A couple weeks ago, esteemed IBD specialist, Dr. Neilanjan Nandi (@fitwitmd) of Penn Medicine, hosted a live discussion with me on my experiences around Perianal Fistulizing Crohn’s Disease. We opened up the discussion to an international audience and allowed for a Q&A on this very deeply stigmatized topic that’s often not discussed or understood very well. To view the video, please watch here: I have been very open about my struggles with multiple fistulae in female parts. I have lived with 5 rectovaginal fistulae and 1 pelvic transphinteric fistula that was headed to break through at the site of my tailbone, nearly paralyzing me. To read more about my experiences,…
- advocacy, Colorectal Surgery, Crohn's, fistula, Fistulizing Disease, J-Pouch, Mental Health, Minority Health, Ostomy, Self-image, stigma, Ulcerative Colitis, Women's Health
- Ableism, acceptance, advocacy, awareness, Crohn's, Dating & Relationships, living with IBD, Ostomy, stigma
Indian Ostomate Podcast Show: Episode 1 with Tina Aswani Omprakash
I recently had the honor of being interviewed by the very kind, positive and uplifting Indian ostomate and advocate named Dinesh Kundnani. Dinesh is someone who I came across early in my own journey as an ostomy advocate and it’s amazing to witness how he’s transformed from new ostomate to a seasoned one. Dinesh now helps others in India especially by showing his ostomy and helping to destigmatize what is considered to be a very taboo medical device. Early on in our interview, Dinesh asked if I would do this podcast show in the Hindi language! I was dumbfounded in the moment but I quickly agreed as I realized how…
- advocacy, awareness, Black Lives Matter, coping with flares, Crohn's, Disability Justice, Healthcare Disparities, Minority Health, Ostomy, Ulcerative Colitis
Black Lives Matter in the IBD Community, Too
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options. With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard…
- Ableism, acceptance, advocacy, Crohn's, Dating & Relationships, Disability Justice, Minority Health, stigma, Ulcerative Colitis
I am NOT a Burden: A South Asian Perspective
The recent advice column in the NY Times called “Is it OK to Dump Him Because of His Medical Condition?” has been percolating in our minds for the last few weeks. Tomorrow, July 2nd, 2020, marks 10 years since I’ve been married to the love of my life, Anand. Yes, you read that right: one whole decade of wedded bliss and 14 years of us being together. (See Love Knows No Disability.) I still vividly remember telling him 3 weeks into us dating that I had been diagnosed with inflammatory bowel disease (IBD) a few short months earlier and that the disease had taken the lives of my father and…
- acceptance, advocacy, awareness, Crohn's, Dating & Relationships, Disability Justice, Healthcare Disparities, LGBTQ+ health, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
~OYC Trailblazers~ Michelle’s Story on the Intersection of Crohn’s & an LGBTQIA+ Identity
By Michelle Cabral My symptoms first started around the age of 11. As I grew into my teenage and adult years, my symptoms worsened. I found myself dealing with bathroom urgency and vomiting on a daily life. I distinctly remember when I was about the age of 16, my mother and I were leaving a restaurant after a night out and I had already vomited. I still remember her saying something to the effect of “one day you’ll be able to go out for dinner and not feel like this.” Little did she know that my life would continue with this trajectory and I would finally be diagnosed via colonoscopy…
- Ableism, Colorectal Surgery, Crohn's, fistula, Mental Health, Minority Health, Ostomy, stigma, Ulcerative Colitis, Women's Health, World IBD Day
What IBD Awareness Means to a South Asian American Woman with Crohn’s
By Tina Aswani Omprakash Originally published in IBD Relief on May 18th, 2020: https://www.ibdrelief.com/ibd-stories/my-ibd-story-tina-aswani-omprakash I remember waking up from a surgery to repair a rectovaginal fistula in late 2011 and being yelled at by an elderly family member for ruining their lives. Even though I was still in a haze in the recovery room, the tears of pain and anguish washed over me. Whether it was my body violating me with perianal fistulizing Crohn’s disease or family and friends constantly reminding me of how much of a burden I was, the floodgates opened in that moment as I asked that family member to please excuse themselves from the recovery area. You see, it’s really…
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What I Learned From Joining a Clinical Trial for Crohn’s
By Tina Aswani Omprakash, Medically reviewed by Jenny Blair, MD Originally published on the Oshi Health website on April 6th, 2020: http://www.oshihealth.com/joining-clinical-trial/ My journey with Crohn’s disease has been an arduous one, laden with difficult decisions, including whether to take strong medications and when to have life-altering surgeries. At one point, Crohn’s derailed my career, my prospects of finishing graduate school and my ability to pursue meaningful relationships. But I was scared to try any new medication, let alone partake in a clinical trial. I was young and didn’t want to be burdened by a strict drug regimen or potential side effects. After I had more than 20 corrective surgeries…
- acceptance, advocacy, coping with flares, Crohn's, fistula, Gastroparesis, invisible illness, living with IBD, Mental Health, Ostomy, PTSD, stigma, Ulcerative Colitis
Talking Gut Podcast Episode 20: Tina Aswani Omprakash on Resilience & GRITT
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…
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Healthline’s Best Crohn’s Disease Blogs of 2020
Originally published by the Healthline Editorial Team on May 12th, 2020: https://www.healthline.com/health/crohns-disease/best-blogs#1 Researchers may not understand every aspect of Crohn’s disease, but that doesn’t mean there aren’t ways to effectively manage it. That’s exactly what these bloggers are doing. The authors behind this year’s best Crohn’s blogs are actively working to educate, inspire, and empower their visitors by sharing sound medical advice and personal stories. It’s an important reminder that you’re not alone in your journey. Own Your Crohn’s Tina was 22 when she received her Crohn’s diagnosis. Since the last couple years, she’s been using this blog as way to advocate and normalize chronic conditions like Crohn’s. Living with Crohn’s…
- 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…