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…
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- Ableism, acceptance, advocacy, Crohn's, Dating & Relationships, Disability Justice, Minority Health, stigma, Ulcerative Colitis
I am NOT a Burden: A South Asian Perspective
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…
- 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, 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…
- 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…
- acceptance, advocacy, awareness, Crohn's, Dating & Relationships, living with IBD, Ostomy, Self-image, stigma
A Valentine’s Day Special: Dating & Relationships with an Ostomy
A couple weeks ago, Amber Wallace Ogle of Ostomy Diaries and I did a Facebook Live in conjunction with Hollister Incorporated regarding dating, relationships and intimacy with an ostomy. Yes, folks, it is possible and that’s what Amber and I aimed to share–our stories of happiness and heartbreak and how we found lasting love and continue to thrive in our relationships while we live with permanent ostomies. Feel free to check out the video below. Enjoy! So, own your Crohn’s, own your ostomy, and take charge of your relationships and remember that our ostomies are not a flaw. They make us whole again and help us survive what we may…
- advocacy, awareness, Body Positivity, coping with flares, Crohn's, Diet, J-Pouch, living with IBD, Ostomy, Pelvic Floor Dysfunction, Self-image, Ulcerative Colitis, Women's Health
Weekend Long IBD Retreat Helped Me to Own My Crohn’s
Everyday Health blogger Tina Aswani Omprakash details her experience on a weekend-long retreat for women living with IBDs.
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My Nomination for the WEGO Health Patient Advocacy Awards
In the last few weeks, I was nominated for 6 different WEGO Health Awards in honor of my advocacy work for patients who suffer from inflammatory bowel disease (IBD): Patient Leader Hero, Best Advocacy for Another, Best in Show: Blog, Best in Show: Facebook, Best in Show: Twitter and Rookie of the Year. Now many of you might be wondering why I advocate. I advocate because we all deserve representation no matter the color of our skin, shape or size of our bodies, our gender, our sexual orientation or our ability (or lack thereof). ✊? We all deserve representation for our illnesses and disabilities. And our conditions and the way we…
- awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, World IBD Day
~OYC Trailblazers~ Harman’s Story from India
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…
