Originally published on February 2nd, 2021 on the Crohn’s & Colitis Foundation’s IBDVisible Blog: https://www.crohnscolitisfoundation.org/blog/being-south-asian-american-living-with-ibd By: Tina Aswani Omprakash I was 22 years old when I was first diagnosed with inflammatory bowel disease (IBD). I felt very isolated as a young South Asian American woman, unable to relate to those around me who were healthy and able-bodied. Even though this disease runs in my family, there was very little knowledge about Crohn’s disease or willingness to discuss my journey. Not only was my diagnosis delayed from my teenage years, due to a lack of understanding of extraintestinal manifestations (in my case, joint pains, ocular inflammation, dermatological issues), but once I did get a diagnosis, many healthcare…
- awareness, Crohn's, Fistulizing Disease, Healthcare Disparities, Minority Health, Ostomy, stigma, Ulcerative Colitis
- 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,…
- 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…
- Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
Patient Experiences with IBD Surgery
Last winter, my husband and caregiver, Anand, and I recorded a video with the Crohn’s & Colitis Foundation on what it’s like to have surgery for Crohn’s & ulcerative colitis. We shared my experiences as a patient undergoing colorectal surgery and his experiences as my caregiver. The video was released in the last week or so. To view, check out https://youtu.be/InmqegoP-6c. Be sure to check out the entire video as there are other patient experiences included as well! So own your Crohn’s, own your colitis, and educate yourself on all the treatment options available to you and your loved ones! ?✨ ~~Love, Light & Peace Always~~
- Ableism, acceptance, advocacy, awareness, Body Positivity, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Minority Health, Ostomy, Ostomy Awareness Day, stigma, Ulcerative Colitis
My Feature in Suffering the Silence’s Photo Series Campaign
Originally Published in The Mighty on October 2nd, 2019: https://themighty.com/2019/10/suffering-the-silence-chronic-illness-photo-series/ “I was diagnosed 13.5 years ago but I feel like for a long time I kept it quiet. It’s so deeply stigmatized in American culture. Crohn’s being a bowel disease makes it very difficult to talk about. It has to do with something that nobody talks about. It’s so debilitating. A lot of times it’s mistaken for an eating disorder because our weight can be all over the place so nobody wants to ask us what’s going on because they’re ashamed to. We want to be asked how we’re feeling. Since I became an advocate, more and more people are…
- awareness, Colorectal Surgery, coping with flares, Crohn's, Fistulizing Disease, Irritable Bowel Syndrome, living with IBD, Pelvic Floor Dysfunction, Pelvic pain, stigma, Ulcerative Colitis, Women's Health
Pelvic Pain in IBD: An Overlooked Complication
By Tina Aswani Omprakash, Medically Reviewed by Jenny Blair, MD Originally Published by Oshi Health, Inc., on August 8th, 2019 A complication of inflammatory bowel disease (IBD) that often goes unaddressed and misdiagnosed is chronic pelvic pain (CPP). CPP is often defined as pain in the pelvic area that isn’t cyclic and isn’t related to pregnancy and that lasts for three to six months. It may affect from 6% to 25% of reproductive-age women, depending on how it’s defined, as well as men and older women. The condition can arise from a variety of causes. How I’ve Experienced Pelvic Pain So how does CPP apply to us as IBD patients?…
- Ableism, acceptance, advocacy, awareness, caregivers, Colorectal Surgery, Crohn's, Dating & Relationships, Disability Justice, Fistulizing Disease, living with IBD, Ostomy, stigma, Ulcerative Colitis, Women's Health
Love Knows No Disability
Nine years ago today, the love of my life, Anand, and I were married in a beautiful Hindu temple with several of our relatives and friends in attendance from all over the world. It was a momentous occasion for me not just in a traditional sense but because of how close I had been to death just two years prior. But as beautiful as the wedding was, the process of getting married wasn’t exactly a fairytale or a bed of roses. You see, a couple years prior, I was freed of an extremely warped and diseased colon on the 4th of July, 2008 (see blog post: My Very Own Independence…
- advocacy, awareness, Colorectal Surgery, Crohn's, Fistulizing Disease, J-Pouch, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
J-Pouch Failure – Tina’s Story
Originally published by Amber of Colitis Ninja on June 12, 2019: https://colitisninja.com/2019/06/j-pouch-failure-tinas-story/ J-POUCH TAKEDOWN ANNIVERSARY Next month is my 5 year takedown anniversary for my j-pouch. I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch. SUCCESS & FAILURE STORIES I have given a lot of thought to how I would address this year’s takedown anniversary. I thought…
- acceptance, awareness, Body Positivity, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Mental Health, Ostomy, Self-image, Ulcerative Colitis, Women's Health, World IBD Day
Why My IBD Scars Make Me Proud
How I learned to love what once made me shudder. By Tina Aswani Omprakash Originally published by Everyday Health on 5/17/2019: https://www.everydayhealth.com/columns/my-health-story/why-my-ibd-scars-make-me-proud/ This year’s World IBD Day theme is “Making the Invisible Visible,” and I’ve been taking a long hard look at what that means to me. The reality is that living with inflammatory bowel disease (IBD) has meant donning an invisibility cloak for most of my adult life. But over the past 14 months, I’ve striven to make my invisible illness visible. From sharing my story widely on social media to using my platform to educate others on how IBD wreaks havoc on patients like me, I’ve come to realize that visibility is necessary for…
- advocacy, awareness, Colorectal Surgery, Crohn's, Emerging Therapies, Fistulizing Disease, living with IBD, Ostomy, Ulcerative Colitis, Women's Health
Fistulas: What You Need to Know About a Common Side Effect of Crohn’s
By Padma Nagappan Medically Reviewed by Kareem Sassi, MD Originally published by Everyday Health on May 14th, 2019: https://www.everydayhealth.com/crohns-disease/symptoms/fistulas-common-crohns-side-effect-you-should-aware/ Fistulas are an abnormal connection between two body parts. In Crohn’s patients they form as tunnels within the walls of the intestine and connect to other organs or tissue, causing pain and infection. After years of living in intense pain and going through several misdiagnoses, Tina Aswani Omprakash, found out she had Crohn’s disease. Her condition was so severe that she needed emergency proctocolectomy surgery (removal of the colon and rectum), and she was put on biologics. “I knew Crohn’s was an intense disease, but I did not realize what it takes to really, truly fight…