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…
- advocacy, awareness, Coronavirus, COVID-19, Crohn's, immunocompromised, Minority Health, Ulcerative Colitis, Vaccinations
- 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…
- Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, Minority Health, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Vaccinations
Demystifying the COVID Vaccine for IBD Patients
By Tina Aswani Omprakash Originally published in Everyday Health on January 8th, 2021 We open the new year with hope after a dreary year filled with ups and downs from the COVID-19 pandemic. As a woman with Crohn’s disease, a type of inflammatory bowel disease (IBD), I have been practicing every precaution recommended by my doctor, from masking up to practicing social distancing and avoiding crowded, indoor spaces. While I’m used to being home a lot as a result of surgeries related to my disease and regular flare-ups, the pandemic was doubly hard for me because I have been in remission, and in good health to go out and about.…
- Complementary & Alternative Medicine, Coronavirus, COVID-19, Crohn's, Diet, IBD Parenthood Project, Nutrition, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Vaccinations
AIBD 2020: Hot Topics for IBD Patients
This year’s Advances in IBD conference was my first time attending and it sure as heck did not disappoint! AIBD may have been virtual due to the ongoing pandemic but it was nevertheless very well-organized and informative. The sessions shared many important studies and topics for us to learn and know all about. As a patient advocate who was sharing information across platforms, there were several topics buzzing in the IBD patient community around the world. Below are my picks for the top highlights from AIBD for IBD patients: COVID-19 & IBD According to the SECURE-IBD registry, IBD patients are not necessarily at greater risk of contracting COVID-19. Rates of…
- Colorectal Surgery, coping with flares, Crohn's, J-Pouch, Kock Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Mara Living Her Best Life with a Kock Pouch in Germany
My name is Mara and I am from a small state in Germany called Bremen. I was diagnosed with inflammatory bowel disease in 2016 when I was 21. Shortly after my diagnosis, I celebrated my 22nd birthday. I am pursuing my Ph.D. in Marine Microbiology working to learn more about unknown microorganisms found on the seafloor. One week after handing in my Bachelor’s thesis, I became severely ill with sudden and bloody diarrhea. I could not leave the toilet at all. A few days after having these initial symptoms, I was admitted to the hospital. The verdict was clear: I was diagnosed with ulcerative colitis. I thought this would be…
- chronic pain, Colorectal Surgery, coping with flares, Crohn's, fatigue, Pelvic pain, Ulcerative Colitis
Pain and Fatigue in IBD: Provider and Patient Perspectives
Raise your hand if you’ve dealt with chronic pain and fatigue living with IBD. Pain and fatigue are two common complaints amongst Crohn’s & ulcerative colitis patients whether disease is active or in remission. And oftentimes, it’s the least addressed or acknowledged. Many of us patients live with different types of chronic pain from abdominal pain and cramping related to disease flare-ups to post-surgical pain and pelvic pain. Some of us also tend to have pain from extraintestinal manifestations including severe joint pain and pain from dermatological manifestations (erythema nodosum, pyoderma gangrenosum, etc.). And fatigue appears to be a staple living with IBD where even if we have relief from…
- colorectal cancer, Colorectal Surgery, Coronavirus, COVID-19, Crohn's, immunocompromised, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
Managing Ostomy Care in the Era of Covid-19
Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot these last several months. As a result, my stoma size has been changing every week or two. With that, I’ve suffered a lot of ostomy leaks but even more skin irritation. While I’ve worked with my ostomy nurse virtually the last couple months to get my skin issues under control, I keep thinking of my ostomate family online and how you all may be handling your ostomy care in…
- Colorectal Surgery, Crohn's, Diet, living with IBD, Nutrition, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
IFFGD #DDHChat: Nutrition for the Ileostomy – The Dietitian & Patient Perspectives
The Diet & Digestive Health (#DDHChat) Twitter chat series with the International Foundation for Gastrointestinal Disorders (IFFGD), co-host Tina Aswani Omprakash and lead host dietitian Neha D. Shah, MPH, RD, CNSC, CHES. We are excited to help to educate patients, caregivers, and others about Nutrition for the Ileostomy: The Dietitian and Patient Perspective. Recap originally published by IFFGD on October 6th, 2020: https://www.iffgd.org/blog/october-2020-ddhchat-recap.html IFFGD – introductory tweets and remarks: The views and experiences shared by our participant are their own and do not reflect the official positions of IFFGD. Each patient is different. Always consult with your health care provider or a registered dietitian (RD) on a diet treatment plan…
- acceptance, advocacy, Black Lives Matter, Caregiving, coping with flares, Crohn's, health equity, Healthcare Disparities, living with IBD, Minority Health, Ulcerative Colitis
~ OYC Trailblazers ~ Amy & Terrell: Crohn-ically Ever After
My name is Amy Btiebet Washington, I’m 34 years old and live in Ohio. I was diagnosed with Crohn’s disease when I was 26 (in 2012). Initially, I thought I had a terrible flu, but after a few days of symptoms, I was rushed to the hospital with a 106-degree fever. I was immediately treated for sepsis, which led to 5 days in the ICU. After multiple tests, I was diagnosed with Crohn’s disease. The sepsis was a result of a severe infection caused by Crohn’s disease. At the time of my diagnosis, I knew very little about the disease and didn’t know anyone who lived with Crohn’s or ulcerative…