What It’s Really Like Living With A Stoma Bag

I had a major operation for Endometriosis at the end of June which led me to have a stoma bag for a year.

I wanted to share the reality of living with a stoma bag with you. Some days can be tough, especially when it causes discomfort and is weighing down on the stoma. But other days, it’s absolutely fine and you forget that it’s there.

Hopefully this will raise awareness of stoma bags and endometriosis and the realities can relate to someone with a stoma bag.

Firstly what is a stoma bag and why do I have it?

Usually an infection or cancer has spread to the surface of the bowel and surgery has included removing a part of the bowel. In my case, my infected endometrioma spread to my bowel, so they had to cut away some of it.

During surgery your body will need a new way to get rid of faeces (poo). In these cases, the surgeon will make an opening through your abdominal wall and bring the end of the bowel through the skin. This is called the creation of an ostomy or stoma (an artificial opening). The faeces (poo) is then collected in a stoma bag which is attached to your abdomen. 

It’s a little weird that you have a bit of intestine sticking out of you!

So, what’s it really like living with a stoma bag?

Say goodbye to jeans

I practically lived in jeans, so this one was really hard for me to deal with. Usually the stoma bag gets in the way when zipping up your jeans, especially my TOPSHOP Joni jeans. Sob, I’ll have to wait for a year before I can wear them once again.

Also in case you were wondering the photographs of me wearing jeans was pre-op.

Baggy clothes are your best friend

You can’t wear tight clothing anymore (with the exception of leggings as they are stretchy), well I suppose you can but you’ll be uncomfortable. Baggy clothes will become your best friend. Say hello to joggers, culottes, oversized tees, stretchy skirts and jumpers.

Emptying the bag is gross

You have to squeeze poo out of your bag, so so gross and sorry if it’s TMI. When I first did it I was sick, but I’ve gotten used to it now – it’s part of my routine. You have to empty it 3-5 times a day too! Also, make sure you have baby wipes to clean the end of the stoma bag, there a life saver!

It makes noises unexpectedly

You’ll be sitting in a quiet room and all of a sudden it makes a noise (a fart)! So embarrassing but I’m slowly getting used to it.

Call it a name

To make the best out of a bad situation, give your stoma bag a name. Mine’s called Barry! You just have to laugh don’t you!

You can’t exercise for 6 months after the op

This is a hard one for me as I was told I can’t exercise for at least six months! I miss doing a bit of cardio and yoga.
Even when I start exercising again I can’t go at a million times per hour, I need to take it slow.

You live in pyjamas

Pyjamas are comfy right? I’ve found myself living in them! Although I do try and make an effort to get dressed these days. But while you’re recovering pyjamas will be your best friend.

Hugging is a bit awkward

I’ve found hugging to be a bit awkward if I’m completely honest. You have this huge bulge touching someone else’s clothing and it puts pressure on the stoma. I have to go at an angle to hug!

I hope you’ve found this post somewhat helpful, whether you’re intrigued to know what a stoma bag is or whether you’re someone living with a stoma bag. In all honesty, it was really hard adjusting to it at the beginning, but now that I’ve gotten used to it it’s not so bad. You just have a different way of living.

I’ve got to have it reversed in a year, so yes it’s only temporary. I know some have to wear a stoma bag for life and honestly I don’t know how I would deal with that.

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12 Comments

  1. August 17, 2020 / 9:02 am

    Your honesty is refreshing. In a way, maybe this lockdown life might have made it easier for you to deal with this, what with wearing pajamas all the time being completely acceptable. 🙂

    Jokes apart, I am sure this must have taken some adjustment to get used to, so kudos to you for that! Hope you are doing well.

    • zoey
      Author
      August 18, 2020 / 1:21 pm

      Thank you so much Shirsha! It definitely has made it easier. Hope you’re well too. x

    • zoey
      Author
      August 18, 2020 / 1:22 pm

      What a strong woman she is! Same, I was continuing to get more and more ill, so without the op, I made not of made it. x

  2. August 18, 2020 / 3:39 pm

    I love your honesty Zoey, I know somebody who has a stoma bag and I can’t imagine what it must be like to have one. I love that you live in pyjamas, that’s basically what we’ve all done during lockdown, a great post lovely x

    Lucy | http://www.lucymary.co.uk

    • zoey
      Author
      August 18, 2020 / 4:36 pm

      Thank you so much lovely :). Ha, yes! I love pjs so much. x

    • zoey
      Author
      August 19, 2020 / 9:22 am

      Thank you Siobhan :). I didn’t know what it was before I had mine! x

    • zoey
      Author
      August 19, 2020 / 11:54 am

      Thank you Mercy :). x

  3. August 19, 2020 / 1:08 pm

    This is a really helpful post. I watch Hannah Witton on YT a lot, so I’ve followed her story and experience with having a stoma bag so I’m familiar with what they are. It’s great that more people with stoma bags are talking about it now though. Obviously poo isn’t a very talked about topic but it’s important that we have an open and honest discussion.

    • zoey
      Author
      August 19, 2020 / 4:35 pm

      Thanks Jenny :). Ooo I’ll check her out. Exactly, it’s nothing to be ashamed of – we all poo at the end of the day. x

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