This IBD Awareness Week, the Crohn’s & Colitis Foundation shared a video of me discussing one aspect of being South Asian: maintaining privacy. Privacy is a major concern when it comes to South Asian Americans sharing their personal IBD journeys. There is a phrase in Hindi & Urdu called “Log Kya Kahenge?” It is a cultural phenomenon that expresses deep concern for how society will view patients and their families once their stories are public. But the reality is that suffering in silence can lead to deep-rooted shame while deterring self-care and self-advocacy, two very important aspects to our medical care. In this video, I talk about my experiences as a…
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Caregivers: The Greatest Blessing of All
As we wrap up Crohn’s & Colitis Awareness Week, I reflect on the greatest blessing of all in my IBD journey: my caregivers, my dear mother and husband. From the constant rides into the city for doctors’ visits to packing wounds and changing PICC line dressings while helping me walk and shower after surgery, Mom, you picked me up when I was at my lowest points in life. From driving me to Cleveland Clinic and flying me to Mayo Clinic for surgery while spending countless sleepless nights in the hospital, Anand, you stood by my side when society told you you could have done better. Many of our IBD journeys…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
IBD Awareness Week Line-Up: Diversity, Mental Health & More!
Today kicks off Crohn’s & Colitis Awareness Week! The lead-up to this week has included my (very exciting!) feature on the Crohn’s & Colitis Foundation’s website for general IBD awareness and for racial and ethnic minorities. I also had the honor of sharing my IBD story with reporters from various media outlets who attended the Foundation’s briefing this past week. In discussing my story, I talked about the cultural impact of being a minority woman with Crohn’s Disease and a permanent ostomy. Being a different race, gender, sexuality and/or ethnicity adds a whole other layer of complexity to the IBD experience. I really wanted to bring to light how complicated our…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, patient rights, Ulcerative Colitis
Allowing Acceptance In
Thanksgiving season is upon us, dearests! As we prepare to celebrate life, love and laughter with our families and friends, it may be tough to avoid the elephant in the room: our chronic illnesses and disabilities. As hard as this may be, we can get through the holidays together by advocating for better quality of life and allowing acceptance of our conditions in! Our bodies may not be in perfect condition but let’s be thankful today and always for the moments of health, peace and joy that shine their way into our lives. ‘Tis the season to allow acceptance to pervade our lives to cultivate more love and better self-care!…
- acceptance, advocacy, awareness, coping with flares, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
My Feature During Crohn’s & Colitis Awareness Week
Pleased to announce that this year I have the honor of representing my fellow IBD warriors for Awareness Week (12/1-12/7) nationally on the Crohn’s and Colitis Foundation’s website! REPRESENT!! Inflammatory bowel disease (IBD) comes in all shapes, sizes, colors, ages, genders and sexual orientations. IBD affects 1.6 million people and counting in the U.S. alone and over 5 million worldwide. This chronic, autoimmune and often invisible condition is growing by leaps and bounds unfortunately every single year. It wreaks havoc on our guts, bodies and mental health. It behooves us to recognize and de-stigmatize IBD and chronic illness in general so that folks like us can live fuller, happier lives. I…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, Ostomy, Pelvic pain, stigma, Ulcerative Colitis
My Pelvic Pain Story
…Via The Women’s Pelvic Pain Podcast… My first podcast goes live! Check out my pelvic pain story available now in iTunes. Listen to Episode 14: My Pelvic Pain Story here: https://itunes.apple.com/us/podcast/episode-14-my-pelvic-pain-story-with-tina-of-own-your-crohns/id1379107302?i=1000422358419&mt=2 Something many folks might not realize about having IBD and IBD-related surgery is that it often comes with chronic pelvic pain and pelvic floor dysfunction, which makes walking, sitting and emptying the bladder very difficult during pelvic flare-ups. And periods feel far more painful as does intercourse. It is hard enough to talk about living with a bowel condition and/or an ostomy. Add pelvic pain to the mix and the stigma magnifies even further. My intent is to shatter…
- advocacy, awareness, Crohn's, Disease Prevention, Influenza, living with IBD, Ulcerative Colitis, Vaccinations
Don’t Forget Your Flu Shot This Fall
As I got up from dinner to use the bathroom, the room began to spin. Thinking I was just a bit dizzy, I continued on my way to the bathroom. I didn’t know it then, but the next five months of my life would be like a carousel as I stumbled my way through labyrinthitis — an inner ear infection — and a symptom that can occur along with the influenza virus. This happened nearly two years ago, but the images are still vivid in my mind. I had been dizzy for over 72 hours when I decided to go to the hospital. It was December, and the streets were festooned with Christmas…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, stigma, Ulcerative Colitis
All of these exceptional women have won awards this year for their public advocacy efforts
Winner, winner! Inspirational role models we look up to. Ostomy awareness involves advocacy, and to be effective in advocating for change we need influencers. Advocacy can be standing up and speaking out for a cause, voicing concerns about misconceptions, or connecting with individuals and organizations who need support. All of these exceptional women have won awards this year for their public advocacy efforts. Amber Wallace won a WEGO Health Award. View image on Twitter WEGO Health@wegohealth Congratulations to 2018 #WEGOHealthAwards Best Kept Secret winner Amber Wallace! @ostomydiaries Check out all the finalist & winner videos from this year’s celebration here: https://wegoh.co/2OWMWdb 4:50 PM – Oct 8, 2018 4 See WEGO Health’s other…
- acceptance, advocacy, awareness, colorectal cancer, Colorectal Surgery, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
Real Talk about Ostomies
On the eve of World Ostomy Day, I write this blog post in hopes of debunking many of the myths surrounding living with an ostomy. So here goes nothing… I always get super excited when friends and family muster up the courage to ask about my ostomy. It makes me feel so connected to them and like I’m being recognized for all of me and not just the healthy-looking parts of me. I feel their concern, their love and most of all, their interest in how I live my life, chronic illness and disabilities abound. See, the thing is, living with an ostomy is often the proverbial elephant in the…
- advocacy, awareness, Colorectal Surgery, coping with flares, Crohn's, living with IBD, patient rights, Ulcerative Colitis
Sepsis Is a Severe, Life-threatening Complication for IBD Patients
It’s Sepsis Awareness Month, so I’m discussing what sepsis is and how it is often a complication of inflammatory bowel disease (IBD) and colorectal surgery. According to the World Health Organization (WHO), “sepsis arises when the body’s response to an infection injures its own tissues and organs, potentially leading to death or significant morbidity.” WHO statistics show that more than 30 million people contract sepsis each year, and 6 million die from it. But aside from all these scientific terms and statistics, what is sepsis? To me, sepsis looked and felt like the following: It all started with a 103-degree fever, a high pulse well into the 130s, low blood pressure hovering around…
