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, Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis
- 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…
- acceptance, advocacy, awareness, Coronavirus, COVID-19, Crohn's, J-Pouch, living with IBD, Mental Health, Ostomy, Ulcerative Colitis
Coping with IBD & Stress & Anxiety Around COVID-19
Last night I had the honor of doing a Facebook Live with Dr. Tiffany Taft (Psychogastroenterology, Northwestern University) and Amber Tresca (About IBD, IBD Moms) in conjunction with the Crohn’s & Colitis Foundation. We discussed all the emotions around COVID-19 from fear and anxiety to grief and loss and how we can cope best with stay-at-home and social distancing order in light of the challenges being presented to us in recent times. Hope you all found this discussion informative in learning some coping skills around the novel coronavirus (COVID-19) and living with IBD. For additional resources and updates on COVID-19 and IBD, please visit the Crohn’s & Colitis Foundation Coronavirus…
- advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
Colon Cancer & Its Devastating Impact on My Family
I was 8 years old when I walked into my father’s room in the hospital as he laid there coma-stricken in his final days. I told him I had gotten an A on my Science test, hoping in all my innocence that an A would make him so proud that he would wake up from his coma. He passed a few days later and I was heartbroken. My father, Dr. Moti Aswani, had long-standing Crohn’s Disease which turned into stage IV colorectal cancer 13 years into his diagnosis at the age of 37 (see An Ode to My Father & Fellow IBD Warrior). You see, Daddy had been told to…
- 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…
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Extraintestinal Manifestations of IBD: An “Eye” on Episcleritis
As many of you know, I was recently in Austin, TX, traveling to speak at Crohn’s & Colitis Congress. So, when I landed in Austin, I noticed a tinge of red in my right eye and I was a bit concerned but thought it would go away. You see, the dryness of the flight does sometimes irritate my eyes. But as I spent more and more time in Austin, I realized my eyes were reacting to something in the air with construction dust constantly assaulting my eyes. At this point, I became really alarmed because I knew this could be the beginnings of episcleritis, a form of eye inflammation that…
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IBD Insider: IBD 101 Live Discussion on Facebook
Last Wednesday night I was honored to moderate a panel discussing IBD at the 101 level with two physicians who specialize in the treatment of inflammatory bowel disease: Dr. Jami Kinnucan of Michigan Medicine and Dr. Rajeev Jain of Texas Digestive Disease Consultants. IBD 101 is meant to be a precursor to IBD INSIDER, the more intermediate level discussion that will take place on January 25th, 2020 at Crohn’s & Colitis Congress, a premier conference sponsored by the Crohn’s & Colitis Foundation and American Gastroenterological Association (AGA) in Austin, TX. In our discussion, we covered topics ranging from what Crohn’s Disease and ulcerative colitis are to the treatment of these…
- Ableism, acceptance, advocacy, awareness, Crohn's, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
What Will People Think? ~A Short Documentary by Chealynn Feaster
This past fall I had the opportunity to meet and film with filmmaker Chealynn Feaster, a fellow ostomate and Crohn’s Disease warrior. Together we pieced together a short documentary called What Will People Think? (Hindi/Urdu: Log Kya Kahenge?) which shines light on my advocacy work and the inspirations behind it from my father and aunt’s illnesses and subsequent deaths to my own constant battle with Crohn’s Disease and multiple colorectal surgeries. One of the aspects of living with inflammatory bowel disease (IBD) that I advocate for most is the nuances that racial and ethnic minorities face. Having a bowel disease and living with an ostomy, no matter how life-saving, often…
- advocacy, awareness, Biosimilars, Canadian healthcare, coping with flares, Crohn's, fistula, Forced Medical Switching, living with IBD, Lobbying, patient rights, Ulcerative Colitis, Women's Health
Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada
By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…