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…
- acceptance, advocacy, awareness, Crohn's, Dating & Relationships, Disability Justice, Healthcare Disparities, LGBTQ+ health, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
- 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…
- 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, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis
Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic
One of the things I do a lot as a patient with many chronic illnesses is visit all sorts of healthcare providers for the maintenance of my care. However, during this time, when many non-essential visits to the doctor’s office or to medical facilities are not recommended, what do we do? In the last 6 weeks, many providers have ramped up a service we are now calling telehealth. That is, many doctors are offering virtual visits to us from the convenience of our home. While it isn’t the ideal way to examine a patient, it certainly gets the job sufficiently done for many of us who are struggling to manage…
- Ableism, advocacy, awareness, Colorectal Surgery, Coronavirus, COVID-19, Crohn's, Disability Justice, immunocompromised, invisible illness, living with IBD, Ostomy, Ulcerative Colitis
Inspire’s #KeepUsAllSafe COVID-19 Campaign
Last week, Inspire released a short video we made virtually on why living with Crohn’s Disease and being immunocompromised during COVID-19 is downright terrifying for patients like myself who are chronically and invisibly ill. Please take a moment to watch this video and share to help raise awareness. And don’t forget – every life is valuable! So please #KeepUsAll safe by practicing social distancing and staying home as much as possible! Be well & best wishes always!
- acceptance, advocacy, awareness, Coronavirus, COVID-19, Crohn's, J-Pouch, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
Coping with IBD & Stress & Anxiety Around COVID-19
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…
- 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…
- 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…