When I first got my ostomy, I felt very alone. I felt self-conscious of the smell and sound, and sometimes I longed for my old body.

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Going to college with an ostomy wasn’t any easier. I didn’t know if these things were “okay” to talk about with professors, with friends, or at all. The more I held it in, the more I couldn’t take my situation anymore. These are medical circumstances, not my life … but why did they seem to feel like all my life was about?

When I couldn’t take self-loathing anymore, I decided to make friends with it. I reached out. I inquired about support groups in my area and realized there are many people like me. I realized my ostomy is a beautiful thing and has enabled me to do all the things I’ve been able to accomplish over the years. It is my uniqueness.

If you are reading this, you might not know what an ostomy is. That’s okay. I didn’t know what one was before I had one.

However, you may have a friend with an ostomy — you just might not know it yet. So, with that in mind, I’d like to share some things about ostomies that will hopefully make these kinds of things easier to talk about. We all have quirks — what’s the point of holding it in?

These are 10 things I would have liked to tell myself when I first had an ostomy  — 10 things I didn’t know but eventually learned, which I am so grateful for today.

1. What it was.

I had no idea what an ostomy was before I had one. But I have a confession: I didn’t realize exactly what it was until a year later! Coming out of multiple surgeries, I had so many bags and new anatomical surprises to think about that a little pink bulge on my belly seemed to be the least of my problems!

I’ve learned things in the past 10 years that have shocked, scared and relieved me, such as: You can’t actually feel your stoma – no nerve endings! I’ve had three ostomies and four ileostomies over the years. I didn’t realize how different they were. Once I learned about the differences and functions of each, I was better able to take care of them.


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