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…
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- 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…
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An IBS Journey: Tina
Originally published in The Gut Gazette by Megan Marsiglio on April 15, 2019: https://thegutgazette.com/an-ibs-journey-tina/ If you have irritable bowel syndrome (IBS), you are NOT alone. To do our part in helping spread further awareness about IBS during April’s IBS Awareness Month, we are sharing different stories of various individuals who have IBS. Name: Tina Aswani-Omprakash, Patient AdvocateLocation: New York, NYWebsite: ownyourcrohns.comFB/Twitter/Instagram: @ownyourcrohns What symptoms do you experience with IBS? I have something called post-surgical IBS that I developed after many surgeries to bring my Crohn’s Disease under control. Symptoms include: bloating, nausea, abdominal cramping, chronic constipation (but if I take laxatives, then intense diarrhea). What has been the hardest challenge with IBS? Dealing with…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Pelvic pain, Self-image, stigma, Ulcerative Colitis, Women's Health
My Health Became My Top Priority
**Originally published in Health Central on April 10th, 2019** CHAPTER 1 Crashing Down When I first began having inflammatory bowel disease (IBD) symptoms in 2005, I had just graduated college, started my first job, and I gotten out of a difficult relationship. And then, to top it off, I was diagnosed with ulcerative colitis (UC). I was at the top of my game, and everything just came crashing down in the blink of an eye. I had also just started my master’s in financial management, but, after the diagnosis, I couldn’t complete it. With a new career on Wall Street, I took a break from my graduate education to focus on…
- 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, colorectal cancer, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, stigma, Ulcerative Colitis
The Top 10 IBD Blogs to Follow in 2019
Discussing bowel movements is undoubtedly a taboo subject for many people, which has helped a stigma form around Inflammatory Bowel Disease (IBD). For people living with IBD, most commonly in the form of Crohn’s Disease or Ulcerative Colitis, ‘embarrassment’, ‘shame’, and ‘isolation’ are regularly used words to describe the emotional strain that accompanies the physical symptoms of their condition. These bloggers, each excelling in particular areas, write openly and honestly about the realities of life with IBD. In doing so, they are helping create a community that offers support, raise awareness that helps tackle the stigma, and provide practical tips for various walks of life. Top IBD Blogs for Real…
- advocacy, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, stigma, Ulcerative Colitis
My Perianal Disease Feature at Crohn’s & Colitis Congress 2019
As many of you may have seen on my social media accounts this last month, Crohn’s & Colitis Congress is a premier conference that discusses all the latest breakthroughs in inflammatory bowel disease. I had the honor of taking part in one of the breakout sessions called Management of Complicated IBD: Perianal Disease. During this panel discussion, I shared my experiences with perianal fistulizing Crohn’s Disease and the psychosocial toll it wreaked on my entire being as a woman, as a professional and as a wife. As terrifying as sharing my horrific experience with perianal disease was, it was absolutely validating and felt like a huge weight off my shoulders.…
