“Is your ostomy permanent?”
I’ve come across that question many times since having my ostomy, but it seems that when I answer that question (with a “yes”, obviously), I get told how sorry people are for me. This needs to stop! I feel incredibly fortunate to have my ostomy, and I don’t feel sorry for having one.
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My message is directed towards anyone who knows an ostomate, but more importantly to doctors and nurses, who should know just how important an ostomy is to us!
I’ve had many amazing home care nurses during my recovery from both ostomy surgery and my proctectomy, but when some of them said how sorry they were for me having a permanent ostomy, it made me wonder if I shouldn’t feel so grateful.
Maybe the “norm” is to feel sorry for ourselves, or sour at the fact that we’re now living with a bag, but what good would that do any of us? Perhaps I can attribute my positive attitude to Posttraumatic Growth, or to the fact that so many ostomates are living life to the max and don’t let their ostomy limit their enjoyment of life one bit; many people see their ostomy as a second chance to live!
If you need to say that you’re sorry for something, feel sorry about the situation that leads to someone’s ostomy; maybe it’s having Crohn’s Disease or Ulcerative Colitis, being diagnosed with colon cancer or having been in a terrible accident. Offer them support if they’re struggling, but don’t feel sorry for the operation that likely saved their lives or greatly improved their quality of life!
Not only am I fine with having an ostomy, the reaction “oh, I’m sorry to hear that” makes people feel uncomfortable as if there’s something to be ashamed of living with a permanent ostomy. So please, before you say that you’re sorry, consider how that person might feel by your reaction.
Question: How does it make you feel when someone says they’re sorry that you have an ostomy?
Eric , there are some people whom I’ve met that feel having a permanent ostomy is the worst thing that can happen to them. Most patients I visit need one because they have cancer, but about 70% are able to have them reversed at a later time. I think that most people are vain to some extent and they don’t understand the benefits of having one. I made a video last year to help demystify ostomies for those who might have to have one. These days there are so many products that can hide the ostomy, including “girlie” undies made by Victoria Secret.
For me, my ostomy made my quality of life better. I was given the choice of an ostomy or adult diapers for the rest of my life. For me it was a no brainer. I am happy to be alive and if that includes wearing a permanent ostomy I am thrilled. Now ask me about my ostomy farts! That’s a whole subject in itself. I have a wicked sense of humor and raised a boy who probably is the gassiest person on the planet, so when my bag goes off and it seems to in crowded rooms I laugh it off… and if needed educate others about colon cancer, the importance of colonoscopies and of course my buddy “Whoopie.”
I have not experienced anyone saying they felt sorry for me having a bag but I get plenty of stares when I’m out in public with my walker…I figure they never saw a Goddess with a walker ;)
Having lived through cancer, wearing an ostomy and using a walker taught me to sto,p giving a shit about what anyone thinks about me. I am one badass cancer survivor and I remind myself of that if I start to get frustrated.
Thanks for your inspiring, educational videos and willingness to share your story
I always say oh please don’t be sorry, if I hadn’t had my ileostomy I wouldn’t be here . It does frustrate me when people comment like that ,but I guess there not very knowledgable about it. So if I can I try and educate people. I don’t go around telling people but if they ask then I’m honest. ..
Education is key! I wish nurses knew how we feel about this!