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Feeling Ostomistic
Monday, August 20 2018

I think this title is appropriate as we were served chicken for dinner at the awards night, sorry just being cheeky.


Me holding my award and framed certificate

On Friday the 17th of August, Russ and I drove up to Brisbane to attend the 2017 Great Comeback awards held by Convatec. I know we are in 2018, but it was 2017 when I applied and so the award is for last year but it is in this year which is confusing, but anyway, I won!

I was 1 out of 5 finalists from Australia and New Zealand.

It was such an honour to have been made a finalist, and I was incredibly shocked and surprised to have found out on the night that it was me who had actually won! There were so many deserving and inspiring finalists who have incredibly powerful stories to tell.

On the night at the awards ceremony, which was held in the brand spanking NEW boutique hotel called Emporium Hotel South Bank (I am dedicating a whole separate blog post to this, so stay tuned), there were video interviews of each of the 5 finalists presented. Each video is around 2 minutes long and consisted of images or videos being added in to share in the impact of the story.

I was in tears watching the videos, then mine, which was last to be presented, had me in a complete blubbering mess. I was so embarrassed as it was MY story and I know this sooooo well so it surprised me that it impacted me the way it did. I assume it was a build up of emotions felt on the night, I was incredibly anxious but I was also very overwhelmed, so once the tears started I couldn't stop.

I am sharing my video to facebook, but it is available on youtube too and will embed it below at the end of this blog post.

Please keep in mind that the original video was 22 minutes long and was chopped down to 2 minutes for the ease of viewing, so a lot of important points I made were missed. I did also thank my friends and family and also those who read my blog and  my tribe who encourage me (you guys), so I don't want anyone to be upset if they didn't hear it mentioned (because it was).

If you have an ostomy, or know someone with an ostomy who has a story to share and have done something inspiring or had a comeback post ostomy life, please let them know about the awards. It could be something like pre ostomy life you were too sick to travel so once you had an ostomy you travelled, could be you returned to work, you did something you have always wanted to do, you started a movement to inspire others, you went back to uni and graduated, or you found yourself and the joy of life from having an ostomy.... or it could be whatever your heart desired that you feel you made a great comeback thanks to your ostomy.... 

The Great Comeback is entirely your own comeback after ostomy life and could be anything, or could be a number of things, it is different for each person.

To apply you need to submit your story via the site, you do need to include certain aspects of your story pertaining to:

  • How life changed or was affected by your/their medical condition and having an ostomy
  • How you/their Comeback was achieved and the positive effects that have resulted
  • The role that others (family members, nurses, surgeons) played in your/their Comeback
  • Any current activities or interests that you/they are now able to enjoy or participate in, and any specific dreams or goals that you/they have accomplished or wish to accomplish in the near future
  • The learnings or advice from your story that others might find beneficial

I wrote my story out first in a word document and then copied/pasted it in the appropriate sections. I used the aforementioned topics as headings for each part of my story.

**Please note: the drop down box doesn't have NSW available to be selected, they are aware but have said to choose any state but write somewhere that you are from NSW. They are in the process of fixing this error up along with updating their site too.

If you have a stoma nurse who is amazing and deserves to be recognised, please nominate them too! 

If you have any issues with your or your stoma nurse nomination, please reach out to convatec directly via email

My video:

I do encourage everyone to apply, the program is a great way to not only share your story but to meet other members of the ostomy community. The awards are all about empowering and inspiring ostomates that there is still a life to be lived and enjoyed after surgery. I had a lovely night, which I will share in more detail in a blog post to come. 

Thank you to Convatec and the judges for choosing me as the 2017 winner and I can't wait to see what is to come.

 

Posted by: Talya AT 12:52 am   |  Permalink   |  Email
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, 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
Sunday, December 10 2017

You don't need me to remind you that Christmas is around the corner and fast approaching, I am sure everytime you step into the supermarket you're reminded with visual cues.

But just in case you live under a rock.... there are exactly 2 Sundays left until Christmas.

so #keepcalm, don't panic - you've got this!

I have always had this dream of hosting Christmas one year, not realising the full extent of what that might involve, I naively and dutifully spent time preparing and getting the house and ourselves ready last year - as it was indeed my turn.

As my family live 2 hours away, this meant they needed to travel up the night before (for those who stayed the night) or the next day (for those who didn't stay). I am the oldest of 10 kids, then there are our partners and now nephews, so there were a lot of people coming for the couple of days.

So here were the things I did to help myself prepare and get ready for having guests over the holidays or throughout the year, based off of various guest's experiences or feedback over the past year....

My 10 top tips to getting ready for guests at Xmas time: 

#1. Ensure there is plenty of toilet paper:
It is just usually my husband and myself, so we buy our toilet paper from Who Gives A Crap which is good stuff for your bottom and the environment, plus every roll of paper goes towards giving someone access to a toilet for a week. Living with bowel relatable illnesses for years, I know how important proper sanitary access is.

So a normal shipment lasts us 3-6months, but as we were having around 15 extra people in the house we decided to order our shipment early and have toilet paper supply at the ready.... last thing we wanted was on Xmas day to run out and the shops are closed. I felt a little less stressed knowing that we had ample supply.

#2. Knowing the meals or menu ahead of time:
A month before Xmas I had finalised the meal plan and menu for Xmas day, I had spent the month beforehand getting input from family attending on the day and curated a menu that I then knew was to everyone's liking. I asked people to bring their own alcohol or seafood, as everyone has their own preferences and that shit is expensive, so this helped me to stick to my budget too.

By having the meal organised ahead of time it meant I could shop where items were on sale and could get things such as soft drinks when on sale and kept aside. I just had to get the fresh stuff like bread rolls, meats and salads Xmas eve.

By also knowing what I needed to grab Xmas eve it made a quick dash to the shops a breeze, we even had to get the wheelchair out, but we had a list, we checked it twice, and we were in and out of there in a jiffy. 

Yes, I designed and sent out a flyer for Xmas day - I informed the menu plans, what they needed to bring, accommodation options and also offered to wrap presents... I think the last part people may have thought I was joking about. But Talya doesn't joke when it comes to wrapping presents - I love it!!

#3. Prepare things before Xmas day:
I am unable to stand for long periods of time, so cooking is something I delegate to Russ nowadays as it gets too painful and tiresome. If I can prepare things seated, I will. But knowing my lack of energy and ability to cook I knew I couldn't be the host slaving away in the kitchen all day and as a result missing precious family time.

So I had most things done the night before in the fridge, then I spent some time in the morning quickly doing the salads and cooking some foods. I was lucky and grateful that my family did most of the cooking for me, it made the day less stressful.

#4. Ensure your guests have easy access to items:
I know when I have been a guest at someone's home, I always felt awkward when asking where things were such as toilet paper, towels, soap etc. So keeping this in mind, I tried to make my guest's stay easier.

I know if I am resting people don't like to bother me, but I know this is out of a place of courtesy and caring but also they don't wish to be a bother. So I tried to organise my guest bedroom and bathroom with this in mind too, trying to keep people feeling welcome and at ease is important to me... as I do hope people come and stay again.

So in the room I have a basket of various toiletries and items I have collected throughout the years. Whether it is hotel soap or shower caps, or a pack of disposable razors, or pads/tampons, or even sunscreen and aeroguard. Most items were on sale or as part of a 3 pack and were naturally spares. I also have toothbrushes too, in case a guest forgets theirs. I also have spare heatpacks too.

I hope that by having all the items one may need readily and available to them, that it might help offer dignity to their stay.


The basket looks more full now, but this was the first items put in there. I just add things when on sale etc.

#5. Have plenty of towels available:
When you have over 10 people staying in your house, you need a lot of towels!

I spent the weeks leading up to Christmas re-washing our spare towels (they had been in storage since the move) and made sure that these were fresh and in ample supply. I gave at least 2 on the bed for each guest (in case one was needed for hair), along with a face washer, soap bar, and had all of this ready for when they arrived.

In the linen cupboard were 50 more towels ready, we just wanted them to be prepared.

#6. Have empty and clean bins near all toilets:
I found this tip on a blog by Rebecca Senyard who blogs at "The Plumbette" which said to save your plumbing this Xmas, to have an empty bin near your toilets for guests to dispose of sanitary items. I was shocked to think people flush them, and as a home owner, I would hate to foot the bill to repair the plumbing (especially over Xmas) because something blocked it. Gross!! So to avoid this fiasco this Xmas pop a bin nearby, if you already have a bin there just be sure to make sure it is empty before guests arrive! This again helps your guests to have dignity when they visit too!

#7. Have a toilet plunger, toilet brush and spray ready too
As important as step #6 is, this one also applies. Guests may require the use of a plunger, toilet brush or spray, so make sure you have your bathroom stocked and ready for guests this Xmas. Saves them the embarassment of needing to ask.

#8. It's okay to need 'me time' and step away for a breather
I am a person with high functioning anxiety, I tend to get overwhelmed very easily and even around my family or in social settings sometimes I don't say much or I just say drivvle because my brain just freezes and I just don't know how to act or what to say. I tend to be over analysing every word said, every social cue, what someone is thinking of me, and this is rather tiresome.

It can be hard when you're hosting Xmas or any event as it is your house and everyone is there or everywhere, you tend to feel a bit overwhelmed. It is important to have somewhere in your house that is YOUR (underline YOUR) space and somewhere that is off limits to everyone. You might not necesarrily make this a known no-go-zone or add signage to the door, but as long as you know you have somewhere you can escape to it will help you.

I love my family, I love spending time with them, but there can be times where I need to just disappear for 5 or more minutes for my ability to keep calm and carry on, so when it is at your house it can be harder. So have a space where you can just be alone to regather your thoughts or to practice mindfulness techniques or to just take a breather... it is important to know your own limits too. This can be a form of self care too.

#9. Have a fan or cooling option available, especially if it is summer
Here it can be pretty hot and muggy (humid) around Christmas or Summer, so while we have ducted air conditioning, we also have a pedastal fan in the guest rooms to have options to what makes them more comfortable. It is hard sometimes in Summer to get a good night's sleep, so if you have a big day planned your guests might need plenty of rest.

A fan is good too, as sometimes people have trouble sleeping away from their own beds and a fan offers white noise which may help them to feel calm or relaxed, even if the fan is kept in the cupboard in their room for example, it gives them the option of not having to ask or be embarrassed because they need a fan.

#10. Have fresh linens on the bed ready when guests arrive
When you know you have guests arriving, especially if they are having to travel, having their beds already made with freshly washed linens will help them to retire early if they are tired without the delay of waitiing for sheets to dry or the bed to be made; and by having the bed ready to go when they arrive, your guests can rest whenever they need to without the embarassment of needing to ask. I know when I travel I am in pain and I often just want to have a nap, so it helps to have this all ready for them when they arrive.


Dusty loves when people visit - as do I!

bonus tip #11. Have plenty for your guests to do
I know not everyone likes to be social 110% of the time, so we have tried to have things that people can do if they wanted to. Whether it be a TV in their room to watch their own TV shows (my MIL always watches Star Trek or Castle box sets when she visits) and having a spare TV means we aren't bothering each other with our own shows. We also have a board games cupboard with a massive range of games, not to forget our book shelf with heaps of books, or our large DVD collection. We also got some toys for when young children visit and to keep them occupied.... we have bikes and spare helmets, a dart board too, we have so many different things that we hoped guests won't find our place boring... we aim for fun yet inviting, so it is a work in progress!

So while I know there are plenty of ways to help prepare yourself and your house for guests, whether it is the holidays or anytime during the year, these are just some of the ways I have tried to ensure my guests had a good time when they visited.

Wishing you a lovely holidays, hope that you have a wonderful time with your family or friends and thank you for your support during this year and beyond, it really means so much to me! Every comment, message or email doesn't go un-noticed and are very appreciated.


Merry Xmas and a Happy New Year from my family to yours (2016 photos)

p.s what other tips do you have for getting your house ready for guests or to ensure guests have a good stay? Let me know in the comments

Posted by: Talya AT 09:31 am   |  Permalink   |  0 Comments  |  Email
Monday, November 27 2017

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

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

I also feel mega proud right now!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy Father's Day dad.

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

 

 

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

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

 

 

Posted by: Talya AT 11:01 pm   |  Permalink   |  1 Comment  |  Email
Saturday, September 03 2016

This blog post was written as part of a competition sponsored by ProBlogger, Shoebox Timeline and The Good Guys.

When you meet someone and after they've learned that I am a blogger, one of the first questions they ask is "why did you decide to start your blog?".

I smile, and ask how much time they have.

In short, I started my blog because I was 21 and just found out that I had early stages of bowel cancer and that I would be requiring surgery within the coming months to remove my entire large bowel and that I would live the rest of my life with an ileostomy (an opening in my stomach that essentially becomes my anus and does what anus' need to do).

So I was struggling to understand how I could live life as a young female with a stoma, and how will it change my life (other than how I now go to the toilet). I was scared, I felt alone and in all my research I could only find material and resources aimed at the older & retired generation.

I had questions about being intimate, sexuality, body image/confidence and even fashion. But I either felt embarrassed to ask my doctors or nurses or I was thinking "they're not young they mightn't understand the importance".

I decided to change that, I knew if I was struggling to find relatable content then surely others must be too.

I microblog on my Facebook page as well as blogging here and I talk about issues with my stoma such as skin health, dealing with leaks or ways to help make my life living with a stoma a little easier; I share fashion tips I have learnt along the way as a plus sized young female with a stoma; I talk about body image and addressing people's comments when they tell me that I am "gross" or asking "how does your husband still love you"; and I also talk about ways to help make each day better, such as how I add happiness into my day

I also write about other areas of my journey or life that might help inspire others who are chronically sick, or have a loved one who is in hospital or isn't sick but wanting to feel motivated to make a change in their life; I wrote a post for my brother's doing year 12 and about the pressure placed on their exams and that my results didn't dictate my future; I shared budgeting tips and things to review when on a budget; I share tips on self-care and how being sick affects more than just my physical health; and I even shared how I had a wedding for under $2500!

I created a Shoebox Timeline, which is a visual of the why behind my blog and sharing the various topics/awareness raised through my blog and also on social media (Facebook and Instagram). What I loved about creating this slideshow was it allowed me to show in a creative and fun way just some of the important conversations we've had. Check out the video below or head to my Shoebox Timeline to view too. 
P.S I know the video goes too quick on some slides to read, but just hit the pause button at any time to fully take in the content!

My blog name came about one day when I was talking about needing to be optimistic with a stoma. I had gotten tongue tied and instead said 'ostomistic' and so I realised it had to be my blog name!

So I started my blog and shared my story openly, and I know it was the best decision I made as so many people have connected through my blog and have told me they don't know if they could have gotten through this journey without my blog.... which is touching, and is the reason I keep doing what I am loving.

The other part of my inspiration to writing my blog, is that in 2012 I lost my dad to bowel cancer. He was only 41 when he died and he didn't seek medical attention early enough, and when he finally did get in to see the doctor he wasn't taken seriously and was told "you're to young for bowel cancer, just take these tablets to stop you being constipated". He wasn't constipated and he hadn't eaten in months as he had a large tumour blocking his rectum. But if he had of seen a doctor early enough, there is a chance he could still be here today.

I am a strong advocate for bowel cancer detection and screening, and I try and empower others to get checked, because if bowel cancer is detected early enough it can be treated. However, only fewer than 40% of cases are detected early. I hope that through sharing this it could help save a family's heartache of having to say goodbye to their loved one too soon.

As my journey changes with each new cancer diagnosis or finding out that I am 25 and terminal with cancer, I haven't lost my passion or vision. If anything, it just makes me more determined to share what I know and to help as many as I can before I pass on.

I know that as my blog changes with my health, that it could be upsetting for some readers when facing with their own mortality, but if I focused on the few that I could be upsetting and stopped writing about that issue then I could be hurting a lot more that need to read my words and hear my message.

Through my blog I have learnt a lot about myself, but I have felt a greater sense of self-worth and accomplishment. I have even presented talks at local stoma conferences where I was asked to share life with a stoma as a young person, it was a room filled with mostly older people, and they all said they learnt a lot from my talk.

There have been times where I felt uninspired or unmotivated to write or blog, and questioned if it was all worth it... there have been times where I felt like giving up. These moments were usually at a time where I was going through some health issues and having a hard time coping, and I hadn't received comments on my recent blog post and wasn't sure if anyone was finding value in it.

Then someone will reach out to my facebook page or email me with a question or an issue and telling me they need my help. It is in that moment that I realise that I can't throw in the towel as my blog does matter and I am making a difference to someone's life. When I am told thanks for helping them it helps to inspire me to continue sharing my voice.

I believe that life gives us many opportunities, we just have to be willing to look for them and ready to run when we find them. I turned a lonely struggle into a resource that has been used by many patients and their families, as well as university researchers using my patient's perspective to form their thesis'.

Do share in the comments below what inspires you, or if you blog too, what inspired you to start blogging?

 

 

Posted by: Talya AT 06:06 am   |  Permalink   |  1 Comment  |  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, February 20 2016

For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.

I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having  a new stoma created.

According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."

These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.

I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.

The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.

Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.

But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.

So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.


Me the day after surgery with my trusty Redkite blanket

The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!

In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!

It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.

As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'... 

I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.

It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.

If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.

I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.

Posted by: Talya AT 08:41 pm   |  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
Friday, September 04 2015

Recently, I was filling in one of those online question surveys that was for a cosmetic surgery company (I really wanted to win the cash prize) and while there were the usual questions about if you have considered cosmetic surgery before, there were also questions about your self esteem and self worth.

One question that stumped me, was "if there was one thing you could change about yourself, what would it be and why?"... and the answer may surprise you, I know it surprised me! 
                                                                                                        

I have never been someone who has considered undergoing cosmetic surgery in order to change how I feel about myself, and while I don't judge those who do, I just feel if you're unhappy with who you are now that it might not necessarily change after you've spent thousands on surgeries... it might make you feel worse if it didn't have the desired effect.

But mostly, I have already had so many surgeries and medical procedures because of the cards I've been dealt with that personally, I just don't want to put my body under the knife if it isn't needed. I have wanted a boob reduction, but that is mostly because my boobs are like a double J or something (no exaggeration) and it gets harder and harder to find bras and is so uncomfortable... but that isn't the one thing I would change.

I gave this answer some serious thought, and I thought about all of my physical "flaws" and imperfections and which one I would change.. I thought about my boobs and while they are huge and heavy they keep me warm (I do get cold very easily)... I thought about my eyes which are so wonky that my husband never knows if I am looking at him or around him (and I have to tilt my head slightly in pictures so you don't notice one eye is bigger than the other)...

My endometriosis crossed my mind, and I felt the all too familiar pains that it (like my FAP) has taken a lot from me... I thought about if I didn't have my endometriosis if I would have had a family by now and if I would make a good mum, to imagining a life where each month I'm not crippled with pain from the endo... and I even imagined what it would be like to have sex and ACTUALLY enjoy it... as opposed to how it has been for me the entire time I have been sexually active.. it not only is extremely painful during intercourse but afterwards it feels like there are thousands of knives stabbing at my insides (so you can imagine how hard it can be for your husband to know that while it brings him pleasure it is torture for you to endure... and then he can't help but feel bad about it... then you feel bad for making him feel bad... it is a horrible cycle).

OR is the one thing I would change about myself, my desmoid tumours? I am in constant pain everyday and finding it harder to enjoy things as I am just so exhausted from being in pain and worrying about my tumours. I am scared of what will happen if these tumours don't respond to chemotherapy this month and what this means for me... My kidneys are starting to go into renal damage, my tumours are pressing on my spine/stomach and sciatic nerve, and then there are two tumours which are close to strangling my small bowel and I haven't any large bowel (if my small bowel dies I might too).

OR would I want to change my weight because apparantly if you're overweight you can't be happy within yourself... while I am trying to lose weight it wouldn't be the one thing I changed about myself.

I thought about all of my scars that I have from my various surgeries and how they make me feel... and they mostly make me feel empowered like I am a tough bitch and it is almost somehow like proof of that time that I had to face an adversity but before I could get through it I had to first climb the huge mountain that was blocking me from it.... each of my scar bears a story to be told... and some of my scars show a sign of the battle faced.

Like the scar under my chin, which I got on the last day of Kindergarten in 1996 when I was so excited for losing my first tooth the night before. I had gotten $10 (the tooth fairy was rather generous) and I was skipping along not noticing the water overflow from the bubblers.. when... spalt! My head greeted the concrete and was taken to hospital to get stictches.. I was such a brave girl I got 6 stitches, a story to tell ANNND I got to choose a toy as a 'what a brave girl you were' gift...

Or the scar that runs from just under my breasts to just above my hoo-ha.. a daily reminder of just how lucky I was to have my bowel cancer detected early and underwent a total colectomy.. a scar that while it is huge and bumpy (and growing tumours attached to it) that it is a HUGE part of who I have become and a testament of how far I have come in the last 2 years...

...Which brings me to my ileostomy.

While some might assume that I might loathe my ileostomy everyday (albeit some days it gives me the shits), my ileostomy is something I can't imagine living without, and am so appreciative for it stands for. Prior to my total colectomy, trips to the toilet were agonising and often I spent hours on end just sitting in the bathroom in a lot of pain and often house bound... leaving the house meant that my trips needed to be carefully planned around where the nearest toilets would be, or avoiding eating foods for the horrific, painful and explosive events that were to follow.

The thing I LOVE the most about my ileostomy is that it had given me my life back and a quality of life I haven't had in about 10 years or so.. it meant I could now eat and enjoy foods without being in agony.. it also meant reducing one of my many cancer risks.

So if my ileostomy ISN'T the one thing I would change about myself, then what must it be?

Simply put, I would like to change the expectations, standard and pressures I put on myself because I need to remember that I'm not a superhero and I AM doing the best that I can... I need to give myself a break and be kinder to myself.

Something to remember...

If you could change one thing about yourself, what would it be?

 
Posted by: Talya AT 09:40 pm   |  Permalink   |  1 Comment  |  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
Tuesday, May 27 2014

 

Colonoscopy: 
Is a visual examination of the colon from the cecum to the rectum
via a colonscope which requires sedation.

So you just had a visit with a colorectal specialist and he has informed you that you are needing a colonoscopy.

A colonoscopy can be used to detect a range of issues or illnesses going on in your colon. I am certain your specialist has discussed with you the importance of the proceedure and how it will happen. You won't feel any pain during the proceedure as you will be sedated. Your doctor would have told you about the special diet that you need to take, along with colon preparation as well.

In the period between 2010-2013 I have had around 10-12 colonoscopies, and I want to share with you my:

10 tips for helping prepare for a colonoscopy

And to help you be more comfortable the day before as well!

Tip #1: I think it is only fitting that this tip comes first, as from prior experience I think it is one I consider important...

DO NOT SCULL THE COLON PREP SOLUTION.

As tempting as it is to hold your nose and scull the solution (because it tastes horrid and you want it over), there are a couple of reasons why you shouldn't:
a) it will bring on the urgency of cleansing your bowel- prepare for a bit of an explosion when you reach the toilet
b) it will upset your stomach and make you feel nauseated
c) you may not actually make it to the bathroom (learnt that one the first time)

Tip #2: The day before your colonoscopy you can only eat/drink CLEAR FLUIDS.
The first time I went for my colonoscopy my dad told me to stock up on lemonade iceblocks as they are:
a) clear b) filling and c) trick your stomach into thinking it has had 'food'.
I swear by this! I also drink apple juice, soda water and mineral water too.

Tip #3: I say this with brutal honesty- DO NOT LEAVE THE HOUSE THE DAY YOU TAKE COLON PREP.
If this will be your first colonoscopy you will soon see why I reccomend staying home and close to a toilet! There will be times where you will literally be running as fast as your little legs will carry you. There may be times where you might not make it to the toilet. If like me, you would be that exhausted come night time you just sleep on the toilet. If you don't live alone, I really hope you have a second toilet as the last thing you need is someone taking their time while doing crosswords or sudoku, while you are eagerly urging them to hurry along!

Tip #4: Invest in some baby wipes or vasoline.
Now.. have you ever had a really bad case of 'the runs' and found your bottom felt like it had been burnt, & was stinging? Well imagine that, but 10x worse. Your bum will burn, it will sting and it will become more and more irritated with ever wipe. I found that baby wipes and vasoline helps- It will still sting but not as much.

Tip #5: Keep an eye on your circulation in your legs.
You might think this is odd, but you will be sitting (often rather uncomfortably) for many, many hours. So it is really important that you find ways that can help your circulation and blood flow to your legs. I found I would often get pins and needles if I had been sitting for too long. So I invested in a bath step (a toddler one is perfect) to keep my legs slightly elevated and not so much dangling. If possible look into replacing your toilet seat with a more cushioning or padding seat (your buttocks/thighs will thank you), along with not crossing your feet/legs while seated. And if possible stand up or shake your legs every now and then to keep them moving and blood circulating. 

Tip #6: Try and find something to entertain you.
I found that it made the time go quicker if I set up a little table/bench in front of the toilet with my laptop so I could watch some tv shows or DVD's that I had. Also if you are into reading but haven't "had time to read" lately, this is the perfect opportunity. Grab that book and prepare to immerse yourself into the story and escape the 'shitty' situation you are in. Pun intended!

Tip #7: Prepare to sleep on the toilet
I know I briefly mentioned this above ^ but you will be that exhausted andso 'over it' that you will just want to sleep... whilist still sitting on the toilet. This might sound so strange, but in all the times that I have had a colonoscopy, I found that I got more sleep the night before if I just propped a pillow up beside me and slept. Think of it like sleeping in the car while travelling.. just you are on your toilet. 

Tip #8: Keep your fluids up!
When you are having a colonoscopy, you lose a lot of fluids and can become dehydrated very quickly! It is really important to keep up your water intake, I suggest getting a water bottle and just drink from it constantly. Also don't just start drinking plenty of the fluids the day before, start many days before and also having hydrolyte iceypoles, or drinks like gatorade and poweraide can give you a lot of the electrolytes needed.
NB: That the two days prior to your scope you only have clear fluids and cease drinking any drinks with colours.
*But as always, please consult your doctor, nurse or health physician on what is best for you and your situation.*

Tip #9: On the day wear baggy, comfy and loose fitting clothing.
You will want to thank me afterwards for this tip. After your colonoscopy often you feel so bloated and blegh that the last thing you want is clothes that feel too tight or trying to do up buttons (when you still feel groggy). Also remember to take a jumper, often when sitting in a hospital it can be quite chilly, and when you finish and are sitting up eating something (often for a while before being discharged) you may get cold.

Tip #10: Organise at least the day before and day afterwards off work.
The day before the proceedure is when you need to take your colon prep, and needless to say you really don't want to be at work on this day as you will literally be on the toilet for most of it. As for the day afterwards; you shouldn't drive, operate machinery or make important decisions as you are still considered to be under the effects of anaesthetic which can often cloud judgement, or make your head a bit 'foggy'.

*Different people react differently to anaesthetic, so important to follow any instructions provided by your doctor*
It is best to arrange to have someone collect you after your proceedure,and at least have someone with you overnight.

Now, I know that no one finds colonoscopies especially the preparation fun or comfortable, but I hope that these tips and advice can help you feel more comfortable.

I have offered the advice above based on my own experiences. Your own experience might be different or could
be similar. If you have any questions or concerns it is best to consult your doctor, nurse or health physician.

 

 
Posted by: Talya AT 03:55 am   |  Permalink   |  2 Comments  |  Email
Tuesday, April 02 2013

You might be wondering what an ostomy is, and I will try my best to describe from my knowledge and research. Often you will hear or read ostomy and stoma that are used but have very different meanings. Most commonly you would have heard before 'colostomy'. Until my surgery I assumed an ileostomy was a colestomy. So I found it great to know the difference.

An ostomy refers to the surgically created opening in the body for the body's natural waste to be eliminated.

stoma refers to the actual end of the small bowel or large bowel or ureter that can be seen protruding through the abdominal wall.

I live with a permanent ileostomy. This means the end of my small bowel (ileum) is brought to the surface of my abdomen to form a stoma, I had all of my colon removed.

There are also other ostomies that you could have relevent to your circumstance and case. Such as a:

  • Colestomy which refers to a surgically created opening (stoma) of the large bowel/large intestine/colon. A colestomy is created when a portion of the colon or rectum is moved and the remaining colon is brought to the abdominal wall. 
  • Urostomy a surgical proceedure that diverts urine away from the defective or diseased bladder.

I hope that this helps you to understand the difference between a ostomy and stoma and the different preceedures requiring the use of an ostomy and a stoma.

Posted by: Talya Goding AT 09:53 am   |  Permalink   |  0 Comments  |  Email
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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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