Last Wednesday night I was honored to moderate a panel discussing IBD at the 101 level with two physicians who specialize in the treatment of inflammatory bowel disease: Dr. Jami Kinnucan of Michigan Medicine and Dr. Rajeev Jain of Texas Digestive Disease Consultants. IBD 101 is meant to be a precursor to IBD INSIDER, the more intermediate level discussion that will take place on January 25th, 2020 at Crohn’s & Colitis Congress, a premier conference sponsored by the Crohn’s & Colitis Foundation and American Gastroenterological Association (AGA) in Austin, TX. In our discussion, we covered topics ranging from what Crohn’s Disease and ulcerative colitis are to the treatment of these…
-
- Ableism, acceptance, advocacy, awareness, Crohn's, living with IBD, Minority Health, Ostomy, stigma, Ulcerative Colitis
What Will People Think? ~A Short Documentary by Chealynn Feaster
This past fall I had the opportunity to meet and film with filmmaker Chealynn Feaster, a fellow ostomate and Crohn’s Disease warrior. Together we pieced together a short documentary called What Will People Think? (Hindi/Urdu: Log Kya Kahenge?) which shines light on my advocacy work and the inspirations behind it from my father and aunt’s illnesses and subsequent deaths to my own constant battle with Crohn’s Disease and multiple colorectal surgeries. One of the aspects of living with inflammatory bowel disease (IBD) that I advocate for most is the nuances that racial and ethnic minorities face. Having a bowel disease and living with an ostomy, no matter how life-saving, often…
- advocacy, awareness, Biosimilars, Canadian healthcare, coping with flares, Crohn's, fistula, Forced Medical Switching, living with IBD, Lobbying, patient rights, Ulcerative Colitis, Women's Health
Sophia’s Chronic Illness Journey: Forced Switching to Biosimilars in Canada
By Sophia Ali Khan From Diagnosis to Remission I was diagnosed with Crohn’s Disease at the tender age of seven in Calgary, Alberta in Canada. This was after I was born with congenital neutropenia, a condition that involves the deficiency of neutrophils, a type of white blood cell that plays a key role in fighting infection and inflammation. After many months of debilitating stomach pains and unexplained weight loss, I was rushed into the OR for an appendectomy, but upon examination, the doctors found Crohn’s Disease. Being of Pakistani origin, Crohn’s was unheard of so naturally my family and I had to navigate our way through a sea of diagnoses,…
- acceptance, advocacy, awareness, Clinical Trials, Crohn's, living with IBD, Ostomy, Ulcerative Colitis
How a clinical trial helped this Crohn’s advocate finally reach remission
Originally published on November 22, 2019 on Antidote’s website Like many people living with Crohn’s disease, Tina Aswani Omprakash had trouble finding a treatment that would send her symptoms into remission. After trying many of the common Crohn’s treatments on the market, she still wasn’t getting a response. She also had developed fistulas: abnormal connections between organs in the digestive tract, typically between one part of the intestines and another. That’s when her doctor suggested she join a clinical trial… To read more of this story, please visit Antidote’s website: https://www.antidote.me/blog/how-a-clinical-trial-helped-this-crohns-advocate-finally-reach-remission As always, I welcome all your thoughts, comments and feedback! Love hearing from you all! ~~LOVE,…
- acceptance, advocacy, awareness, Body Positivity, Colorectal Surgery, Crohn's, Dating & Relationships, Gratitude, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis
Ostomy Awareness Day: Empowering Ostomates to Live Fuller Lives
Last month, Amber Wallace Ogle of Ostomy Diaries & I got together with Hollister, Inc. (a major ostomy manufacturer) to bring our audiences a discussion on how to lead a fuller life with an ostomy. Our aim was to engage viewers from around the world who may be struggling with self-image, body image, family life and relationships with an ostomy. And it was a grand success! We reached nearly 1,500 viewers from over 46 countries and from the feedback received, it was a video that helped many. Here’s to many more conversations like this where we can help ostomates feel less like outcasts and more like the beautiful human beings…
-
The Healio Disruptive Innovator Award: Moving the Needle on IBD Care
A few weeks ago on Diwali Day, I won the Healio Disruptive Innovator Award for the Patient Voice category at the American College of Gastroenterology’s conference in San Antonio, Texas! This award is presented to the patient advocate who helps move the needle on GI care most in a particular year and whose voice resonates most with the 200 world-renowned doctors part of Healio Gastroenterology. Even though I wasn’t able to travel to Texas for the award ceremony, I’m deeply honored and humbled to be recognized with such a prestigious award. It has been a very long and arduous journey and being able to advocate and help destigmatize inflammatory bowel…
- Ableism, acceptance, advocacy, awareness, Body Positivity, colorectal cancer, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, Ostomy Awareness Day, Self-image, stigma, Ulcerative Colitis
The Beauty of Ostomates Worldwide
Happy #OstomyOctober, everyone! After doing a piece about things we can do with an ostomy last year, it only seemed appropriate this year to highlight how diverse the population living with all types of ostomies is. Just to backtrack, many of you might be wondering what an ostomy is. According to the United Ostomy Associations of America (UOAA), “ostomy surgery is a life-saving procedure that allows bodily waste to pass through a surgically created stoma on the abdomen into a prosthetic known as a ‘pouch’ or ‘ostomy bag’ on the outside of the body.” There are generally three types of ostomies: (1) colostomy, (2) ileostomy and (3) urostomy. A colostomy takes a resected…
- 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…
- 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…
- acceptance, advocacy, awareness, Colorectal Surgery, Crohn's, living with IBD, Mental Health, Minority Health, Ostomy, Ulcerative Colitis, Women's Health
~OYC Trailblazers~ Mollie’s Story: Living la Vida Latina with Ulcerative Colitis & an Ostomy
By Mollie Tinnin My journey with chronic illness began my senior year of high school after a violent assault left me hospitalized with life-threatening injuries. At the time, I received eight units of blood and during the treatment of the injuries I had sustained, the physicians discovered I had ulcers in my intestines. The treatment of both these injuries and my ulcerative colitis have been complicated in that they both are intertwined and affect each other even until this day. I’ve tried several medications, such as Mesalamine, but with the scar tissue and the ulcers both being in the same location, medication has not been very effective for me. Surgically,…
