Listen to About IBD’s Podcast #40: What Are People Going to Think? Shared via Amber Tresca’s podcast and blog, About IBD People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play. Tina Aswani Omprakash, who lives with Crohn’s disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why…
- advocacy, awareness, Colorectal Surgery, Crohn's, Fistulizing Disease, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis, Women's Health
- acceptance, advocacy, awareness, Colorectal Surgery, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
OstomyConnection SPOTLIGHT: Dr. Harikesh Buch works to shatter stigma and improve post-surgery care for ostomates in India.
Dr. Harikesh G. Buch recognized the difficulties faced by homeless people in his home city of Mumbai early in his medical career. A skilled colorectal surgeon, he devoted himself to operating on those unable to pay for his services. Then something happened that changed the course of his life: At the age of 29, he was diagnosed with rectal cancer and underwent colostomy surgery, an operation that would serve as the focus of his volunteer work for many years to come. Dr. Buch recalls that he was “devastated” after the cancer diagnosis and, though it didn’t take him long to become accustomed to living with a stoma, he had initial…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, Fistulizing Disease, living with IBD, Mindfulness, Ostomy, patient rights, Pelvic pain, stigma, Ulcerative Colitis
Real Talk About Fistulae
As I sit here today with a very heavy heart typing out this blog post, I’m not sure if the excruciatingly painful nodule I felt earlier this week is just another health scare or yet another horrifying abscess from a fistula. I hold back tears as I wonder what my next steps are and what I can do to keep spiraling anxiety in check. Now many of you might be wondering what I’m even referring to–abscess? Fistula? What the heck are those and why am I such a mess over them? Well, get ready for some real talk about the most harrowing experience I’ve faced as a Crohn’s patient. According…
- advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
6 Myths About IBD in Minority Patients, Busted
Here are the most common misconceptions surrounding Crohn’s and ulcerative colitis in minority populations. By Brianna Majsiak Inflammatory bowel diseases (IBDs) like Crohn’s and ulcerative colitis (UC) are not easy conditions to talk about. But an even rarer topic of conversation is how minority patients are affected by these chronic and debilitating diseases. Although IBD has predominantly affected whites in the past, a study published in August 2016 in the journal Inflammatory Bowel Disease found an increase in the rate of IBD in minority groups in the United States over the past two decades. “Patients may be reluctant to identify as having ulcerative colitis or Crohn’s disease, so our current numbers may really underrepresent these minority groups,”…
- acceptance, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
Metamorphosis
This past weekend marked 3 years since my series of surgeries at the Mayo Clinic in Minnesota. That trial was my greatest test to date. 3 surgeries back to back to clean out remnants of j-pouch, rectum and anal sphincter that left behind a wound the size of a small football. From daunting saltwater whirlpools, Jackson-Pratt drains, Hydrogen Peroxide flushes into my pelvis, a wound VAC and procedures under sedation every other day to clean out the wound. I was on 6 different painkillers and I was barely hanging on for life. In the months prior, I had drains galore, one from my back down my leg with a bag…
- acceptance, advocacy, awareness, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
Being Brown and Coming Out of the IBD Closet: The Chronic Illness Experience
***Originally published in Brown Girl Magazine on August 2nd, 2018: https://www.browngirlmagazine.com/2018/08/being-brown-coming-out-ibd-closet/*** Just as soon as he landed from India, a good friend called me, half laughing: “Tina, I know exactly what it feels like to be you now! I’ve had diarrhea for the last three weeks after eating at Elco Market in Mumbai! What do I do?” Another time when I was deathly ill, languishing from anemia, malnutrition and weight loss due to 20-30 bloody bowel movements a day, I remember the aunties ridiculing me. They would cackle behind my back as they proclaimed that I did this to myself. “She must have eaten lots of junk food and drank…
- awareness, coping with flares, Crohn's, Independence Day, living with IBD, Ostomy, stigma, Ulcerative Colitis
My Very Own Independence Day
Today, Independence Day 2018, marks 10 years since my colon and rectum were removed in emergency. I was 24 years old, 85 lbs, being fed by a PICC line and the hair on my head was greying from malnutrition. I was dying from IBD my doctors warned me as they urged me to have surgery. I remember that day so clearly when my then boyfriend/now husband, Anand, along with my close friend, Radhika, drove me into the city to have emergency surgery. And when my surgeon came up to me in the emergency room, he expressed that I may be too far-gone, that he was…
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Coming Out of My IBD Closet as a Desi Woman
Every single year the Crohn’s and Colitis Foundation chooses a local Adult Honored Hero who shares his/her story and is honored at the Take Steps Walk in the spring. And every single year I attend the New York City walk, raise awareness and funds to help find treatments and someday a cure for these awful diseases. I bring my friends and my family together along with the Foundation’s Women’s Support Group so they can see that we patients don’t suffer alone, that many folks from all walks of life have been through hell and back at a young age. And every single year, one of my closest girlfriends has tears…