Living with an ileostomy bag


*If the title didn’t give it away, be warned – herein lies more poop talk.

I imagine that for people whose lives don’t revolve around poop, that the repeated talk of poop by those of us whose life does revolve around poop can seem kind of unnecessary. But some life experiences not only change your perspective on poop but also make it one of the most consuming aspects of your life.

I tossed up whether to write this or not because I know a lot of people will find it confronting. But I’ve also received a few messages from people going through what I’ve gone through who are glad of hearing a familiar story. It is scary when literally no one you know can understand aspects of what you are going through. (It’s good too though because it means they’re not sick, so yay for that!)

SO BE WARNED – at the bottom of this post there may be a picture of my stoma and a picture of my ileostomy bag. Either leave now or scroll slowly if you’re not interested in seeing the pictures! (I’m trying to get a pic of the stoma without the bloody thing working!)

When researching my operation, the aspect of it that scared me the most was potentially losing my belly button (strange but true). A close second was the potential of having a stoma. If you’re not sure what it is, a stoma is when part of either your large intestine (colostomy) or small intestine (ileostomy) is brought through an opening in your tummy to create a new waste disposal shute!

No matter how much you read about it, you can’t truly understand how strange it will be until nurses are changing your bag while you’re semi-conscious in your hospital bed – an adult version of a nappy change.

I had Googled stomas before my operation and to be honest, it freaked me out this little round, pink protrusion from the tummy. I closed the tab pretty quickly. So I was completely surprised when I looked down at my own stomach and mine didn’t resemble any of the pictures I had seen. It’s in the crease of my belly and doesn’t really protrude much. It was odd to feel pleasantly surprised by this.

For some, the thought of having an ostomy bag is too much to bear. For one thing – there are many things that can go wrong. Last Friday night for example after falling asleep on the couch I woke at 4am and had to empty my bag. I was too tired, it was too full, and I perhaps missed the toilet bowl. I spent the next 40 minutes cleaning poop off the floor, off the toilet and then off myself. Thankfully, it’s only happened once.

There was also the time it leaked. Where the sticky part came away from my skin resulting not only in a little mess but a huge meltdown from me after it happened twice in a day. I felt incompetent and exhausted. It is unfortunately a reality of this situation though. I’ve read of others who have spent months trying to sort out leakage problems so one in two months I can’t really complain about.

People also often worry about it smelling while they wear it or the bag falling off. Mine doesn’t tend to smell. Trust me – I was completely paranoid about it and would ask my girlfriend all the time “Can you smell that?” She looked at me like I was crazy. (I wouldn’t advise going to the bathroom after me though – sheesh@) And I’ve only had the bag leak once. Even in our disgustingly hot Australian summer, it’s holding well!

There are a number of conditions that can lead to people needing a stoma. Cancer, diverticulitis, Crohn’s Disease, Ulcerative Colitis. If you’re in a position where you may have to consider a stoma get online and read others’ experiences. Especially for Crohn’s and Ulcerative Colitis, I’ve read plenty of stories from people who feel they got their life back. With respect to intestinal issues, I haven’t suffered nearly as much pain or discomfort as people with other conditions, but I know my stoma is worth it to not have the gas pains I had before my surgery.

For the most part I forget I have a stoma. I shower in the morning, change my bag and get on with the rest of the day. I empty it before leaving the house and I try not to drink soft drink when I’m out because otherwise it blows up like a helium balloon!!

Word of warning if you have kids – prepare to be embarrassed in public. Ours loves talking about Mama’s poo bag. And when it’s inflated from too much air he tends to yell “Wow – that’s a big poo!” Kids!

If you’re after information on having a stoma or on the supplies needed, the link below provides information on the ostomy associations in your state as well as links to supplier websites and support groups.


Inflated before the great poop explosion of Jan ’17.


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