Own Your Crohn’s

Empowering the Chronically Ill & Disabled to Lead Fuller Lives

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...

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...

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...

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...

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...

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~OYC Trailblazers~ Jennylyn’s Ostomy Love Story in the Philippines

Oct 30, 2020

My name is Jennylyn Ajes and I’m 32 years old from Laguna, Phillippines. In 2018, I was diagnosed with stage 2b cervical cancer, which means I had a tumor that had grown beyond the cervix and uterus.[1] During this time, I had undergone chemotherapy, radiation therapy...

Managing Ostomy Care in the Era of Covid-19

Oct 21, 2020

Many of us with chronic illnesses have struggled throughout this pandemic with accessing timely care. One issue I’ve faced is because of my gastroparesis and other functional gastrointestinal conditions (IBS, SIBO etc.) acting up, my weight has been fluctuating a lot...

IFFGD #DDHChat: Nutrition for the Ileostomy – The Dietitian & Patient Perspectives

Oct 18, 2020

The Diet & Digestive Health (#DDHChat) Twitter chat series with the International Foundation for Gastrointestinal Disorders (IFFGD), co-host Tina Aswani Omprakash and lead host dietitian Neha D. Shah, MPH, RD, CNSC, CHES. We are excited to help to educate...

~ OYC Trailblazers ~ Amy & Terrell: Crohn-ically Ever After

Sep 23, 2020

My name is Amy Btiebet Washington, I’m 34 years old and live in Ohio. I was diagnosed with Crohn’s disease when I was 26 (in 2012). Initially, I thought I had a terrible flu, but after a few days of symptoms, I was rushed to the hospital with a 106-degree fever....

MM&M Transform Talks: Prioritizing the Patient Voice

Sep 20, 2020

I recently had the opportunity to work with the MM&M Transform conference on a panel discussion on Prioritizing the Patient Voice in anticipation of their conference on September 29th-30th. A panel of 3 of us patient advocates (Tonya Cherie Hegamin, Type 1...

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