- Posted April 22, 2013 by
This iReport is part of an assignment:
First Person: Your essays
Ostomy - A National Conversation Must Begin
He eventually embraced the freedom his ostomy surgery gave him -- it saved him from 'living a life inside the bathroom,' he said.
Read his full story on CNN
Have an essay to share? Submit it for consideration here.
- zdan, CNN iReport producer
Just over 2 ½ years ago, I was faced with the impending realization that my body and my life would change forever. I would not longer be able to hit the beach and take my shirt of without people staring or getting grossed out. I would no longer be able to sleep with my shirt off because it would mean one less layer of protection. I was afraid to leave my house or even let anyone see my issue; in fact I have hid it from my inquisitive daughter, who is 8 now, for 2 1/2 years. Little did I know I would find myself in the next years trying to cover up noises and smells that I was convinced others always heard and smelled, but rarely did they. My life was going to change forever and I refused to be part of a stigma, a stereotype or go into hiding because of embarrassment.
I have an ostomy, like hundreds of thousands of people just in the United States. I have an ostomy. They call mine a colostomy because it involves my colon. There are many different types of ostomies, but this is not a time to educate you. This is time to report to you how people like us need help. From support groups to local nurses, we need help to educate the nation and build awareness to dispel lies and misunderstandings so that we can create an environment that is welcoming and educated about ostomies and their life saving capabilities.
My path to this crossroads involved being diagnosed with Crohn’s Disease at the age of 17. My life with the disease is best defined by last 6 years. Multiple surgeries, hospitalizations, and a body fighting to stay alive, it was the amazing doctors and nurses at UCLA who saved my life, not once but twice. Instead of living a life in the bathroom, having the ostomy surgery gave me a life I never knew existed. As with any unknown situation you encounter, scared, nervous and cautious instincts quickly filled my mind and my fears looked to become reality.
I had to make a choice between my life in fear or meeting this new life challenge head on. Just one year after my surgery, I was named IBD Icon living with Crohn’s Disease after winning an online writing contest inspiring people who live with these diseases. I have become a patient advocate for the Crohn’s and Colitis Foundation of America (CCFA), the Digestive Disease National Coalition (DDNC) and the United Ostomy Association of America (UOAA), traveling to Washington D.C. to meet with our government leaders to ensure patients voices are heard.
Now I am sharing this story in an effort to convince someone, anyone with a platform that can reach the United States and around the world to take this topic and help educate the general population about ostomies. We need to start a National Conversation about Ostomies. We need this support and recognition so that we can show that having an ostomy means life! We need to reach out to those who do not know about the UOAA (United Ostomy Association of America) and their vital support groups around the country. We need to let people know they are not alone and that Wound Ostomy Care Nurses (WOCN) are present in their local community to help you one on one.
David Rudzin, President of the UOAA, had this to say about the petition and the possibility of a national conversation about ostomies. “It would be huge if someone spoke about us. If would BREAK the stigma and the silence, since NO ONE talks about ostomy surgery. People consider it disfiguring and gross because it involves the bowels and new ways to rid the body of excrement.”
David continues, “The biggest challenge people face is acceptance. That is why no one wants to discuss it. Many are shamed by what they have and do not want others to know. Ostomies, like mastectomies save lives – period !! We, like women with mastectomies, go on to lead fully productive lives. Unfortunately all people focus on is crapping in a pouch”
You see, all of my fears 2 ½ years ago were for nothing. Besides my efforts to raise awareness, I have traveled, gone to the beach (Shirt stays on though), snorkeled, went Ziplining, swam freely in pools and oceans, in fact having the ostomy has done nothing to impeded my way of life. If anything it has improved it. I am no longer living a life inside the bathroom.
My mission now is to convince any medical professional with a nationally syndicated show to start the conversation about ostomies. Maybe then we can reach those people who feel lost and scared, educate the public about greater acceptance and most importantly raise awareness so that no one fears having an ostomy or knowing someone with one. Maybe this article will start that conversation…
By the way, the picture is two ostomy bags formed into a heart. Simple, but inspiring, I only hope more people get to see such a simple picture with such a powerful message.
President John F Kennedy once said, “One person can make a difference, and everyone should try.” This is my attempt to make a difference across our nation and around the globe. We must do all that we can to remove the stigma attached to having an ostomy. This is the first step, now we just have to wait for someone to take it to the next!