I recently casually mentioned my ostomy publicly for the first time on the Dr. Wahl show. I’ve wanted to do it for a long time, because every time I hear of someone feeling devastated about the prospect of needing an ostomy my heart breaks.
And there’s the rub… the stigma is real and the lack of public understanding about ostomies always made me afraid to talk about it… Which is why I have to talk about it. You know what I’m like, dear reader!
The truth is – You can hide your ostomy. No one ever needs to know you have one. You can keep it private. I was told this, and it is true. I can wear a bathing suit and swim in the ocean all day and no one would ever know a thing. I go to work all day and deal with people and no one would ever know.
There is an old-fashioned way of describing ostomies that people use here in Newfoundland and Labrador: “They have a bag on their side.” Boy, are people afraid of having a bag on their side. Which is somewhat incorrect, by the way, because the stoma is on the side of the abdomen, not the side of the body.
There are a number of types of ostomies. I have a colostomy. I actually don’t wear a bag at all, although I did at first. I wore a small bag that was about 4 inches long and tucked snug against my stomach under my clothes. Now, I am able to manage my colostomy through irrigation so I wear a patch. It is basically like a small bandage that adheres to my skin.
The reason I was invited onto the Dr. Wahl Show was because I have been involved in cancer patient advocacy. I have written about and talked about mental health needs, hormone therapy for women, screening and awareness, among other things. It was a relief to finally mention my ostomy. Like my husband told me a couple of years ago when I was still adjusting:
Honey, just own it.
Wise Asher
The other support person I have to mention is my ET nurse. She is a trained Enterostomal Therapist, which means she is a specialist in ostomy care. She was there for me before my surgery and for months after. She taught me everything I needed to know. She even came to my house to work with me. She is the coach and lifeline for everyone who requires an ostomy in Central Newfoundland, and she is the best!
My ostomy saved my life, and someday an ostomy might save the life of someone you know. Please tell them an ostomy is mentionable and managable.
Anything that’s human is mentionable, and anything that is mentionable can be more manageable.
Fred Rogers
You can hide your ostomy bag but you don’t have to…
My ostomy doesn’t stop me from doing anything I want to do 🙂
you are incredibly brave to discuss this topic which many people wonder about, me included. It
is such an off-limits topic that I think you should expand on it and send it to a newspaper like the NYT so more people understand it. PS You still look great in a bathing suit!
Thank-you so much, Bethanie! I would love to publish a piece about it, anything to break down the stigma that surrounds this necessary, life-saving medical intervention! I hope you are well 🙂
Excellent column
Sent from my iPhone
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Thanks so much, Dad!! I am glad you are reading it! Love you ❤️
❤️❤️❤️
You are amazing! Love this so so much!
Thank you so much, Nicole, for everything you do for me and all of your patients ❤️❤️!! You are a true hero and I will always be grateful our paths crossed when I needed this guidance 🤩
So very kind of you Janine. Your writing is lovely and you are great on the radio too! Love that you are sharing your journey! Always here! 💕
Thank you for sharing! There really is a stigma surrounding ostomies. A few years back after my mom’s bowel surgery they were not able to reconnect it so an ostomy was the only alternative. Before she went into the surgery she literally begged the doctor to do all he could not to have one. She spent many hours in surgery but alas he could not grant her wish. I was there when he told her that she had one and it would be permanent. She was devastated and thought her life was over. That was almost 4 years ago. She’s still going strong and doing EVERYTHING she did prior to surgery. Did I mention she’s in her late 70’s? It took some getting used to but now she’s made peace with it and she takes care of it like it’s always been there.
Andrea, thanks so much for sharing your mom’s experience here! I am so happy she was able to adjust to her ostomy and is living life to the fullest!! It really is a manageable medical intervention and the more we talk about it, the easier it becomes for those who face it! 💗
I wanted to thank you for this excellent read!! I definitely loved every little bit of it. I have got you book-marked to look at new stuff you postÖ
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