This guest blog post was written by Stephanie who is the creator of The Stolen Colon, a blog and website entirely about living with an ostomy.
The first time I saw my stoma
It’s a very strange feeling to wake up after a major surgery and to find something foreign attached to your body. And I knew it was going to be there. (I can’t imagine what it would be like for those who went into emergency surgery and did not know what they were going to wake up with.) But I have to admit, I was pretty good at ignoring the bag that was hanging off of my stomach for a few days, before it was active and when the floor nurses were taking care of emptying it.
But then came the day when the WOC nurses came to see me.
Prior to my surgery, I had been given a lot of information about the surgery and about ostomies and I was also given an ostomy bag to take home. And sure, I held it up to my stomach to see where it would hang, but I didn’t actually stick it onto myself or practice cutting the opening. So when the WOC nurses came to see me, it was all new.
I remember so well that moment they pulled off the bag and there it was: my stoma. The first time I had really seen it, other than a few glances at this red circle inside my new bag. I could see how big it was and how far it stuck out of my stomach and how… scary it was. I think I held my breath for the first minute, but I kept it together while the nurses were there, trying to focus on asking them any questions that I had. My ostomy was pretty active during this first changing, so I just dove right into some of the difficulties with managing one. The WOC nurses were great and showed me how to clean the area and about some of the accessories that would help me take care of it.
But once they had gone, I broke down. I sat there with my husband standing next to me and just cried. It was the first moment of feeling like “what have I done?” and being truly scared of how this would impact the rest of my life. Even as I’m writing this, I feel the tears coming to my eyes because I remember so well that feeling of loss and of helplessness in that moment. But I don’t think the nurses realized exactly how I was feeling. I’ve gotten pretty good at hiding pain and emotions over the years.
And I really did have great nurses all along the way. The nurse I had before my surgery spent a lot of time with me and walked me through the process of picking my stoma spot. I previously thought that my stoma would be low, as in below my pant line. She took the time to explain to me about placement and why it matters. She helped me to understand why the spot we picked was the best spot. And I still think it is.
After the surgery, I had two nurses who came to see me and help me with that first bag change. They came back a day or two later and let me change it so I could get used to doing it, but they were there to help me figure it out and remember all of the steps. They were kind and open to any questions I had about the bag itself and about living with it.
Even after going home, during one of my first bag changes I saw some blood, which of course freaked me out. I called the WOCN department and someone told me that it was entirely normal to see some blood, but if it got worse to come back to see them. She helped alleviate my fears and that was actually the only call I ended up making.
I know I’m not the only one who has felt lost coming out of surgery. And that’s what I want others to understand. When someone goes through this surgery where a part of them is taken away, it’s almost like a death in the family. You immediately feel like your life is changed and there’s no going back to the way it was. A piece of you is forever gone. That’s a hard reality to come to terms with.
And that’s what I think is so important for the people taking care of these individuals to understand. Even if the patient is very prepared for this surgery and even excited about going through with it, nothing can prepare you for what it’s like immediately afterwards, when you’re in a lot of pain and on a lot of medications and there’s this squishy red thing hanging out of your stomach. So understand that they are likely having a difficult time adjusting.
Keep telling these people know they are not alone. There is a great support group out there, both in-person and online. Reinforce that there are lots of bag choices and they don’t have to stare through a clear window at their poop for the rest of their lives if they don’t want to. Keep helping them discover all of the great places to look for tips and tricks on living with an ostomy.
But mostly, just keep taking the time. Take the time to help them feel comfortable and try to understand what they are dealing with. Take the time to talk with them about how placement of the stoma may affect their experience. Take the time to make them feel like they are the most important person in the world. This may be just another day for you, but for us, it’s the day that changes everything.
Stephanie is the creator of The Stolen Colon, a blog and website entirely about living with an ostomy.