By Harman Singh Randhawa My battle with ulcerative colitis began in 2003. I was 20 years old and in my 2nd year of studying Engineering. By the time the diagnosis came through, I had already lived with pain and inordinate trips to bathroom for more than 6 months. Ignoring my painful symptoms and the discomfort that came with it, I kept delaying getting a thorough checkup. I started experiencing bloody diarrhea for many days. Finally, it was my sister who decided that the situation had gotten out of hand and drove me to PGI Hospital in Chandigarh in Punjab, India. I underwent a few tests and when the blood test…
- awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, World IBD Day
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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, 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.…
- advocacy, awareness, Crohn's, Diet, Emerging Therapies, Fistulizing Disease, living with IBD, Mental Health, Nutrition, Ostomy, Ulcerative Colitis
5 Hot Topics Presented at Crohn’s & Colitis Congress 2019
I had the honor of attending the 2019 Crohn’s & Colitis Congress in Las Vegas, NV as a patient advocate and speaker on the Perianal Fistulizing Crohn’s Disease panel. From diet and nutrition to mental health and pregnancy in IBD, here are the most salient topics presented at the conference this year for us patients: https://www.oshihealth.com/crohns-congress-2019/ Originally published by Oshi Health, Inc., on February 26th, 2019. Written by Tina Aswani Omprakash Medically reviewed by Matthew Hamilton, MD Please feel free to leave comments and feedback. I would love to hear your thoughts as always.
- advocacy, awareness, coping with flares, Crohn's, Holiday Season, living with IBD, Traveling with IBD, Ulcerative Colitis
The Value of Awareness & Advocacy During the Holidays
The holiday season is a wonderful time to celebrate all the blessings in our lives. It is a time to reflect on a year that has passed and our resolutions for the upcoming new year. But it is also a time that can be difficult for many of us with chronic illnesses, such as inflammatory bowel disease (IBD). And this is where the importance of awareness and advocacy of our conditions come into the picture. As joyous of a time that the holidays are, many of us struggle to keep up with the shopping, the eating, the drinking, the travel and all the social merriment of the holiday season. Oftentimes,…
- 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…