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Feeling Ostomistic
Friday, January 12 2018

NB: This post contains talk about poop

You always remember your first time doing a milestone. Well today I am celebrating the first time I showered without my bag on and boy I felt like a rockstar afterwards as though doing something mundane but great.... If you know what I mean.

There have been times where I have had a really bad bag leak, I'm not talking about a little seepage from under the wafer, I am talking a leak of cataclysmic proportions like a volcanic erruption or a poosplosion (the latter is real, trust me). My clothes, my linen and my mattress protector needed to be washed and soaked with napisan.

Then there was me, not only were the clothes I was wearing drenched, but so was I.

You know when you go to the beach once but for the next month you find sand everywhere and it gets into every nook and cranny? Well, that is how it is for me when I have a bag leak of epic proportions, except switch out sand for poo and you've got yourself a winner.

So in times of a cataclysmic bag leak it is best to just get in the shower and be hosed off and clean up the mess later.

I have always been hesitant though at jumping into the shower without a bag on, normally I would clean my self up the best that I could while sitting on the toilet and once a new bag is on I would then jump into the shower. Which often meant changing my bag afterwards.

I know what you're thinking, but WHHHHHHYYYYYY?

Well, it was simple....

I was scared.

I have never, in 5 years, showered without a bag on. 

I know many do and many have many times, but I was always hesitant.

One of my fears, with my first stoma (May 2013-feb 2016), was because essentially your bowel is stitched to the outside of your abdomen I was worried about the run off from my shower gel or shampoo/conditioner would affect my stoma or cause irritations that might leave me presenting to the emergency department explaining my issue and people think I am silly for not knowing better. It really used to play on my mind.

So I never did try with my old stoma.

Then this new stoma (feb 2016 to now) is a total pain in the ass, it is retracted and sits under my skin, essentially I poop out of a belly button looking hole. So because of this I was always worried that the run off or chemicals would get inside into my small bowel and cause issues, because, well, soap and shampoo/conditioner shouldn't naturally be in your small bowel... so I worried it was just a recipe for disaster.

But with both stomas I was also worried about the mess side of things, like what if it were active during my shower, what if it were active while I was drying myself and would have to shower again and the circle would go on, and on, and on. I also can't bend over or get down to clean, so I was worried about leaving another chore for Russ to do, so I feel enough a burden when my bag leaks this badly and he has to help clean me up.

So back to my story.

I was in bed asleep all day and woke around 6pm to find my bag leaked, I called for Russ to help me as it was too much for me to manage to clean on my own.

Each time it is this bad he always says "just jump in the shower and hose it off", but every time I say "uhh, no it's okay I will figure it out".

Except yesterday I really had no energy and said "what the heck".

I took my bag off and disposed of it, that way I could clean my stomach better and easier.

I had my first shower without my bag on, it was nice to have water running directly on my belly as opposed to wet towelling and washers. It was nice. I have a handheld shower head which has different notches you can turn it to for different settings, so I put on the more gentle of the settings and didn't hurt.

I was worried about the repurcussions of an active stoma.... but to my surprise there wasn't any disasters. My stoma had probably expelled everything it had stored in there (daily I have bowel blockages due to tumour issues) so sometimes it works all of a sudden and leads to poosplosions like this.


Me post shower, feeling like a freaking rockstar!

Now I know next time when I should just jump in the shower and hose off that it will be okay, that I won't die because my soap chemicals burned an ulcer through my small bowel or that showering with my bag off won't damage my skin if anything it helped it.

Thankfully it isn't everyday that I wake up with a leak like this, some days it is more managable, but it is uncommon to have a day where I don't wake with a leak. There have been a couple of times when a leak like this happened during the day when I was out (once at a wedding and once at a restaurant), so in those moments I can't just hose myself off. 

Have you tried showering without your bag? Were there worries you had too?

I know my worries might have seemed over the top, but I live with bad anxiety and that anxiety rules a large part of my life and very quickly my mind can esculate a situation.

I am used to bag leaks now, but it took a while to not be flustered. At first I would cry every time my stoma leaked and I would be so flustured and overwhelmed, so much that my husband would step in and help me. He always was the calm one. I used to play songs or music when I did a bag change to help distract me. When I got my new stoma and it leaked almost hourly I basically had an ipad set up and would watch something funny to distract me, the steps involved in doing a bag change took almost an hour each time and it just helped the time to pass by being distracted.

Now when it leaks, I am just so focussed on getting a bag back on as quick as I can because sometimes it can take a long time to stop being active long enough to whack the bag on.

If you have a frequent leaking stoma, welcome to the club.

But be sure to see your stoma nurse about why you have a leak and what you can do to prevent it, I know not all leaks can be prevented but sometimes there could be a new or better product for you to try.

With my first stoma I was have regular leaks every few days, I realised that my output was getting under my base plate, so my STN gave me rings/seals to try and it really helped improve the longevity of my bags and I was able to go 7-10 days between changes and my skin was still good... I do miss my old stoma, and it is important to note what worked for me in that situation might not work the same for you.

Of course there isn't anything to be done about this current stoma, and it could be the same for you, but sometimes your nurse or surgeon can help.

Posted by: Talya AT 03:40 am   |  Permalink   |  0 Comments  |  Email
Monday, November 27 2017

I am feeling a mix of emotions right now, I am feeling so relieved that the magazine is finally ready to be published and shared with the world... but that part terrifies me!

I feel guilty for the delay, health issues happened, but I still worked hard when I could manage to get the issue out.

I also feel mega proud right now!

I hope you enjoy this issue, there is some great content in there and work for issue 3 is underway (summer/xmas/holidays issue) so if you have any content you want to contribute get in touch asap, or keep an eye on the facebook page too.

If you're a business and wanting to advertise - we offer affordable advertising options and also offer affordable graphic design too. I am also open to collaborations, just get in touch.

I am really hoping you love this issue, there are 2 giveaways too.

In this issue I launch my NEW Stoma Diary, this is an ebook that you can download for FREE  and print or edit via your computer or tablet. It is aimed at helping NEW ostomates navigate the first 6-8 weeks post op and as they approach surgery. I have had my own stoma nurse look over it and she excitedly shared it with her colleagues too.

So sit back with a cuppa and have a flip through.

I have tried to get more male relatable content out there but struggling to get the guys to contribute, anyone that knows me knows I am stubborn and persistent and I endeavour to have more male content in here, I am trying my best so please don't be disheartened.

Finally, If anyone is wanting to join the team on a voluntary position I would love some social media help and develop a content strategy etc, I recently posted about this on the magazine facebook page too.

Anyway, have a wonderful night and I will anxiously await your feedback.

Posted by: Talya AT 12:02 am   |  Permalink   |  0 Comments  |  Email
Sunday, September 04 2016

I often wonder if my dad's bowel cancer had of been detected early on, would he still be here today? I believe that he could have been, especially if it hadn't metastised yet.

I also wonder, would he have needed a stoma and if he would have been okay with needing one if it meant he would still be alive.

Then I imagine my dad and I twinning at being stoma bag buddies, and sharing a humour about life with a stoma that only we would understand and appreciate.

My dad was one tough bloke, he was WAY tougher and stronger than I could ever be. He hardly complained about being in pain, and although you could see in his eyes he was exhausted, he would still make sure that he was there for us kids.

But, I know how hard living with a stoma can be, especially in those first few months.

I know if my dad were given the choice of life with a stoma or death he would have opted for living, he would have done anything for his kids. He would have made jokes about having a leak in public, and gone "well, fuck. Shit happens aye". 

He probably would have even said something like "don't scare me like that... I shit easily".

But something totally corny and dad jokey would have been "talk about de ja poo... I've heard this crap before"... or "Did you know that diarrhea is genetic... because it is running in my jeans".

Dad was a true comedian and could turn any situation into one that could make you laugh... I think he would have continued that humour and his positive outlook through having a stoma too.

I like to think that is where my strength, ostomism (optimism with a stoma) and humour come from.... and in a way I feel that he helps me to get through each day by asking myself "what would dad have done/said".

Even after his death my dad continues to inspire, motivate and give me the strength I need to get through my day.

Happy Father's Day dad.

Tell me, is there something that you inherited or share an interest with your dad?

 

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

 

Posted by: Talya AT 11:01 pm   |  Permalink   |  1 Comment  |  Email
Monday, August 22 2016

NB: This post is purely satirical... proceed to read with sarcasm

Recently, I was called Gross.... I was asked "how can you live like that?"

Well, I can and I do, and it is pretty simple. I wake up, I live my life and do stuff through the day and then I sleep... and repeat! See, easy!

You see, my daily routine is somewhat similar to a 'normal bodied routine'... I say somewhat as it is slightly different as it involves me essentially shitting myself 24/7 (oh the horror) but I can point out many similarities to our daily routines...

A typical day of mine goes like this:

7-8am: I wake up in the morning, and one of the first things I do is go to the toilet. Nothing like that first pee in the morning, except I also have to empty my bag. Which is usually mostly air, as most people fart all night. I fart too, just you don't smell or hear mine as it is trapped in a stoma bag.

8.15: I am sure this is where you take your coffee, the one thing that you probably need to get you through the day? I consume something too, my medication (thyroxine, endone and folic acid), I need these to survive and can't live without.

8.20-8.30: Just as my husband is getting ready to leave for work I call him in for a quickie.... he quickly jabs me and he puts on his shoes and then is off on his merry way. Then he can rest easy all day knowing that he helped to keep me alive that day with my blood thinning injection.

9-11.59am: The elusive siesta... some might call it sleeping in, some might call it taking a nap. You probably prefer an afternoon nap, but I have mine in the morning so by lunch time I am wide awake.

12-1pm: I have lunch.. this may vary day to day from leftovers the night before to eating dry crackers. If I am feeling adventurous I might even go out for lunch.

1-5pm: I would call this my 'work time'. I only have a 4 hour work day and mostly my work involves writing a blog post, designing fun little pictures.. who am I kidding, I am on facebook and shopping.

5.30pm: My husband comes home and cooks dinner. Dinner is usually something fancy like bangers and mash. In our household we aren't atypical to the stereotypes of the roles of a 1950's housewife; my husband does the cooking, the cleaning and the bringing home of the bacon.

6pm: We have dinner, talk about our days (he acts like I actually did more than just sit on fb all day) and then we just watch netflix and chill

7pm: We have our showers, everyone needs to shower. I just happen to need to do a bag change afterwards.. No biggie. We all need to change our underwear everyday (and my stoma bag is the underwear of my stoma)

7.30pm: Husband goes to the study and does computer related stuff (as he hasn't just spent all day around computers) and I go to my office (the dining table) and belt out songs. This goes on until bedtime.

8PM: Husband comes to give me another quick prick for the day, ensuring that he has kept me alive for the night.

10pm: We head to bed and read. Well, he tries to read; I just try to have a chin wag and nag at him about what he didn't do or needs to do the next day.

Annnnnnnd then I go to sleep.... and get ready to repeat it all the next day!

So that is my typical day, but also throw in having to do a bag change whenever I just decide to shit myself (you know because I have control over that and all).

So I am sure there are many similarities to our day... we all eat, sleep and shit. I just do it a little differently to you, but doesn't make me gross. Who wants to be normal when you can just be unique?

Oh, and having a stoma isn't the worst thing in the world.... some people have a stoma as it was either that or death.

It can be rather convenient too!

Imagine you're standing in the long queue at Big W to do the no deposit toy laby, and all of a sudden you need to do a poo! Oh what are your options? Either leave your trolley unattended in queue while you run off and pray that no one steals your loot or your spot in the line, or you just stay and wait and have an accident? Well, for me I can just do a number 2 at any time of the day and it conveniently collects into a pouch (that doesn't smell I might add) and then as it is full I empty into the toilet. No more missing out on sales for me!

But tell me, aside from now pooing differently has your life changed too much with a stoma?

 

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Talya AT 07:05 am   |  Permalink   |  0 Comments  |  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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