Last year, I had the honor of attending my first Day on the Hill (DOH) organized by the Crohn’s & Colitis Foundation (http://ownyourcrohns.com/dayonthehill/). After such a rewarding and empowering experience, I’m thankful to have been invited back with 100+ other advocates to represent my fellow inflammatory bowel disease (IBD) warriors on the Hill again this year. LEGISLATIVE TRAINING This past week we kicked off DOH at the Capitol Hilton in Washington, D.C., with a panel on Patient Advocacy & Empowerment moderated by Advocacy Committee Chair of the National Council of College Leaders (NCCL), Bianca Hernandez. The panelists involved were Dr. Thomas Ullman, Chief of Gastroenterology at Montefiore Medical Center; Natalie…
-
- acceptance, advocacy, awareness, coping with flares, Crohn's, Diet, living with IBD, Minority Health, Nutrition, Women's Health
Brown Girl with Guts: Tina’s Journey with Crohn’s Disease
Originally Published by Girls with Guts on April 30th, 2019: https://www.girlswithguts.org/blog/2019/4/30/brown-girl-with-guts-tinas-journey-with-crohns-disease As a woman of color, I’ve struggled from the very beginning with inflammatory bowel disease (IBD). The diagnosis was hard enough to wrap my head around but add the elements of loss of career, loss of personality and ultimately, loss of cultural identity played into a lot of my struggles with managing my brand of IBD. To backtrack, I was diagnosed with ulcerative colitis in 2006. Now, this was by no means a surprising diagnosis for me. My father had died of a virulent form of Crohn’s that became colorectal cancer when I was 8 years old here in…
- advocacy, Colorectal Surgery, coping with flares, Crohn's, Diet, Emerging Therapies, Fistulizing Disease, living with IBD, Mental Health, Minority Health, Ostomy, stigma, Ulcerative Colitis, Women's Health
The Impact of IBD on Racial & Ethnic Minorities
On Tuesday, April 23rd, 2019, in honor of National Minority Health Month, Dr. Aline Charabaty (Director of Johns Hopkins IBD Center), Brooke Abbott (Patient Advocate, Crazy Creole Mommy Chronicles) & I (Patient Advocate, Own Your Crohn’s) had the honor of speaking with the Crohn’s & Colitis Foundation on the very important topic of “The Impact of IBD on Racial & Ethnic Minorities.” Please view the Crohn’s & Colitis Foundation’s video below: If you are a man or woman of color living with inflammatory bowel disease (IBD), please know you are NOT alone. We are all here to support you through your journey. More is and will be done to tend…
- advocacy, awareness, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis, Women's Health
About IBD Podcast #40 – Tina Aswani Omprakash’s Story: What Are People Going to Think?
Listen to About IBD’s Podcast #40: What Are People Going to Think? Shared via Amber Tresca’s podcast and blog, About IBD People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play. Tina Aswani Omprakash, who lives with Crohn’s disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why…
- acceptance, advocacy, awareness, Body Positivity, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Self-image, stigma, Ulcerative Colitis
Lilly Singh’s ‘Choli Ke Peeche Kya Hai?’: My Anthem for Body Positivity
I still remember when the racy Bollywood song, “Choli Ke Peeche Kya Hai?” (Hindi: What’s Behind the Saree Blouse?), teased South Asian household television sets and AM/FM radios (yes, those used to be a thing). I was barely 10 years old and even though I couldn’t get enough of the song’s hypnotic beat, I felt tingling shame every time I heard its lyrics. So when Lilly Singh (a/k/a iiSuperwomanii), Punjabi-Canadian LGBTQ YouTube star and soon-to-be late-night TV show host, released her rap remake of “Choli Ke Peeche Kya Hai?” last week, I nearly fell off my chair. She didn’t just remake a Bollywood classic; she recreated a spectacle made for…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
OYC Trailblazers: What Healing Means to Natasha
By Natasha Weinstein My name is Natasha and I have Crohn’s Disease. I was diagnosed at the age of 11 after years of mild disease activity and extraintestinal manifestations (joint pains, random fevers and stunted growth). It was only when my disease became severe with rectal bleeding and vomiting that I was given a proper diagnosis. Following diagnosis, I went through years of failed medications, endless hospitalizations, 2 pediatric gastroenterologists and multiple surgeons. Last month I underwent my 10th surgery. You read that right: TENTH. I have hit double digits, two full hands, big kid status. My abdomen is growing up. To get technical about this most recent surgery, I…
- advocacy, awareness, Crohn's, Diet, Emerging Therapies, Fistulizing Disease, living with IBD, Mental Health, Nutrition, Ostomy, Ulcerative Colitis
5 Hot Topics Presented at Crohn’s & Colitis Congress 2019
I had the honor of attending the 2019 Crohn’s & Colitis Congress in Las Vegas, NV as a patient advocate and speaker on the Perianal Fistulizing Crohn’s Disease panel. From diet and nutrition to mental health and pregnancy in IBD, here are the most salient topics presented at the conference this year for us patients: https://www.oshihealth.com/crohns-congress-2019/ Originally published by Oshi Health, Inc., on February 26th, 2019. Written by Tina Aswani Omprakash Medically reviewed by Matthew Hamilton, MD Please feel free to leave comments and feedback. I would love to hear your thoughts as always.
- acceptance, advocacy, awareness, caregivers, coping with flares, hydration, living with IBD, Ulcerative Colitis
OYC Trailblazers: Celebrating Melissa’s J-Pouch-versary
And February’s OYC Trailblazer is…wait for it…Melissa “Mush” Willner! This month marks one year since Melissa had her ostomy reversed and her j-pouch became fully functional. So what better time than now to have Melissa share her story? Here goes nothing… Ulcerative Colitis has been a part of my life for over 20 years now. I first learned of my diagnosis at the age of 7 in the 2nd grade. While my young mind was preoccupied with stickers and Rugrats, I was also learning about colonoscopies and mesalamines. My sleepovers were interrupted by enemas and I took my first doses of mesalamine crushed up in my bowls of Cocoa Pebbles.…
- awareness, coping with flare, Crohn's, Diet, Disease Prevention, living with IBD, Nutrition, Ostomy, Ulcerative Colitis
Can a Low FODMAP Diet Help IBD? 7 Things to Know
Written by Emily Willingham, PhD Medically reviewed by Matthew Hamilton, MD When patient advocate and author of the blog OwnYourCrohns, Tina Aswani Omprakash, 35, reached an impasse with symptoms related to her inflammatory bowel disease (IBD), she turned in frustration to her nutritionist. On her nutritionist’s suggestion, Omprakash, who lives in New York City, decided to give the low-FODMAP diet a try. What Are FODMAPs Anyway? FODMAPs stands for “fermentable oligosaccharides, disaccharides, monosaccharides, and polyols,” all sugars that are common in foods. If these small sugars go unabsorbed and hang around in the intestines long enough, they can produce diarrhea and abdominal bloating and cramping, depending on where they linger. People who…
- colorectal cancer, Colorectal Surgery, Crohn's, Fistulizing Disease, Gratitude, living with IBD, Mindfulness, Ostomy, Pelvic pain, stigma, Traveling with IBD, Ulcerative Colitis, Valentine's Day
7 IBD-Inspired Gift Ideas for Valentine’s Day
By Tina Aswani Omprakash February 13, 2019 One woman living with Crohn’s shares thoughtful Valentine’s gift ideas for the IBD warrior in your life. Valentine’s Day can be an anxiety-inducing holiday for many people. Especially for those of us living with inflammatory bowel disease (IBD). If we’re single, our minds might run wild about when we might meet that special someone. And if we’re in a relationship, we might worry about experiencing symptoms during a romantic moment. But it’s important to remember that Valentine’s Day isn’t just a day for us to fret over romance. It’s a day for us to celebrate all kinds of love: love for significant others, family, and…
