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Feeling Ostomistic
Sunday, May 13 2018

NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY

For as long as I have had this blog I had set myself two milestones I wanted to reach:
1) reach 1,000 on fb and 2) celebrate 5 years blogging!

I know these might seem like small or insignificant goals, but to be honest when I first learned I was 21 had early stage bowel cancer and would require a permanent ileostomy for the rest of my life - I didn't know if it would be a blog worth following, because it wasn't sexy and appealling, so I worried if anyone would read my blog or engage with me or if they would judge me. I was worried I wouldn't be accepted and that I wouldn't help anyone. It is such a sensitive and private topic that I felt so vulnerable putting myself out there so openly.

All I had ever set out to do this blog was just to help at least one person, and I know in the past 5 years I have done that! AAAAAnd I found MY TRIBE of people who love and adore me too.

This week I also celebrated 5 years since my total colectomy and the moment I became an Ostomate for LIFE! I celebrated each of those extra days and minutes I have had with pure joy and gratitude, as much as my stoma changed my life it saved my life too. 

My stoma has helped me to have these extra days and years, and my blog became an outlet for me to share my experiences and hope to empower and help others on their own stories.

I am so grateful to those who interact/engage with me on social media, many become friends or like family; they celebrate when I have a win, they share my sadness when I am in pain; they encourage and support me to live and celebrate life to the full - and I have.

So this giveaway is for YOU as my way of saying thanks.

I appreciate every comment, like, message and email and love all of the support, as I believe in the importance of saying thanks I am showing my gratitude with this HUGE giveaway for you. 

The ultimate self care package for One!

Prizes:

1 x Pair of Multi Marble Delight Earrings - Gorgeous By Carly

Get ready to sparkle with these pretties! Made from premium acrylic with a glitter top with stunning rose Gold findings to make them super classy too. No two pairs are the same due to the placement of the acrylic, these babes are definitely OOAK!
For more details or to see more of their stunning earring range click here!

1 x Ultimate Body Goodness Care Set from Sugorma
Body CARE SET - Love Your Body

 
Natural luxury body care to love your skin. Vegan, palm oil free and cruelty free. Enjoy Foaming Cleanser, all natural Body Oil, light and fluffy Body Cream and Salt Fusion Bath Soak and Body Exfoliant, to naturally care for your skin. A wonderful gift to spoil that special someone... you know you deserve this!
To find out about all of the items in this pack, click here!

 1 x Neck Wrap Heat or Cold in Boho Feathers - Chatterbox City
Wheat free, Odour free and doesn't sweat either.

Designed to sit nicely on your neck and shoulders & sectioned into 8 segments so that you receive an even heat. Use this pack hand free so you can still get on with your daily activities while getting your much needed relief or relax back and wrap it around your ostomy bag for a great tummy relief.

To find out more about this heatpack or to view the other innovative packs, click here!

 1 x 'Hey Beautiful' Love Letter - TLL collective
A letter of inspiration, gratitude, mindfulness and love, delivering a special & important reminder.

 

A reminder that YOU are Bright, Brilliant, Beautiful and Brave and most of all YOU are loved.
♥ A letter to remind you that self-love & self-care is essential and that you are deserving of your own authentic genuine love.
♥ Trust your intuition & have the courage to follow its guidance and if you believe in ANYTHING today… let it be YOURSELF.
To take a look in more detail at the amazing Australian made products included in this pack, or to look at their other packs perfect for yourself or to send as a pick me up gift to another, view their website here.

 1 x 'More than words' book by Sophie Guidolin
The perfect book to motivate and encourage you to dream big, More than Words is a collection of my motivating quotes and mantras.

 

Each page within the book details a beautifully hand-scripted quote to lift your spirits, change your mood and focus your goals.
The perfect size for bedside reading, to keep on your desk or take in your bag for daily inspiration, with a ribbon marker to save your favourite quote. I know I find great value in using positive affirmations.

If this book sounds like it is something you NEED in your life, you can purchase a copy for $29.95.

 1 x Set of 50 motivational & inspirational quotes - Pink Pom Pom Printables


This epic set of ultimate sparkly and girl power motivational and inspirational quotes, to print and start adding positive affirmations around your house. Perfect for anytime you need a boost of self-love.

  

Whether you're wanting to view all the 50 designs in this pack, or to purchase the pack yourself to print off as gifts when popped in frames, or to start filling your home or bedroom, office cubicle or even if you are studying and want to decorate your bedroom. The need for and use of these beautiful prints are endless.... and SO affordable too at 90% off RRP to buy all individually.

Head on over to Etsy to view the full details of this epic motivational package!

 1 x Pink and mint green car diffuser 'french vanilla' - Salty Fox Co
The perfect addition to your car, it will leave your car smelling fresh and pretty without being too overpowering. Even my husband feels pride for a nice smelling car.

 

What makes these beauties so versatile is that they aren't limited to being used just in the car! I plan on adding some to our walk in robe to help keep the room smelling fresh, could add to the bathroom or toilet, or sneakily throw in your teenage boy's room. But no matter what, you will be left feeling serene and smelling pretty too.

Head on over to their website to view all the different scents available and while you're there check out their other designs too!  ♥ All handmade and all so, very affordable!

 1 x 2 pack of Notebooks and a set of Greeting Cards - The Scenic Route
These beautiful pack of notebooks and greeting cards are designed by a local artist who draws her inspiration from our beautiful and colourful landscapes and flora and fauna of Australia. Taking the Scenic Route is all about choosing the path less travelled, slowing down and enjoying the journey, appreciating the scenery, and embracing a sustainable life full of colour and beauty.

 

Greeting Cards:
♥ 
Pack of A6 gift cards featuring eight unique hand drawn botanical artworks, printed on 300gsm recycled card.

♥ Perfect for all occasions, cards are blank Inside, each comes with recycled brown craft enveloped, and individually packed in a biodegradable clear cellophane pouch bound by a brown kraft paper bellyband.

♥ Made with love in Australia and printed on 100% recycled paper using vegetable based eco friendly inks.

 

Notebooks:
♥ 
Set of two A5 noteboooks featuring hand drawn botanical artwork covers printed on 300gsm recycled card. One lined and one unlined, front page features "This book Belongs to" title page with signature The Scenic Route illustrated border.

♥ Splash resistant cello glazed cover, 48 pages and finished with pink saddle sewn binding, perfect handbag size for all of your important notes and daydreams!

♥ Made with love in Australia and printed on 100% recycled paper using vegetable based inks.

 1 x Bath tea soak + candle + clay mask set - Kiss and Co
The perfect treat after a hard day and you need to unwind, this is the ultimate self care solution. Heat up a bath and add in some bath tea soak, apply a clay mask and light the candle. Talk about relaxing vibes!

Relax and unwind with our mini pamper pack. Including:
♥ Our bath tea bag - a floral bath soak with essential oils and salt from the Dead Sea it is designed to purify body and mind.
♥ Our Australian Pink Clay Mask - designed for most skin types, this is a nourishing and moisturising mask that will leave your skin glowing!
♥ Our Lemongrass soy candle - coming into the winter months it is such an uplifting scent, and will have your home smelling divine!

Talk about an epic prize pack to win!!! 

Are you excited? I know I am!!!

To enter click here!!

 

 

 

 

 

Posted by: Talya AT 03:25 am   |  Permalink   |  2 Comments  |  Email
Saturday, April 21 2018

Disclaimer: This blog post contains spoiler alerts for Irreplacable You and discusses themes around Anticipatory Grief and cancer.

I spend a lot of my time watching TV shows or movies online via netflix, that it is often the only way I can try to escape my surroundings or my reality faced. Sometimes you come across a doozy of a show that has you wondering how you could get back those wasted 90 minutes of your life; other times you stumble across the goods.... but then there are times where you start to really get into a show only to learn that it is actually about cancer, and when you're trying to escape your cancer riddled reality, often these shows just aren't what the Doctor ordered when he said to "Netflix and chill".

Sometimes it could be handy if a show came with a disclaimer/warning, similar to that of the warnings put in place in Australian media when warning that there may be footage/images/voice recordings of deceased Indigenous Australians which may cause distress for viewers:
 "WARNING: Aboriginal and Torres Strait Islander viewers are warned that the following program may contain images and voices of deceased persons.” (ABC) This source also explains the cultural signifigance and meaning behind this practice too. 

With this in mind, there should be something similar to be considered when it comes to TV shows or movies that involve cancer, especially to the point that it may cause distress to viewers with The Australian Cancer Research Foundation stating that "most Australian's will be exposed to cancer at some stage in their life either personally or through family or friends" as sourced from "Cancer in Australia in 2017". When you consider that the Australian Cancer Council state that "1 in 2 Australian Men or Women will be diagnosed with cancer in their life before they are 85", that is a HUGE portion of the population that are exposed to cancer either inadvertly or advertly.....

So surely a duress warning is warranted after all, due to the amount of population exposed?

When a show ends up revolving around cancer or the premise of dying, it can be rather emotional watching it and if you're in a bad headspace mentally like I have been lately, you just end up bawling for hours on end and can sometimes lead to feeling in a funk for days if not weeks and can even unravel how well you are indeed coping with life. 

Very rarely however, I can find myself actually learning something from one of these movies or shows; which is rather surprising and unexpected when it does happens. I recently and surprisingly learned that how I have been feeling in regards to my prognosis, actually had a name!

Anticipatory Grief: The grief you experience without realising there's a name for it!

I recently stumbled upon a Netflix Original Rom-Com (romantic comedy, how it is a comedy is beyond me) called Irreplacable You, which introduced to me the term Anticipatory grief. Once I heard it, that this phrase actually had a name for it, I felt somewhat calmer about all the shit I had going on in my mind and started to get some clarity within myself. Choosing to read on may contain in spoilers of the movie, so spoiler alert friends.

But knowing about anticipatory grief made me feel normal in what I have been spending so long trying to process.

Anticipatory Grief, as presented in the movie, was in the way that Abbi (the lead, the protagonist of the story) was so caught up on being worried about how her partner (and fiance) Sam would cope after her death, that she created an online dating profile with the aim of seeking out "the right woman" whom she could ensure would have Sam's best interest at heart and that he would be okay and taken care of. Abbi was so focussed on making sure that everything was ready and prepared for that she had hoped this would make her anticipated death easier on herself and those around her.

It had the reverse effect as it made Abbi so focussed on life of her loved one's after she was gone that she lost sight of the living and the being present in the now. She alienated herself and by pushing Sam into another woman's arms, she lost him too. They did eventually rekindle their relationship and the day their wedding was planned for, it became her funeral, as she had died in the days prior.

But it really made me look long and hard at my own life.

I didn't know that there was such a term as anticipatory grief, and I hadn't realised that I had been living and navigating through it.

But once I knew that there was a name for a lot of what I have been trying to do, for the sole reason that I had died, such as:
Writing letters to my loved ones;
♕ Leaving behind memory boxes;
♕ Doing special things such as the photoshoot with my sisters as they wanted a letter and nice photos of us sisters together;
♕ trying to tidy up our finances so Russ can manage on his own and with ease;
♕ Planning my own funeral so that others could focus on their grief;
♕ or even in leaving gifts behind for future milestones I will have missed.

There have been other moments I experienced Anticipatory Grief without realising it:

I remember breaking down crying at my mum's wedding February 2017, like I mean full on hysterical tears. Everyone (all my siblings) were dancing and my mum came and sat with me and hugged me. She asked what was wrong: that was when the tears started and they wouldn't stop. I felt so guilty that I was ruining her special night with my sadness and grief, I was just so sad at the thought of all future family events and milestones I was going to miss, such as the wedding's of my siblings, and it all just got too much for me. I apologised afterwards and the following day, mum said it was okay and she acknowledged that it must be hard.

But I didn't know then that it was anticipatory grief, it also wasn't the only occasion that has thrown me for six either:
I remember tears felt for my nephew's first birthday as I was surprised I was still there to see him celebrate (was 6 months since entering palliative care), but the thought of him growing up not knowing me or knowing how much he meant to me does still upset me. For his first birthday I named a star after him, for his second birthday I got a bunch of kids books and wrote a heap of heartfelt inspirational messages inside each one, that I hope will help motivate and inspire him in the years to come.

There are so many other times too, poor Russ has had to deal with me and the various stages of my grief for so long. He sees it all and knows this stage is hard for me.... it is hard knowing that life will go on and that I will miss out on things, but I am also worried my life would have meant nothing or I would be easily forgotten, so I am trying to do memorable stuff and make a difference as I don't want to be forgotten... which is another form of anticipatory grief.

I often break down at the thought that Russ and I won't get to live out our dream of sitting on our back verandahs in our matching rocking chairs just laughing and chatting together, or we often find ourselves talking about our 10 year plan and what we will be doing without thinking and then it hits us and one of us is crying. I get upset at the thought of missing out on having a career, missing the wedding of my best friend and siblings too. I was fortunate to live to see one friend get married last November, a day I didn't think I would live to see, and we both hugged and cried so much that day she just kept saying how happy it made her that I could be there and the feeling was mutual, gah - I am crying now just remembering that powerful and emotional moment.

I must admit the thought of Russ moving on and finding love after I've gone has been on my mind a lot, but not to the extent (yet?) that I would actively seek out my replacement and set him up before I had died (like Abbi, in Irreplacable You); I know I tend to do things a little pre-emptively, but that (seeking out my own replacement) for me is a little too much. I had considered writing a letter to whomever came after me, but trying to put that pen to paper was just far too difficult everytime I have tried. What do I say or how do I begin, "so you're banging my husband and could give him a life I couldn't because my body was too stupid go ahead and have fun kids"... nah, it is too much. I want him to be happy and hope he isn't alone but at the same time I often cry at the thought that he will have a life I won't be a part of and I won't be here and it hurts thinking of him having a family and having a relationship with someone who is normal and can do normal things like walk or shower without assistance, and who isn't such a burden. I do worry about him though, if someone takes advantage of him when he is vulnerable (such as take our house from him) or his next partner doesn't understand Autism, how his mind works and just how patient you need to be at times; he says he probably won't try dating again. 

Noticing anticipatory grief in those around me:

Now that I know that it (anticipatory grief) exists and it has a name, I have been noticing it more and more in my own everyday life and pracitices. I have also been noticing the anticipatory grief that others have in their interactions or behaviours towards me.

Ways or some examples have been:
- Not inviting me to something because it was easier to exclude me than to try and accommodate me;
the list could go on but I would be here for days if I listed the experiences faced, and you'd be horrified if you knew some of the truth too.

Time for change, let's talk about Anticipatory Grief to Normalise it:

For so long I have felt guilty or ashamed for feeling grief or grieving over the loss of something due to being terminal, such as: the loss of friendships or social relationships; loss of my independence and being so reliant on Russ; loss of my ability to do normal everyday tasks such as dressing myself, showering, even walking; I know I felt grief over the loss of my bowel; grieving the loss of my connectedness to my community and feeling like I don't offer a valuable contribution to society; loss of career prospects; loss of being able to have a family and fertility.

I wished I knew then that anticipatory grief was normal and that it was what I have been feeling for all this time, it might have made accepting and acknowledging these feelings easier, rather than bottling them up because I felt like something was wrong with me for feeling how I did and feeling like it was all trivial, not realising this is a totally normal process and grief to experience.

Perhaps if people read more about anticipatory grief, they might then know to speak with a mental health professional to help work through their issues, like I currently am.

But most importantly there is nothing to feel ashamed of for feeling this grief or for grieving the life you're going to lose, it is only natural, but finding the right counsellor to help you through your issues is key. If you don't feel they are a right fit, try and search for someone who is.

Know you aren't alone and what you're feeling is completley valid, important and worthy of being acknowledged.

Posted by: Talya AT 02:25 am   |  Permalink   |  1 Comment  |  Email
Wednesday, April 18 2018

Stoma Nurses are the heroes of the ostomy community, well I know I wouldn't have made the last 5 years without my wonderful nurse by my side. So it was why it was an absolute honour for me to have been asked by the WOCN society to contribute to a tribute video they were collating for WOCN week, to say thanks for our nurses.

It was even more of an honour as it was to mark 50 years of WOCN contribution, and I felt in someway that it was a way for me to leave a mark in the world to say thanks to my Nurse and all the nurses out there. I am big on saying thanks and ensuring that I say thanks for those I love or those who have made an impact on my life.

This week 15th-21st April, is the WOCN appreciation week. WOCN stands for Wound Ostomy Continence Nursing, in Australia this is a Stoma Nurse who is also a Stoma and Continence Nurse.

If you wanted to see the tribute video, here it is. If it doesn't load below the link is here.

Thank you to all of the nurses for all that they do to help ostomates navigate life with an ostomy more smoothly. Most importantly, thank you for having our backs.

OstomyConnection shared their thanks for the amazing WOCN too, have a read of their post here.

Congratulations to the WOCN society on celebrating 50 years of service! And thank you for everything!

Posted by: Talya AT 11:17 pm   |  Permalink   |  0 Comments  |  Email
Thursday, March 01 2018

In this post you will find a FREE PDF printable pattern designed to suit the Coloplast Sensura/Alterna bags + a tutorial 

Last week I had a visit with my Stoma Nurse for a stoma review and checkup. She noticed that where the bottom of my bag (the spout part where you empty it) was rubbing on my skin and it was getting irritated due to the heat and plastic, plus my skin is just sensitive.

She gave me a material stoma bag cover to try out and wear so that my bag was no longer irritating my skin.

I mentioned this on my personal facebook page (and my blog facebook page) and a friend inboxed me offering to make up some stoma bag covers for me in pretty fabrics. I sent her my stoma bag cover and a spare bag so that she could create her own pattern.

Kristina, who is the creative goddess behind Harley B Handmade and Harley Barley designs, kindly offered to make a tutorial and share her pattern with you all for FREE so that you too can make your own fabric stoma bag covers (or ask a friend/relative who is good at sewing to give you a hand). 

I know if I am having a bad day or feeling down, I put on one of my covers and I feel happier and brighter, and I hope you feel the same too!

Please enjoy, and hope you have fun creating!

Pattern Tutorial for a fabric Stoma Cover by Harley B Handmade

Requirements:
Fabric scraps or Fat Quarters (most fabrics work, cotton woven is recommended, however knit fabrics and waterproof will work as well)
Bias Binding
Thread
Scissors ✄ 
 Pins
Iron
Sewing Machine
 Invisible pen or chalk

You will also need to download and print this FREE PDF pattern.  Click here to download or get it free from her Craftsy store!

If you prefer a printable set of instructions and images, click here to download (pattern is separate)


Instructions:
1. Cut out the 4 pattern pieces and copy the markings, if using FQ's you can fit 2 covers per FQ, fold in half and cut as per image 1.  Press all your pieces well


2.  Take piece 1 and fold the straight bottom edge over 1/4", then fold again to hide the raw edge.  Press well and pin in place.  Repeat with the top straight edge of piece 2. Top stitch the seam to secure.


3. Add bias binding to pieces 1 and 3 as per image 3, trim to fit the fabric and press well so the fabric and bias sit flat


4. Add bias between the marks on pieces 2 and 4.  You should just do this in a straight line, there is no need to go around the curve as this will be sewn into the seam.


5. Lay your fabrics in the following order, then pin all pieces in place
4- face up
1 - facedown
3 - facedown
2 - face down


6. Stitch between the 2 marks using a 1/4" seam, leaving the bottom open.  Overlock or zigzag the edges to prevent fraying.  Turn your stoma cover right sides out and you are ready to go.


 

More images:


 

A big thank you to Kristina for creating this FREE printable pattern for us to download and create our own fabric stoma bag covers.

If you'd like to thank Kristina or tag her in your creation, you can find her on Instagram as @harleybhandmade and you can find a heap of other patterns available in her Craftsy store, just search "Harley B" to discover. She has many more patterns in the works too!

Please feel free to join Kristina's Facebook Group for her patterns https://www.facebook.com/groups/HarleyB where you will find information on other pattern releases and give aways. Feel free to share your photos and ask questions in there as well.

I can't wait to see your covers! Happy creating!

P.S If you create one feel free to share on my Facebook page your end result, or post on instagram tagging @feelingostomistic and @harleybhandmade. This pattern has been made for FREE PERSONAL USE ONLY and isn't to be used for commercial purposes.

Posted by: Talya AT 05:01 am   |  Permalink   |  4 Comments  |  Email
Sunday, February 25 2018

Did you know: there is an International Day for just about everything!

Feb 20 was International Love your pet day, but that is just about everyday amiright?? It is made easier when your pet is beautiful, funny, compassionate, photogenic and clever.

Fabmewlous Dusty:

Dusty is my (well, I should say OUR) beautiful little ragdoll kitten who will be 2 later this year! He came to live with us when he was just a wee kitten and it was a matter of love at first sight, Russ and I fell in love with him straight away. He was just so, so tiny and adorable!

Dusty was so tiny he refused to go anywhere without me and often demanded I carry him or he slept on my chest, of a night he refused to sleep unless he was snuggled up to me in my bed and he has snuggled up to me every night since. He is like a soft, plush teddy bear but he helps to make you calm when he purrs.

We have been gushing over him ever since he came into our lives and will show off pictures and talk about him every chance we get and to anyone who'd listen... yes, we are THOSE type of fur-parents.

Russ and Dusty have their own special bond and routines, just as I have with Dusty. 

I can honestly say with my hand on my heart that Dusty saved me and has made my life significantly better! 

Life BD (before Dusty) was fairly lonely and boring, to be honest the days were long! 

But since, it has been filled with: love, friendship, so many cuddles to count, laughs and companionship. He senses when I am sad and forces me to cuddle him, he is incredibly emotive and he has the most beautiful big blue eyes that just melt your heart.

Russ leaves for work at 8am and I am no longer alone while he is gone for the day, Dusty looks in on me when I am sleeping and often is close by. He can even sense when I am in pain and unwell and is extra affectionate! Dusty also makes me laugh a lot and makes me feel so very loved.

Did I mention he is so clever too? He plays fetch with me everyday! I throw his toy and he fetches it and brings it back for me to throw all over again.

I never realised I could love my kitten as much as I could, I always never understood people when they said their cat is not JUST a cat and is a member of the family... that was until Dusty came into our lives!

Dusty is our child, he is our furbaby and he has helped to make our house a home. He greets everyone who enters with excitement and love and he tries to protect our home too, he also seems to know everything that is going on within our house often you'll find him at the door or window being a stickybeak. But his most important job is excitedly greeting Russ when he walks through the door after a long and hard day at work.

Dusty is famous:

So when OstomyConnection shared their "15 ostomates who love their pets more than anything" I was so honoured to see that not only did Dusty and I make the list, BUT we were number 1 too!

Pop on over and meet 14 other ostomates who share a precious bond with their pets, click the link here.

I have been sharing Dusty's shenanigans on Instagram and Facebook, he gives me so many reasons to smile and he has become a reason for many others too, often I am emailed and they make mention of how they love Dusty or when I run into someone down the street they say he makes them smile too.

He has THE BEST facial expressions!

You can find more of Dusty on my Instagram/facebook account under @feelingostomistic, he also has his own page @fabmewlous_Dusty on Insta and facebook. 

I am grateful to the joy and love Dusty has given me and I am sure it is one of the major factors in me still being here. He helped improve my spirits and my outlook on life.

The best advice people gave me when I got sick was that I should get a pet as they are the best therapy, I am just glad I listened! Maybe a pet will help you too!

 

Posted by: Talya AT 08:22 am   |  Permalink   |  1 Comment  |  Email
Monday, February 12 2018

Please Note: All views in this blog are my own (and I don't claim to speak for or on behalf of anyone other than myself)... also, spoiler alert if you haven't yet watched episode 14 of the Good Doctor. I am just sharing my dismay at how something that saved my life was shown so negatively inflicting a stigma that so many fight to erase.

I have finally got around to catching up on the most recent episode of The Good Doctor, which I was rather enjoying up until this week. 

☟☟☟☟☟☟

Let me start by sharing (an ironic) quote from the episode:
“Questions are good: Leads to awareness and understanding. Who knows, even acceptance.”
- Season 1, Episode 14 titled "She"

The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.

Instead, they made the idea of an ostomy as this tragedy and that it was THE worst thing to happen in life. I get that it is a show, it is made up, but it doesn't make those living with the conditions feel any better or at ease knowing "it is just a made up TV show that thinks this" when the reality is so many look down on life with an ostomy and struggle to see that a life can still be lived....

"I’d rather an ostomy in tow than a tag on my toe" - Talya Goding

I really was enjoying this show and often talked of the compassion felt in each episode, but this week I find myself as someone with an Ostomy to be disappointed in how it was perceived and quite angry too.

Maybe some more consultation from those with lived experiences could better make the show better.

Just an idea?

Myself and so many in the community work tirelessly to try and help people understand a life isn’t over with an Ostomy and comments on tonight’s show sets our work back 10 steps... arrogance isn’t helping anyone.

Ostomate and proud!
I took to twitter too to share my frustration and dissapointment, but I also wanted to write a proper post here that hopefully can show the inspiring side to ostomy life too.

 

Here are what other ostomates and advocates said about the episode too:

No You Cantcer @NoYouCantcer

Here are some ostomates who inspire me and others:
I know that for many an ostomy is an emergency and can come as a shock; I know that for many (like myself and others) they have many issues with their stomas and constant issues; I also know that It can take some a long time to adjust to ostomy life and it can be rather hard; some struggle a lot with adapting and this affects their mental, social, physical and financial health.

But then there are other ostomates who have regained their lives and done things they never would have imagined, because of their ostomy and because they had the surgery, that in their cases were life-changing as much as it were life-saving.

I will introduce you to Zoey Wright, Laura Zapulla aka @stoma_licious, Sam Abarca aka @Aussie_Ostomate, Gaylyn Henderson aka @Gutlessandglamorous, Blake Beckford and Dana Marie. You may have heard of these guys before or seen them on instagram, you may remember Laura and Sam from my 20 Aussie Ostomates on Instagram post.

While these are just 6 ostomates, there are so many others out there showing life with an ostomy can still be lived and loved, but also that this can be a second chance many didn't have.

I am sharing these 6 ostomates because they have inspired me and I know they will inspire you too!

☟☟☟☟☟☟

Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
Zoey is such an inspiration to many! She is a Pro Fitness Model with an ostomy, she has helped inspire so many others with IBD and an ostomy to do fitness and to also be a model too. She helped many, including myself, see that fitness is a reality with an ostomy. She shares videos, words of wisdom. She is stunning and beautiful and incredibly courageous to boot! Zoey has an ebook launching soon, so keep an eye out for more deets. Find her on: Instagram Facebook Twitter 

Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
In the 6 months post ostomy surgery Laura travelled 3 continents, 17 countries over a total of 10 months - all with her ostomy in tow! Laura helped me to realise that travelling with an ostomy is achievable and can happen. I know she has helped many others to see this too. Laura loves to get her bag out on her travels and below is pictured in front of the iconic Eiffel Tower! Laura had always had a dream of travelling and living abroad and her health put a halt to her plans, now she lives in London and travels every chance she gets. She shares her tips for travelling with an ostomy and living abroad on her blog and social media. Find her on: Instagram Facebook Blog

Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
Sam is an Registered Nurse (RN) from Australia who became an ostomate after living with IBD. She had surgery and 8 months later she was back in her scrubs and helping to save lives everyday! She documents life as a nurse with a stoma, including pesky bag leaks, but she continually inspires others whether it is running for a marathon or training to be a Stomal Therapy Nurse, or even helping new ostomates as they adapt to life post op. I know my STN is my rock and I couldn't have done this without her, and I know how valuable a good STN is to an ostomate, so Sam having her experience as an ostomate is really going to be such a resource and tool. Wishing you all the best as you finish your STN certification Sam x Find her on: Instagram

Introducing Gaylyn Henderson founder of @gutlessandglamorous - helping to inspire the beauty in all of us:

"Anything that has the power to save a life can be nothing but beautiful!"
- Gaylyn Henderson

For over a decade Gaylyn adapted her life around her pain, her health issues caused from her IBD and struggling to find normalcy. It affected her emotional health too. It was then when she had her total colectomy and became an ostomate that she regained her love of life again. She often has spoken out about the stigma attached to having an ostomy that was the reason she held off for so long. Determined to change this for others, she founded the Gutless and Glamorous foundation with aims at helping to inspire and improve the lives of people with chronic illness and pays special attention to those with an ostomy or need to undergo life altering surgeries. She said (in an interview with BlackDoctor) her ostomy "saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma." I think she has done an incredible job and believe she deserves a huge applause for all her tireless work from advocacy, support, education and fundraising for a cure. The world is a better place because of people like Gaylyn. Find her on: Instagram Facebook Twitter Blog

Introducing Blake Beckford @Blake_Beckford - Model, Body Builder and advocate:
Blake battled bowel disease for over a decade which led to him needing surgery for an ostomy. Blake became determined to get back into shape and regain his bodybuilder career and it led to him becoming a model. He has inspired ostomates around the world to get into shape and enjoy fitness, he shares tips and videos on his blog and socials. He even founded a site called OstomyReviewer which is this amazing site where you can rate and review ostomy products and see what other ostomates have said about it before you have ordered or purchased it, how genious and is such a good platform too! Blake started the hashtag #myillnessisnotyourinsult after ostomy life was insulted by some leading "news" sites and he tirelessly advocates and fights for ostomates. Blake is often quoted saying "my bag gave me a second chance" and he tries to be a positive role model for ostomates, continuing to instil hope in others. Find him on: Instagram Facebook Twitter Blog

Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
If you haven't followed Dana on insta yet, get onto it. She is so positive and beautiful, she is an amazingly talented country music singer/songwriter (I love her music) and her feed always has you feeling warm and fuzzy. Her love of life and gratitude for all things, including faith, is contaious and she is so down to earth. She got married recently to her husband Tanner and looked absolutley stunning on her wedding day. On her blog she shares some great advice on living with a stoma, how faith can help you heal and more importantly, she shares tips on how to love yourself bag and all. I actually first discovered Dana back in 2015 when I came across her online course she had for "rock the bag" where she helped you find confidence and to love yourself post ostomy surgery, I started following her online and her feed constantly leaves me feeling positive. I'm not religious but I find comfort in her words at times. Do yourself a favour and follow her, you won't be disappointed. Congrats Dana on your wedding Day too! Find her on: Instagram Facebook Blog

☟☟☟☟☟☟

I have talked before about how my ostomy gave me my life back and how it saved my life, my ostomy is the reason I get to cherish the gift of each day I wake up, my ostomy isn't perfect and is complicated but it gives me life and that is precious. In the future I hope that there is more acceptance for life-altering and life-saving surgeries like an ostomy and that it is more accepted.

This is why I started my blog 5 years ago, so that I can share life with an ostomy and hope to inspire others to live their best lives. I am so grateful now that there are so many wonderful ostomy advocates and bloggers on social media.

My wish is that in 10 years there won't be a stigma for ostomy life, that ostomy life will be accepted and not made to feel embarrassed for pooping different... I have seen how much the landscape has changed in 5 years and it gives me hope for future ostomates and the next generation of ostomates that they will feel love and acceptance and never have to feel ashamed for something out of their control anyway.

As I say all the time, I'd rather an ostomy in tow than a tag on my toe, ostomy life has been a rollercoaster ride for me, but it has also gifted me the joy of living too - so I will always be grateful for that.

 

Posted by: Talya AT 11:43 pm   |  Permalink   |  0 Comments  |  Email
Friday, February 09 2018

I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.


My Interview with Krystal on Ostomyconnection.com

Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.

Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.

So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.

As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.

I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.

Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.

If you want to read the interview on OstomyConnection the link is here.

If you want to read the original interview or to read issue 2 of the ostomistic life magazine the link is here.

You can also find Krystal aka Bag Lady Mama online via:
Instagram @bagladymama
Facebook @bagladymama
Twitter @bagladymama
Or her site/blog

5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.

P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too. 

Posted by: Talya AT 11:03 am   |  Permalink   |  0 Comments  |  Email
Wednesday, February 07 2018

Poor Russ has been a little stressed and stretched these past couple of weeks. Poor guy is feeling buggered, which is no wonder with all the excitement going on here at our humble abode.

I joked to him yesterday, that it looks like he has greyed more in the past month.


Russ and his pint sized coffee mug, he needs it after the couple of weeks he has had

Time spent with cats is never wasted:

While I spent my first night in hospital (see previous post to read), Dusty managed to somehow get outside and got into it with one of the neighbour's cats who is forever at our place tormenting Dusty.

Dusty, naturally, was only protecting his domain and his house... but while he thinks of himself as this almighty alpha (who dreams of becoming a firece lion when he is older), really just is an egotistical testosterone fuelled teenager who is all talk and can't fight.

We got a quote recently to get the "crimsafe" mesh screening on the doors as he keeps charging through the flimsy flyscreens to get outside. But at $3k, it just isn't something that we can readily organise or budget for just yet.

The night in question was rather hot, Russ didn't want to unnecessarily use the air con if he could avoid it, so he even went to all the extra measures of making a barricade using MDF ply board so that he couldn't get outside.

Yet, somehow he did.

Not only did he get outside, but he managed to get back inside climbing back over the board.

Russ found him the next morning curled up in the laundry crying and whimpering in pain, he wouldn't even let Russ touch him or anything. Russ said he was curled up on my blankets and towels in the laundry, so he might have been wanting to feel comforted by me since I wasn't home, but Russ said he spent most of the time in there sleeping while I was away... Dusty doesn't cope well when I go to hospital.

So Russ only realised Dusty had gotten outside because he was filthy and he had to give him a bath, but he also noticed he had scratches and bite marks on his back/sides.

So Russ wrapped him up in one of my towels and put him back in the laundry and headed off to work.

This was the day where I nearly died, had my seizures and was a bit of a worry.

I remember around 7.30pm Russ said now that he knew I was okay, he needed to get home to Dusty as he was worried about him too.

So fast forward a few days and Dusty started eating again, Russ said he was a bit depressed which could have been from needing and missing me but also because he was in pain and he went off his food but started eating again a couple of days later. Then gradually over the days to follow he would slowly get back to his old self.

I came home from hospital last Friday, I got out of the car and hadn't made it to the front door yet when Dusty was at the front door meowing as if he was excited to see me home. Russ said that was the happiest he has seen him in that time.

Every night since his first night with us, he always would sleep in our bed cuddled up to me of a night. So when I am not home and in hospital he doesn't come in our room to sleep and usually sleeps on a lounge or on a cat bed he has hidden under the coffee table. So he slept there and in the laundry.

But my first night back home he jumped up on the bed and cuddled up to me and was purring so much, it really made me feel a lot happier to know that he was feeling safe and well again. 

Since then he has been acting more and more like his usual self, today he ran around chasing flies or ghosts, he even jumped up to the top window in the dining room (where he looks out over his kingdom) and has been enjoying having me home.

He hasn't let me out of his sight and even will lay at the door looking like a Sphynx guarding the room, being home with Russ and Dusty certainly has been the best medicine for me, so hoping it is the same for him with me being home. But it broke my heart knowing that Dusty needed me but I wasn't here to console and comfort him, I feel guilty.

Dusty's visit to the vet's today:

When I cuddled him the first night I was home I noticed he had a couple of bumps along his back near his spine, I was worried and concerned, by Monday these had grown bigger. So I called the vet and asked them for a consult today (Russ had the day off).

Russ and Dusty trotted off to the vet today and he said Dusty had a temp and that the bumps were abscesses because of the other cat he fought with likely had something on it's claw or teeth. 

He has a course of antibiotics to take twice a day and to see if the infection and abscesses clear up, if not he will need to have surgery to remove and drain these. But the vet said that they look close to bursting any day now, so fingers crossed!

So it's been a pretty big and exhausting couple of weeks here at our household, just hoping that Dusty can quickly understand he isn't an almighty Lion and he is just a precious little cuddly bear. Hoping this phase passes soon, because we can't quite fit $3k just for new thicker screened doors into our budget to appease his testosterone alpha male ego character he has going lately.... I thought having him desexed he wouldn't be so, well, male?

I am proud that he loves our house enough to feel he has to protect it, but he is just far too precious and is really just a soft cuddly pretty boy!

But the best part of being home is feeling like he needs me and being spoiled with all of his cuddles. I am just grateful he is okay and nothing too major, but I don't know what I would do if anything happened to him.


My beautiful sleeping baby

Tell me, did your cat ever settle down as he got older?

Or any old wive's tales you know of that have cat's leaving your property alone?

P.S Did you know Dusty shares his own antics on Instagram and fb search @Fabmewlous_Dusty to follow

Posted by: Talya AT 10:15 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, February 07 2018

CONTENT WARNING: DISCUSSES DEATH READ AT OWN RISK

What a massive couple of weeks it has been, if you were following along on social media you may have seen my posts from hospital updating on what was going on.

Australia Day, is often a day spent with family and friends remembering or celebrating what it is to be an Australian, I know the day has conflicted meanings and celebrations for everyone, but Jan 26th 2018 will be a day that I remember just how close I came to those pearly gates and how bloody grateful I am to live to see another day.


Taken Jan 26th, 2018 after "the event"

So this is what had unfolded:

On Tuesday Jan 23rd, I was brushing my teeth around 4pm when I had a really sudden sharp pain around my right kidney area and shot down my leg and my leg felt like it were about to snap. I hopped, literally, to bed and got comfortable and had a nap. I woke around 10pm and struggled to get up out of bed and then also get to the toilet.

The next day the pain in my right leg was a lot worse, I couldn't weight-bear and relied on Russ to help me move from bed to toilet back to bed. I was crying in agony.

Thursday morning I woke and trying to get to the toilet I was screaming in pain. Russ was heading to work and I called Palliative care who told me to call an ambulance. So Russ left for work and I went in the ambo to the hospital. I had fentanyl up the nose a couple of times and barely took the edge off, no amount of morphine was helping either. Russ went to work but by 10am he was at the hospital as he was upset and wanted to be with me. It was a comfort him being there as I was in agony and I was so scared. The pain was horrendous.

I was admitted to hospital.


In Emergency

The next bit is where things got dicey....

So overnight my heart rate went sky high, talking 144bpm (normal for me is 90-100). My o2 dropped too.

They monitored me but by next morning things weren't any better.

I remember friends messaging me around 10am and I replied back, I thought I made sense but it was all drivvle and nonsense but it looked fine to me, so I didn't think anything of it.

That was all I recall, I don't recall much after that point.

Apparantly, from the pieces I managed to compile in the days to follow, was that I was passing in and out of consciousness. I went into a deep sleep and they struggled to wake me.

I kept coming too during the "resus" which may have been around 3pm and saw bunch of folk standing around my bed, some were pushing IV drips in, someone pressed the big emergency button, remember my bed being wheeled to another room where doctors were talking to me. I was upset and frustrated as no one was telling me what was happening, turns out they were but I was passing out by the time I asked my question and them telling me what was happening.

I wasn't sure where I was and my speech was slurred.

They rushed me up to CT and did a full body scan, thinking I was having a stroke or heart attack. I am on clexane injections due to previous blood clots in my lungs, but also because the tumour in my abdomen has blocked off the major arterial blood supply to my small bowel and stomach and they were worried that maybe there were a clot in my small bowel (one of the forecasted ways I could die)...

So I was upset and asked them to call Russ, he arrived sometime after they called him (he was on his way to me anyway) and I calmed down a bit when I recognised one of the voices of one of my doctors off my palliative care team, it was just scary being unconscious and not being able to see who or what was being done to you and remembering I didn't quite know what was happening.

I did also keep telling them "I'm not ready to die today" and "ignore my DNR". I was adamant that NOW was not my time and I was crying saying "but I am not ready" and "I need to write my goodbye letters".

I was just so worried that I was dying alone and it was my fear.


24 hours later, still was on o2

So fast forward to post event, I was so hazy and tired. My body hurt from the siezures and all the medications, I was having trouble reading (still am) but also what I was speaking wasn't what my mind thought I was trying to say, even typing for a few days after were a struggle.

I am still so tired and exhausted, I am trying to rest, but it really has been such a difficult couple of weeks.

They don't know what happened, they think it were an infection, my leg is still giving me grief but I was just so terrified.

Had I stayed home and tried to "tough it out" at home like I usually do, things would be very different and I could have very well died in my sleep during the day alone.... which is one of my fears, is dying alone. Russ has a fear of coming home from work and finding me, he gets worried when he calls me as he leaves work (even before all this happened) that he never knows what is awaiting him at home... poor guy! This latest event hasn't helped his fears though.

But it made me realise a few things...

1. I am not ready, I still feel like I have so much left to do, including putting pen to paper and penning those difficult goodbye letters to my loved ones.

2. I have a newfound appreciation for every good moment of the day and just how grateful I am to be alive

and 3. That Russ has even more grey hairs now than he did a fortnight ago, but that I saw just how much me being sick has taken a toll on him.

But jokes aside, I honestly always thought that when it were my time to go that I would know that it was time and that I would feel this sense of calm and readiness, as if I felt accomplished and happy. Now, I worry that maybe there isn't ever really going to be a universal sign or feeling of totality and that maybe you won't know.

It has made me even more determined now to try and get my affairs in order and try and be the best version of me I could be.

So I am home now, pain meds have had a total overhaul, back to weekly palliative care visits and here's hoping there are a few more chapters left of my story.

They pumped me with so much fluid during the resus that my stomach swelled up really badly, so much that I thought it would just split open, so took duiretics to help shift the water and my stomach is resembling it's usual self but still sore. Even around my stoma was swollen from fluid.

It has been a difficult week adjusting to being back home, I am still feeling weak and tired, my brain still feels sluggish and I am just taking my time to rest and actually listening to my body for once. I am not going to push myself anymore and after starting off 2018 on a rough patch I hope theres a few good months ahead.

Thank you to all the love, messages, comments checking in on me, it is a comfort knowing so many care.

You're stuck with me for a little longer still, well I hope anyway!

 

Posted by: Talya AT 10:02 am   |  Permalink   |  3 Comments  |  Email
Sunday, February 04 2018

If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....

Yes, it's that huge!

Why?

I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).

I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.

I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.

I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.

Back when I started my blog 5 years ago I said to myself:
"I want to work hard to help others with their stoma journey, I want to have a blog still valuable in 5 years time and I want to get half a million views and just hope that I have helped at least one person in my time".

So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.

I said to Russ: 
"It would be awesome if for my 5 year blogaversary I hit 500k views and hit 2 big goals in one go!"

I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.

5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.

I was scared 

I was alone

But I took a leap of faith and courageously started my blog.

I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.

I was full of self doubt.

It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.

Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.

I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.

So with hesitation  I hit publish on that first post and was surprised by what followed.

I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.

I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.

I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.

My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.

Thanking you

My blog wouldn't be what it is without you guys, my tribe and cheer squad

Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.

Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten. 

I want to thank you and show you how much I appreciate you.

I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.

What an Ostomistically amazing time it is to be alive!

I am grateful so much for you all and if I have helped you in any way please comment below.

Posted by: Talya AT 12:58 pm   |  Permalink   |  1 Comment  |  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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