Having an Ostomy – Not a Bed of Roses


Before I had my ostomy surgery, I reached out to find someone living with an ostomy, in hopes that I could get a better grasp on what it would be like. How would affect my day to day life? I wanted to know how it would feel. I reached out to a woman who had an ostomy and asked her what it was like. She replied simply, “well, it’s not a bed of roses.

This was before the internet. Before endless personal accounts and endless oversharing (like this blog 😉 ) before Google and all it’s horrifying detail and resourceful splendor.

Imagine a life without the vast resources of the Web. A time when the Information Superhighway wasn’t at my fingertips on my smartphone in the Chipoltle lunch line. I actually think it was a blessing for me because I am an image surfer. If I had Googled “images of ostomy bags” it would have been game over for me. I fainted the first time my bag was taken off and my stoma exposed. Just a little too freaky ahead of time. I’m fine now folks, but let me just say that there’s a reason we don’t have an easy view of our exiting excrement. So do yourself a favor and maybe don’t.

Everyone’s body is different and I can assure you that your own will feel and look completely different than what you see on an unnecessary search mission. Baby steps.

Also, beware of the negative posts from people who are in the midst of the challenges, or are experiencing poor outcomes or side effects. Complications are a part of this journey and no two people walk the same path. It can be enlightening, but also, it can be daunting. I try to give an honest account of what I’ve been through and sometimes it’s just really tough. Then there are days where for about 5 seconds I don’t think about my ostomy. The truth is, I can tell you it is always on my mind. That said, it doesn’t mean the awareness is negative, I am quite proud of my progress. You can be too. 

Back to my point about the days before the Internet. It was back when you had to attend support groups to get information about how to function and feel good about yourself with an ostomy. Most of the time in the early stages, you’re not even up for that. Heading out of the house feels overwhelming. I imagined I’d never wear regular clothing again, never feel confident with intimacy, live a restricted life. I imagined wearing overalls and a lot of time at home.

Now my life is limitless and I no longer feel the burden and fear I once did with this very challenging life altering surgery. The truth is,”it’s not a bed of roses”, but the other truth is, it takes time to believe you will feel o.k. again and hearing other people’s stories can really help.

So that’s my motivation – to help people who are facing the challenges of living life with an ostomy feel good about themselves and a future filled with as much adventure as they can imagine.

I just got home from a trip staying with friends. This type of simple visit used to feel very overwhelming for me. I used to dread not being home with my comforts, equipment and routines if something went wrong. What if I have a problem with my appliance and I have to manage and maneuver a change outside of my comfort zone? (it has more often than not)  What if I have to share a bathroom? (usually do) What if I forget something? (I always do) What if there is a natural disaster? (I always plan for it) What if I have a medical emergency? (it’s happened more than once)

“What ifs” can keep you from doing anything – and everything. So I prepare for the worst and expect the best. I’ve had both and it’s just as simple and as complicated as that.

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