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What It's Really Like to Live With a Stoma Bag

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I don’t often write about the ins and outs of living with a stoma but today I’m making an exception.

The life of an ostomate is, in general, a mystery to the general population. Let’s face it, you don’t generally think about having a stoma or research what it might be like to have one unless that particular path is a possibility or if someone close to you has one.


I certainly didn’t give much thought to what it might be like to have a stoma when I had a functioning bowel. Any thought I might have had was one of “Yuk, I wouldn’t want one.” My reaction was, of course, based on my own ignorance and lack of understanding.

One of the concerns I had when facing the prospect of life with a stoma was whether it would smell. Whether I would smell. It was my biggest fear. Again, it was a fear based on a lack of knowledge.

Stoma bags have an in-built filter, so when an ostomate passes gas, the smell is filtered and contained. In essence there is no smell, unlike someone without a stoma who accidentally passes gas in public.

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Stoma bags are amazing, really. There are all kinds to choose from. I have a colostomy which means my output is pretty normal as I still have most of my large intestine. My stoma is on the left side of my abdomen and is a cute red little button. Who knew our intestines were a lovely red color and so clean?!

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So, back to my bag. I have a one-piece bag that literally just sticks onto my skin around my stoma. So easy to put on and dispose of and change. The stoma bag is the same color as my skin and is so comfortable. I’m at the stage where I often forget I even have a stoma. To get to that point takes a while, but I’m nearly four years post my colostomy surgery.

Today, however, I was very aware I had a stoma.

I had to go for blood tests, but I was not feeling wonderful and my stoma was being quite active. I didn’t have a full bag, but it was full enough that I knew I didn’t want to be out for too long, so I was hoping to be seen very quickly.

My husband and I entered the pathology rooms and I was hit by a smell. “Oh no,” I thought, “I’ve had a leak!” Leaks can happen, but I quickly put my hand on my abdomen and could tell I hadn’t. You learn the signs, and everything felt in place and OK. My next fear was the bag had a hole or tear in it. That has happened before, only twice, but once was enough. I wouldn’t be able to tell until I got home or found a toilet.

I use two crutches for mobility and my legs were playing up so I didn’t have the strength to try and find a toilet. No one else was in the waiting room apart from the phlebotomist, so we just took a seat.

The smell dissipated and I relaxed a little.

We were soon called into the collection room. As my hubby and I entered with the phlebotomist, the smell hit again and flooded the small room. My heart sank. It was the smell of a baby’s diaper in desperate need of a change. I just wanted to go home or at least have the floor swallow me up.

I looked at my husband, trying to speak to him with my eyes to check if he could smell anything. I probably looked strange, so not the best idea under the already awkward circumstances.

The smell quickly dissipated again, which was slightly odd, as usually if a bag leaks the smell is there until you sort the issue out.

My blood was quickly taken and I thanked the lady, grabbed my crutches and walked as fast as possible out into the street.

I asked my husband immediately: Did I smell? He said no but confirmed my fear that he definitely could smell something when we were in the rooms. We got into the car and I checked my bag (thank goodness for tinted windows). My bag was perfect. No smell, no leak!

We looked at each other and burst out laughing.

It wasn’t me!

It was the lady in the rooms. We realized the smell in the collection room was worse when she bent over to get something out of the cupboard.

Hmm…perhaps it was something she had for lunch.

While I felt slightly bad for laughing, I can’t tell you how relieved I was it wasn’t me.

Just goes to show that even though I am comfortable with my stoma, even I was pointing the finger at me first.

So, moral of the story…if you are in a room with someone who you know has a stoma and you smell something odd, please don’t assume it’s them. In all likelihood, their stoma bag is protecting any smells. In all likelihood, it is someone else.

I’m just glad it wasn’t me!

You can read more about Sam’s Colostomy story at My Stoma Story.

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Thinkstock photo via PapaBear.

Originally published: June 21, 2017
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