acceptance,  advocacy,  awareness,  colorectal cancer,  Colorectal Surgery,  Crohn's,  living with IBD,  Ostomy,  patient rights,  stigma,  Ulcerative Colitis

Real Talk about Ostomies

OstomySupplies
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 room. Family and friends might know that I have one but they hesitate to ask or discuss for a variety of reasons, one of which I’m sure is out of respect for my privacy. But the reality is that I’m very open about it after spending years in silence brooding over what people might say or think (“log kya kahenge” in my mother tongue, Hindi). Everyone has a right to decide for themselves if they want to talk about it or not but for me, talking about it makes me feel like me, like I’m valued for who I am and the countless battles I’ve faced in the operating room.

And while every society and every culture has its taboos, I don’t believe that living with an ostomy should be a stigma. Yes, talking about poop isn’t becoming whatsoever but it is a core part of our human existence just like eating, drinking and sleeping are. And just because I poop differently doesn’t mean I’m any different from anyone else. I still have dreams. I still have aspirations. I still love and care for others and I still enjoy similar activities to when I didn’t have an ostomy.

And just as importantly, I’m not alone in this journey. According to the United Ostomy Associations of America (UOAA), nearly one million people in the U.S. alone have an ostomy of some kind. And these folks aren’t all elderly or suffering from some type of cancer. There are many young folk with other conditions, myself included. And many of us live as normal as lives as possible. Below are some photos of things I have done over the years as an ostomate:

1. Go swimming (and yes, we can rock bikinis!)

CapeMayBikini**Shout-out to Ostomy Secrets for the funky bathing suit wrap!

2. Wear a saree and attend weddings
KarthikMamtaWedding

3. Travel to fun places (for me, that means driving a Ferrari around the Eiffel Tower!)
FerrariEiffelTower

4. Go rock-climbing (check with your doctor on this one!!)

RockClimbingRockClimbing2

These photos are proof that we can live full lives with an ostomy even if there might be ups and downs in the process. And truth be told, ostomy surgery saves lives, including mine; it has improved my quality of life a thousand fold. I don’t run to the bathroom constantly nor am I in excruciating pain all the time. I can eat again (many things, not everything) and I can partake in life, love and friendships again. And to me, in these simple aspects of life, lay the greatest blessings of all.

All in all, my ostomy has been nothing short of a blessing. This wound is the place where the light has entered me AND breathed life back into me.

 

I encourage you to ask about my ostomy and challenge you to learn more about how ostomy surgery saves lives. Creating awareness is the frontrunner to acceptance and normalization. 🙂

 

So, own your Crohn’s, own your ostomy, own every wound that allows the light in to heal your soul.

*Also published in Thrive Global: https://www.thriveglobal.com/stories/45863-real-talk-about-ostomies

RumiTheWoundEngland

**Please feel free to subscribe to my blog at the bottom of this page. This way you will receive an email notification when I post to my blog. I would also love to read any comments and feedback you may want to share.

**Follow me on Facebook, Twitter and Instagram: @ownyourcrohns.

My name is Tina and I am from the NYC area. My background is in legal and compliance for financial services. Due to the severity of my Crohn's and multiple extraintestinal manifestations, I have been rendered unable to work. I have served as a case study for a number of renowned doctors and surgeons across the country. I hope that the research done on me helps current and future populations of IBD patients. In a world where the #metoo movement has erupted, I believe it is high time for patients like myself to speak up about the ravaging aspects of chronic illness and disability. The intent of this blog is to give those suffering in silence and in shame a voice that creates greater awareness and acceptance of our daily struggles. I own my Crohn's and my goal is for you to as well!