This blog post has been done in collaboration with Girls With Guts Community Connection. By Anisha Gangotra My name is Anisha, I’m 37 years old and I live in Buckinghamshire in the United Kingdom. I’ve lived with ulcerative colitis since 2008, from the age of 24. I experienced my first colitis symptoms following a two-week holiday abroad. My stomach hadn’t felt quite right but I’d also had my period when I was on holiday so I assumed that it was a mixture of jet lag, my body adjusting to a different environment and my menstrual cycle. I’ve always had a sensitive stomach so I didn’t think much of it. When…
- acceptance, advocacy, awareness, coping with flares, Crohn's, diversity, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
- advocacy, awareness, Coronavirus, COVID-19, Crohn's, immunocompromised, Minority Health, Ulcerative Colitis, Vaccinations
South Asian IBD & COVID-19
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…
- 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…
- advocacy, Crohn's, diversity, Gastroparesis, health equity, Healthcare Disparities, Healthcare Marketing, living with IBD, Patient Voice, Ulcerative Colitis, Women's Health
MM&M Transform Talks: Prioritizing the Patient Voice
I recently had the opportunity to work with the MM&M Transform conference on a panel discussion on Prioritizing the Patient Voice in anticipation of their conference on September 29th-30th. A panel of 3 of us patient advocates (Tonya Cherie Hegamin, Type 1 Diabetes; Teresa Johnson, Multiple Sclerosis & Heart Disease; and me, Crohn’s Disease & Gastroparesis) discussed why it’s so important to engage patients in healthcare discussions, from digital health to biotechnology and pharmaceuticals. At the forefront of our conversation was a topic near and dear to all 3 of us: diversity, inclusion and health equity as well as medical accessibility for patients of color like ourselves. Check out our…
- Ableism, advocacy, Coronavirus, COVID-19, Crohn's, disability accommodations, Disability Justice, Gastroparesis, invisible illness, living with IBD, Mental Health, Ulcerative Colitis
University Accommodations in the COVID-19 Era
The last few weeks have felt daunting and overwhelming as I’ve been battling intense floods of illness and considering whether or not to resume graduate school part-time again this fall. You see, even contemplating a graduate program was a huge undertaking for me a couple years ago when I was accepted into a Certificate of Public Health program. As I slowly mustered up the courage to transfer into the Master’s in Public Health program, I felt scared yet hopeful all at once. And in between it all, I’ve had to take a trimester off to tend to my health. But all that aside, now we are in the midst of a…
- advocacy, Colorectal Surgery, Crohn's, fistula, Fistulizing Disease, J-Pouch, Mental Health, Minority Health, Ostomy, Self-image, stigma, Ulcerative Colitis, Women's Health
FitWitMD’s Live Discussion on Perianal Fistulizing Crohn’s Disease
A couple weeks ago, esteemed IBD specialist, Dr. Neilanjan Nandi (@fitwitmd) of Penn Medicine, hosted a live discussion with me on my experiences around Perianal Fistulizing Crohn’s Disease. We opened up the discussion to an international audience and allowed for a Q&A on this very deeply stigmatized topic that’s often not discussed or understood very well. To view the video, please watch here: I have been very open about my struggles with multiple fistulae in female parts. I have lived with 5 rectovaginal fistulae and 1 pelvic transphinteric fistula that was headed to break through at the site of my tailbone, nearly paralyzing me. To read more about my experiences,…
- Ableism, acceptance, advocacy, awareness, Crohn's, Dating & Relationships, living with IBD, Ostomy, stigma
Indian Ostomate Podcast Show: Episode 1 with Tina Aswani Omprakash
I recently had the honor of being interviewed by the very kind, positive and uplifting Indian ostomate and advocate named Dinesh Kundnani. Dinesh is someone who I came across early in my own journey as an ostomy advocate and it’s amazing to witness how he’s transformed from new ostomate to a seasoned one. Dinesh now helps others in India especially by showing his ostomy and helping to destigmatize what is considered to be a very taboo medical device. Early on in our interview, Dinesh asked if I would do this podcast show in the Hindi language! I was dumbfounded in the moment but I quickly agreed as I realized how…
- advocacy, awareness, Black Lives Matter, coping with flares, Crohn's, Disability Justice, Healthcare Disparities, Minority Health, Ostomy, Ulcerative Colitis
Black Lives Matter in the IBD Community, Too
In recent weeks, months and years, we have witnessed far too many hate crimes toward our Black brothers and sisters. It is not unknown to us that many Black bodies have been tested upon without fair pain medications, expected to endure tremendous suffering in the name of science. Within the healthcare system, not only do Black folx face significant health disparities and delays to diagnosis, they also deal with uphill battles when it comes to accessing good insurance, care and treatment options. With this blog post, I aim to shed light on the stories of 8 lovely Black inflammatory bowel disease (IBD) patients while sharing the resources of 3 die-hard…
- 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…
- acceptance, advocacy, awareness, Crohn's, Dating & Relationships, Disability Justice, Healthcare Disparities, LGBTQ+ health, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
~OYC Trailblazers~ Michelle’s Story on the Intersection of Crohn’s & an LGBTQIA+ Identity
By Michelle Cabral My symptoms first started around the age of 11. As I grew into my teenage and adult years, my symptoms worsened. I found myself dealing with bathroom urgency and vomiting on a daily life. I distinctly remember when I was about the age of 16, my mother and I were leaving a restaurant after a night out and I had already vomited. I still remember her saying something to the effect of “one day you’ll be able to go out for dinner and not feel like this.” Little did she know that my life would continue with this trajectory and I would finally be diagnosed via colonoscopy…