Given all the chatter about COVID-19 this upcoming fall season, I thought it best to inform ourselves as patients as to what to expect. Because rates of COVID infection are so variable across the U.S., I spoke to several leading gastroenterologists around the country to get their take on what they’re recommending to their IBD patients about vaccinations, medications, surgery in addition to attending social gatherings and returning to school and/or work. The 5 IBD specialists I spoke to are located in various parts of the country and include Dr. Jordan Axelrad (Adult GI at NYU Langone Medical Center), Dr. Sabina Ali (Pediatric GI at UCSF Benioff Children’s Hospital), Dr.…
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- Coronavirus, COVID-19, Crohn's, immunocompromised, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
How to Vacation (or Staycation) Safely During the Pandemic
**CAUTION: ONLY TRAVEL WITH THE ADVICE OF YOUR PHYSICIAN AND IF PANDEMIC NUMBERS ARE LOW IN YOUR AREA & THE LOCATION IN WHICH YOU ARE TRAVELING. PUBLIC HEALTH & WELFARE IS EVERYONE’S RIGHT & RESPONSIBILITY** Being chronically ill and immunocompromised is hard enough, add a pandemic into the mix, and it feels impossible to get out and do the things you love. Particularly for those of us who have spent so much time in hospital beds or at home recovering from disease flare-ups and/or surgeries, that when we feel well, we want to seize the day. Seizing that moment though has been next to impossible during the COVID-19 era. This…
- 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!
