Skip to main content
Feeling Ostomistic
Wednesday, April 02 2014

There are things that no one tells you about having a stoma before.. well even after you get a stoma.

But don't fret I will tell you 10 things honestly, that they don't tell you about an ileostomy

1) You will no longer have a belly button

You might be thinking this sounds weird no longer having a belly button.. well you do but I would more call it a weird massive hole. When they did my surgery they cut my stomach above my old and tiny belly button and they cut straight through my belly button. When they stapled it up the staples wouldn't hold in that area. But it does have its benefits as I can use the banana wafers to mould into the hole adding more stability and helping to stick the bag down more.

2) Your stoma will make noise at the most inconvene times

Do you remember when you were back in school (surely not that long ago) and you are having a 'private' conversation with a friend. But when it comes to the embarrasing things being said of course the whole class goes dead silent at the same time and your whispers sound like you are yelling- of course everyone in the class hears your conversation.. Well imagine that when things go quiet your stoma starts making loud farting/squirting noises. Expect to be embarrased.

3) Your stoma will look hideous

After my surgery my stoma nurses would comment on how 'beautiful' my stoma was. I don't see it as beautiy it actually makes me feel rather hideous and gross. Although I am grateful it doesn't look like the ones I googled before my surgery that looked like massive stoma penis'. Just it is all bumpy and kind of looks like weird lips. It could be that I know what its job is and that could be why I think of it as ugly? But don't expect your stoma to look pretty.

4) Your output will smell horribly

Like we all know our excretory waste smells, but expect the output to come from your ileostomy to be 10 times worse. I have at times, become immune to the stench, but it doesn't help when your husband complains about the smell wafting through my house. Be prepared to have many cans of nice smelling air refreshner, because you will need it. Maybe a can in your handbag for when you go to public toilets or rest rooms.

I ended up finding a dignity saving solution, read about it here!

5) Take spare supplies with you everywhere you go

If you are a parent you might be familiar with the situation of if you forget your nappy bag and go out in public there could be certain disasters and of course you are left in a bit of a 'shitty situation' with no supplies.. well imagine that with having a stoma. Murphy's Law would have it that if you don't have bag supplies you will soon remember why you should take them everywhere you go! I got a nice bag designed that is big enough to store supplies for at least 5 bag changes, just pop it in my handbag and off I go.

6) Some foods will come out whole

There are foods that there is a reason you should avoid and when they tell you to avoid them this is why. There are a bunch of foods that come out whole like pineapple pieces, corn, peas, nuts, mushrooms, bread crusts (looks and feels like leather), lettuce, celery and tomatoes. It is bizarre watching or feeling things come out whole especially feeling these in your bag. But you should avoid them because these foods don't break down and can cause a blockage- now we don't want that!

7) You will feel like you need to poo but you just can't

There is nothing more frustrating than feeling the need to poo when you just physically can't. Having an ileostomy and bowel removed means it isn't possible for me to do a number 2. But at times I feel like I still have a bowel and need to poo- I call this phantom bowel, but heck it is frustrating!

8) Sometimes your bag is full but it is just air

We all know that frustration when we buy a bag of chips and the bag is mostly just air. Well that is sometimes the same with your bag. There are times where your bag is filled with air and little output. I have had times where my bag feels like it could shoot off like a rocket! Believe it or not air can be pretty hard and heavy.

9) Having a stoma and having sex can be awkward

Having a stoma doesn't effect having sex as those parts obviously are okay. But lets just say your bag will make a 'slap, slap, slap' sound as the bag hits your skin. I guess slap wouldn't be the right word to use but it does make a sound as it hits against your skin.

10) Output kind of looks like toothpaste

When doing a bag change I have noticed that when output comes out of the stoma it looks like toothpaste. Not white or blue but a different colour. But it is the motion that looks like toothpaste being squeezed out of a tube. Although it is gross it does look cool.

There are many more things that no one tells you about for now these are my 10 things I was never told until I experienced them.


Posted by: talya AT 08:56 pm   |  Permalink   |  1 Comment  |  Email
This is the BEST!! Would you mind if I re-posted this on my blog 'bruises you can touch'? I too wish I had had this list in my hands before I had my ileostomy, except the sex bit. There was NO WAY I was having sex with a bag. I'm very blessed that mine was reversed after three months. You are AMAZING! XO
Posted by Carly-Jay Metcalfe on 20/01/2015 - 12:11 PM

Post comment
Email Address

(max 750 characters)
* Required Fields
Note: All comments are subject to approval. Your comment will not appear until it has been approved.

~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

FREE Pattern

With thanks to Harley B for this
FREE pattern. Full tutorial is on
my blog
. Have fun creating!

Pattern ©Harley B Handmade 

 Latest Posts 

Have you heard about our new eZine? CLICK HERE to learn more!


Talya Goding - Feeling Ostomistic  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

Copyright © 2017 Feeling Ostomistic. All Rights Reserved. Logo by Made by KaleWeb Design by SiteFresh