As May, a month of several health initiatives, comes to a close, I wanted to highlight Mental Health Awareness Month, World IBD Day and World Digestive Disease Day by talking about all three in my latest podcast interview with Dr. Jim Kantidakis, Clinical Psychologist & Gut-Directed Hypnotherapist, at the Gut Centre in Australia. In his podcast titled Talking Gut, I discuss the power of resilience, that so-called grit that living with Crohn’s Disease, multiple fistulae, a permanent ileostomy, gastroparesis, IBS and SIBO have given me over the years. Dr. Kantidakis asks me how I got through all my hospitalizations and faced all the medical PTSD and I would have to…
- acceptance, advocacy, coping with flares, Crohn's, fistula, Gastroparesis, invisible illness, living with IBD, Mental Health, Ostomy, PTSD, stigma, Ulcerative Colitis
- acceptance, advocacy, awareness, Caregiving, Crohn's, Dating & Relationships, Minority Health, stigma, Ulcerative Colitis, World IBD Day
World IBD Day Panel Discussion: Experiences of Minority IBD Patients & Caregivers
By Anand Omprakash For World IBD Day, I was invited to be a part of a virtual panel discussion with the Crohn’s & Colitis Foundation, Dr. Meena Bewtra (IBD patient & gastroenterologist) and Stephanie Stinson (IBD patient) highlighting the unique struggles that minority patients and caregivers face. I did this because I wanted to shed light upon the stigmas surrounding chronic illness in my community, especially so when it comes to a bowel disease and to marriage. In many communities around the world, a chronic illness is often viewed as a liability because marriage is considered as a familial “contract” to provide and reproduce and not just a means to provide…
- acceptance, advocacy, Colorectal Surgery, coping with flares, Coronavirus, COVID-19, Crohn's, fistula, Fistulizing Disease, immunocompromised, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
~OYC TRAILBLAZERS~ Spotlight on Malaysian Crohnie & Ostomate Saravanan
It all started in early 2008 when I was still in high school and started to experience bowel disease symptoms. However, as many of us know, there can be a large gap between the time we experience symptoms and the time we are officially diagnosed. I was finally diagnosed with Crohn’s disease in July 2012. The four and half years in between onset of symptoms and diagnosis were the most arduous part of my journey. My battle began upon developing a fistula. For those who may not be familiar, a fistula is an abnormal tract created between the intestinal wall and another organ or out on to the skin due…
- advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
Colon Cancer & Its Devastating Impact on My Family
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…
- acceptance, advocacy, awareness, Crohn's, Dating & Relationships, living with IBD, Ostomy, Self-image, stigma
A Valentine’s Day Special: Dating & Relationships with an Ostomy
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…
- Ableism, acceptance, advocacy, awareness, Crohn's, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
What Will People Think? ~A Short Documentary by Chealynn Feaster
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…
- acceptance, advocacy, Body Positivity, Colorectal Surgery, Crohn's, living with IBD, Mental Health, Ostomy, Self-image, stigma
“I Had an Ostomy—and It Changed My Life”
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…
- acceptance, advocacy, awareness, Body Positivity, Colorectal Surgery, Crohn's, Dating & Relationships, Gratitude, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis
Ostomy Awareness Day: Empowering Ostomates to Live Fuller Lives
Last month, Amber Wallace Ogle of Ostomy Diaries & I got together with Hollister, Inc. (a major ostomy manufacturer) to bring our audiences a discussion on how to lead a fuller life with an ostomy. Our aim was to engage viewers from around the world who may be struggling with self-image, body image, family life and relationships with an ostomy. And it was a grand success! We reached nearly 1,500 viewers from over 46 countries and from the feedback received, it was a video that helped many. Here’s to many more conversations like this where we can help ostomates feel less like outcasts and more like the beautiful human beings…
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The Healio Disruptive Innovator Award: Moving the Needle on IBD Care
A few weeks ago on Diwali Day, I won the Healio Disruptive Innovator Award for the Patient Voice category at the American College of Gastroenterology’s conference in San Antonio, Texas! This award is presented to the patient advocate who helps move the needle on GI care most in a particular year and whose voice resonates most with the 200 world-renowned doctors part of Healio Gastroenterology. Even though I wasn’t able to travel to Texas for the award ceremony, I’m deeply honored and humbled to be recognized with such a prestigious award. It has been a very long and arduous journey and being able to advocate and help destigmatize inflammatory bowel…
- Ableism, acceptance, advocacy, awareness, Body Positivity, colorectal cancer, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis
The Beauty of Ostomates Worldwide
Happy #OstomyOctober, everyone! After doing a piece about things we can do with an ostomy last year, it only seemed appropriate this year to highlight how diverse the population living with all types of ostomies is. Just to backtrack, many of you might be wondering what an ostomy is. According to the United Ostomy Associations of America (UOAA), “ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body.” There are generally three types of ostomies: (1) colostomy, (2) ileostomy and (3) urostomy. A colostomy takes a resected…