coping with flares, Crohn's, Holiday Season, living with IBD, Traveling with IBD, Ulcerative Colitis
The Value of Awareness & Advocacy During the Holidays
The holiday season is a wonderful time to celebrate all the blessings in our lives. It is a time to reflect on a year that has passed and our resolutions for the upcoming new year. But it is also a time that can be difficult for many of us with chronic illnesses, such as inflammatory bowel disease (IBD). And this is where the importance of awareness and advocacy of our conditions come into the picture. As joyous of a time that the holidays are, many of us struggle to keep up with the shopping, the eating, the drinking, the travel and all the social merriment of the holiday season. Oftentimes,…
- advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
6 Myths About IBD in Minority Patients, Busted
Here are the most common misconceptions surrounding Crohn’s and ulcerative colitis in minority populations. By Brianna Majsiak Inflammatory bowel diseases (IBDs) like Crohn’s and ulcerative colitis (UC) are not easy conditions to talk about. But an even rarer topic of conversation is how minority patients are affected by these chronic and debilitating diseases. Although IBD has predominantly affected whites in the past, a study published in August 2016 in the journal Inflammatory Bowel Disease found an increase in the rate of IBD in minority groups in the United States over the past two decades. “Patients may be reluctant to identify as having ulcerative colitis or Crohn’s disease, so our current numbers may really underrepresent these minority groups,”…
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3 Patient Tips for Living & Thriving with Crohn’s or Colitis
On November 28th, 2018, in advance of Crohn’s & Colitis Awareness Week, Everyday Health interviewed patient advocates, Will Lanier (The Out Foundation), Tina Aswani Omprakash (Own Your Crohn’s) and Gaylyn Henderson (Gutless & Glamorous), on three tips to share with patients on how to live and thrive with IBD. View the video below to hear our tips! (Courtesy of Everyday Health, 11/28/18)
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Crohn’s & Colitis Awareness Week: Minorities, Mental Health & IBD
This IBD Awareness Week, the Crohn’s & Colitis Foundation shared a video of me discussing one aspect of being South Asian: maintaining privacy. Privacy is a major concern when it comes to South Asian Americans sharing their personal IBD journeys. There is a phrase in Hindi & Urdu called “Log Kya Kahenge?” It is a cultural phenomenon that expresses deep concern for how society will view patients and their families once their stories are public. But the reality is that suffering in silence can lead to deep-rooted shame while deterring self-care and self-advocacy, two very important aspects to our medical care. In this video, I talk about my experiences as a…
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Caregivers: The Greatest Blessing of All
As we wrap up Crohn’s & Colitis Awareness Week, I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better. Many of our IBD journeys…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
IBD Awareness Week Line-Up: Diversity, Mental Health & More!
Today kicks off Crohn’s & Colitis Awareness Week! The lead-up to this week has included my (very exciting!) feature on the Crohn’s & Colitis Foundation’s website for general IBD awareness and for racial and ethnic minorities. I also had the honor of sharing my IBD story with reporters from various media outlets who attended the Foundation’s briefing this past week. In discussing my story, I talked about the cultural impact of being a minority woman with Crohn’s Disease and a permanent ostomy. Being a different race, gender, sexuality and/or ethnicity adds a whole other layer of complexity to the IBD experience. I really wanted to bring to light how complicated our…