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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
Wednesday, April 02 2014

There are times where more often than not, that I get overwhelmed when changing my bag and afterwards get really clammy and feel like I might pass out. It isn't so much to do with the stench but more it just can get too much to deal with and gets a bit emotional.

But I have been trying a new tactic the last couple of months and after just finishing a bag change I feel more at ease.

I will share my new tactic with you.

I step out of the shower and dry myself, then I go and sit on the toilet (Not that I go to the toilet but more its just personally more comfortable to change my bag seated).

Before I start my bag change prep I turn my iphone music on shuffle and have music playing.

I have always been a person who from a very young age has loved music and can relate songs to feelings or times in my life but more I grew up listening to music and it is something I love, especially belting out a tune or two.

So after I turn my music on I get myself set up which involves:
*Filling a small plastic container with fresh water
*Getting an empty plastic bag (without holes) and tucking it under my stomach and then tucking my bag into it. Trust me it makes things so much easier and less messy!
*I then begin to cut the supplies needed for the bag change, so cutting my bag to size (I am lucky that my bag size hasn't changed size since June 2013) and then I cut the chux cleaning wipes into thin usable sized pieces and put in the water container.
*I set out beside me my stoma adhesive remover wipes, skin barrier wipes, mouldable ring, stoma adhesive powder, my bag and also banana wafers.

I then start removing my bag using the adhesive removing wipes and without realising I am wiping to the beat of the music and whistling the tune.

So next thing you know my bag is removed, My stoma is clean and my stoma is prepped for a new bag.

Usually takes around 3 full length songs all up to complete, but I don't notice how long it has taken or consciously aware of what I am doing as I am relaxed and at ease.

Tonight the song that was playing while I was changing my bag was 'Carry On' by Fun (which I really love) and I was listening to the lyrics and it was pretty much summing up how I have been feeling the last couple of days, and when the song was over it had me in a much better mindset then I have been for days.

The lyrics that really struck a chord were:

"Cause we are 
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come, we will find our way home

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound of your feet upon the ground and
Carry on"

Listening to these lyrics really have me remembering that I am a fighter, that I have been through the worst of it that I need to pick myself up and just simply carry on. That no matter how hard times seem and how bad some days are just need to pick myself up and carry on. The past is the past and there is no point dwelling on it as I believe our past helps shapes who we are.

So on our darkest days we will find our way and we will get through this.

Ostomistically Yours,
Talya xx

 

Posted by: Talya AT 10:38 am   |  Permalink   |  0 Comments  |  Email
Tuesday, April 01 2014

You know what I am really sick and tired of? People who are judgemental and quick to judge to judge me.

Today I went along with my husband who was fixing a friends computer and I met his new partner as his late wife passed about a year ago.

We were sitting there talking (well more her whinging and complaining about everything) and I was trying to be supportive and engaging in conversation. Well that was until she started with her judgemental banter.

At first she started talking about 'boat people' and how she claimed they come to Australia illegally and get more money, more entitlements and benefits than 'Australians' more so pensioners.

She went on about how Pensioners are living under the poverty line and how illegal immigrants and even 'young people like you' don't work yet get more money than pensioners.

She went onto say how she feels she is being punished by centrelink for having a partner and assests and how she is fed up of being the victim of 'poverty'.

So thats when I piped up and quite frank couldn't bite my tongue much longer.

I asked her what evidence she had that illegal immigrants get more money than Australians? She said 'it is just what I have heard'.

I then asked her what she meant by her comment 'people like you' who don't work. She said that the younger generation, like myself have no work ethic and just choose to stay home at the expense of tax payers and as she knew I wasn't working that she assumed that was what I did.

I was quite angry at this point as one thing that frustrates me more is people who don't know me decide to judge me.

I said to her "I don't work out of choice or because I am lazy but because I am unwell." When I told her that I had my bowel removed last year due to bowel cancer and before that had to stop working as the medically induced menopause I was under made me too ill.

I told her that I have held a job since I was 14 and worked fulltime up until my health forced to me stop.

All she said was 'oh, I just assumed you wanted to stay home as I knew your husband worked'.

I told her that if I could have a conventional job I would, that I don't choose to be sick and I work my ass off in any given job.

There was no apology, there was no empathy.

Mind you I do dress nicely, we have a nice car and I have nice jewellery. But these are all things that my husband and I have worked hard for to have and things I had before I stopped working.

I always love the quote 'You should never assume. It makes an ass out of you and me'.

You should never judge someone and there is a saying that:

"Until you have walked a mile in someones shoes

you should never judge the path someone has been on".

Although someone looks normal or healthy you should never assume there is nothing wrong with them. Most illnesses are invisible to the naked eye meaning you can't see what illness and disease someone has on the inside by looking at them. As most people I know who are sick just grin, bear a fake smile and to the unknown looks like everything is A.O.K.

 

 
Posted by: talya AT 08:30 am   |  Permalink   |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  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.

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