It’s Not: “Hi, I’m Karin and I Have an Ostomy”

I’ll admit it. I enjoy talking about myself. I like telling my story. I like hearing people tell me how strong I am and how much they admire what I’m doing.  Who wouldn’t like that extra push of encouragement, especially on a less than perfect day.  That said – I don’t want to be the one to start the conversation all the time. My life is not a support group and my introduction when I meet people is not “Hi, I’m Karin and I have an ostomy”.  It’s actually more like “Hi, I’m Karin and I’m awesome.”  I don’t walk around looking for strangers to talk to and then plot ways to get them to ask me about my ostomy, but I don’t hide it if the conversation goes in that direction.  I do find that on the second or third interaction I have with someone, there’s usually some part of the conversation where it would be really easy to bring up my ostomy.  At that point, it’s up to me to decide if these are people that I want to let in on my secret.  My favorite interaction that led me to sharing about my ostomy happened a couple weeks ago.

My bag cover in action

My bag cover in action

The profile picture on my Instagram (@ostomyadventure) is a picture of my lower torso and shorts showing off my bag with a newly made bag cover (same images as the one in this blog post).  While working recently, a coworker and I were taking pictures to post on Instagram and she asked what my handle was.  I thought for a second wondering to myself if I really wanted to share with her about my ostomy, then quickly decided that I had no reason to hide it. I also decided I wouldn’t bring it up since I wanted to remain professional and not overshare on the job.  I spelled out my handle for her and once my profile appeared, she asked me if I was wearing a fanny pack in the picture.  Caught totally off-guard, I asked her to repeat herself and looked to see what she was asking about.  She thought my ostomy pouch was a fanny pack.  I chuckled (probably out loud), then explained to her that it was an ostomy pouch to collect my poop because I had a digestive disorder and had had my colon removed.  She gave me sympathy and then said “You don’t have that on you now though.” It was said kind of like a statement and a question.  I told her I did have it attached and that I would have it for the rest of my life.  She still looked skeptical, so I lifted my shirt a little to show her just the top part.  Mind blown. We talked about it a little bit more and then moved on to other topics.

It seems a lot of people are concerned their ostomy will be noticeable and worry others will judge them. I think my experience with this coworker is a perfect example of a positive ostomy awareness interaction.  Not only did she not notice my ostomy before I told her about it – she didn’t believe it was on me AFTER I told her.

Moral of the story: Most people don’t know what an ostomy is so they probably won’t “notice” it anyway, because they won’t even know what they’re noticing.  Black is slimming.  We worry a lot about what others may think, but most of the time they are too busy worrying about their own differences.  Exuding confidence when sharing your story, and acceptance of yourself both go a long way to a positive interaction.

2 Comments on “It’s Not: “Hi, I’m Karin and I Have an Ostomy””

  1. Thank you Karin.I was devastated in the beginning but am getting more comfortable as time goes by.Im going to be 90 in June andalways enjoyed life in the fullest,never dreamed Iwould have this.iliostomy.I am dependent upon my daughter that I live with,I have to lay on the bed to have her take care of applicating the equipment on me, but I take care of cleaning out my bag every 2 hrs with a spray bottle and I have found that tissues clean out the mouth of my bag before I roll up the Velcro. I pinch the Velcro before I pull up my pampers, then dress with tight undergarment to insure safety. I get a shower 2X a week naked, letting my body clean thoroughly before my daughter dresses my stoma. Ive had a colonostomy at first, then a reversible( that didn’t work) then the ilieostomy, my colonostomy is all but healed, but still drained a tiny bit that just needs a gauze bandage at present. I came to live with my daughter to die, but she wont let me,and I admire her tenacity and love,since she herself is a recovering patient from stage 3 cancer of the rectum and has issues every other hr,she calls it “the new norm”.Thank you for sharing

    1. Hi Dorothy, Thank you for sharing your story. Your daughter sounds like a gem, how fortunate you are to have her there to help you (and how lucky she is to have you around too, I bet it goes both ways). I hope you continue to find ways to enjoy life and live your life to the fullest that you can, experimenting with ways to make this new norm as comfortable for you as you can.

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