Ayatka Wuikot Tlatuan is the Native American name given to Edgar Flores, a 48-year-old Mexico City native who was born into two tribes. His mother Aztec and father Apache Indian. Just over two years ago, Edgar developed appendicitis and underwent an emergency operation to remove his appendix. What happened next truly shocked him. “I thought the operation had gone smoothly, but within a few days I began to experience severe stomach pain and felt very weak,” he said. As the situation went from bad to worse, Edgar was rushed to the hospital where an ER surgeon discovered that his abdomen was filling with blood. He was hemorrhaging from the inside. Read…
-
- 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…
-
No More Secrets: An enlightening film that reveals the stigma of having an ostomy in India
In a world that’s still struggling with the concept of life-saving ostomy surgery, India comes chock full of psychosocial taboos. In addition to the challenge of costly medical supplies, ostomies are widely viewed as unacceptable in this country and can even become barriers to pursuing careers and relationships. Filmmaker Anisha Vijayan recognized the need to educate the masses about living with an ostomy in India. After months of interviews and countless hours of research and production, her documentary No More Secrets was released earlier this year. She shared with OC the inspiration behind creating the film and how it’s offering encouragement to ostomates in South Asia. Read the full story on…
- 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…
-
Throwback to La Caverna 2006!
Throwback to the summer of 2006 at La Caverna in New York City, just a few months after my IBD diagnosis when I was 22 (you can literally see how pale and anemic I was). My buddy, Sunil, and I were always the ultimate dance partners wil’in out on the dance floor. Some really fun times that I’m glad I had the chance to enjoy back then. Fast forward 12 years along with countless medications and surgeries, here Sunil and I are again at La Caverna. This time with our amazing husbands recreating dance moves from our college days. As friends for many years, we have come a long way…
- acceptance, advocacy, awareness, Colorectal Surgery, coping with flare, Crohn's, living with IBD, Ostomy, patient rights, stigma, Ulcerative Colitis
The Value of Support Groups
In a world where medical professionals have only a few minutes to go over a whole slew of symptoms, medication interactions, and surgical complications, it is impossible to cover the psychosocial aspects of one’s condition(s). These aspects include methods of coping with the emotional roller coaster of living with inflammatory bowel disease (IBD).This is where support groups come into the picture. They fill that gap between doctor-patient interactions and provide real-time support and understanding to patients caught in the rigmarole of hospital visits, health insurance, and invasive testing. But more than this, the true value of support groups lies in empowering patients by fostering lifelong friendships through a deep understanding of…
- 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…
