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
- Crohn's, Healthcare Disparities, living with IBD, Mental Health, Minority Health, Ulcerative Colitis
Patients’ Journey Through Inflammatory Bowel Disease (IBD): A Qualitative Study
Tina Aswani Omprakash, Norelle Reilly, Jan Bhagwakar, Jeanette Carrell, Kristina Woodburn, Abby Breyer, Frances Close, Gabriel Wong, PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY, Inflammatory Bowel Diseases, Volume 27, Issue Supplement_1, January 2021, Pages S53–S54, https://doi.org/10.1093/ibd/izaa347.127 **Abstract originally published in the Crohn’s & Colitis Foundation’s journal Inflammatory Bowel Diseases on January 21st, 2021 and presented at Crohn’s & Colitis Congress. Research study sponsored by Genentech & led by patient advocate Tina Aswani Omprakash of Icahn School of Medicine at Mount Sinai** I’m proud to announce the first patient advocate led study in the IBD space! Please view the above downloadable poster and link to the abstract for the results…
- Body Positivity, cervical cancer, Dating & Relationships, diversity, Mental Health, Minority Health, Ostomy, Self-image, stigma, Women's Health
~OYC Trailblazers~ Jennylyn’s Ostomy Love Story in the Philippines
My name is Jennylyn Ajes and I’m 32 years old from Laguna, Phillippines. In 2018, I was diagnosed with stage 2b cervical cancer, which means I had a tumor that had grown beyond the cervix and uterus.[1] During this time, I had undergone chemotherapy, radiation therapy and brachytherapy. I had to do these therapies for 5 months total and none of it was easy. The brachytherapy required internal radiation therapy to get to the source of the cancer and try to wipe it out. I felt fine for the first 3 months after treatment but I really struggled with my confidence losing most of my hair and eyebrows due to…
- 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…
- 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, 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, Colorectal Surgery, Crohn's, fistula, Mental Health, Minority Health, Ostomy, stigma, Ulcerative Colitis, Women's Health, World IBD Day
What IBD Awareness Means to a South Asian American Woman with Crohn’s
By Tina Aswani Omprakash Originally published in IBD Relief on May 18th, 2020: https://www.ibdrelief.com/ibd-stories/my-ibd-story-tina-aswani-omprakash I remember waking up from a surgery to repair a rectovaginal fistula in late 2011 and being yelled at by an elderly family member for ruining their lives. Even though I was still in a haze in the recovery room, the tears of pain and anguish washed over me. Whether it was my body violating me with perianal fistulizing Crohn’s disease or family and friends constantly reminding me of how much of a burden I was, the floodgates opened in that moment as I asked that family member to please excuse themselves from the recovery area. You see, it’s really…
- acceptance, advocacy, coping with flares, Crohn's, fistula, Gastroparesis, invisible illness, living with IBD, Mental Health, Ostomy, PTSD, stigma, Ulcerative Colitis
Talking Gut Podcast Episode 20: Tina Aswani Omprakash on Resilience & GRITT
As May, a month of several health initiatives, comes to a close, I wanted to highlight Mental Health Awareness Month, World IBD Day and World Digestive Disease Day by talking about all three in my latest podcast interview with Dr. Jim Kantidakis, Clinical Psychologist & Gut-Directed Hypnotherapist, at the Gut Centre in Australia. In his podcast titled Talking Gut, I discuss the power of resilience, that so-called grit that living with Crohn’s Disease, multiple fistulae, a permanent ileostomy, gastroparesis, IBS and SIBO have given me over the years. Dr. Kantidakis asks me how I got through all my hospitalizations and faced all the medical PTSD and I would have to…
- 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, 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…