Honored to represent the clinical trial community within the Crohn’s Disease space for Parexel! Clinical trials are an important way for new medications to be tested and approved for use to provide quality of life, hope and happiness to those who suffer from chronic illnesses. Please take a moment to read my clinical trial story below and share: For every share of my clinical trial story, Parexel will donate funds to raise awareness for the importance of clinical research! #parexelwithheart So, own your Crohn’s, own your chronic illness, and spread love, light and hope to your community by considering clinical trials in your care. Originally published via Parexel on 5/28/2019:…
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- acceptance, awareness, Body Positivity, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Self-image, Ulcerative Colitis, Women's Health, World IBD Day
Why My IBD Scars Make Me Proud
How I learned to love what once made me shudder. By Tina Aswani Omprakash Originally published by Everyday Health on 5/17/2019: https://www.everydayhealth.com/columns/my-health-story/why-my-ibd-scars-make-me-proud/ This year’s World IBD Day theme is “Making the Invisible Visible,” and I’ve been taking a long hard look at what that means to me. The reality is that living with inflammatory bowel disease (IBD) has meant donning an invisibility cloak for most of my adult life. But over the past 14 months, I’ve striven to make my invisible illness visible. From sharing my story widely on social media to using my platform to educate others on how IBD wreaks havoc on patients like me, I’ve come to realize that visibility is necessary for…
- advocacy, awareness, caregivers, Crohn's, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
Happy World IBD Day from Digestive Disease Week (DDW)!
Last weekend, a number of us celebrated World IBD Day from DDW in San Diego, CA. We advocates sat in sessions and conferences brainstorming the best ways in which to address the gaps in IBD care and bring those ideas forward to doctors leading the quest to improve our care. We discussed so many topics from mental health to support and caregiving in addition to sexual health and intimacy. We talked to Drs. Aline Charabaty & Neilanjan Nandi about how to take those topics forward to the larger community and have the tough conversations with our own providers. All in all, we, as a team, collaborated to bring together a…
- advocacy, awareness, Colorectal Surgery, Crohn's, Emerging Therapies, Fistulizing Disease, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
Fistulas: What You Need to Know About a Common Side Effect of Crohn’s
By Padma Nagappan Medically Reviewed by Kareem Sassi, MD Originally published by Everyday Health on May 14th, 2019: https://www.everydayhealth.com/crohns-disease/symptoms/fistulas-common-crohns-side-effect-you-should-aware/ Fistulas are an abnormal connection between two body parts. In Crohn’s patients they form as tunnels within the walls of the intestine and connect to other organs or tissue, causing pain and infection. After years of living in intense pain and going through several misdiagnoses, Tina Aswani Omprakash, found out she had Crohn’s disease. Her condition was so severe that she needed emergency proctocolectomy surgery (removal of the colon and rectum), and she was put on biologics. “I knew Crohn’s was an intense disease, but I did not realize what it takes to really, truly fight…
- acceptance, advocacy, awareness, Crohn's, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
As a Chronically-Ill Brown Woman, Here’s Why I Share My Survival Story
I had the honor of attending the 2019 HealtheVoices conference in Dallas, TX, as a patient advocate who was selected to attend from a group of 400+ applicants. Here are my impressions of the conference theme for this year, “A Little Heart Can Do Big Things” from the perspective of a chronically-ill brown patient advocate: https://www.oshihealth.com/my-survival-story/. Originally published by Oshi Health, Inc., on April 29th, 2019. Written by Tina Aswani Omprakash Please feel free to leave comments and feedback. I would love to hear your thoughts as always.
- Colorectal Surgery, coping with flares, Crohn's, IBD Parenthood Project, living with IBD, Mental Health, Mother's Day, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Brandi’s Journey into Motherhood with a Redone J-Pouch
By Brandi Fliegel I was 22 years old when I went to the emergency room for the first time. I had extreme stomach pain and couldn’t stop going to the bathroom. They told me I had a stomach virus and sent me home with some Imodium. Then the bleeding started. I went to a different hospital and after further testing, they diagnosed me with ulcerative colitis. I didn’t really understand the disease at the time. I just knew I had to take medications to combat inflammation in the gut everyday. Then the flare-ups began and I would end up back in the hospital. I would go on steroids and then…
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Day on the Hill 2019: The Faces of IBD Legislation
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…
- 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…
