Originally published by Amber of Colitis Ninja on June 12, 2019: https://colitisninja.com/2019/06/j-pouch-failure-tinas-story/ J-POUCH TAKEDOWN ANNIVERSARY Next month is my 5 year takedown anniversary for my j-pouch. I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch. SUCCESS & FAILURE STORIES I have given a lot of thought to how I would address this year’s takedown anniversary. I thought…
- advocacy, awareness, Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, Women's Health
I’m Chronically Ill & Depressed; So What?
You might be looking at this photo and thinking, “Oh, Tina looks like she’s having a great time enjoying beautiful weather in the park.” Can you tell an hour before this photo was taken, hubs struggled to get me to leave our home? Can you tell I had been curled up in bed crying? Can you tell it was next to impossible for me to get myself ready and out of bed that afternoon? NOPE. The truth is photos on social media and the Internet, in general, can be so deceiving. What you see here is a woman with Crohn’s and 37520572 other ailments smiling in a park because that’s…
- 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…
- 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, 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…