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Feeling Ostomistic
Sunday, June 17 2018

 Attention:

Calling all young females (u/55) living on the Mid North Coast or Coffs Coast with a stoma, check out this exciting and new FREE event happening in August!

My stoma nurse has been excitedly organising this event and I was honoured to have been asked to design the flyer, but I was even more honoured to be asked to speak on the night as one of the speakers.

  The event is FREE and is open to all women with a stoma and under 55 from the area, if you're willing to travel you can come along, just make sure you RSVP.

  If you have any dietry requirements aside from the stoma, let the stoma nurses know and call 0266567804, that way everyone is catered to.

  The night is going to be a fun night with the chance to get to meet other young ostomates under 55's and the hopes of connecting each other to form friendships as ostomy life can be rather lonely for some.

  There will be a fun activity for all to join in and will also have reps from different ostomy companies there with samples or to speak more. Guest speakers will include Allied health professionals as well as myself.

  This event wouldn't be at all possible without the fundraising done by the Coffs Coast Crafty Crew (scrapbookers) in April 2016, as well as the hard work from the organising team of stoma nurses.

I am really looking forward to the night, and looking forward to meeting others from the area. Whether you're from Port, Grafton or in between this event is open to anyone who would like to come, has a stoma and is under 55 and a female.

Did I mention it is FREE and catered?

Can't wait and I will see you there!

Posted by: Talya AT 11:04 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
Friday, January 12 2018

I was scrolling through my Facebook 'on this day' memories when a post from this day, 5 years ago, came up.

The post was:

You see, I had a pretty MASSIVE and life changing decision that needed to be made.

I was told not long before Xmas 2012, that I had early signs of bowel cancer and that I needed to have a surgery called a total colectomy with a permanent (end) ileostomy created.

I was so scared, I was so alone and I didn't know of ANY other people with an ileostomy let alone a young person with one.

I was 21, why should I have known anyone, afterall I was ignorant and thought just older people lived with stoma bags, it was hard to fathom a young person living with one.

I ignorantly made this association as I presumed that people had a stoma at the end of their life and that their lives are essentially over.

So when I was told that I would be needing one at 21, for the rest of my life, I was really freaking out.

I tried to search for blogs about young people with an ostomy and couldn't find anyone. Social media wasn't what it is today, there was Instagram but it hadn't taken off, but there was still so much stigma around living with an ostomy and the social stigma too for that matter, that not many were sharing their lives publicly.

The media wasn't helping much when it came to sharing stories about people with a stoma either. They published such negative, fear mongering articles that had people, like me, perceiving it as death sentance or that it was THE worst thing imaginable.

But my surgeon said this to me :
"while this will change your life, it will also save it."

I met with my stoma nurse, counsellors and surgeon a couple of times to help me process the surgery. I hadn't told any of my friends or family, I didn't know how to bring it up, I knew they would have questions that I wasn't ready to answer, but I was worried about being judged.... so I decided to wait until I had to tell them, which was the week before surgery. I had so much to process as it was I just didn't need anyone else weighing in, they were pissed understandably, but they were also upset that I was trying to process such a huge thing on my own.

I had told Russ though and he had been coming to my appointments with me, as it was impacting him too. At the time I gave him the option to leave me, told him that I wouldn't hold it against him if he did as it wasn't what he signed up for, he told me to stop being ridiculous and it would take a lot more than that to stop loving me.

I couldn't have gotten through all of this and life to come, without Russ though.

He came to my appointments and asked my surgeons or stoma nurse questions, he even asked if when they teach me how to look after my stoma that they show him too so that he knew how to help. I think it was at that point I fell even more in love with him, which I didn't think was possible.

Russ said to me that it was my decision to have the surgery or not, but if it meant that this could be helping me to live as long as I could that he would appreciate me having the surgery.

So 5 years on, this is a letter I wished I could tell my scared 21-year-old self, I don't even recognise that part of me anymore I feel like this was a massive turning point in my life and I grew up A LOT in the years to follow.


21-year-old me

Letter To My 21-Year-Old Self:

Talya,

I know you have a lot that you’re dealing with right now and I know that you’re doing the best that you can under the circumstances. You are facing a life-defining decision right now, I can tell you this because I have watched you live through this.

Yes it changed your life but it saved it too.

Do you know how much pain you’re in right now and every time you go to the toilet? You probably won’t believe me when I say this, but you won’t be in agony multiple times a day. You won't even be needing to spend most of your day on the toilet either.

Do you know how you don’t leave the house, go out for dinner or stay over at someone’s house unless you know that a toilet is accessible and close by? Well, you won’t have to worry as much. You won’t be needing to quickly dash to the toilet every time you eat.

Do you know how you lost your enjoyment of food because of the above comments? You will find you can eat all your favourite and missed foods, given there are things you can’t eat anymore, but you will find you will learn to love and appreciate food again.

I won’t lie, there will be some pretty difficult times ahead, not only will surgery and the recovery be long and hard but it will be painful.

You will adapt to stoma life, but it will take time, so be patient with the process.

There will be times where shit literally will happen, it is to be expected, but trust me - you will get used to it. You will sometimes wake covered in shit, so just remember to empty your bag throughout the night and also invest in waterproof mattress protectors.

Sometimes leaks happen, it isn’t your fault, but always carry a spare set of supplies everywhere you go just in case. There will be a time where you’ll be caught out, it will be embarrassing and it will serve as a learning curve.

I know you’re apprehensive right now about surgery, but your stoma will serve to give you extra time… everyday is a gift and not a given right, learn to appreciate each day you wake up and all of the moments you have.

You don’t need to worry about Russ or your marriage, he will be there for you every step of the way. He will surprise you at how calm and collected he is even when you’re flustered and freaking out and covered in shit, even if it is in the middle of the night. He won’t mind helping with your bag changes or leaks, you just have to ask him.

He loves you for you and your stoma will soon be a part of you.

You will lose friends, because they don’t understand - it will hurt but don’t dwell too much on those who aren’t there for you and appreciate and be grateful to those who are. You will make some great friendships over the coming years too, you'll find people who embrace you for the wonderful person you are and won't be worried that you have a stoma.

Just remember what dad used to say to you and find comfort in his words offered.

The next 5 years will be incredibly tough and this is just the start of the rollercoaster ride known as life, this will be the first of many primary cancer diagnosis’ and the start of many surgeries.

Know your limits but also recognise when you need to ask for help too. Put your stoicism aside and ask people to help you, most are wanting to help they just are waiting for you to ask.

There’ll be times where you easily wished you could pick up the phone and call dad, but there’ll be times where you will draw from his presence and he will be there to guide you. I am sure he will be proud of you. 

Learn to pick your battles, know that some just aren’t worth the stress. You will come to learn to try and let everything go, everyone will always be having their own opinion or force their mindset onto you. Just stay true to yourself. Know your worth. Know that you aren’t what they think of you. 

It will be hard on your mental health throughout times over these next 5 years, there will be times where you spiral and it is important to always recognise when you need help. Find what drives your creativity, focus on writing or creating, find ways to give yourself purpose in your day.

You are about to start a blog, you are worried about putting all this out there publicly and worried about how other’s perceive you. But by doing this you are going to be helping so many, you will help save lives, you will help nurses in how they help support young people with a stoma, you’ll be nominated for awards, you will even start your own magazine for young people with a stoma and will even help others to feel less alone.

You’ll start your blog because you’re finding as a 21-year-old female that there isn’t much info out there at the moment when it comes to young people with a stoma and a blog, you don’t know what life will be like going forward, but you will feel that if you share it as you go that maybe you’ll help others who are feeling alone or worried too. You will meet other young ostomates too.

You’ll even be invited to speak about your time as a young ostomate.

But you will also get to do some fun stuff too, like catch the train to Adelaide, go to P!nk’s 2013 concert, Meet the Dixie Chicks and see them in concert in 2017, finally get to experience and see Darling Harbour, Go to Melbourne and accidentally stumble across the Offspring hospital, go swimming and do water aerobics, and do some bucket listing too. You'll finally get a tattoo too!

You and Russ will realise your house dreams in 2015 and will build a house, you’ll also have a very adorable and fun kitten who will make your days fun and full of love.

Then in 2016 you’ll need surgery to remove one of your tumours which will mean losing your stoma, your stoma will now be retracted and sit under your skin. It will leak a lot, it will be hard at times to lose all hope knowing the good stoma you had prior, but you will get through it. You will get used to daily leaks and waking up with a leak, it will affect your mood and what you do but you’ll be relatively okay.

In 2016 you will also enter palliative care, they will offer you a wheelchair - don’t decline out of pride or feeling like you aren’t worthy of it. You will learn to love your wheelchair and embrace it, just like you have your stoma.

So while you have a huge decision to make right now, I can tell you this now that you will be better off having the surgery. You will be okay, your marriage will be fine, you will love life and not fear it.

Don’t fear asking your stoma nurse for help, even if you feel it is a silly question, she will be one of your greatest supports. She has probably heard it all, you really couldn't do this without her....

But you have got this, your life will be changed but you will cope and adapt.... just breathe!

Write that bucket list now, start to see and do as much as you can and don’t keep saying there’ll be plenty of time, go travel when you’re able to and take lots of photos and always tell those you hold dear you love them and appreciate them.

Love,
your older and somewhat wiser self

P.S I just wanted to say thank you to each and every person who reads my posts, comments on social media or on here or has emailed me over these 5 years supporting my blog. Cannot believe it is 5 years later already!

 

 

Posted by: Talya AT 06:47 am   |  Permalink   |  0 Comments  |  Email
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
Thursday, December 14 2017

If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.

NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.

So in this Part 2, I will be sharing tips to help you be more prepared for the weekend

But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.

I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.

To read part 1, click here:

Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.

Part 2: Being prepared and tips to surviving the heatwave

I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.

Tip #1: Never leave kids or pets alone in a car
I know this hopefully is common knowledge, but you'd be surprised how many times I have been at the shops and found pets or kids sitting in the car while their parents or owners shopped. Even with the windows down or leaving the car running with the air conditioning going, the car is still going to be hot.

Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too. 

I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.

A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.

What to do if you see a child or pet in the car?
The NRMA advises: You must make a judgment call as to whether it is a life and death situation and you would need to break a window yourself and call an ambulance, or whether you should call 000 and ask for police, who will get there as urgently as they can (and will break the window themselves) and they will call an ambulance.

If the child is clearly distressed, do not wait for help. Instead, break a window and remove the child from the vehicle until help arrives. If you break a window, and the child is simply asleep and it turns out not to be an emergency, it is possible that you could be required to pay for the window.

You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.

For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.

Tip #2: Have plenty of water
Water is important for helping you to stay rehydrated, make sure you have plenty to drink. Consider taking a bottle of water to someone who is experiencing homlessness, they might not have adequate access to water, it might not be a lot but it is a nice gesuture to look out for someone who is at high risk of heat related illnesses.

You should drink two to three litres of water a day even if you don't feel thirsty. 

Tip #3: Have electrolyte replacement on hand
If you're like me and have an ostomy and need to replenish lost electrolytes, make sure you have enough to get you through the weekend. I try and have a 1L bottle of sports drinks, I get the powder and mix in the water, and have a few of these made up in my fridge ready. You can consult with your Nurse or dietician over what is the best option for you to replace your lost electrolytes. Due to having no large bowel I am at risk of dehydration, which is worse in Summer and extreme heat. Salts and minerals are vital for your body's functionality.

Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.

Tip #4: Stay cool
This is important, especially if you struggle with body regulation, you need to find somewhere cool. Air conditioned is preferable, if your home isn't air conditioned maybe ask a neighbour or friend if you could join them, otherwise hit the shops and enjoy their air condiitioning too. If you don't have air conditioning find somewhere cool in your house and put on a fan. You could go to the library, cinema, art galleries, cafes too.

If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.

You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.

A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.

Tip #5: Keep plenty of drinks in the fridge prepared
Fill as many bottles as possible and put in the fridge, some could be cordials or soft drinks, but limit the alcohol. Plenty of cool drinks will help keep you cool

Tip #6: Have ice packs or blocks in the freezer
Firstly, ice blocks or icypoles are a great way to keeping cool and hydrated in Summer. You could also freeze water bottles so they last cooler for longer, if you are going to the beach. Ice packs are good to keep on hand in case of first aid and if you need to aid in cooling someone down. See part 1 for how this works.

Tip #7: Keep blinds drawn
This will help keep your house cooler, even if you have air conditioning going, keeping the blinds drawn will help your system to not have to work overtime too. But if you don't have air conditioning it will still help if you have a fan too.

Tip #8: Wear light summery clothing
Avoid wearing lots of layers and wear something light and breathable, this will not only help in keeping your body cool but will aid in your body trying to regulate it's temperature. Avoid wearing dark or black coloured clothing. Clothing light in colour reflects the light better.

Tip #9: Be sun smart and sun safe
Slip, slop, slap. Sunscreen, a hat, sunnies and a shirt are not only safe ways of being out in the sun but also help in preventing melanoma. If you must be out in the sun keep out of the sun as much as possible - during a heatwave you should be minimising your sun exposure. Seek out shade.

Tip #10: Reapply sunscreen often
Even if it is overcast, you can still get burnt and when you're swimming sunscreen washes or rubs off after time, so everytime you come out of the water or as often as indicated on the bottle: reapply. Also if you do happen to get burnt, have some cooling after sun gel in the fridge to help your skin cool down, aloe vera fresh from the garden helps too.

Tip #11: Don't lie in the sun exposed
If you're planning on laying on the beach and reading a book, chances are you could fall asleep and get sun stroke. A heatwave isn't the right time to do this, seek out shelter or shade or plan your trip to the beach on a day where the weather isn't as hot.

Tip #12: in case of a blackout
It is important having items such as a torch, a battery operated fan, extra batteries, bottled water and first aid kit on hand in case of a power outage. Also, wrap medications that need to be refrigerated (such as insulin pens) in foil or place in an heat repellent container with some ice in case of power failure.

Tip #13: Open the house at night or evening if a cool change is forecast
This is self explanatory, but this might help to keep the house cool of a night or the next day if air gets circulating around, remember to draw the blinds early in the morning to keep the heat out and the cool in.

Tip #14: Pets or wildlife
Pets can be particularly vulnerable to the heat. Make sure they have shade and plenty of cool water to last the day. If you live near the bush, consider leaving a bowl or bucket of water out for any Koalas, kangaroos, dogs or cats or other animals that might want water.

Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.

Tip #15: Keep your body cool but not freezing
It is important to remember that while you want to cool your body down that you aren't changing your temperature too quickly or suddenly. You could go swimming or lay in a bath if you run the cool water before the hot to cool down. You could set the sprinkler up or a water slide, brings back good memories being a kid and having a tarp and sprinkler on the yard and having a good old time. Just remember to be sun smart too!

Tip #16: Check in on those at risk
Keep a close eye on those most at risk, like the sick, the elderly and the young (a full list of vulnerable at risk perspns is in part 1). Do this at an arranged time at least twice a day. The heat affects everyone differently and adversely, be sure to make sure they have plenty to eat.

Tip #17: Watermelon
Would it be an Aussie summer without watermelon? I love watermelon, it is full of water plus it is a good source of electrolytes too! Make it fun by using cookie cutters to make fun shapes too. If you get sick of water, maybe have some watermelon to help replenish you. Your body will thank you too, it is oozing with benefits too. 

Tip #18: Foods
Enjoy delicious salads and cold meats for dinner, while a hot meal is delicious, it will only make you sweat and feel hot cooking away in the kitchen. But with the heatwave foods like strawberries, cucumbers, watermelons, celery, tomatoes and broccoli and lettuce contain water, which can be benefitial towards your water intake.

Tip #19: Wearing a stoma cover
I get rashes on my stomach under where my bag sits against my skin, especially when it is hot. I found last year if I wore an ostomy pouch bag cover it helped to relieve the rash as it wasn't plastic on my skin and it worked as a barrier between my skin and bag. If you find you get rashes too maybe speak to your nurse as she might have some bag covers or be able to point you in the right direction to where online you can find them. I had a friend make me some. Theres heaps of options if you google too.


My cover a friend made for me

Tip #20: Mashmallows
I find when I am dehydrated or in Summer my output is more watery. It is hard sometimes to keep my hydration up when this happens, but I have some marshmallows and immodium to help thicken my output. Sometimes a watery output is a sign of a blockage too, be mindful of this as you may need medical attention.

☟ ☟ ☟ ☟ ☟ ☟

I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.

Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.

More Links through my research:
- On how medication/heat affects you:
- Heat related illnesses and what to do: NSW health
- SES heatwave fact sheet
- SES heatwave tips
- ABC heatwave tips
- Know your risk
- Heat and children: NSW health
- Cancer Council Australia slip slop slap seek
- Just 6 minutes pet first aid
- NRMA children in a hot car

If you have another tip, be sure to let me know in the comments below. To read part 1, click here

Posted by: Talya AT 10:15 am   |  Permalink   |  0 Comments  |  Email
Thursday, December 14 2017

NB: I am not a doctor or nurse, I am sharing information through my own experiences and also that of various credible sites online. The heat and how it may affect you can differ based on personal health issues, so please do speak to a professional regarding how to be safe in Summer based on your own needs. I am sharing the advice I have found and learned in the hopes it may help you to have a better awareness of how to prepare and endure the heatwave.

Here in Australia, we are 14 days into our Summer. We had a fairly non-existent Winter where we live near in northern NSW, and it honestly felt like a mild Summer. I don't recall having to wear a jumper at all and some nights we needed the air conditioning on. But temps were always around 30'c, it was so dry and warm that our grass and plants were rather dead looking - thankfully, after a lot of water and work, the lawn and garden are thriving.

But it did make me worry about the sort of heats and Summer to prepare for, and if going off the predictions for this weekend - I had a right to worry.

So this weekend, particularly Sunday and Monday, most of Australia will be experiencing temperatures ranging between 35'c to over 45'c, we are told this could be the first of many extreme heatwaves we'll need to prepare for this Summer.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

..... 14 days in to December, this is going to be a long hot Summer!

Part 1: Knowing your risk and what to do

I know you're probably thinking, "big deal just go to the beach, no biggie" - well it actually is a big deal, especially to those vulnerable in the community which includes:
The homeless
The elderly
Children
Pregnant women or breastfeeding women
Those who are sick, including those who have health conditions such as Diabetes, lung disease, breathing issues, asthma, heart disease, kidney disease, high blood pressure or who take medications that make them vulnerable
☀ Those with conditions that affect sweating
☀ People with cancer
Those with an ostomy
Those who work outdoors or in factories or hot working environments
Athletes or people who exercise vigorously in the heat
Those who are obese, overweight or aren't very mobile
☀ Those with an acute illness such as an infection, fever, or gastroenteritis (diarrhoea and/or vomiting)
☀ Those who live alone or don't have much social support
☀ Those who enjoy the outdoors including gardening
☀ Those with Mental health issues or dementia
☀ Those who drink alcohol or use drugs
Not to forget our furry friends too!

During heatwaves you can be at risk of heat related illnesses such as heat stroke, dehydration, overheating or hyperthermia, heat cramps. Heat can also worsen health conditions too. During this time the extreme heatwaves can attribute to bushfires or power outages (blackouts) too, so it is important to be prepared.

Summer and heat realated health issues and illnesses need to be taken seriously as it can lead to deaths, heart attacks, strokes and more.

How does having an ostomy put me at risk during a heatwave?
If you're like me and have an ostomy (or have had bowel surgeries before) you could be at a higher risk of dehydration and feeling vulnerable to heat related illnesses. This is to do with the loss of bowel and without your large bowel your body might not be reabsorbing essential vitamins and minerals such as electrolytes. This is why doctors and stoma nurses suggest replenishing your electolytes to avoid dehydration. So it is essential at the best of times to monitor and replenish your minerals and stay hydrated.

Then add in sweating and extreme heat to the mix and you're more susceptible to becoming dehydrated and suffering due to the heat. Aside from drinking plenty of fluids, also drink electrolyte drinks such as sports drinks or even icypoles filled with all of your delicious minerals and vitamins. Be sure to ask your stoma nurse or dietician what else you can do to help.

With the dehydration issues aside (I will share signs to look out for below) heat can also affect your stoma, such as: by your bag not adhering to your skin properly, using tapes/boomerangs these can help to secure your bags; you might get a heat rash, I know in Summer I get a heat rash where my bag sits against my stomach, I find wearing stoma covers helps with the irritation; Your output might be more watery due to dehydration, so have some marshmallows or gastro stop/immodium to thicken your output. Just remember your spare stoma kit and supplies if you do go out, just incase you happen to have a leak.

It is important to also keep in mind (during the heatwave) that if you are outdoors, doing any strenuous activities such as sports or gardening with an ostomy, you are at risk of heat cramps too. I will explain more about heat cramps below, but essentially due to excessive sweating the body loses water and salts (electrolytes) and when the salts in the muscles get really low these cause cramps. If your electrolyte levels are at risk of being low consider avoiding activities that might put you at risk of heat cramps, at least until you are rehydrated and the weather is as normal as it will be during Summer.

So what is dehydration and what are the signs to look out for?
According to NSW health, when the weather is very hot, the body has to work very hard and produce a lot of sweat to keep itself cool. During extreme heatwaves, our bodies sweat a lot, which can lead to dehydration if we aren't careful. Mild to moderate dehydration makes the heart work faster and leads to reduced fluid available for sweating.

NSW health says the symptoms/signs of dehydration to look out for are:
Dizziness and tiredness
Irritability
Thirst
Bright or dark yellow urine
Loss of appetite
Fainting

So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
☀ Drink plenty of water or diluted fruit juice (1 part juice in 4 parts water) and avoid tea, coffee or alcohol
☀ Move somewhere cool, ideally air-conditioned
☀ If possible use a spray bottle with water to cool yourself down
☀ If you start to feel unwell, seek medical advice

So what are heat cramps and what are the signs to look out for?
According to NSW health, "Heat cramps usually affect people who sweat a lot during strenuous activity (e.g. sport or gardening). The sweating causes the body to lose salt and water. The low salt levels in the muscles may be the cause of heat cramps and they can be a symptom of heat exhaustion".

NSW health says the symptoms/signs to look out for are:
 Muscle Pains
Muscle Spasms

So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice: 
☀ Stop all activity and lie in a cool space, legs slightly raised
☀ Drink water or diluted fruit juice (1 part juice in 4 parts water)
☀ Have a cool shower or bath
☀ Massage your limbs to ease spasms, apply cool packs
☀ Do not return to strenuous activity for a few hours after the cramps subside (exertion may lead to heat exhaustion/heat stroke)
☀ Seek medical advice if there is no improvement

So what is heat exhaustion and what are the signs to look out for?
According to NSW health, "Heat exhaustion is the body’s response to an excessive loss of water and salt contained in sweat. If heat exhaustion is not treated, it can turn into heat stroke."

NSW health says the symptoms/signs to look out for are:
 Heavy sweating (cool and moist skin)
☀ Pale skin
☀ Fast and weak pulse rate
☀ Shallow and fast breathing
☀ Muscle weakness or cramps
☀ Tiredness and dizziness
☀ Headache
☀ Nausea or vomiting
☀ Fainting

What to do -FIRST AID- according to NSW health:
 Move to a cool place, ideally air-conditioned and lie down
☀ Remove excess clothing
☀ Take small sips of cool fluids
☀ Take a cool shower, bath or sponge bath
☀ Put cool packs under armpits, on the groin, or on the back of the neck to reduce body heat
☀ If symptoms worsen or if there is no improvement, seek urgent medical advice and call an ambulance if necessary

So what is heat stroke and what are the signs to look out for?
According to NSW health, "Heat stroke is a life-threatening emergency and occurs when the body temperature rises above 40.5°C. Immediate first aid is very important, aim to lower body temperature as quickly as possible."

NSW health says the symptoms/signs to look out for are:
 Heavy sweating (cool and moist skin)
☀ Sudden rise in body temperature
☀ Red, hot and dry skin (sweating has stopped)
☀ Dry swollen tongue
☀ Rapid pulse
☀ Rapid shallow breathing
☀ Intense thirst
☀ Headache
☀ Nausea or vomiting
☀ Dizziness or confusion
☀ Poor coordination or slurred speech
☀ Aggressive or bizarre behaviour
☀ Loss of consciousness, seizures or coma

What to do -FIRST AID- according to NSW health:
 Immediately call 000 and ask for an ambulance
☀ Get the person into the shade, lay them down, and keep them as still as possible
☀ Give small sips of cool fluids if conscious and able to drink
☀ Bring their temperature down using any method available (sponging with cool water, cool shower, spraying with cool water from a garden hose or soaking clothes with cool water)
☀ Put cool packs under armpits, on the groin, or on the back of the neck to reduce body heat
☀ Do not give aspirin or paracetamol; they do not help and may be harmful
☀ If unconscious, lay the person on their side (recovery position) and check they can breathe properly
☀ Perform CPR if needed

I know that this is a long and comprehensive guide on the signs and symptoms pertaining to heat related illnesses and what to do in terms of First Aid, in the next post (part 2) I will talk about being prepared and tips for enduring the heatwave.

Again, I am no health professional, I have only done 2 years of Nursing, but I just wanted to put as much information out there from reliable sources to help you be more informed when it comes to the heat and Summer... especially with an ostomy or any health issue, which can make your risk heightened. Please seek medical attention and don't delay, also remember to slip slop slap!

Please be safe and be mindful of how your medications can affect you with the heat, speak to your doctor or pharmacist if you are worried.

To read Part 2, click here

 

Posted by: Talya AT 08:15 am   |  Permalink   |  0 Comments  |  Email
Friday, November 03 2017

Recently, I was asked to be the Australian writer and contributor to OstomyConnection.com which is a site dedicated to being a hub on all aspects of ostomy life.

I was asked to write an article on:
20 Aussie Ostomates who you can connect with on Instagram.
You can read the article by clicking here.

Despite there being approximately 44,000 Australians living with an ostomy, it can at times feel frighteningly lonely and friendless, especially if you live in remote or rural areas of Australia (like myself). 

When I was 21 (in 2012), I was told that I needed a permanent ileostomy due to early stages of bowel cancer. I didn’t know anyone to help me understand ostomy life, especially my concerns as a young person (moreso, a young female) and navigating/living a fulfilling life. So I sought out a local stoma support group but at the time there was a 40 year age gap with the nearest age to mine, which made me feel more alone and unable to relate to them or their lives.

So .... I turned to the internet - particularly social media - in a desperate search for proof that a life can still be lived with an ostomy. At the time there weren’t many bloggers or people publicly sharing their life with a stoma, so it was hard back then to find “your people” or someone who just got you and could completely empathise with you.

Today, Instagram has a community of over 800 million users!

That is 800 million chances to find your community that you want to connect with or to be inspired by…. After all, a friendship is born at the moment that one person says to the other “What! You too? I thought I was the only one.”

One of the perks of social media is the ability to connect people and to help them feel less alone and isolated.

Whilst I know that there are thousands of Aussie Ostomates on Instagram, here are my top pick of 20 fellow Aussies that I know you’ll not only find relatable and awe-inspiring through the lives they lead, but that you’ll also love. Each contribute vastly to ostomy life.

I look forward to bringing you many more articles.

You can read the post here https://ostomyconnection.com/news-and-culture/20-ostomates-in-australia-to-connect-with-on-instagram 

 

Posted by: Talya AT 12:54 pm   |  Permalink   |  0 Comments  |  Email
Friday, May 05 2017

NB: This post was also written to be published on abiggerlife.com

This week marks 4 years since I had surgery to remove my large bowel and to live life with a permanent ileostomy due to bowel cancer. I was 22, and until only a couple of months prior I had no idea what an ileostomy was; I naively thought that anyone living with a stoma had a colostomy and didn’t realise that wasn’t the case.

So you can imagine how much I had to learn and understandably was very overwhelmed with information.

One thing I struggled knowing was what exactly it were that I needed to not only see me through my surgery but subsequent time recovering at home and in hospital.

So I thought I would share with you my 10 must-haves on surviving the early days of ostomy life!

I wished I knew these when my life with a stoma began 4 years ago...

#1. A hairdryer:
Do not underestimate the importance of a good seal around your ostomy appliance. This is usually achieved by heating up the base plate or wafer. Sometimes I find sticking under my breast or armpit can suffice, but I know in winter I struggle with body heat. Learn from my mistake and avoid having to send your other half out at almost midnight searching for somewhere that sold a hairdryer (no joke, this is what happened), thankfully there was a chemist open and voila my bag was finally sticking. I now take my hairdryer everywhere with me, even if it is only going away for the weekend! 

p.s It is also very helpful at drying your stoma bag after a shower if you aren’t needing to do a change and require it to be dry... we also use ours in winter to quickly warm up our bed before jumping in.

#2. Invest in some supportive garments:
Not only can wearing supportive underwear help to support your stomach after surgery and help with preventing a hernia, it can also make you feel more secure and safe when you are adjusting to wearing a bag and having it sit against your skin. I found wearing high waisted briefs helped me to feel secure with my bag tucked under my undies. I even found some sites online that made underwear specifically for Ostomates like Vanilla Blush or White Rose Collection (to name a couple).

With the help from my Stoma Nurse I was able to order some hernia belts from some of the companies/manufacturers. She helped to measure me and choose the right one to suit my body and stoma.

#3. Hydration:
When you’re an ostomate and have had part of your bowel (intestine) removed, you are at risk of becoming dehydrated and lacking in certain vitamins/minerals. Not only will you need to drink more glasses of water, but you will also need to be replenishing the electrolytes lost through your output. I met with a dietician and nutritionist who told me to have some sports energy drinks and hydrolyte on hand and to have one a day. I look for the specials and will buy a few bottles at a time, but I also buy the powder to add to water and reuse the bottles that way. It is always important to consult with your stoma nurse or dietician or nutritionist to determine what will be best for you, as your body will need to replenish the important stuff that you’re losing.

In summer if you sweat more or if you are unwell with a fever or a case of gastro, you may need to increase your electrolyte replacement drinks to avoid dehydration. Again talk with your healthcare professionals on what works best for your situation.

I also find the enery drinks can also help to thicken output as well

#4. Metamucil, Marshmallows, Jelly Beans and Peanut Butter:
These are a staple to have on hand, especially if you tend to have watery output as these tend to help your output thicken. Chat with your dietician or stoma nurse to see what would work best for you. I keep a pack of jellybeans in my stoma kit, just in case I do need some urgently.

hot tip: I take a few marshmallows half an hour before a bag change, I find it helps to manage my output a little better while I am doing a bag change.

#5. Gastro stop or loperamide:
My ileostomy output has always been all over the place, but I was advised (by my stoma nurse) early into my life as an ostomate to have some supply on me. Sometimes my output can be so watery or too much output and need it to slow down or I might be unwell, I take a couple of tablets to see if things begin to settle and thicken. It is important to seek advice on if this is right for yourself by your stoma nurse or to determine how much you should be taking as you don’t want to risk being blocked up either. I have a supply of tablets in my handbag and in my stoma kit (for when I am out and about) and I also have some in the bathroom.

#6. Linen and mattress protection:
My stoma tends to leak often and sometimes I will wake up with my bag having leaked. I found it important to have a waterproof mattress protector to protect my mattress. As an added measure of peace of mind for myself I also sleep on a “Kylie”, it is this padded with a rubber waterproof underlay and any leaks I do have don’t go through to my bed. It is really difficult to change my sheets and mattress protector on my own as my mattress is so heavy, so if it is soiled I just put it in the wash and put a new one on the bed ready for next time I go to bed. I found these at a home care aid store locally, or your nurse might be able to help source one for you.


My bed with a kylie

#7. Stoma supply storage:
Where or how you choose to do your stoma appliance change is up to you and differs on personal preference. For myself, I like to sit on the toilet when doing a change. I found a craft trolley with drawers and have it set up in front of the toilet so I can easily grab things. A friend I know likes to stand near her vanity basin and in her cupboard is her supplies for easy reach and use. It is important to have everything somewhat organised, as when you are mid change it is frustrating to search for something you need, so I have plenty of stock in easy reach and ready to go.

If you want to read a post I wrote on stoma supply storage inspiration, click here!

#8.  Wet wipes or Chux cloths:
I know it is personal preference how you might choose to clean your stoma when doing an appliance change. Wet wipes (like baby wipes) are handy for when you are out and about you might be forced to change your stoma in public, and without access to water these are a lifesaver! At home you might prefer to fill up a bowl or basin with warm water and use chux cloths to clean your skin ready for a fresh change. I tried different methods at home to see what I was most comfortable with until I found what worked best for me. I also make sure I have a pack of baby wipes in my stoma kit too.

#9. Scented garbage bags:
When I was new to life with an ostomy I would be overwhelmed each time I had to do a stoma appliance change. A few months after being home from hospital, my husband thought he would help by bringing home scented garbage bags from the store for me to try and see if it helped with the overwhelm of the smell. I have since used these and they really help a lot. I have a roll in my stoma kit I take when leaving the house and another for using at home.

Here is a post I wrote about choosing to use scented garbage bags and adding them to my stoma kit.

#10. Room spray or freshener:
I am saving the best kept secret for last, but you can thank me later! I was always so embarrassed when using public toilets and the stench of my output, that I started carrying around a can of toilet odourising spray with me in my handbag…. it only drew more attention to myself. I searched for compact sprays or spritzers that I can carry in my handbag or stoma kit and spray before I empty my bag or do a change. I found mine from scentsy or Poopouri but friends have found theirs from chemists or stores that sell scented wares. I take mine everywhere and is a lot more discreet.

Here is a little post I wrote a while ago along with the room spray I use.


See! It fits discreetly inside my kit

....................................

I don’t want to overwhelm you with too much information (I could be here for days sharing my wealth of knowledge), but these are the 10 best tips I have for managing the early days of being an ostomate. 

You will be sore for a while so listen to your body if it needs to heal and rest, as you have been through a massive ordeal, even mentally/emotionally/spiritually. I wished there were sites like a biggerlife.com when I became an ostomate, it really would have helped me to adjust to life as an ostomate knowing there is lived advice to help me on my way.

Posted by: Talya AT 09:13 am   |  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
Saturday, June 18 2016

I was asked recently by a couple of readers if I could share some inspiration ideas for storing your stoma supplies that is practical, affordable and also easily reachable.

Then when I presented at a local stoma education day here in Coffs Harbour, I was asked the same question again, so I thought maybe it was best if I did a blog post with some inspiration to how I store my stoma supplies and how a fellow reader stores theirs.

Idea #1: Invest in a small cupboard
When I had my first (original) stoma I was doing my bag changes in the bathroom while sitting on the toilet. In front of the toilet is a massive gap between the toilet and the shower, so I wanted to find a cabinet to put there (like a vanity without the sink) so that when I am sitting on the toilet I can easily reach into the cupboard and grab my supplies and it had a bench space on top so I could rest my supplies and easily grab them. This cupboard I found on a local buy swap sell site for $15!

Idea #2: Invest in a craft storage trolley on wheels
With my new stoma (the one I got back in February) it is rather problematic and bag changes are often lengthy. So more for comfort than anything I now sit on the lounge and do my bag changes (I found my legs were going numb on the toilet after sitting for so long). So now I have a craft storage trolley on wheels set up beside my lounge that has a draw for each supply and it is really easy access... I got this as a gift from my dad (the last Xmas before he passed) but you can pick them up from officeworks for around $60.

 
Image 1: how I organise my supplies | Image 2: a photo from officeworks website 

Idea #3: Invest in a craft storage drawers not on wheels
These you can find at officeworks (or I am sure the reject shop too) and these are a great size to sit inside a cupboard or freestanding. They have 4 generous draws and come either in black and clear or white and coloured. They are also only $29.98 and a much cheaper alternative to the storage trolley on wheels that I have.

 
Image 1 and Image 2 from the officeworks website showing the two styles available

Idea #4: storage drawers to fit in under your vanity
A reader Belinda sent me in her nifty storage idea, she purchased a set of 4 storage drawers from officeworks for $19.98, and it is so convenient for her after she has a shower to just reach into the vanity cupboard and grab her supplies. She said the plastic dividers are movable so it can make the drawer have bigger compartments if needed.

I know it is a personal choice of where and how Ostomate's prefer to do a bag change, and I know some of these inspiration ideas might not be ideal for everyone but they work for me. If you too have a nifty stoma storage idea you would like to share feel free to send me an email or message me via facebook.

Posted by: Talya AT 02:50 am   |  Permalink   |  0 Comments  |  Email
Tuesday, April 05 2016

Stomas come in all shapes and sizes, just like us! We all have different body shapes and types and have issues when it comes to fashion.... well I know that is how it is for me.

I am plus-sized, and have been the entire time I have been an ostomate. So while the tips I share below might be helpful to some with a stoma, it might be irrelevant to others, which is just because our body shapes are different.

Here are my: 5 quick fashion tips when you have a stoma

#1. Avoid pants with button up or zip up flies
One thing I learnt early on in the game is that pants with zip or button up flies were rather uncomfortable. It could be due to where my stoma sits which was exactly where I would be trying to do my pants up, and if I were successful enough to get them done up it was rather uncomfortable as my stoma started to fill up and felt like it was going to burst.

#2. High wasted and elasticised pants will become your new wardrobe staple
When I realised I couldn't wear my beloved jeans anymore, I had to get rid of them. I have these elasticised wasted pair of jeggings (looks like jeans but are leggings) and I bought them not long after my stoma surgery. Imagine my excitement when I could wear comfortable, elasticised pants that look like jeans without the uncomfortable zips. I loved these so much that I bought myself 3 pairs, and 3 years on they are still going strong and I wear them most days. Even maternity pants are great!

#3. Find dresses that you are comfortable in
I used to love wearing tight fitting dresses that showed off my curves and boobs, but I found when I had my stoma it sometimes became noticable if my stoma filled up, but it also was a little uncomfortable as it was filling and the dress was tight. I learnt to find dresses that still made me feel feminine but were rather loose fitting around my stoma. I also like tunic style dresses that I can wear black tights and boots with.

#4. Wear PJ's that are one size bigger
I have found that by wearing bigger sized PJ's that they are more comfortable of a night when you're trying to sleep. Not only are they loose but they aren't compressing on your stoma and it has the room to fill up. I know this if favourable for me, as I find my stoma becomes rather gassy over night and sometimes in the past when I have worn tight PJ's my stoma bag exploded as it just didn't have the room to move.

#5. One piece swimwear can be more comfortable than some shapewear
I know this might sound strange and I know the whole point of shapewear is for it to be rather tight and fitting, but sometimes I find it is too tight on my stoma and I feel like I can't eat or drink as to avoid it filling up and having to worry about trying to empty it every 10 minutes so it doesn't get too full. Then I thought I would try wearing a one piece swimsuit instead, and not only does it hold things in place but it feels a little more roomy and comfortable around my stoma. Obviously this wouldn't suit if wearing a strapless dress, but it might be an alternative solution to finding shapewear being too tight.

So these are just some of my quick tips that I incorporate into my wardrobe, and it might be something you've already worked out or might help you to try something new.

But I want to hear from you, what fashion adaptations have you had to go through after you had your stoma surgery? Feel free to comment below if you have some tips that help you.

 

Posted by: Talya AT 09:25 pm   |  Permalink   |  1 Comment  |  Email
Monday, March 21 2016

Reading that heading, are you thinking "Wait did I just read that right?".

Well my friend, you certainly did.

Firstly, let me start by saying this is nothing sexual. Not that I am judging anyone who is into that sort of stuff... but my doctor advised me I needed to start fingering my stoma for medical reasons not sexual.

You might recall me complaining and sharing the recent experience of my new stoma here on my blog and on social media, and if you've been following from home you'll know that this new stoma is a bitch and is tricky and is very leaky!

One of the problems with the stoma, is due to the remaining tumour being completely adhered to the stoma it is pulling the stoma down from the surface and making it retracted.

Imagine a cone or a funnel, how you have a bigger and wider opening towards the top but at the bottom/base it is a smaller and more narrower hole.

Now imagine that small hole is under a lot of pressure and is getting smaller and smaller because it is being pulled down. 

Imagine that hole getting so small and closing up that passing any sort of waste through the stoma would become rather painful... That smaller hole is the part of my small intestine (small bowel) that USED to be stiched to the surface of my skin, and is now sitting some 5cm below the surface of what now looks like a belly button hole.

.. well this is what I am facing with my new stoma. There is a high chance that I could need corrective surgery (which might only make things worse) if it gets to this last stage.

But my doctor told me I can avoid this by doing one simple thing each time I do a bag change or at least once a day... and that is fingering my stoma!

It doesn't have to be rough or anything, but if I put my finger down into the stoma and just sit it there it should help to stretch it out. It does kinda hurt, it does bleed a little and there is often a huge gush of waste coming out.

But as much as I hate doing it I also don't want to be in the position where it will close over an become painful (or I should say more painful).

I just wish I could go back to how things were with my old stoma... I am really missing it!

disclaimer: please don't go stretching your stoma hole willy nilly without the guidance of your bowel surgeon or stoma nurses, I am simply sharing my recent experience in the hopes of helping someone in a similar situation feel less alone or feel empowered enough to ask if it is something they need to do to help their own difficult stoma.

Posted by: Talya AT 06:00 am   |  Permalink   |  0 Comments  |  Email
Saturday, October 03 2015


Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.

I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).

While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.

I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.

So in celebration of World Ostomy Day, and for those who have or are considering having one, here are my 20 pieces of ostomy advice I have for you. If you are unsure of what a stoma/ostomy is, you can read about it here in one of my earlier posts!

Stoma tips and life-hacks:
#1. Keep Hydrated
This might be something you hear a lot, but it is so important when you have an ostomy (and even when you don't) that you keep your body hydrated at all times, especially in summer. But when you have an ostomy you are at greater risks of dehydration and dehydration can also cause fatigue. I have also been told by my stomal therapy nurses to drink an electrolyte sports drink at least once a day to help replace the salts and minerals that my body is losing. I drink a 1 litre drink of this a day plus a couple of litres of water. But I know when my body is feeling dehydrated (and especially when my output is more watery I get tired, really shakey and have no energy.
Read: my tips on avoiding a watery output

#2. Your boobs become a valuable asset
An important thing to remember when doing an ostomy bag change is that in order to get the most out of the bag and to prevent leaks you need to a) have a good seal and b) you need your bag to be sticky... so whenever I do a bag change the first thing I do is put the bag I intend to use tucked under one breast, while the seal/mouldable ring (I use coloplast mouldable rings) is placed under my other boob. I sit there for at least 5 minutes before starting the back change process so that it has time to heat the glue. Reason I use my breasts is that my stomal therapy nurse in our first consult told me "placing under your boobs is one of the warmest parts of your body and makes things more stickier". If you don't have boobs you can utilise, read the next tip.

#3. Invest in a hair dryer
In all honesty, the very first time I bought a hair dryer in all my life was the first day I was home after being in hospital from my bowel surgery, I remember sitting on the toilet naked and crying as I was about to do my 10th bag change for the day, I was sore, my skin was sore and I was like "f#$% this, I can't do this anymore". My husband kept asking "what can I do to help" and as it was middle of winter and cold I couldn't produce enough body heat to keep my bags sticking... so my husband had the best lightbulb moment ever and ran over to the supermarket and purchased the most decent looking hair dryer they had (from memory was about $20) and he plugged it in and sat there heating the bags up... they became so much more sticky! I now take my hair dryer everywhere with me!

Other tips to help make your bag more stickier can be read here!

#4. You'll find many uses for your hair dryer
Apart from your hair dryer being used to make your bags more stickier, I also use mine to help dry my bag after a shower especially when I don't need to do a bag change. I am one of those people that can get a few days out of each bag so I just sit there for about 5 minutes after my shower drying my stoma bag and stomach. Also, it is great to use in winter to quickly warm up your body after a shower, I don't know about you but where I'm from it gets so cold in winter!

#5. Avoid foods that cause blockages
One thing you really don't want when you have a stoma is a blockage, trust me when it is not only painful but is rather scary. There is a list of foods that you should avoid because they don't break down or they often would in people who have all their bowel. I remember when I first had my stoma I had a craving for Hawaiian pizza (Ham and pineapple) and imagine my horror when out come pieces of pineapple whole! Same goes for peas, corn, nuts, coconut and some foods like celery and tomato also don't break down. Your stomal therapy nurse can provide you a list of foods to avoid.

#6. Avoid foods that cause winds
Foods, when you have a stoma can a bit of a nuisence whether it is foods that cause blockages (mentioned in #5) or these can cause wind. Wind, when spoken about when you have a stoma is referring to your stoma farting.. and sometimes it can be rather noisy (when you don't want to be noticed for the girl with the farting tummy), or cause your bag to fill up quickly with air (sometimes so much your bag literally pops off or explodes). Although, sometimes stoma farts can't be avoided and just happen. But my husband is so sweet, when we are in a meeting and my stomach farts and I start turning red he just makes noises or coughs to draw the attention away... what a sweet heart!

#7. Avoid drinks that cause winds
Foods aren't the only reason for wind or fart production coming from your stoma bag, what you drink also plays a big part. Foods that are fizzy and gassy or alcohol can also cause wind. I also find after I have had aneasthetic from a gastroscopy, ERCP or from other surgeries that my bag fills up with more gas too.

When out and about:
#8. Take your stoma supplies kit everywhere you go when you leave the house
This should become part of your routine, I have two stoma kits one I keep in my bathroom and the other is a smaller and discreet version I keep in my handbag. Trust me when I say that when you don't have your kit on you, you'll probably experience a bag leak. I know my worst bag leaks in public have been when I didn't have a kit on me and it was horribly noticable through my clothes. Was a horrible and traumatising experience and one that brings me to my next piece of advice...

#9. Always pack a spare change of clothes
I find if I am going to a conference where I will be gone from 8am to 6pm or when I was doing studying on campus at Uni (and can even apply for work situations), have a big day of shopping planned or spending a good part of 16 hours travelling to Sydney to see specialists and driving home, I always take a change of clothes. I at least pack one change of pants, a shirt and a pair of undies. Thankfully, I am a bit of a crazed nut when it comes to my clothes and I have 4 pairs of the same pair of jeggings and they are the most comfortable versatile pairs of pants I have ever owned, so thankfully it just looks like I change my shirt.

#10. Jeggings or any elasticised pants will become a staple in your wardrobe
I wear jeggings... there I ADMIT IT... and I am not ashamed! Thankfully my jeggings actually look like jeans and are almost as thick so you can't really tell, but I found it so uncomfortable to wear pants with zippers and buttons, as I found they always sat RIGHT.ON.MY.STOMA and when my bag would start filling up either the bag would explode and I would be left in an embarrased heap, or  it was rather uncomfortable. I love my jeggings that they are elasticised waist and can wear them up higher over my stoma and much more comfortable.

#11. Baby wipes aren't only used for babies
I know what you choose to clean your stoma comes down to personal preference, I know some prefer to buy some chux sheets and cut up to use as a rag for cleaning your stoma, or others use wet toilet paper.. but personally I prefer baby wipes for a number of reasons. Firstly, they come in handy travel packs that can fit in your handbag; secondly, they are always wet and if you are out and about and don't always have access to water it is handy; thirdly, I am sensitive to how things feel on my skin and find baby wipes are much smoother where I find cloth rags are rough and scratchy. I use huggies shea butter baby wipes and have for years. I also sometimes (when at home) sit the wipes in a small container of warm water to remove a lot of the chemicals and to water it down. But most of the time I don't bother.

Stoma kit advice:
#12. Add scented garbage bags into your stoma kit
For the first couple of bag changes I was relying on using plasic shoppings bags to dispose of my stoma bag, and my husband wanted to try something when shopping one day and found these scented garbage bags that are small in size, and not only do these help to mask the smell of the contents of the bag when doing a bag change, but if you happen to be somewhere that there isn't an immediate place to dispose of in the bin and need to carry it in your handbag, it is discreet and you won't smell it. Just double bag it to ensure one layer doesn't pierce and the contents goes through your handbag.

#13. Invest in some sort of room spray
Have you ever emptied your bag when you're in a public rest room, and you feel so embarrassed by the smell coming from your cubicle that you hide and hope no one realises it was you when you emerge from the change room? Well if you have, you're not alone. So many times I was left feeling embarrassed that things were a bit too smelly and spraying toilet spray (if you're carrying a whole can around in your handbag) can not only be bulky but just as noisy... so I have the perfect pocket sized solution for you that was given to me as a Christmas gift last year, it is a thing called Room spray by scentsy and I have it in my handbag and in my stoma kit and promise there is no more embarrassing moments in public toilets! You can read my review of it here!

#14. Always have at least 3 of each item on hand in your portable kit
I have developed a bit of a rule when it comes to my stoma kit that I have with me in my handbag, is that I have at least 3 quantity of each item in my supply kit (excluding my scissors, stoma powder). So I have three stoma bags (in case I have more than 1 leak or accidentaly pierce a hole when cutting out the hole), I have a handful of adhesive wipes and barrier wipes, a handful of the brava elastic tape (banana wafers I call them), 3 mouldable rings and at least 6 of the scented garbage bags (in case I need to double bag, or a bag gets a hole in it). Here is a guide and checklist I wrote for when packing for a holiday with a stoma!

Storing your supplies at home:
#15. Have a cupboard within a reach of your toilet
I learnt very early on, how much of a hassle it is when you need to do a bag change and you're stuck sitting on the toilet home alone and can't reach your supplies. I was lucky that I have a large bathroom which could perfectly accomodate a cabinet that fits in between the toilet and the shower, which I have filled with stoma supplies. It also acts as a bench/table for me to lay out my supplies I need to use too. And to the untrained eye, guests just think it is a towel cupboard! But I do know not everyone can have a bathroom that is as accomodating, so you could look into getting a portable trolley with shelf space underneath and a flat table like top and you can wheel it into the bathroom when you need to use it, and when it's not in use you can store in the linen cupboard or wardrobe etc.

#16. Never wait until you're on the last handful or box of supplies before you re-order
Postage can always be unpredictable here in Australia, so I find it is always best to have a buffer when you need to re-order your next order of supplies. I find once you are almost at the last box to order your supplies that way you can allow for any delays in postage arriving, or if you have any unexpected bag leaks. 

Mental preparedness and a stoma:
#17. When doing a bag change play some music
I know sometimes I get rather flustered or overwhelmed when doing a bag change and especially found this was the case when I first had my surgery. I now have it as a part of my bag change routine that I have some music playing in the background which helps me to feel calm. Others might find that by playing a movie or tv show on their ipad/TV can be a pleasant distraction too.

#18. For me, my life truly began when I had my stoma surgery
I know that it is very easy to fall into the trap of thinking pre-surgery that your life is over and that you won't be able to live a normal life once you have a stoma. I know I was guilty of thinking this way, but my life honestly was given back to me when I had my stoma surgery. Before my stoma, I would be house bound because I had irritable bowel and always needed a toilet near by but also that going to the toilet and eating was a very, very painful experience. I can now enjoy going places, going out to dinner eating foods I once couldn't eat and I have more freedom now. I have control back over my life and my bowel was no longer defining me or what I did in my life. Although there is the chance of bag leaks when out and about and there is more involved when you go 'number 2' these are manageble and long term think of the how much life you were missing out on!

#19. If he truly loves you, having a stoma won't matter
I know sex and a stoma are two taboo subjects, but just because you have a stoma doesn't mean you won't ever be intimate with your partner or husband ever again, and if he loves you he can look past the stoma and not make you feel insecure about having one. Just because you have a stoma doesn't mean you're no longer considered sexy or attractive, you just now have a new adaptation to your body. If you feel insecure or conscious about your stoma during intimacy, there is lacy bag covers you can wear or put a towel over your stomach. But no one if they truly love you will make you feel ashamed for having something that saved your life.

#20. You can still swim when you have a stoma
When I first had my surgery, I was a bit saddened during summer when everyone was going to the beach and enjoying the water or swimming in the pools, I was worried because I had a stoma that this wasn't for me anymore. I was worried the bag would fall off during swimming and would be humiliating, but when I eventually realised I can go swimming I was so much more happier. While I admire those who can rock a stoma and a bikini, I don't quite have the confidence yet to do so (or have a bikini body) but I feel more safer and secure wearing a one piece that has a lining in the stomach area and I feel this gives me more confidence when swimming and isn't a noticable giveaway that I have a stoma. I also love doing water aerobics and find it is much enjoyable for me having a stoma than exercising and sweating and my bag becoming unstuck. 

[end of advice]

While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!

Posted by: Talya AT 09:32 pm   |  Permalink   |  0 Comments  |  Email
Sunday, August 23 2015

One thing that annoys me the most about having a stoma, is needing to carry around my stoma kit everywhere I go (when leaving the house, you know... to prepare for bag leaks as there is nothing more unpleasant than walking around with poo leaking everywhere... trust me) and to be honest I don't really have the room in my handbag to carry it around what with all the bricks that I must be hiding in there, because that thing weighs a ton!

So last week I went away to the Gold Coast to the ProBlogger conference and had one of those lightbulb moments where I don't know why I never thought of this before... and it was converting a toiletry bag (that is rather small) that I got for free when travelling on the Indian Pacific train into a stoma supply kit that was equipped enough to handle at least 3 bag changes....


The small toiletry bag filled with my entire kit!

Surprisingly, it fitted everything I needed from my kit including: 3x Stoma bags (really can't forget those), scissors, elastic tape (or banana stickies as I call them), 3x mouldable rings, garbage bags (scented), my scentsy room spray (a god sent trust me), stoma adhesive powder as well as the barrier/adhesive remover wipes!


All of these items surprisingly fit!

The best thing about this is that it is compact and more discreet, and is the perfect size for my handbag. It also means that it is perfect for on the go whether at school, work or shopping and if you do have to do a bag change just remember to replenish the supplies used and it is ready for the next day out.


See! Told you it all fits (if you doubted me)

I feel less embarrased now as there isn't this big, black and bulky toiletry bag sticking out of my handbag! See the comparison below!


A comparison shot of the sizes of my stoma supply kits! Big difference now!

Honestly wishing I had thought of this years ago! And if you had and I am behind the 8-ball please don't judge me... I realise life simplifying tips and resources eventually (and then I share them with you all).

p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).

 
Posted by: Talya AT 10:45 am   |  Permalink   |  Email
Friday, July 17 2015

NB: This post contains the word 'shit'. If you'll be offended by the use of the word, please stop reading now.

Sometimes when things go horribly wrong, all you can do to keep yourself from breaking down and crying is to just laugh... this was a scenario I found myself in this week... and after all 'shit happens'.. in my case quite literally!

You see, I was invited to Melbourne this week for an exclusive bloggers workshop and was amongst the company of some of my blogging idols and heroes (even being in the same room let along being invited to the same event was pretty huge for me personally).

But what is one thing that can go wrong when you have a stoma... and something that you only ever think you're being overly paranoid about when in public?

........

........

If you guessed having a huge bag leak then you guessed correctly!

I was halfway through a 4 hour meeting/workshop when I quickly ducked off to the toilets only to realise that my bag had started leaking and was causing a bit of a mess. Of course the toilets were all the way down stairs and my stoma kit was all the way up in a seperate room (where everyone's bags and luggage was kept).. so I was sitting in the disabled toilets panicking thinking "shit, what the heck am I going to do?".

See I knew if I was in the toilet too long it might look suscpicious, or it might be even more suspicious if I ran upstairs grabbed my stoma kit, ran back downstairs and spent the next however long doing a bag change... so I realised where it was leaking and the bottom part of the bag that you close up was no longer sticking closed, so I emptied it, gave it a bit of a clean with some handtowels and ran upstairs.

I then did a bit of a McGyver trick and got the elastic tape (or I refer to them as banana wafers) and taped the bag closed.

I returned to my meeting and resumed my seat until the intermission (when everyone was mingling over wine, cheese and appetisers) I raced downstairs with my stoma kit and DID THE QUICKEST BAG CHANGE IN MY HISTORY OF HAVING A STOMA. No joke. It was the quickest change I have ever done, and thankfully no one noticed I had gone to the toilet for a second time in only a short period of time.

But it made me realise that I could have been better prepared and in hindsight I realise how, and I hope to share 5 ways to be better organised for when shit strikes...

5 ways to be better organised for a meeting/work when your stoma bag leaks

#1. Inside your handbag, briefcase or laptop bag have a seperate clutch or toiletry bag, that is dicreet and doesn't look like a toiletry bag and inside have enough for 1 bag change. So when you need to duck off to the toilet just grab your clutch and own how discreet you're being. Even if you don't have to take care of a bag leak, at least then you are prepared for when the moment strikes and you need to transform into a stoma bag changing Ninja!

#2. Always get to your meeting earlier than expected to so that you can allow time to go to the toilet and empty your bag, as nothing is more embarrassing than trying to excuse yourself from the meeting and as your bag is full and you apply pressure standing up your bag more or less bursts and it can be rather embarrassing (this has happened to me before when I was studying on campus).

#3. Always have a change of clothes or underwear with you. This one can be a bit hard if you only have a small handbag, thankfully I have a larger tote style handbag that is big enough to fit a change of clothes in. But if you have a locker at work or school/uni always have a spare change of clothes on hand, so that you are ready for when you have a bag leak and you don't have to go home in poo stained clothes, or sit in soiled clothes for the rest of your shift.
TIP: If the toilet in your bathroom at work has a cabinet under the sink, leave your spare change of clothes wrapped up in a plastic bag or within an enviro bag so that you don't have to walk all the way out to your desk to retrieve your clothes, it can help you be more discreet. The same can go for places where your meeting or workshop is at, leave your stoma kit/change of clothes in the cupboard as a precaution. Just remember to collect it before you leave!

#4. Always carry some scented garbage bags in your handbag and stoma kit, so that if you have to dispose of your bag and there isn't any bins around and you have no choice but to carry your soiled stoma bag in your handbag until you can find a bin to dispose of it in.. at least it will help mask the smell a bit. Just soon as you find a bin, dump that shit (LITERALLY).

#5. If you have had to leave your meeting and people notice you have been gone for a length of time and start commenting (and rather then saying what really happened, unless you want to) just pull out the period card... no one especially men will ask more questions and your female co-workers will just look at you with an empathetic tone that says "I totes get how you feel".

I really, really hope that no one finds themselves in any situation where you have a bag leak in public, let alone at work or in a meeting. But I hope that this guide helps you to be better prepared for the worst case scenario. And by having these measures in place, it will help you to be more calm and collected when the 'shit hits the fan' and also helps put your mind/anxiety at ease.

p.s have you ever found yourself in a situation where you had to do a bag change or had a bag leak and it was the worst possible timing? If you are brave, feel free to share your story in the comments below. You can always post 'anon.' by simply writing this instead of your name.

 
Posted by: Talya AT 07:47 am   |  Permalink   |  Email
Monday, January 19 2015

 

I try and be as ostomistic as I can about the whole 'having an ileostomy' thing, and never try and say that I hate it (because truth be told it is SOOOOOOO much better then sitting on the toilet in agony for most of the day). But there is one thing I absoloutley HATE and feel embarrased over, is the stench that is left behind when I empty my bag.

If you have read my post of the 10 things they don't tell you when you get an ileostomy, you would know my 4th tip was that "your output will smell horribly", which it does. I made a comment about how you should "be prepared to have many cans of air freshner, and one in your handbag" for when your out and about.

So I must admit I have tried the whole taking a can of toilet spray with me in my handbag when I go to the shops, and boy has there been some awkward stares when you are at the checkout line rifling through your handbag to find your wallet when out falls a can of toilet spray or as my husband likes to refer to it as "the stink be gone can", and you have to try and justify THAT YOU ARE NOT STEALING TOILET SPRAY... let's just say shit gets really awkward.

So what if I told you that I have found the perfect addition to your stoma kit, that not only will it not cause awkward or embarrasing stares, but will at least help you retain some of that dignity (that is otherwise flushed away).

Introducing the Scentsy Room Sprays!

For Christmas, my husbands mum and sister had made up this cute little basket filled with all these delicious smelling products, and one of them was a Bora Bora Blossom Room Spray. So when my mother-in-law mentioned well gave examples of times where it has come in handy and after seconds of spraying the mist the house smells so much nicer and the smell has completely faded away...

So of course my darling husband pipes up and says "Oh that would be awesome so you no longer stink up the house" (gees thanks Russ I love you too) it actually gave me a great idea for its use.

So off I went to add this spray to my stoma kit, and it is amazing! I spray it just before I empty my bag when in a public toilet (or at someone else's house) and then again once I have finished to be safe. And I love it!

It is compact and not bulky, it is discreet in the sense that it looks kind of like a body mist or perfume, AND IT IS SILENT!! No more of this "shooooooosh" sounds from the toilet cublicles as I spray the smell away, and no more waiting until everyone leaves the toilet before I emerge to avoid those judgemental stares!

Best of all, it is only $12.25 and comes in a 80ml bottle, and as you only need a couple of sprays/squirts at a time, you won't run out in a hurry!

Oh and did I mention it comes in a large variety of scents too?

Seriously though, this is my favourite item in my stoma kit!!

 
Posted by: Talya AT 01:01 am   |  Permalink   |  3 Comments  |  Email
Sunday, January 18 2015

 

Are you looking at returning to studying on campus this year?
Do you have a stoma and worried about if this will affect your studies?

Well believe it or not that was some questions I had this time last year. I had just found out I had been accepted into a course I have been wanting to study for a few years and was worried how I could manage full time study as I now had a stoma.

So I thought I would share with you some tips/products I found that helped make my life easier when studying on campus, and a few of you have been emailing me this same question, so thought I best do a post for you all.

Sharing my 10 tips that made studying on campus with a stoma easier!

#1 Meet with the course coordinator or support officer BEFORE the study term kicks off
For those who know me, know that I am a very stoic person (some say stubborn) and I haven't quite grasped the concept that IT IS OKAY to ask for help. 

I started studying last year and tried to get through the first few weeks before I realised that I needed help. I was finding that for 4 out of 5 days each week we would be in a classroom that was small and it was cramped, but I was in pain for 6 hours a day because of the desks. There were some desks that sat right at the height of my stoma and really pushed against my stoma all day and it was uncomfortable and painful, and don't get me started on the chairs. The chairs were cutting the circulation off in my legs/feet which since I first was diagnosed with pancreatitis I have had issues with my feet swelling, so this only added to the pain and discomfort felt each day in the classroom.

After a few weeks I worked up the courage to meet with the course coordinator to see if there was any chance that there could be accomodating desk and chair in the room that I can use. I had these arranged, but the people who were in my class became a bit judgemental about it all so I felt uncomfortable to return to class (so I instead changed to an online campus as it became too upsetting).

So I suggest before you start studying on campus, that you meet with someone and ask to check that the desk and chairs in the room are accomodating to you having a stoma and won't cause you any discomfort. It would have been much easier at the beginning of the course for me if this was in place to remove people asking questions later on.

#2 Find the right bag/backpack
One thing that is super important when studying on campus is making sure that you are supported in not only facilities at the campus but also in having the right and essential items to help you get through the day.

I am sure by now your doctors and stomal nurse has discussed the importance of hernia prevention and practising techniques that will help eliminate any chance you get a hernia, after all having a stoma will increase your risk of developing a hernia.

One way you can do this is by finding the right backpack that not only is comfortable to have on your back, but is also at the right height too. You want a bag that doesn't cause your back to hunch forward.

Some tips to remember when choosing a backpack:
* Make sure the bag has 2 even straps, this helps to distribute the load evenly. Bags with 1 strap can cause damage to your neck, shoulders and back.
* Choose a bag that fits you and is appropriate for your body size (weight and height), the bag should rest comfortably on your back
* The bag should have adjustable straps and buckles to allow the bag to be lowered or heightened into the right position
* The centre of mass should be at weight height not higher or lower
* Opt for a bag that has a waist belt, so that your bag can be closer to your body when moving/walking to prevent injury or strain
* Straps should be padded and wide to help distribute the weight, also easier on your shoulders and waist

#3 Don't have a heavy backpack
So we all know what happens when you are studying whether as an adult student or as a student in school, that you have so much to carry each day between books, lunch box/drink bottles. But if you carry to much in your backpack not only will you likely cause yourself back damage but also run the risk of herniating your stoma/abdomen (remember that after all you DO need to be wary).

Last year, I knew I didn't want to run the risk of a hernia or damaging my back while having my backpack full of text books and what not, so I invested in getting a zippered folder that had a binder inside to hold my books in place, and also had enough space for my text book too. I carried this around with me and it wasn't too heavy either and it meant there was less in my backpack. I got mine from PB TEEN in the US and had it shipped to Australia, as I had spent a good 2 weeks searching for one that I liked in stores and online in Australia and kept finding boring plain black leather ones.. don't get me wrong if you like that style then that is great, but I like things to be a bit of fun and eccentric like me. Postage was great and I had my new folder within a week or so.

If you don't fancy carrying a zippered folder (compendium) around, you can always look into a backpack on wheels so you can wheel it around... also helps remove the heavy backpack issue too!

#4 Packing your stoma supplies
There is one thing you should always do, and that is every time you leave the house make sure you pack your stoma kit. The last thing you want to do is be on campus stuck without your supplies in the even that you had a bag leak or accident. I got a nice toiletry bag made for me (but you can purchase these anywhere, even an insulated lunch box works perfect) and inside have enough supplies for a couple of bag changes. I also have some scented garbage bags (read my review/reccomendation here) and also a clean pair of undies in case the others are accidentally soiled.

If you are unsure of what to pack in your stoma kit, download our FREE packing checklist guide here!

#5 Invest in a diary
One thing I have learnt the last couple of years is that my memory IS NOT what is used to be. I have found it only got worse after the 6 month course of being in a medically induced menopause, and even noticed that with having a stoma I have troubles remembering things which could be linked to being anaemic or deficient in vitamins and minerals (as my body is not absorbing these as much anymore)... Although my husband is somewhat disappointed that I still recall enough to win a disagreement and to prove my point.

But I found by having a diary I could write down things I needed to do for each class and as homework, but also is useful to write in reminders for assignments too! 


I got this really pretty and thorough diary from Typo and it is so elegant that the pages are lined with gold. Just a lil' bit fancy (really need to pronounce it like fun-cay, you know how some like to call target tarjay).  I think this was around $30 or less.

#6 Pack your lunch each day
I know how tempting it is to have that little bit extra sleep of the morning, and just how much of an inconvenience it is to pack your lunch when you can just buy it from the cafeteria/canteen on campus.. 

Well not only can studying be costly, but if you can help reduce costs each day, your wallet will be better off! And besides if you pack your own lunch not only do you know what is in your food, but you can save time standing in line trying to decide what you can eat or what won't disagree with your stoma.

Wanting some great and nutritious lunch box tips and ideas? Then read this article by Mum Central, which has 5 fresh ideas for your lunchbox.

#7 Keeping your lunch and snacks fresh
If you have read the above article and are planning on packing some fresh food, or foods like yoghurt you want to keep refridgerated and cold, you would be needing to ensure that your lunchbox stays cold enough.

We all know that foods that sit in lunch boxes can sometimes not look or be as fresh when it comes to lunch time if the lunch box is not kept cooled enough, which can also lead to causing upset stomachs (which we don't want).

So what if I told you that I came across this amazing product last year that was a refridgerated lunch bag that literally kept my food cold, fresh and appetising for up to 8 hours! Would you believe me? Well you better, because the Fridge-to-go lunch bags (as the name suggests) acts as a fridge on the go. It is pretty innovating how it works, by putting these panels (look like lunch box ice cubes) in the fridge over night, then putting in the lunch bag in the morning, and it keeps your food cold all day! Seriously was the best product I had last year to help me survive on campus study! They also have a FREE ebook on fresh lunch box ideas if you subscribe to their mailing list too!

Trust me when I say there is nothing worse than a  yucky, hot, salad at lunch time.

I purchased the mini fridge cooler bag as it had more room and loved it!

#8 Keeping hydrated through the day
One thing that I know I need each day is a litre of electrolyte sports drink (like Maxx, gatorade, poweraide etc) to help replace the fluid and electrolytes lost throughout the day. 

When I started studying on campus last January it was so hot around 36' each day, the classrooms had no airconditioning and everyone was sitting literally shoulder to shoulder with some sharing a tiny desk. It was hot, it was gross and it was making me feel sick. Read some earlier posts on hot to manage living with a stoma in summer heat here.

So for me there is nothing more refreshing than a nice, cold beverage on a hot day, so rather then having to freeze my drinks to ensure they stay cold all day (which sometimes when you NEED them they are still frozen) I purchased the wine cooler fridge-to-go bag, which fits my 1LTR electrolyte drink in perfectly! So not only is it good for keeping wine cool but also drink bottles too!

I remember waiting at the bus stop at 3.30PM after classes had finished for the day, and pulled out my drink bottle and it was still cold and felt refridgerated. It was so REFRESHING!

#9 Don't drive each day either take public transport or car pool
One thing that helped me to be more organised each day was taking the bus to uni/TAFE. Not only did it save on the stress of trying to find a car park than walking a mile to get onto the campus, but it also helped me to save money on petrol costs. 

#10 Purchase a power bank for your phone
If like me you use your iPhone (or other phone) all the time, then you would know how frustrating it is when the battery runs low and you are waiting for an important phone call/email/text.

I went into my local electronics store and purchased a power bank charger for my phone, which has been an absolute lifesaver on a number of occasions! Simply charge it up the night before, then put it in your bag when you leave the next morning. When your phone starts running low on the battery grab the USB cable and plug one end into your phone and the other the charger, and watch in awe as this contraption with NO power source is charging your phone up!

I purchased mine (a pink one) from JB-HIFI for around $40 and I take it everywhere I go when I am out and about, and when my phone starts looking tired and sick I just plug it in and give it a fresh bout of life!

I really hope that these 10 tips that helped me to study on campus with a stoma help you too!

P.S if you have a question or issue you want help/advice on, please send through an email from my website or a message via my facebook page. If my blog has helped you in any way please let me know!

 
Posted by: Talya AT 08:29 am   |  Permalink   |  Email
Wednesday, December 17 2014

 

We all know that one person in the family that no matter where you go, they always forget to pack something!

In my family I am sure they all would say that person is me... I swear sometimes I would forget my head if it wasn't screwed on (lol).

I went away last weekend and in a rush packed my overnight bags and restocked my stoma supplies.....

I was in a rush and was rather fllustered and thankfully didn't have a bag leak as I just realised I grabbed the entirely wrong stoma bags!

So it got me thinking how many other people with Stomas are finding themselves stressed, flustered and overwhelmed in time for Xmas, and especially those who are heading away for the holiday season.. so I decided I would create a check list printable for you to download, print off and pack your bags.

Just like Santa, we need to make a list and check it twice!

I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!

If you too need a checklist of what supplies to pack, to help make things more enjoyable and easier this Christmas, then click here or on the image to download your FREE checklist.

If you think I have forgotten or left anything off the list please let me know!

Have a lovely Christmas, and don't forget to enjoy and cherish those loved ones in your life.

 
Posted by: Talya AT 01:48 am   |  Permalink   |  Email
Monday, November 17 2014

I must admit that I hadn't always been much into eco side of life until the last couple of years.

Don't get me wrong I have always re-used, recycled and repurposed many things but wasn't until I was looking at returning to studies and looking for a lunchbox and lunch bag did I really start trying to practice more eco friendliness.

As you might be aware I have FAP (Familial Adenamatous Polyposis) which is an inherited cancer causing condition.

So as you could understand I am all about trying to reduce my susceptibility to cancer, so I made the decision to use bottles, containers and lunchbags that were FREE from BPA. I mean after all if something like a bottle or container is touching my food, I want it to be as safe as possible.

Now I know that the whole BPA issue is a controversy to many, please know this isn't the place to have the debate.

So imagine my delight when I learnt that there was a small business Little Shoppers on the Central Coast of Australia that not only was dedicated to providing eco friendly solutions for you and your family, but have come up with bamboo baby wipes that are affordable!

If you have been following my posts for a while now you may recall me mentioning a little stoma/bag changing tip I had was that I prefer to use baby wipes on my stoma and cleaning of the skin/area during a bag change.

Well, I had the priviledge of testing out a tester/sample pack of the bamboo wet wipes myself recently and these exceeded all my expectations.

I thought I would wait until my next bag change to test these out, and boy they worked wonders!

They were not only soft on my skin, but they were quite durable and thick too! I can tell you they did a fantastic job at cleaning and I didn't have to scrub hard at my skin to alleviate some of the waste, it was really surprisingly gentle.

I will warn you though that if you like using baby wipes for the perfume and scent, that these won't smell like lemon fresh or shea butter... these smell like, well BAMBOO!

Did I mention that these are pretty affordable too? They have a special offer of $2.50 a pack of 80 bamboo wipes when you purchase a box of 18 packets! What a bargain!

Normally when you hear bamboo you straight away think of the hefty price tag that comes with it but these bamboo wipes are not only good for your baby (or in my case my stoma) but good for your wallet too!

If you want to check out their range of bamboo wipes, click here to visit their online store!

When it comes to doing bag changes I can't help but feel guilty about disposing of my used stoma bag in the garbage bin (tied securely in a plastic bag). I just know there isn't more environmentally friendly options to dispose of our used bags, kind of like disposable nappies, but using these bio-degradable and bamboo wipes makes me feel like at least I am turning a shitty situation into at least a positive in helping the environment.

Ostomistically Yours,
Talya x

 

Disclaimer: All views expressed in this blog are that of my own. This post/review wasn't a paid sponsored post but a post shared on a recent experience when using the product. The product was kindly supplied towards goody bags for a recent charity fundraiser, one of which I received and had the sample packet of wipes in it. On occasion I do receive products or services in exchange for a blog post/review. I will only ever post reviews of products that I love and use and know it would be of value to my readers. I won't post negative reviews.

 

Posted by: Talya AT 08:46 am   |  Permalink   |  0 Comments  |  Email
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
Wednesday, April 02 2014

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

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

1) You will no longer have a belly button

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

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

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

3) Your stoma will look hideous

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

4) Your output will smell horribly

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

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

5) Take spare supplies with you everywhere you go

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

6) Some foods will come out whole

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

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

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

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

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

9) Having a stoma and having sex can be awkward

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

10) Output kind of looks like toothpaste

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

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

 

Posted by: talya AT 08:56 pm   |  Permalink   |  1 Comment  |  Email
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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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