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…
- Ableism, acceptance, advocacy, awareness, Body Positivity, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Minority Health, Ostomy, Ostomy Awareness Day, stigma, Ulcerative Colitis
- acceptance, advocacy, awareness, Body Positivity, Colorectal Surgery, Crohn's, Gratitude, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis
My Ostomy, My Lifesaver
In honor of National Ostomy Awareness Day, blogger Tina Aswani Omprakash shares her journey with an ostomy and how she broke through the taboos she faced. By Tina Aswani Omprakash Originally published in Everyday Health on October 2, 2019: https://www.everydayhealth.com/columns/my-health-story/one-woman-shares-her-gratitude-on-world-ostomy-day/ I woke up from surgery feeling like someone had taken a hammer to my stomach. The strong smell of antiseptic assaulted my nose as I struggled to take in breaths of air. I cracked my eyes open and looked around my white hospital room. My nurse and her aide pulled back the curtain separating me from my roommate and I lay motionless as they transferred me from a stretcher to…
- 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?…
- awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, World IBD Day
~OYC Trailblazers~ Harman’s Story from India
By Harman Singh Randhawa My battle with ulcerative colitis began in 2003. I was 20 years old and in my 2nd year of studying Engineering. By the time the diagnosis came through, I had already lived with pain and inordinate trips to bathroom for more than 6 months. Ignoring my painful symptoms and the discomfort that came with it, I kept delaying getting a thorough checkup. I started experiencing bloody diarrhea for many days. Finally, it was my sister who decided that the situation had gotten out of hand and drove me to PGI Hospital in Chandigarh in Punjab, India. I underwent a few tests and when the blood test…
- 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…
- acceptance, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Mental Health, PTSD, Stigma, Ulcerative Colitis, Women's Health
World PTSD Day 2019: The Faceless Woman
In honor of World PTSD Day today, I release a poem I wrote some weeks ago surrounding the medical trauma I’ve faced as a Crohn’s patient. This poem is not for the faint of heart so I will not be offended if you cannot read it. Post-traumatic stress is a term that’s often thrown around lightly but it has serious implications for people who have been in battle for their country, for their lives and against chronic illnesses. Everyday is a minefield with an array of flashbacks and memories that keep us from living our best lives. I urge you all to learn more and to respond to those who…
- advocacy, awareness, Clinical Trials, Colorectal Surgery, coping with flares, Crohn's, Disease Prevention, Emerging Therapies, living with IBD, stigma, Ulcerative Colitis
In the Name of Science & Research
Traveling home from Mayo was beyond excruciating– horrible abdominal cramping and nausea/vomiting as I could barely walk. After all the testing I had had (4 testing procedures, an ER visit, multiple appts all in 5 days) and my Stelara trough levels coming back as borderline, it was no surprise that my Crohn’s Disease had flared. I was in a frenzy and knew I had to act fast. Within an hour of landing, my local GI and I came up with a plan to admit me at my local hospital. She asked me to consider enrolling in the POWER clinical research study in which she would reinduce me with a megadose…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Mental Health, stigma, Ulcerative Colitis, Women's Health
I’m Chronically Ill & Depressed; So What?
You might be looking at this photo and thinking, “Oh, Tina looks like she’s having a great time enjoying beautiful weather in the park.” Can you tell an hour before this photo was taken, hubs struggled to get me to leave our home? Can you tell I had been curled up in bed crying? Can you tell it was next to impossible for me to get myself ready and out of bed that afternoon? NOPE. The truth is photos on social media and the Internet, in general, can be so deceiving. What you see here is a woman with Crohn’s and 37520572 other ailments smiling in a park because that’s…
- acceptance, advocacy, awareness, Crohn's, living with IBD, Mental Health, Minority Health, stigma, Ulcerative Colitis, Women's Health
As a Chronically-Ill Brown Woman, Here’s Why I Share My Survival Story
I had the honor of attending the 2019 HealtheVoices conference in Dallas, TX, as a patient advocate who was selected to attend from a group of 400+ applicants. Here are my impressions of the conference theme for this year, “A Little Heart Can Do Big Things” from the perspective of a chronically-ill brown patient advocate: https://www.oshihealth.com/my-survival-story/. Originally published by Oshi Health, Inc., on April 29th, 2019. Written by Tina Aswani Omprakash Please feel free to leave comments and feedback. I would love to hear your thoughts as always.
- advocacy, Colorectal Surgery, coping with flares, Crohn's, Diet, Emerging Therapies, Fistulizing Disease, living with IBD, Mental Health, Minority Health, Ostomy, stigma, Ulcerative Colitis, Women's Health
The Impact of IBD on Racial & Ethnic Minorities
On Tuesday, April 23rd, 2019, in honor of National Minority Health Month, Dr. Aline Charabaty (Director of Johns Hopkins IBD Center), Brooke Abbott (Patient Advocate, Crazy Creole Mommy Chronicles) & I (Patient Advocate, Own Your Crohn’s) had the honor of speaking with the Crohn’s & Colitis Foundation on the very important topic of “The Impact of IBD on Racial & Ethnic Minorities.” Please view the Crohn’s & Colitis Foundation’s video below: If you are a man or woman of color living with inflammatory bowel disease (IBD), please know you are NOT alone. We are all here to support you through your journey. More is and will be done to tend…