By Carina Diaz
In May of 2021, I went to the ER for what felt like the millionth time. I had been struggling with cysts and abscesses forming in my vagina for the past three years and this time was no different. Or so I thought.
I had already been to the ER earlier that week and was seen by a male doctor who, in hindsight, wanted to quickly drain the cyst and get it over with to move on to the next patient. I told him that I wanted a CT scan, but he said it wasn’t necessary. For my second ER trip of the week, I was seen by a female doctor. I made a comment about this being my eighteenth time having to do this in the last three years and with a look of concern on her face, she said, “That’s not normal. Let’s do a CT scan.” To which I said, “Brilliant idea.”
The part that I hate most about going to the emergency room is having to wait. And wait. A nurse takes your vitals. Then you have to wait. Someone comes to get your insurance information. More waiting. You tell the doctor what’s wrong. Even more waiting. The doctor comes back with a nurse. They do what they need to do. And you wait some more for either discharge paper work or to be admitted.
After getting a scan, it was decided that I would need incision and drainage surgery. But guess what? My gynecologist only does surgery at one hospital and it wasn’t the one I was currently at. So I had the joy of, you guessed it, waiting for an ambulance to come to transport me to another location. Watching the night sky through the back windows wouldn’t have been so bad if I wasn’t strapped to an uncomfortable bed made of plastic.
This was the second time I’ve had to get incision and drainage surgery, so it wasn’t a new experience to me. What was new was being presented the choice of potentially having to get ileostomy surgery. It would give my colon a break and let the fistula heal (a surprise that was discovered during the surgery).
To be honest, getting an ostomy bag was the worst-case scenario in my head as someone with Crohn’s Disease. It sounded scary and uncomfortable. What clothes could I wear? Would people see it? Would I smell? Am I going to wake up in pain after the surgery? When the hell will I be allowed to eat?! I don’t want a poop bag strapped to me. All of these thoughts were floating in my head while three doctors stood in front of me explaining the process. The good thing was that it would be temporary.
I let a doctor use a robot to cut me open and pull a bit of my intestine out. I didn’t wake up in pain, but I was scared to look at my body. The rest of the week was a blur of learning how to empty it, clean it, and how to live with this new change.
At the time of writing this, I’ve had an ostomy bag for ten months. While it has greatly improved my quality of life and lowered the severity of my symptoms, it has definitely been challenging. I have three different skin conditions, so my torso really hates having something taped to it. I have yet to find a bag that doesn’t irritate my skin. During my second month after surgery, I kept getting blowouts at night and barely got any sleep. It was painful and itchy. My ostomy nurse likes to describe me as “a real head scratcher.”
Having IBD makes me think a lot about the duality of life. I’m grateful that this surgery was an option for me because it has helped in many ways, but I still have to make sacrifices. I still have to deal with discomfort, and I’ve had to relearn my body yet again. That cycle will continue when I eventually (hopefully) get reversal surgery at some point.
Some people have positive experiences with ostomies and say that it has given them their life back. If that’s not the case for you and you’re also struggling with having an ostomy, try to remind yourself that you’re doing your best. Take it one day at a time and cry when you feel the tears forming. I recommend watching your favorite show if you’ve had a hard time changing your bag. Those stomas can be so unpredictable.