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Feeling Ostomistic
Wednesday, October 29 2014

Sometimes it can be frustrating when you spring a leak (a stoma bag leak that is, not a spring onion) or when you're trying to do a bag change and your bags just won't stick!

I have 5 handy and quick tips to getting your bags to stick better and help you to prevent a leak!

1) The very first thing I do when I am about to do a bag change is to grab one of my bags (don't cut it yet if it isn't a pre-cut), fold it in half and place under your boob. No joke- this works wonders! Because the glue on the stoma bags is more stickier the warmer it gets this is a great way to warm your bag up which means make your bag more stickier.... I KNEW having huge boobs would come in handy one day hehe

If you're a guy I don't think this step ^^ will apply to you (sorry)

2) Grab a hairdryer and put the settings on a high heat and sit there for about 5 minutes heating the bag up. Make sure that you are heating up the wafer part that will stick around your stoma. You don't need a fancy hair dryer, I just bought a cheap one from a department store and it works a treat!

3) Using your adhesive remover wipes (I love my Coloplast ones) ensure that all of excess adhesive residue from your last bag change is removed.  I then using a wet washer will give the skin and area a bit of a wash (trying to not use a lot of soap as this can make bags not stick). Also make sure that the area is completely dry!

If you use Stoma adhesive powder, it is important to make sure that you wipe off any excess powder where your bag usually sticks, as this can also stop the bag from sticking. I use my skin barrier prep towlettes (like the adhesive removing ones, also coloplast) to prepare my skin for the bags and to remove any excess powder etc.

4) When I am ready to put the bag on I get both hands and kind of put them around the stoma (one on either side of the wafer plate) and press firmly and hold for a while. This adds extra (natural) heat to the bags and helps to make them a little more stickier.

5) To create some extra reinforcement of the bags I use 'banana wafers' (correctly known as elastic tape) and I use two of these to help secure the bags. One wrapping around the bottom and sides, and the other wrapping around the top and sides.

Those are my 5 quick tips to make your bags more stickier!

If you have some quick tips that you've found to make bags more stickier share them below!

Ostomistically Yours,
Talya x

 
Posted by: Talya AT 08:58 am   |  Permalink   |  Email
Tuesday, October 28 2014

Guess you never thought you would hear the words "Garbage bags and why you should love them" strung together in a sentence before......... Well that was until you heard me say it!

Now... before you get all uppity about how bad garbage bags are for the environment and how I am a horrible person for suggesting you should love them.. but if you let me explain why I have a new fondness for garbage bags, you will understand.

Over the last 18 months I sometimes get overwhelmed when doing a bag change due to the smell (which I imagine is a pretty normal thing to experience) and partly why I don't enjoy the bag changes is because of the smell.

But the other day when my husband was doing the grocery shopping, he had a pretty thoughtful gesture and decided he would buy me some garbage bags to try for when I do a bag change.

Up until that point I had been using a plastic bag (and thoroughly check for holes) and proceed to do the bag change.

But he (my husband) didn't just stop to get any ordinary garbage bags... he got small purple lavender scented garbage bags.

You wouldn't think something so.... boring would be quite effective!

I love purple and lavender and I honestly don't notice the smell when I am doing a bag change.

So HUGE thank you to my hubby for being so thoughtful and thinking to get me to try scented purple garbage bags!


These are the pink rose scented bags

OH and if you were wondering what type they were, they are 'Multix Kitchen Tidies' and I purchased them from Woolworths for $2.66 which works out at 10c each!!

Keep an eye out for more Ostomistic Tips and Advice.

Ostomistically Yours,
Talya

 
Posted by: Talya AT 08:58 am   |  Permalink   |  Email
Sunday, October 26 2014

Last week I found out that Feeling Ostomistic had been chosen as a finalist in the 2014 BUPA blog awards under the social good section.

I have had a lot of people ask IF I won what would I plan to use the money for, or more what would I do with it.

I have plans to further my studies (currently studying a Diploma in Community Services) but I want to go on to study a Diploma in Counselling.

I want to further the support my blog offers to include niche counselling of young people living with an Ostomy or associated health issues.

I know first hand how there can be days where living with a stoma can be quite overwhelming but more so with the other health issues that goes with it.

I want to offer counselling from a supportive place that when I say "I understand", I really mean that I understand!

There is nothing more frustrating then trying to speak to a counsellor and get support and when you're talking to them they just have a look on their faces like they have no idea how it feels or how you feel as they haven't had that experience.

And that is where I want to be the point of difference!

I want you to feel supported, understood but I want you to feel empowered that none of this defines who you are.

But importantly I don't want you to feel alone!

So winning this award would mean a lot of support and awareness to those who need it most.

Please help me make this vision a reality and VOTE for Feeling Ostomistic in the SOCIAL GOOD section today!

Everyone who votes goes in the draw to win an iPad Mini too! All you have to do is enter your email, that is it!

Voting ends 7/11/14 and awards night is 14/11/14, I will keep you in the loop! 

Until then...

Ostomistically Yours,
Talya

 

Posted by: Talya AT 06:20 pm   |  Permalink   |  0 Comments  |  Email
Friday, October 24 2014

I have been waiting a while to publish this blog post as I didn't want to ruin the show for anyone who has yet to watch the latest season of the show Winners & Losers (aired on 7 Tuesday Nights at 8.40).

But although this season had the usual up and down moments of emotion, there was something that really stood out to me.

I wish that I could say that I have always found the show relatable, but unfortunately I haven't had the luck of winning the lotto.

But there was something this season that made the show more relatable to me...

Have you ever sat there and watched a show or a movie and just either thought or said out loud the occasional 'uh-huh' or 'yup!'?

Well that was how I felt when watching 'Jenny' go through her diagnosis.

I really want to commend Melissa Bergland (who plays Jenny) on her very convincing and 'life like' portrayal of emotions felt when you learn that you might need genetic testing for a horrible inherited cancer gene that is prominent in your family.

It was so good to see the process and emotions felt from the time you undergo genetic testing, to waiting anxiously for 6 weeks for the results to come back, to meeting with genetic counsellors, to meeting with surgeons, to having 'that talk' with your family, to having the surgery, and to the grief that is felt after you lose a part of yourself.

While I don't have the BRCA gene, I do have the FAP gene- a cancer causing inherited condition.

I remember when 'Jenny' was first told that she did indeed have the gene, there were friends on facebook that were complaining about how 'over the top' or 'how exaggerated' the feelings/questions and emotions expressed were.

But you know what?

That really made me quite angry.

People who haven't had to go through the torment of learning you could have this inherited cancer condition really have no idea of the emotions or thoughts that race through your mind.

I fired up and said how accurate the portrayal was and so relatable as I HAVE BEEN THERE, I have asked those questions, felt those emotions and had "that talk" with my family.

When we first learned of FAP:


My dad and I at my wedding 24.07.10

I remember when I first learnt that this inherited cancer causing disease was in our family- it was a week after my wedding (2010) and my dad called an "urgent family meeting".

He broke the news that he had terminal bowel cancer and that his form was caused by a condition called FAP that is a rare inherited disease and that we would all need to be tested at some stage down the track.

I remember looking around the table at my dad who looked so scared, and to my siblings whom some were trying to comprehend what just happened and the younger ones who didn't quite understand what was happening.

I remember my dad looking at me accross the table, squeezed my hand and mouthed "it will all be okay Pumpkin".

I was 19 at the time and my paternal siblings (then) ranged from 17, 15, 13, 11, 9, and the youngest was 8.

Dad dismissed the kids from the table as he wanted to chat to me and my husband alone and he said he had been speaking with his doctors about the symptoms I was already showing and it was suggested that I get tested ASAP.

The getting tested/diagnosis process:

I went for the genetic test that following week, which was a blood test and waited anxiously over the next 6 weeks for the results to come back.

That day came and I went into the appointment with a feeling in my gut that I was about to get the news that we dreaded but kind of prepared myself for the worst.

It was confirmed I too had FAP and the geneticist went over what happens next, what having FAP will mean for me and my husband, and what it would mean going forward.

The following week I had my first colonoscopy and gastroscopy (boy was that a first-time experience I won't be forgetting in a hurry) and a couple of weeks later it was confirmed that there was large polyp growth in my bowel and rectum which had spread to my stomach, duodenum, GI tract within 6 months.

I then had to have appointments with OBGYN and fertility specialists to talk about the future possibility of having a family and what we wanted to do as FAP is a 50/50 chance of being passed on. We went over plans of doing IVF where they can screen each embryo for FAP and also met with colorectal surgeons to discuss surgery options.

Initially it was thought that my case plan could be loosely based on my dad's history in the sense that he was 39 when he was diagnosed with FAP/terminal bowel cancer and that I too could have the 'late onset' which would mean delaying surgery until I was around 26-30... this meant I had 7-11 years to start a family, I was in no rush....

Then in 2012 my whole world was turned upside down..... 


My dad and siblings at my wedding

In march (on the 10th) I celebrated my 21st birthday and on the 11th my dad celebrated his 41st birthday. The following day we were told that he doesn't have much longer to live it could be a day or it could be a week. That night he passed away at around 3am the following morning.

Then in October on the 8th I had my routine 6 monthly colonoscopy and two days later on the 10th had a laparoscopy, hysteroscopy and cystoscopy and subsequent pelvic surgeries where it was confirmed I had severe stage IV endometriosis and due to the level of damage was placed in a medically induced menopause for 6 months while my body tried to recover.

A month after the colonoscopy, the test results of the biopsies of my colon returned and showed that my bowel was beginning to show early signs of turning into bowel cancer and that I only had months to have my entire bowel removed before the cancer fully turned and spread.

I was struggling with the news and tried to keep it to just my husband and myself as I didn't want to burden my family who were still grieving the loss of my dad, being the first Christmas without him and not to ruin anyone's Christmas I bottled it all up.

Inside I was going through the range of emotions there was:
*Anger- Why me?
*Denial- "I don't need this surgery, it will all be fine"
*Isolation- I just wanted to do it on my own without any help
*Fear- the fear that my life would be over and that I should just run away

What made it hard was when I eventually did decide to tell family about the diagnosis and impeding surgery, it was about 1 month before it was all due to happen.

Most were angry at me that I kept it from then, but there were the remainder that felt that "the surgery was uncessesary" or that "it is too drastic surely there is a better option, go get a second opinion".

But the reality was I could get my bowel removed now BEFORE it had turned into cancer OR wait until the cancer turns, have my bowel removed and hope that it was caught and removed early enough.

I felt that it was better to be preventative then to be sorry- and I knew just how 'Jenny' felt. I even cried with her, because it was that real and too close to home for me- that I felt like the show just "got" me.

The grief experienced when losing a part of yourself:


This was me hours after my surgery, (I just got out of recovery and was in ICU)

After Jen's surgery there was an episode where she grieved for what she lost-her boobs... now some reading this might be thinking "c'mon that is just ridiculous grieving over losing your boobs".

But would you believe me if I said after my surgery I grieved over the loss of my bowel?.... because I did.

I know it probably sounds weird and gross to be sad about losing your bowel, but it was that I felt a part of me was missing (although literally was) that with it I felt like I lost my independence, I grieved for the loss of my dad, and I threw the biggest bloody self pity party I ever have had. It was so emotional and such an ordeal that I had to learn a new way of what my life would be like and it was a lot to process and adapt with.

Mostly it was hard to adapt as for 21 years if I needed to 'do a number 2' I would go to the toilet and do my business, but with no longer having my large bowel I had to adapt to the idea and thought that I would essentially be going 'number 2' 24/7. 

Although it has been a few years now since my initial diagnosis of FAP or almost 18 months since my surgery, those emotions are still there.

Thank you to the writers and to Melissa Bergland....

So I thank the writers of this latest season of Winners & Losers for helping to show the real side of learning what it is like to go through genetic testing and preventative surgery, and to help people like me feel like someone simply 'gets them'.

Thanks again Melissa Bergland for your accurate portrayal of the emotions experienced.

Ostomistically Yours,
Talya

P.S has there been a show that you could strongly relate to? If so leave a comment below of the show and what made you feel so relatable to it.

Where to get help:

Like my family, if FAP is something that you are affected by or wanting some more information and support you can contact the Cancer Council who have information that can help you, and also has a heridetary cancer register that reminds you when you are due for your next colonoscopy. Find more information on FAP via their website.

Like the Gross Family, many Australians are affected by Breast Cancer.If you or someone you care about has recently been diagnosed with breast cancer, contact Breast Cancer Network Australia (BCNA) for a My Journey Kit, a free information resource for newly diagnosed women - 1800 500 258 or www.bcna.org.au.

 

 
Posted by: Talya AT 08:42 am   |  Permalink   |  Email
Wednesday, October 22 2014

Last night something unexpected happened.... Don't worry it wasn't anything bad, it was actually a changing moment for me...

And it all started with two small words that have so much meaning.

Those words were "Thank you!"

I have always felt that it was my mission or 'purpose' in my life to help someone else and make a difference to someone's life.

I would spend a lot of my free time (when I wasn't at school or work) during my High Schooling years volunteering and doing charitable work which then continued on through my time at Uni when I was studying to become Nurse. I felt that maybe this was how I was going to help make a difference.

When I started Feeling Ostomistic last year it wasn't for the attention, sympathy or pity through sharing my journey and the struggles faced, but was for a way that I can help support, encourage and empower someone who needed it most.

I knew how hard it was for me (who was 22 when I had my surgery to remove my entire large bowel) to find information and support that was aimed at a younger person as everything I found was more suited to the older population or geriatric care respectively.

So I realised that if I was struggling that there was bound to be others out there struggling as well.

I knew I wanted to help create social change and awareness that bowel cancer and issues affect younger people not just older people, but more wanting to advocate and make people aware of the importance of bowel cancer screening at any age (if you are showing signs that there is something different about your bowel habits).

But importantly, I wanted to help encourange people to not be embarrased about talking with their doctors about their bowel issues- which in our society is a big issue as people are just too afraid to find out or too embarrased to talk about it.

So last night I had a friend message me telling me how grateful she was of my blog and for making her feel encouraged and supported to go to her doctor to discuss problems she has been having and putting off.

She also wanted to make sure that I knew that it is important that I continue to share my voice and awareness- that my voice is being heard and change is starting to happen.

I didn't set out to do this blog for the grattification or praise, but it really was a moment of realisation for me that I am helping people and that my message is being heard and in return helping to save a life one blog post at a time!

If you have felt supported or encouraged from reading and following Feeling Ostomistic please let me know by commenting below (you can change your name to protect your privacy if you wish).

Ostomistically Yours,
Talya

 

 
Posted by: Talya AT 08:40 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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