By Tina Aswani Omprakash **Supported by agutsyfeeling.org, a collaboration between Girls With Guts, Purdue University, College of Pharmacy, and the Academy for Continued Healthcare Learning** In today’s day and age, there are many treatment options for inflammatory bowel disease (IBD – ulcerative colitis and Crohn’s disease). But given all the new medications on the horizon, how do we as patients participate in shared decision making with our IBD specialists regarding which medication might be best for us? And how do we know when we have given the medication a fair enough shot and that it might be time to move on to the next treatment option? How do we know…
- advocacy, autoimmune disease, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ulcerative Colitis
- acceptance, advocacy, Arab American Heritage Month, awareness, coping with flares, Crohn's, Cultural Stigma, diversity, living with IBD, Mental Health, Minority Health, National Minority Health Month, Ulcerative Colitis, Women's Health
Basmah’s Journey: The Cultural Impacts of Being an Egyptian Crohnie
“You have Crohn’s Disease.” That’s what my gastroenterologist told me after my first colonoscopy in 2003. I was 16 years old, and nobody in my family, except for my mom who is a doctor, had heard of the disease.For the last 18 years, I have experienced multiple hospitalizations, taken a plethora of medications, and contended with related symptoms and illnesses such as extreme weight loss, loss of hair, C. difficile, osteoporosis, and blood clots. I am a child of immigrants from Egypt, and grew up in a tightly knit Arab Muslim community in Minnesota. I absolutely loved it (still do) when we all got together for picnics, holidays, and gatherings.…
- autoimmune disease, Black Lives Matter, Caregiving, Coronavirus, Crohn's, Dating & Relationships, J-Pouch, living with IBD, Minority Health, Ulcerative Colitis, Women's Health
Taryn’s Journey: Navigating Relationships and IBD During the Pandemic
“I think I might be at the start of a partial obstruction. What do I do?” The words I shared with my husband in late March 2020 weren’t rhetorical. It was more like I dropped a mini bomb into an already stressful situation. Even though I’ve had a series of partial bowel obstructions over the years, this time felt different. We were at the beginning of the pandemic. At a time when merely stepping outside seemed dangerous, a trip to the ER felt terrifying. In that moment, I was asking for much more than just advice. I wanted – no, needed – reassurance that regardless of what was happening with…
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Dietary Guidance in IBD – A South Asian Approach
On March 5th, 2021, Dr. Neilanjan Nandi of Penn Medicine, Philadelphia, PA, USA, hosted Dr. Sumit Bhatia of Medanta The MediCity Hospital, Gurgaon, India as well as Neha Shah, RD, of University of San Francisco, CA, USA, and me, Crohn’s & ostomy patient advocate of New York, NY. We sat down to discuss dietary guidance as provided by Dr. Bhatia along with practical tips of what South Asian foods to eat, how to customize them and how to include more protein in our diets to promote healing. Dr. Nandi also shared many important insights about diet from a South Asian American perspective and I also talked about what has worked…
- Clinical Trials, Crohn's, Digital Healthcare Innovations, Emerging Therapies, living with IBD, Ulcerative Colitis, Wireless Drug Delivery
Incredible Innovations: A Brand New Wireless IBD Medication Delivery Solution
Sponsored by Veloce Corporation – SmartTab. All thoughts & opinions are my own. As a Crohn’s patient for the last 15 years, I’ve done my fair share of taking oral medications, receiving infusions and giving myself subcutaneous injections. So last summer, when I came across a digital health company called SmartTab, I was fascinated to learn about the wireless drug delivery solutions they are working on to change the way we take and absorb medications. After having done a lot of research and seeing the buzz at Crohn’s & Colitis Congress ’21 on SmartTab’s poster session, I thought it’s now high time to share this technology with the IBD patient…
- awareness, Crohn's, Fistulizing Disease, Healthcare Disparities, Minority Health, Ostomy, stigma, Ulcerative Colitis
Being South Asian American & Living with IBD
Originally published on February 2nd, 2021 on the Crohn’s & Colitis Foundation’s IBDVisible Blog: https://www.crohnscolitisfoundation.org/blog/being-south-asian-american-living-with-ibd By: Tina Aswani Omprakash I was 22 years old when I was first diagnosed with inflammatory bowel disease (IBD). I felt very isolated as a young South Asian American woman, unable to relate to those around me who were healthy and able-bodied. Even though this disease runs in my family, there was very little knowledge about Crohn’s disease or willingness to discuss my journey. Not only was my diagnosis delayed from my teenage years, due to a lack of understanding of extraintestinal manifestations (in my case, joint pains, ocular inflammation, dermatological issues), but once I did get a diagnosis, many healthcare…
- acceptance, advocacy, awareness, coping with flares, Crohn's, diversity, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Anisha Zumba-ing Her Way into 2021!
This blog post has been done in collaboration with Girls With Guts Community Connection. By Anisha Gangotra My name is Anisha, I’m 37 years old and I live in Buckinghamshire in the United Kingdom. I’ve lived with ulcerative colitis since 2008, from the age of 24. I experienced my first colitis symptoms following a two-week holiday abroad. My stomach hadn’t felt quite right but I’d also had my period when I was on holiday so I assumed that it was a mixture of jet lag, my body adjusting to a different environment and my menstrual cycle. I’ve always had a sensitive stomach so I didn’t think much of it. When…
- advocacy, awareness, Coronavirus, COVID-19, Crohn's, immunocompromised, Minority Health, Ulcerative Colitis, Vaccinations
South Asian IBD & COVID-19
Ten days ago, India released its two vaccines, CoviShield & Covaxin, to begin distribution to frontline workers and eventually the general population. As such, Dr. Sumit Bhatia, leading IBD specialist at Medanta – The Medicity Hospital in Gurgaon, India, and Dr. Neilanjan Nandi, esteemed IBD specialist at the University of Pennsylvania, Philadelphia, PA, USA, joined me on the FITWITMD Facebook page for a live discussion to explain the two vaccines in India along with the two mRNA vaccines in much of the Western world. The purpose of this discussion was to understand how COVID is affecting the IBD population and to address vaccine hesitancy in the global South Asian IBD…
- Crohn's, Healthcare Disparities, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
Patients’ Journey Through Inflammatory Bowel Disease (IBD): A Qualitative Study
Tina Aswani Omprakash, Norelle Reilly, Jan Bhagwakar, Jeanette Carrell, Kristina Woodburn, Abby Breyer, Frances Close, Gabriel Wong, PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY, Inflammatory Bowel Diseases, Volume 27, Issue Supplement_1, January 2021, Pages S53–S54, https://doi.org/10.1093/ibd/izaa347.127 **Abstract originally published in the Crohn’s & Colitis Foundation’s journal Inflammatory Bowel Diseases on January 21st, 2021 and presented at Crohn’s & Colitis Congress. Research study sponsored by Genentech & led by patient advocate Tina Aswani Omprakash of Icahn School of Medicine at Mount Sinai** I’m proud to announce the first patient advocate led study in the IBD space! Please view the above downloadable poster and link to the abstract for the results…
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IBD & Tea: What Patients Want to Know When It Comes to a Clinical Trial
Often, patients who live with Inflammatory Bowel Disease (IBD) do not respond to conventional drugs and are offered to participate in clinical trials for new treatments. When this happens, patients tend to have doubts and may feel scared because they do not have enough information about the process. This was the case for Tina Aswani Omprakash, IBD patient, patient thought leader, and award-winning author of the blog ´Own Your Crohn’s´, when she was offered to participate in a clinical trial. Aswani Omprakash talked about her experience from having participated in two clinical trials during the online debate ´IBD & Tea,´ streamed live on our Twitter account on the 25th of November. She was accompanied by IBD medical expert…