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…
- 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…
- 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…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
My Feature During Crohn’s & Colitis Awareness Week
Pleased to announce that this year I have the honor of representing my fellow IBD warriors for Awareness Week (12/1-12/7) nationally on the Crohn’s and Colitis Foundation’s website! REPRESENT!! Inflammatory bowel disease (IBD) comes in all shapes, sizes, colors, ages, genders and sexual orientations. IBD affects 1.6 million people and counting in the U.S. alone and over 5 million worldwide. This chronic, autoimmune and often invisible condition is growing by leaps and bounds unfortunately every single year. It wreaks havoc on our guts, bodies and mental health. It behooves us to recognize and de-stigmatize IBD and chronic illness in general so that folks like us can live fuller, happier lives. I…
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Edgar Flores opens up about surviving near-death and the challenges of living with an ostomy in Mexico
Ayatka Wuikot Tlatuan is the Native American name given to Edgar Flores, a 48-year-old Mexico City native who was born into two tribes. His mother Aztec and father Apache Indian. Just over two years ago, Edgar developed appendicitis and underwent an emergency operation to remove his appendix. What happened next truly shocked him. “I thought the operation had gone smoothly, but within a few days I began to experience severe stomach pain and felt very weak,” he said. As the situation went from bad to worse, Edgar was rushed to the hospital where an ER surgeon discovered that his abdomen was filling with blood. He was hemorrhaging from the inside. Read…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, Pelvic pain, stigma, Ulcerative Colitis
My Pelvic Pain Story
…Via The Women’s Pelvic Pain Podcast… My first podcast goes live! Check out my pelvic pain story available now in iTunes. Listen to Episode 14: My Pelvic Pain Story here: https://itunes.apple.com/us/podcast/episode-14-my-pelvic-pain-story-with-tina-of-own-your-crohns/id1379107302?i=1000422358419&mt=2 Something many folks might not realize about having IBD and IBD-related surgery is that it often comes with chronic pelvic pain and pelvic floor dysfunction, which makes walking, sitting and emptying the bladder very difficult during pelvic flare-ups. And periods feel far more painful as does intercourse. It is hard enough to talk about living with a bowel condition and/or an ostomy. Add pelvic pain to the mix and the stigma magnifies even further. My intent is to shatter…