By Tina Aswani Omprakash Originally published in Everyday Health on January 8th, 2021 We open the new year with hope after a dreary year filled with ups and downs from the COVID-19 pandemic. As a woman with Crohn’s disease, a type of inflammatory bowel disease (IBD), I have been practicing every precaution recommended by my doctor, from masking up to practicing social distancing and avoiding crowded, indoor spaces. While I’m used to being home a lot as a result of surgeries related to my disease and regular flare-ups, the pandemic was doubly hard for me because I have been in remission, and in good health to go out and about.…
- Coronavirus, COVID-19, Crohn's, immunocompromised, J-Pouch, Minority Health, Ostomy, Pregnancy in IBD, Ulcerative Colitis, Vaccinations
- Colorectal Surgery, coping with flares, Crohn's, J-Pouch, Kock Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Mara Living Her Best Life with a Kock Pouch in Germany
My name is Mara and I am from a small state in Germany called Bremen. I was diagnosed with inflammatory bowel disease in 2016 when I was 21. Shortly after my diagnosis, I celebrated my 22nd birthday. I am pursuing my Ph.D. in Marine Microbiology working to learn more about unknown microorganisms found on the seafloor. One week after handing in my Bachelor’s thesis, I became severely ill with sudden and bloody diarrhea. I could not leave the toilet at all. A few days after having these initial symptoms, I was admitted to the hospital. The verdict was clear: I was diagnosed with ulcerative colitis. I thought this would be…
- 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…
- colorectal cancer, Colorectal Surgery, Coronavirus, COVID-19, Crohn's, immunocompromised, Ostomy, Ostomy Awareness Day, Ulcerative Colitis
Managing Ostomy Care in the Era of Covid-19
Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot these last several months. As a result, my stoma size has been changing every week or two. With that, I’ve suffered a lot of ostomy leaks but even more skin irritation. While I’ve worked with my ostomy nurse virtually the last couple months to get my skin issues under control, I keep thinking of my ostomate family online and how you all may be handling your ostomy care in…
-
Pelvic Floor Dysfunction in IBD ~ A Live Discussion with the Crohn’s & Colitis Foundation
Pelvic pain is far more common in inflammatory bowel disease than often discussed or addressed. In a recent live discussion with Dr. Tayyaba Ahmed (pelvic pain physiatrist at Pelvic Rehabilitation), Dr. Neilanjan Nandi (IBD specialist at Penn Medicine), Kara Mortifoglio, DPT (pelvic floor physical therapist at Solstice Physiotherapy) and me in conjunction with the Crohn’s & Colitis Foundation, we discuss the various ways in which pelvic pain manifests in IBD patients. Given that pelvic pain is often confused with IBD symptoms and flare-ups, we discuss symptoms and how to get help to alleviate this pain and achieve greater quality of life. Please check out the video below to learn more:…
- 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…
- 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…
- 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, 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…