The recent advice column in the NY Times called “Is it OK to Dump Him Because of His Medical Condition?” has been percolating in our minds for the last few weeks. Tomorrow, July 2nd, 2020, marks 10 years since I’ve been married to the love of my life, Anand. Yes, you read that right: one whole decade of wedded bliss and 14 years of us being together. (See Love Knows No Disability.) I still vividly remember telling him 3 weeks into us dating that I had been diagnosed with inflammatory bowel disease (IBD) a few short months earlier and that the disease had taken the lives of my father and…
- Ableism, acceptance, advocacy, Crohn's, Dating & Relationships, Disability Justice, Minority Health, stigma, Ulcerative Colitis
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What I Learned From Joining a Clinical Trial for Crohn’s
By Tina Aswani Omprakash, Medically reviewed by Jenny Blair, MD Originally published on the Oshi Health website on April 6th, 2020: http://www.oshihealth.com/joining-clinical-trial/ My journey with Crohn’s disease has been an arduous one, laden with difficult decisions, including whether to take strong medications and when to have life-altering surgeries. At one point, Crohn’s derailed my career, my prospects of finishing graduate school and my ability to pursue meaningful relationships. But I was scared to try any new medication, let alone partake in a clinical trial. I was young and didn’t want to be burdened by a strict drug regimen or potential side effects. After I had more than 20 corrective surgeries…
- acceptance, advocacy, awareness, Caregiving, Crohn's, Dating & Relationships, Minority Health, stigma, Ulcerative Colitis, World IBD Day
World IBD Day Panel Discussion: Experiences of Minority IBD Patients & Caregivers
By Anand Omprakash For World IBD Day, I was invited to be a part of a virtual panel discussion with the Crohn’s & Colitis Foundation, Dr. Meena Bewtra (IBD patient & gastroenterologist) and Stephanie Stinson (IBD patient) highlighting the unique struggles that minority patients and caregivers face. I did this because I wanted to shed light upon the stigmas surrounding chronic illness in my community, especially so when it comes to a bowel disease and to marriage. In many communities around the world, a chronic illness is often viewed as a liability because marriage is considered as a familial “contract” to provide and reproduce and not just a means to provide…
- advocacy, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ulcerative Colitis
COVID-19 Survivors: Stories of Hope in the IBD World
The last 8 weeks since the World Health Organization declared Coronavirus a pandemic have been nothing short of an emotional roller coaster ride for many of us. From uncertainty around chronic illness and medications making us a higher risk to jarring numbers of lethal infection rates, we are all grappling with much despair. Given all the sadness in the media right now, I thought it relevant to share stories of hope, ones where IBD patients, their caregivers and their doctors have not just survived but are making a full recovery. Check out the stories below of 4 IBD patients, a caregiver and a gastroenterologist, all survivors of COVID-19 and heroes…
- advocacy, Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Mental Health, Ulcerative Colitis
Immunocompromised in the Age of Coronavirus
By Tina Aswani Omprakash A Crohn’s patient shares her very real fears, anxieties, and sadness around being immunocompromised while grappling with the coronavirus pandemic in New York City. *Originally published on April 27th, 2020 by Everyday Health: https://www.everydayhealth.com/columns/my-health-story/immunocompromised-in-the-age-of-coronavirus/ It was one of those winters full of never-ending health complications. Before Thanksgiving I ruptured a ligament in my ankle, which compounded my difficulties in managing life with Crohn’s disease. And if that wasn’t hard enough, many of my other conditions — gastroparesis, arthritis, pelvic pain — flared up due to immobility from the ankle injury. More recently, I had a couple of ER visits because of a herniated disc in my neck. In…
- acceptance, advocacy, Colorectal Surgery, coping with flares, Coronavirus, COVID-19, Crohn's, fistula, Fistulizing Disease, immunocompromised, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
~OYC TRAILBLAZERS~ Spotlight on Malaysian Crohnie & Ostomate Saravanan
It all started in early 2008 when I was still in high school and started to experience bowel disease symptoms. However, as many of us know, there can be a large gap between the time we experience symptoms and the time we are officially diagnosed. I was finally diagnosed with Crohn’s disease in July 2012. The four and half years in between onset of symptoms and diagnosis were the most arduous part of my journey. My battle began upon developing a fistula. For those who may not be familiar, a fistula is an abnormal tract created between the intestinal wall and another organ or out on to the skin due…
- advocacy, awareness, Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Ostomy, Ulcerative Colitis
Managing IBD in the Era of COVID-19
Last Friday, Gastroenterologist Dr. Supriya Rao and I had a conversation on Instagram Live about how to manage inflammatory bowel disease given the difficult circumstances around COVID-19. To watch and learn more, please check out the video below: For additional information, please feel free to reach out to @gutsygirlmd on Instagram or me here on my blog. For your reference, I have also put together a summary of tips on how to optimize our use of telehealth during the pandemic to manage our IBD optimally from a distance: https://ownyourcrohns.com/telehealth-ibdcare-covid19/. This post also references guidance from the IOIBD and AGA that we IBD patients should be aware of when discussing our…
- advocacy, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis
Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic
One of the things I do a lot as a patient with many chronic illnesses is visit all sorts of healthcare providers for the maintenance of my care. However, during this time, when many non-essential visits to the doctor’s office or to medical facilities are not recommended, what do we do? In the last 6 weeks, many providers have ramped up a service we are now calling telehealth. That is, many doctors are offering virtual visits to us from the convenience of our home. While it isn’t the ideal way to examine a patient, it certainly gets the job sufficiently done for many of us who are struggling to manage…
- Ableism, advocacy, awareness, Colorectal Surgery, Coronavirus, COVID-19, Crohn's, Disability Justice, immunocompromised, invisible illness, living with IBD, Ostomy, Ulcerative Colitis
Inspire’s #KeepUsAllSafe COVID-19 Campaign
Last week, Inspire released a short video we made virtually on why living with Crohn’s Disease and being immunocompromised during COVID-19 is downright terrifying for patients like myself who are chronically and invisibly ill. Please take a moment to watch this video and share to help raise awareness. And don’t forget – every life is valuable! So please #KeepUsAll safe by practicing social distancing and staying home as much as possible! Be well & best wishes always!
- advocacy, awareness, Coronavirus, COVID-19, Crohn's, Disability Justice, invisible illness, living with IBD, Ulcerative Colitis
An Interview with News 12 NJ: How Does Coronavirus Affect YOU?
Earlier today, News 12 NJ journalist Prashanthi Musapet interviewed IBD patient advocate Tina Aswani Omprakash of OwnYourCrohns.com on Instagram LIVE on her experience as an immunocompromised patient living with Crohn’s Disease in the midst of the #COVID19 pandemic. To watch the interview, view the video below. In the video, you will hear Tina’s thoughts and experiences about being #HighRiskCOVID19 and how critical social distancing and taking responsibility for public welfare is during this outbreak to save lives like hers. I hope you found this interview informative and I especially hope that speaking up about being immunocompromised during #Coronavirus helps to create awareness and education in the able-bodied world about chronic…