Ostomy Anxiety: Horror in the Grocery Store?

By Robin Glover

Wallet, cell phone, keys…I’ve always had my essentials when I leave the house. But for the past several years, I’ve added something else to my checklist: ostomy supplies.

When you have an ostomy, you have to be ready for anything. The instant fill, the gas attack, and of course, the leak. Oh, the dreaded leak. It can happen anytime. Or, so it seems. But does it really?

I have this image in my head of catastrophe. There I am, in the middle of the grocery store aisle, my bag has completely fallen off as I stand in a puddle of stool that’s splashed across the floor while output shoots out of me like an over-the-top 80’s horror movie as I stand petrified, children crying out and everyone staring and pointing in disgust.

It always seems to be fear that holds me back more than my ostomy.

I mean, pretty worst-case-scenario stuff. But, it’s hard not to go there. Imagine, worrying about poop (or pee for urostomates) coming out of a hole in your stomach. Like, your front. Where everybody sees. This isn’t some “oopsie” you can pretend never happened. This is a big ol’ brown or yellow stain on the front of your shirt. And nobody’s been drinking coffee.

But is this image even real? I do have a tendency to imagine the worst. Some may even say it’s a talent. My therapist calls it a “cognitive distortion.”

In reality, I’ve had leaks in public. And that’s all they’ve ever been – leaks. Small little leaks that can be covered with tape until I’m able to get to a good spot. In the rare case (two times), it’s been a bigger leak, I was still able to get home and take care of it.

So, it’s fear more than reality. I’m scared of being embarrassed in public due to my ostomy bag. It’s a common fear. Everyone is afraid of being embarrassed. It’s a deep-rooted fear. But my ostomy seems to add a lack of control. I can control things like what I wear and how I act, but I have this stoma with a mind of its own.

It’s like having that “one friend.” Sure, they’re great at home when no one else is around, but take them out in public and you have to constantly worry about what they say. Or, perhaps what they ”blurt out” without warning. (However, unlike a loud friend, you are allowed to use tape to control ostomy pouch leaks).

My ostomy (ileostomy) is permanent. I will have it for life. I need to improve my relationship with it. One way I’m doing that is by being prepared. That’s really all I can do. Before I go somewhere, I check to make sure it’s good. Check the seal. Check the stoma. I now use ostomy pouches with a see-through window just for peace of mind.

I try to carry tape with me everywhere I go. It’s simple athletic tape, but it seals leaks and I can add a lot if need be. That I put in my pocket.

In a smaller bag/sweet fanny pack, I have extra precut ostomy bags, disposable bed pads (brand new, out-of-the-box, they’re very thin and easy to fit into a small bag), ostomy paste, paper towels (I use blue Scott Shop Towels because they’re soft and extra absorbent), and extra trash bags (the ones that come with the pouches). I have everything I need for a quick change. If I’m going somewhere where I’m a little worried I might not be able to find a place to change fast, I carry a backpack with more supplies and a complete change of clothes.

I try to carry tape with me everywhere I go.

More than that, I’ve been working on “decatastrophizing” before I even leave the house. Instead of simply imagining the worst, I think about the realistic possibility of it actually happening. I’ve worn an ostomy pouch for over four years and have never come close to the disaster I envision. It’s basically physically impossible for the bag to simply fall off. Every part of the wafer would have to come loose at once. Plus, I typically wear an ostomy wrap (and just got an ostomy belt). So…not going to happen.

There might be a leak. But I’ve got that handled. I’ve handled it before. It’s not a big deal.

It always seems to be fear that holds me back more than my ostomy. That’s good news, though. Because while I can’t control what comes out of me and when, I can control how I deal with my anxiety about it.

Robin Glover is a writer based in the Houston area. He has a permanent ostomy after being diagnosed with Crohn’s Disease in 2017.