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…
- advocacy, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis
- 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…
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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…
- acceptance, awareness, Body Positivity, Colorectal Surgery, coping with flares, Crohn's, Dating & Relationships, Egg-Freezing, J-Pouch, living with IBD, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC TRAILBLAZERS~ Katie’s Story: Baby-Making Prospects & Egg-Freezing with a J-Pouch
A Nursing Student Tells OYC Her J-Pouch Story and How That Led to Her Courageous Decision to Freeze Her Eggs to Someday Have Children. By Katie Gene Friedman When I was first diagnosed with ulcerative colitis in my senior year of college, my colitis responded to medication and didn’t take up much of my life. Consequently, I only disclosed my diagnosis to my then boyfriend, best friend, and immediate family. During a bad flare and particularly stressful semester in grad school studying social psychology, that group expanded to include the nucleus of my social circle and some professors. At that point, my disease affected what I was doing but not…