Pancaking Tears

Today I want to cry.

I'm 13 years post-surgery for Crohn's disease and I'm not exactly a newbie at the game. I'm fully aware of my body, stoma, and ways to fix just about every single issue that’s popped up before, but the last few days have been a nightmare.

What is ostomy pancaking?

For some reason, I am having massive pancaking issues. Pancaking means that your ostomy bag doesn’t have enough air in it to allow the output (poo) to move down in your bag. My issue is kind of the worst pancaking.

My stoma is flush with my skin and when the output is thick; it causes it to retract and works too hard. The poo then sits around my skin if there’s not enough air and leaks. But not only is my stoma retracting, but its vacuum sealing around my stoma! So every single time I open my ostomy to let air back into it, the air goes out or gets sucked back into my body.

This issue is frustrating and exhausting

I'm constantly back and forth to the toilet at work and up and down at night. Its exhausting and frustrating. Its exhausting being on edge the entire time; sixth sense going off at every single movement, waking in the night and sending me to the toilet all day.

My skin is destroyed by the constant ostomy changes and bleeding. It hurts. I'm drained and emotional.

But I work at a hospital and I normally am extremely lucky that if I have any issues with my stoma, I can run up to see my stomal nurse, but today she is too busy.

I am always grateful for the fact that I essentially have her on call at any time, but I know that not every stomal nurse is like that.

My stomal nurse has clinics on Mondays and Thursdays so if anyone has issues in between those times, unfortunately, they will just have to wait. How awful is that? What if it was a quick question? What if it was something non-clinical? What if it was something that someone didn’t want to go to ED for but probably should, but didn’t have the expertise to make that decision?

Lack of support for people with ostomies

This is something that breaks my heart for ostomates in Australia. The lack of out-of-hours care or support.

But, there is hope. There are amazing ostomates and advocates online, speaking openly and honestly about the good and the bad, so if someone is in need; help is just a fingertip away.

An ostomy is worth it for me

Despite all of this stress, sleepless nights and sore skin, it is still worth it. Having an ostomy means that this is not the usual. This is a rare issue and I still would not have it reversed for all the money in the world.

#stillworthit