living with IBD – Page 5 – Own Your Crohn's

advocacy, awareness, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, Disease Prevention, Emerging Therapies, living with IBD, stigma, Ulcerative Colitis

In the Name of Science & Research

June 25, 2019

Traveling home from Mayo was beyond excruciating– horrible abdominal cramping and nausea/vomiting as I could barely walk. After all the testing I had had (4 testing procedures, an ER visit, multiple appts all in 5 days) and my Stelara trough levels coming back as borderline, it was no surprise that my Crohn’s Disease had flared. I was in a frenzy and knew I had to act fast. Within an hour of landing, my local GI and I came up with a plan to admit me at my local hospital. She asked me to consider enrolling in the POWER clinical research study in which she would reinduce me with a megadose…

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Tina Aswani Omprakash

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J-Pouch Failure – Tina’s Story

June 15, 2019

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…

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Tina Aswani Omprakash

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My Feature for Clinical Trial Awareness with Parexel

June 1, 2019

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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Tina Aswani Omprakash

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“I Had an Ostomy—and It Changed My Life”
December 11, 2019
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Why My IBD Scars Make Me Proud

May 23, 2019

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…

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Tina Aswani Omprakash

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Happy World IBD Day from Digestive Disease Week (DDW)!

May 22, 2019

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…

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Tina Aswani Omprakash

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Fistulas: What You Need to Know About a Common Side Effect of Crohn’s

May 17, 2019

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…

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Tina Aswani Omprakash

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As a Chronically-Ill Brown Woman, Here’s Why I Share My Survival Story

May 16, 2019

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.

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~OYC Trailblazers~ Brandi’s Journey into Motherhood with a Redone J-Pouch

May 12, 2019

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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Tina Aswani Omprakash

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August 13, 2018
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Day on the Hill 2019: The Faces of IBD Legislation

May 11, 2019

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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About IBD Podcast #40 – Tina Aswani Omprakash’s Story: What Are People Going to Think?

April 10, 2019

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…

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