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, caregivers, Crohn's, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
- 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, 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…
- 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…
- advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
6 Myths About IBD in Minority Patients, Busted
Here are the most common misconceptions surrounding Crohn’s and ulcerative colitis in minority populations. By Brianna Majsiak Inflammatory bowel diseases (IBDs) like Crohn’s and ulcerative colitis (UC) are not easy conditions to talk about. But an even rarer topic of conversation is how minority patients are affected by these chronic and debilitating diseases. Although IBD has predominantly affected whites in the past, a study published in August 2016 in the journal Inflammatory Bowel Disease found an increase in the rate of IBD in minority groups in the United States over the past two decades. “Patients may be reluctant to identify as having ulcerative colitis or Crohn’s disease, so our current numbers may really underrepresent these minority groups,”…
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Crohn’s & Colitis Awareness Week: Minorities, Mental Health & IBD
This IBD Awareness Week, the Crohn’s & Colitis Foundation shared a video of me discussing one aspect of being South Asian: maintaining privacy. Privacy is a major concern when it comes to South Asian Americans sharing their personal IBD journeys. There is a phrase in Hindi & Urdu called “Log Kya Kahenge?” It is a cultural phenomenon that expresses deep concern for how society will view patients and their families once their stories are public. But the reality is that suffering in silence can lead to deep-rooted shame while deterring self-care and self-advocacy, two very important aspects to our medical care. In this video, I talk about my experiences as a…
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Caregivers: The Greatest Blessing of All
As we wrap up Crohn’s & Colitis Awareness Week, I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better. Many of our IBD journeys…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
IBD Awareness Week Line-Up: Diversity, Mental Health & More!
Today kicks off Crohn’s & Colitis Awareness Week! The lead-up to this week has included my (very exciting!) feature on the Crohn’s & Colitis Foundation’s website for general IBD awareness and for racial and ethnic minorities. I also had the honor of sharing my IBD story with reporters from various media outlets who attended the Foundation’s briefing this past week. In discussing my story, I talked about the cultural impact of being a minority woman with Crohn’s Disease and a permanent ostomy. Being a different race, gender, sexuality and/or ethnicity adds a whole other layer of complexity to the IBD experience. I really wanted to bring to light how complicated our…