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.
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.
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.
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.
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.
I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.
Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.
Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.
So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.
As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.
I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.
Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.
If you want to read the interview on OstomyConnection the link is here.
5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.
P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too.
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.
Letter To My 21-Year-Old Self:
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!
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.
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.
..... 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.
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.
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...
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.
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.
#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.
#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.
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.
Welcome to the first issue of the Ostomistic Life, a free quarterly eZine dedicated to helping young people with an ostomy to navigate their lives. It is founded by a young ostomate for young ostomates... but anyone can read it.
When I originally started my blog it was because I was struggling to find relatable content because representation in the media matters and since was a passion of mine to try and help other young people with a stoma to feel less alone. I learned graphic design and had a dream of one day starting an online magazine... and I have!
I had originally planned this to be created and launched at the end of 2015 but I started chemotherapy and wasn't able to dedicate the amount of energy, time and love that this baby needed... which brings us to now!
I hope you enjoy the first issue, it has been curated with incredible content from an array of contributors as well as some pages to win.
Thank you for sharing in this exciting moment and happy reading.
ISSUE 1 | The Ostomistic Life eZine
I know I only have the Australian Stoma support groups/sites listed, I underestimated how long it would take to collate the whole world. I am still working on this and will be added as each page is ready (apologies)
I was asked recently by a couple of readers if I could share some inspiration ideas for storing your stoma supplies that is practical, affordable and also easily reachable.
Then when I presented at a local stoma education day here in Coffs Harbour, I was asked the same question again, so I thought maybe it was best if I did a blog post with some inspiration to how I store my stoma supplies and how a fellow reader stores theirs.
Idea #1: Invest in a small cupboard
When I had my first (original) stoma I was doing my bag changes in the bathroom while sitting on the toilet. In front of the toilet is a massive gap between the toilet and the shower, so I wanted to find a cabinet to put there (like a vanity without the sink) so that when I am sitting on the toilet I can easily reach into the cupboard and grab my supplies and it had a bench space on top so I could rest my supplies and easily grab them. This cupboard I found on a local buy swap sell site for $15!
Idea #2: Invest in a craft storage trolley on wheels
With my new stoma (the one I got back in February) it is rather problematic and bag changes are often lengthy. So more for comfort than anything I now sit on the lounge and do my bag changes (I found my legs were going numb on the toilet after sitting for so long). So now I have a craft storage trolley on wheels set up beside my lounge that has a draw for each supply and it is really easy access... I got this as a gift from my dad (the last Xmas before he passed) but you can pick them up from officeworks for around $60.
Image 1: how I organise my supplies | Image 2: a photo from officeworks website
Idea #3: Invest in a craft storage drawers not on wheels
These you can find at officeworks (or I am sure the reject shop too) and these are a great size to sit inside a cupboard or freestanding. They have 4 generous draws and come either in black and clear or white and coloured. They are also only $29.98 and a much cheaper alternative to the storage trolley on wheels that I have.
Image 1 and Image 2 from the officeworks website showing the two styles available
Idea #4: storage drawers to fit in under your vanity
A reader Belinda sent me in her nifty storage idea, she purchased a set of 4 storage drawers from officeworks for $19.98, and it is so convenient for her after she has a shower to just reach into the vanity cupboard and grab her supplies. She said the plastic dividers are movable so it can make the drawer have bigger compartments if needed.
I know it is a personal choice of where and how Ostomate's prefer to do a bag change, and I know some of these inspiration ideas might not be ideal for everyone but they work for me. If you too have a nifty stoma storage idea you would like to share feel free to send me an email or message me via facebook.
We know that chemo can be toxic to ourselves and we can get sick, but did you know that it can make those around us sick too if they are exposed.
Before I started chemo, I was invited to attend a chemo education session where I learnt things about treatment, nutrition and what it means to be cytotoxic.
When you have chemo you are considered 'cytotoxic' for the next 7-10 days. This means that your bodily fluids such as urine, tears, sweat, saliva, semen, poo and blood contains chemicals that can be toxic to others if they are exposed to it. They can be near you and not get sick, just as long as they don't come into contact with your bodily fluids.
So when you have chemo it is important that you be mindful of what you're doing to help protect those around you.
Here are 10 steps I take to ensuring the safety of others around me when I am cytotoxic
#1.Double flushing the toilet with the lid down
This helps to keep the toxic waste inside the toilet and avoid splashing. Double flushing also ensures that the toxic waste is removed from the toilet and is safe for the next person to use. Make sure you also wipe the toilet seat properly.
#2.Try and use one toilet for my use only
I know this one can be hard especially if you only have one toilet being used by all the members of your household, but I am lucky in my house that we have two toilets and I try and keep one toilet for my use only. This is just to minimise the risk of me being cytotoxic with my husband or guests visiting our house.
#3.Don't share drinks/cups
As saliva is one of the ways in which I am cytotoxic it is important for your own safety that you don't drink out of a bottle I have drank out of, or a cup. If you (like me) prefer to drink out of the bottle of milk or softdrink rather than in a glass simply mark that bottle with your name or just make sure others know not to drink that drink.
#4.Don't share food/utensils
This very much goes with #3, don't eat the food off my plate or use my utensils after I have used them. I have to keep reminding my husband to not eat my leftovers. I am getting more into the habit of having smaller meals and going back for more if I am hungry as opposed to food going to waste... but sometimes my eyes are just too big for my tummy!
#5.Use condoms if having sex even if it is just oral
Not only do you not want to get pregnant while undergoing chemo (I imagine it wouldn't be good for the baby), but it also isn't safe for your partner if you have unprotected sex.
#6.Double line your garbage bags when disposing your stoma bags
This is something that I was told to do by my stoma nurses which helps ensure the safety of those working in the garbage disposal industry in the event that the original bag you've disposed of your stoma bag in has broken down or torn open, that you aren't exposing workers or the environment to your toxic waste. To be safe I put my soiled stoma bag in a garbage bag and seal it then place it inside another garbage bag and seal that one.
#7.Make sure you have disposable gloves handy
If you are likely to have someone at home who would jump in willy nilly and help you clean up if you vomitted, had a bag leak or made a mess, it is important that you have gloves at the ready for them to wear to protect themselves. My husband bless his soul really is my night in shining armour, he sees that I am in trouble and his first instinct is to jump in and help me. But, I have to keep stopping him and reminding him to get gloves if he wants to help as I don't want to run the risk of making him sick. Also put the used gloves in a plastic bag and seal it before placing in the garbage bin.
#8.If you are holding a newborn
My brother (and his partner) recently had a beautiful little boy. Easter was approaching and I had started back on chemo and I knew I would be sad if I could see him but not get cuddles. So I asked the chemo nurses if it was okay for me to hold him and they said that it was providing I wasn't sweaty, I don't kiss him and my bag isn't leaking. Thankfully, I got a couple of cuddles in on Good Friday and I made sure that there was always something between my skin and the baby to be safe.
#9.Wash soiled items seperately
When you do have a leak it is important that the clothes and linens are washed seperately to your normal (non-chemo person's) laundry. I find one wash cycle to be enough to clean the clothes, it is just more to protect other's clothes from being exposed to cytotoxic waste.
#10.Wash your hands and make sure others do too
Whenever you go to the toilet, do a bag change, deal with soiled linen or clothes or if you sneeze/cough always make sure you wash your hands. Not only is this good hygeine practice, but it helps eliminate the spread of germs and chemicals. Make sure others around you wash their hands too and if possible ask them to use hand sanitiser.
I first became a member of the ostomate world back in May 2013, when I had all of my large bowel and most of my rectum removed in a procedure to save my life from the perils of bowel cancer.
It wasn't until July 2015, that I experienced my first really bad bag leak during the middle of the night resulting in soiling not only the doona and sheets, but the mattress protector too.
Worst of all, I wasn't even at home. I was staying in a hotel for a few days in Melbourne.
I had to call the front desk at 3am in tears asking for fresh linens, when they replied they don't have any until room service come in later that morning and that it will be best to change rooms. I was absolutley humilated and mortfied but the guy reassured me that it was okay and it wasn't the worst he has seen. (Got me thinking about how dirty some people can be!)
So when I continued that short holiday (was actually down there for a big bloggers meeting, which was exciting) and then when I got home I made the decision to sleep with towels on my bed and wrapped around my belly, that if my bag did leak it would be somewhat protected and not cause a mess.
Afterall, my mattress and bed cost me $6k and it is white leather, so I am rather protective of my bed... initially I was too scared to sleep in it with the leaky stoma... and it isn't just at home I am scared of a leak, I am hesitant to stay at other people's houses for that reason.
I know that you're thinking "just get a mattress protector", well I have one but I worry it won't give me a lot of protection if it is a heavy leak (which most are).
And it got me thinking about what disposable and cheap products could I use to help give me peace of mind when sleeping.. and I came up with one great one (and will also share what one reader's suggestions were too).
So if you have a unpredictable and leaking stoma like me, here are some affordable ways to protect your sheets.
Cheap, thick and disposable table cloths
I was lucky that I had a garage filled with all these party supplies I wasn't using after purchasing and attempting to sell through a failed business venture.. so I have been putting the table cloths to great use and they are rather thick and durable and best of all cheap and disposable. I know the reject shop or other cheap shops sell them too
Some suggestions from a reader were:
Plastic shower curtains
Garbage bags torn open
Update:What I use now and how I protect my linens
Since writing this post a year ago almost (it is now May 2017), I have been trying out new methods and ideas to help protect my linens and mattress from my leaking stoma in a way that was easy to manage and was being savvy too.
So I found a product called a "Kylie" which is a quilted mattress topper that has a rubber/waterproof underlay so nothing will seep through to the mattress and sheets underneath. I found these at a local homecare aid store for around $40 for a double, I purchased a couple through the help of a local service and have one on my bed and one spare.
So now when I do have a leak, I simply take the soiled Kylie off the bed and into the wash and put the new one on the bed. I find it is easier for me to manage when I am at home on my own while hubby is at work.
Here is a look at how I place it on my bed. I make my bed/sheets as normal, I put the kylie down then a disposable bluey as an added measure. I know the Kylie is meant to go under the sheets and tucked under the mattress, but given how heavy my mattress is it is not something I can manage/change on my own.... so this is what works for me and for a year now I haven't looked back. I also take a kylie with me when I go and stay at family or friends places too.
NB: Some images of my stoma and ulcer might be confronting, proceed with caution view at your own risk
For the past month I have been dealing with a new challenge in relation to my stoma.... not that changing my stoma bag isn't enough of a challenge but I have had to deal with an ulcer that had formed mere centimetres from my stoma and required a lot of attention.
I was in hospital early January (the day after New Years) with an infected portacath, and I did a bag change before I went off to surgery and there was this giant ulcer which just more or less appeared near my stoma.
Boy was it sore!
It was fairly deep and over the first week or two was painful to touch but thankfully 5 weeks later, the ulcer has almost fully healed.
But it was certainly confronting and I learnt some new techniques and products (which have become a lifesaver).
I also owe a lot of thanks to my stoma nurse, without her advice and knowledge I would not have known what to do, and luckily she has had plenty of experiences with ulcers near stomas and knew what to do.
I don't want you to feel alarmed or worried that you too will get an ulcer, mine just happened to be caused from a necrotic tumour that is dying and causing an infection under my skin, and that infection was trying to break out to the surface and the pressure formed an ulcer. I hope you aren't unlucky and don't endure this, but hopefully I can share my experience and tips that might help you too.
Some of the products I recently learnt how to use and some application tips:
#1 - Prontosan
This was introduced by my stoma nurse and she gave me a bottle of prontosan to use for when she came to my house for a home visit and stoma bag and wound care change. It is a solution that is great for wound irrigation and has an anti-bacterial property that helps your wounds to heal. It doesn't sting either.
Application: We soaked some cloth in the solution and then placed the saturated cloth over the wound for around 5 minutes, letting it soak in
#2 - Kaltostat
This is a wound dressing that is known for helping to inhibit heamostasis (the body's process to stop bleeding).
Application: A small piece was cut to the size of the ulcer, initially there were two pieces layered on top of one another then as the wound began healing only one piece/layer of dressing was required.
#3 - Coloplast stoma paste
I haven't used stoma paste before, but as we really needed to ensure there was protection of the wound from my stoma output the paste was used to form an added barrier.
Application: Squeeze out some of the paste over the dressing so that it is a line going over it. Using a cotton bud that has been wet, spread the paste out so that it covers the Kaltostat and has formed an extra barrier. It is best to wet the cotton bud to prevent the paste sticking to it and helps the spread of the paste easier.
#4 - Eakin Cohesive seals
I hadn't used these seals until recently, and I love that the seals are big and round and provide a lot of added protection to your stoma and the skin around your stoma.
Application: With these seals you can stretch out the inner circle (looks like a donut) to the size of your stoma. You simply place it over your stoma and press down so that it adheres to your skin. I found this helped to provide an added barrier between my stoma and my wound. You can also cut a line and then wrap the cohesive seal around your stoma and cut a piece from a new cohesive seal if you don't want to stretch it out and want it to be more sturdier.
-----> Now I applied my stoma bag and secured it with the elastic tape seals and now I was ready to face the world
If you're in Australia, these products (minus the prontosan and kaltostat) can be ordered through your ostomy association if you need some assistance be sure to ask your stoma nurse.
I highly suggest if you do get an ulcer or experience skin breakdown near your stoma that you seek the help and advice from your nurse or doctors. My blog is merely a sharing of my experience and tips and I am not a healthcare professional.
Left: stoma and ulcer first day it was discovered approx 2cm. Right: Two days after it was discovered approx 3cm
Left: week 4 slowly healing over. Right: it is almost all healed (week 5)
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.
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!
#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!
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 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).
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.
I try and be as ostomistic as I can about the whole 'having an ileostomy' thing, and never try and say that I hate it (because truth be told it is SOOOOOOO much better then sitting on the toilet in agony for most of the day). But there is one thing I absoloutley HATE and feel embarrased over, is the stench that is left behind when I empty my bag.
So I must admit I have tried the whole taking a can of toilet spray with me in my handbag when I go to the shops, and boy has there been some awkward stares when you are at the checkout line rifling through your handbag to find your wallet when out falls a can of toilet spray or as my husband likes to refer to it as "the stink be gone can", and you have to try and justify THAT YOU ARE NOT STEALING TOILET SPRAY... let's just say shit gets really awkward.
So what if I told you that I have found the perfect addition to your stoma kit, that not only will it not cause awkward or embarrasing stares, but will at least help you retain some of that dignity (that is otherwise flushed away).
For Christmas, my husbands mum and sister had made up this cute little basket filled with all these delicious smelling products, and one of them was a Bora Bora Blossom Room Spray. So when my mother-in-law mentioned well gave examples of times where it has come in handy and after seconds of spraying the mist the house smells so much nicer and the smell has completely faded away...
So of course my darling husband pipes up and says "Oh that would be awesome so you no longer stink up the house" (gees thanks Russ I love you too) it actually gave me a great idea for its use.
So off I went to add this spray to my stoma kit, and it is amazing! I spray it just before I empty my bag when in a public toilet (or at someone else's house) and then again once I have finished to be safe. And I love it!
It is compact and not bulky, it is discreet in the sense that it looks kind of like a body mist or perfume, AND IT IS SILENT!! No more of this "shooooooosh" sounds from the toilet cublicles as I spray the smell away, and no more waiting until everyone leaves the toilet before I emerge to avoid those judgemental stares!
Just like Santa, we need to make a list and check it twice!
I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!
I must admit that I hadn't always been much into eco side of life until the last couple of years.
Don't get me wrong I have always re-used, recycled and repurposed many things but wasn't until I was looking at returning to studies and looking for a lunchbox and lunch bag did I really start trying to practice more eco friendliness.
As you might be aware I have FAP (Familial Adenamatous Polyposis) which is an inherited cancer causing condition.
So as you could understand I am all about trying to reduce my susceptibility to cancer, so I made the decision to use bottles, containers and lunchbags that were FREE from BPA. I mean after all if something like a bottle or container is touching my food, I want it to be as safe as possible.
Now I know that the whole BPA issue is a controversy to many, please know this isn't the place to have the debate.
So imagine my delight when I learnt that there was a small business Little Shoppers on the Central Coast of Australia that not only was dedicated to providing eco friendly solutions for you and your family, but have come up with bamboo baby wipes that are affordable!
If you have been following my posts for a while now you may recall me mentioning a little stoma/bag changing tip I had was that I prefer to use baby wipes on my stoma and cleaning of the skin/area during a bag change.
Well, I had the priviledge of testing out a tester/sample pack of the bamboo wet wipes myself recently and these exceeded all my expectations.
I thought I would wait until my next bag change to test these out, and boy they worked wonders!
They were not only soft on my skin, but they were quite durable and thick too! I can tell you they did a fantastic job at cleaning and I didn't have to scrub hard at my skin to alleviate some of the waste, it was really surprisingly gentle.
I will warn you though that if you like using baby wipes for the perfume and scent, that these won't smell like lemon fresh or shea butter... these smell like, well BAMBOO!
Did I mention that these are pretty affordable too? They have a special offer of $2.50 a pack of 80 bamboo wipes when you purchase a box of 18 packets! What a bargain!
Normally when you hear bamboo you straight away think of the hefty price tag that comes with it but these bamboo wipes are not only good for your baby (or in my case my stoma) but good for your wallet too!
If you want to check out their range of bamboo wipes, click here to visit their online store!
When it comes to doing bag changes I can't help but feel guilty about disposing of my used stoma bag in the garbage bin (tied securely in a plastic bag). I just know there isn't more environmentally friendly options to dispose of our used bags, kind of like disposable nappies, but using these bio-degradable and bamboo wipes makes me feel like at least I am turning a shitty situation into at least a positive in helping the environment.
Disclaimer: All views expressed in this blog are that of my own. This post/review wasn't a paid sponsored post but a post shared on a recent experience when using the product. The product was kindly supplied towards goody bags for a recent charity fundraiser, one of which I received and had the sample packet of wipes in it. On occasion I do receive products or services in exchange for a blog post/review. I will only ever post reviews of products that I love and use and know it would be of value to my readers. I won't post negative reviews.
Sometimes it can be frustrating when you spring a leak (a stoma bag leak that is, not a spring onion) or when you're trying to do a bag change and your bags just won't stick!
I have 5 handy and quick tips to getting your bags to stick better and help you to prevent a leak!
1) The very first thing I do when I am about to do a bag change is to grab one of my bags (don't cut it yet if it isn't a pre-cut), fold it in half and place under your boob. No joke- this works wonders! Because the glue on the stoma bags is more stickier the warmer it gets this is a great way to warm your bag up which means make your bag more stickier.... I KNEW having huge boobs would come in handy one day hehe
If you're a guy I don't think this step ^^ will apply to you (sorry)
2) Grab a hairdryer and put the settings on a high heat and sit there for about 5 minutes heating the bag up. Make sure that you are heating up the wafer part that will stick around your stoma. You don't need a fancy hair dryer, I just bought a cheap one from a department store and it works a treat!
3) Using your adhesive remover wipes (I love my Coloplast ones) ensure that all of excess adhesive residue from your last bag change is removed. I then using a wet washer will give the skin and area a bit of a wash (trying to not use a lot of soap as this can make bags not stick). Also make sure that the area is completely dry!
If you use Stoma adhesive powder, it is important to make sure that you wipe off any excess powder where your bag usually sticks, as this can also stop the bag from sticking. I use my skin barrier prep towlettes (like the adhesive removing ones, also coloplast) to prepare my skin for the bags and to remove any excess powder etc.
4) When I am ready to put the bag on I get both hands and kind of put them around the stoma (one on either side of the wafer plate) and press firmly and hold for a while. This adds extra (natural) heat to the bags and helps to make them a little more stickier.
5) To create some extra reinforcement of the bags I use 'banana wafers' (correctly known as elastic tape) and I use two of these to help secure the bags. One wrapping around the bottom and sides, and the other wrapping around the top and sides.
Those are my 5 quick tips to make your bags more stickier!
If you have some quick tips that you've found to make bags more stickier share them below!
Guess you never thought you would hear the words "Garbage bags and why you should love them" strung together in a sentence before......... Well that was until you heard me say it!
Now... before you get all uppity about how bad garbage bags are for the environment and how I am a horrible person for suggesting you should love them.. but if you let me explain why I have a new fondness for garbage bags, you will understand.
Over the last 18 months I sometimes get overwhelmed when doing a bag change due to the smell (which I imagine is a pretty normal thing to experience) and partly why I don't enjoy the bag changes is because of the smell.
But the other day when my husband was doing the grocery shopping, he had a pretty thoughtful gesture and decided he would buy me some garbage bags to try for when I do a bag change.
Up until that point I had been using a plastic bag (and thoroughly check for holes) and proceed to do the bag change.
But he (my husband) didn't just stop to get any ordinary garbage bags... he got small purple lavender scented garbage bags.
You wouldn't think something so.... boring would be quite effective!
I love purple and lavender and I honestly don't notice the smell when I am doing a bag change.
So HUGE thank you to my hubby for being so thoughtful and thinking to get me to try scented purple garbage bags!
These are the pink rose scented bags
OH and if you were wondering what type they were, they are 'Multix Kitchen Tidies' and I purchased them from Woolworths for $2.66 which works out at 10c each!!
Keep an eye out for more Ostomistic Tips and Advice.
Is the surgical removal of the rectum and all or part of the colon,
and is common surgery for Familial Adenomatous Polyposis and Ulcerative colitis.
Recently I celebrated a massive 12 months since I had my proctolectomy with the creation of a permanent ileostomy.
Now I would be lying if I said the last 12 months has been easy (read about my 'stomaversary' here),
but over the last couple of months I have been noticing some 'weirdness' with my rectum (what is left) and
began seeing my GP and specialist.
My concerns and worries started when I was having pain and discomfort when walking, as sometimes it
felt as though there was something in there, and other times like I really needed to do a poo.
But then I started noticing blood which was getting more and more frequent I realised I should see my doctor.
I admit, I should have seen them to begin with but I was so embarrased!
My GP thought it could have been a number of things including polyps, so I made an appointment to see my
colorectal surgeon, who booked a scope for the following week.
*Now you might be wondering or thinking I am lying or that it was pointless to have a scope when I have had a proctolectomy done, but not ALL of my rectum was removed and I still have half of it left. This was left, rather then being removed and stiched up was so that the surgeons had access to the area to biopsy the tissue and check that no polyps or cancer is growing. Just because I have FAP doesn't mean it is only affecting my bowel/colon (which was removed). I have polyps in my rectum, stomach, duodenum, pancreas, GI tract and possibly is the reason and extent of the severity of my endometriosis. Just wanted to clear that up before you judged*
In this appointment was the first time I had ever had a rectal exam, talk about bloody awkward!
He asked me to lay on my side and he was "going to have a look".... to my total surprise and shock it wasn't just a look!
To any men reading this after having had a prostate exam before, I do sympathise with you!
So over the week leading up to my scope I was told that it could be polyps bleeding, an infection or worst case an abcess.
Friday soon came around and I headed over to the hospital for my admission, and went and had the proceedure.
Was a really different experience to the 'normal' colonoscopy I had.
I have had quite a few scopes before, and afterwards I had never had any pain.
But I had quite a lot of pain immediately afterwards (and for almost the last week following).
I was finding I couldn't sit for too long as the pressure and pain would start,
but I keep getting this feeling like there is something in there like I just need to poo all the time!
It is rather frustrating needing to do a poo but physically not being able to.
I am thinking maybe the muscles and rectum is irritated and that could be causing the discomfort,
But waiting to see my GP to follow up.
Please note: That this was based on my own experience, and if you are needing to have a scope after your proctolectomy you may have an entirely different experience and may not experience any pain or discomfort. Please remember any views or experiences shared on my blog are based on my own.
When your BAG gets WET do you find it FRUSTRATING with how long it takes to dry?
Well I have found the PERFECT solution for you!
I used to like swimming and enjoying nice relaxing spa baths, but always found when my bag got wet
that it would take FOREVER to dry and no matter how much I patted towel dried, my bag just wouldn't dry!
I often would be sitting there for HOURS patting my bag dry and would become so frustrated and
would walk around with a small towel wrapped around my bag/stomach because I just gave up!
Now I know what you are thinking 'Why don't you just change your bag?'.
Well good question BUT if I changed my bag EVERYTIME I showered, I would soon quickly run out of supplies.
Well my conundrum and search for a solution happened recently when I started doing 'Met Aqua'
which is similar to water aerobics but much more fun!
So after my first class I found that although the rest of me was dry I had to drive home from the
class with all this towel padding so my clothes wouldn't get wet...
Well no matter what I tried I just couldn't find a fast drying solution...
That was until I came across an amazing, innovative and eco friendly product
that is designed right here in Australia!
Introducing the Wovii- The Super absorbent
and fast drying towel!
I took my wovii along to my swim class today and within seconds of drying my skin
was dry and I wrapped my hair (which is pretty thick) in the towel for a minute or so
which was also dry AND best thing of all... THE TOWEL WAS STILL DRY!!
Normally towels are so heavy when they are wet
but this towel is so absorbent and so light!
When I got home I got the wovii and wrapped it around my stoma bag for around 5 minutes
and it is completely dry! Even the adhesive banana wafers were dry too!
I am so happy to have found this amazing towel and it seriously will make my life
and living with an ileostomy so much better!
Their colours are so beautiful! I already have my next colour purchase in mind!
IF your order is over $50 your post is FREE (Australia Wide) otherwise it is a low price of $4.95!
*Feeling Ostomistic is not paid for reviews, and often will offer reviews on products I have purchased if I feel strongly about the product and of the use that it has. If I publish a review it would only ever be a positive review about why I love and personally reccomend the product. In some cases products are received in exchange for a review, but mostly I have purchased the products*
There are things that no one tells you about having a stoma before.. well even after you get a stoma.
But don't fret I will tell you 10 things honestly, that they don't tell you about an ileostomy
1) You will no longer have a belly button
You might be thinking this sounds weird no longer having a belly button.. well you do but I would more call it a weird massive hole. When they did my surgery they cut my stomach above my old and tiny belly button and they cut straight through my belly button. When they stapled it up the staples wouldn't hold in that area. But it does have its benefits as I can use the banana wafers to mould into the hole adding more stability and helping to stick the bag down more.
2) Your stoma will make noise at the most inconvene times
Do you remember when you were back in school (surely not that long ago) and you are having a 'private' conversation with a friend. But when it comes to the embarrasing things being said of course the whole class goes dead silent at the same time and your whispers sound like you are yelling- of course everyone in the class hears your conversation.. Well imagine that when things go quiet your stoma starts making loud farting/squirting noises. Expect to be embarrased.
3) Your stoma will look hideous
After my surgery my stoma nurses would comment on how 'beautiful' my stoma was. I don't see it as beautiy it actually makes me feel rather hideous and gross. Although I am grateful it doesn't look like the ones I googled before my surgery that looked like massive stoma penis'. Just it is all bumpy and kind of looks like weird lips. It could be that I know what its job is and that could be why I think of it as ugly? But don't expect your stoma to look pretty.
4) Your output will smell horribly
Like we all know our excretory waste smells, but expect the output to come from your ileostomy to be 10 times worse. I have at times, become immune to the stench, but it doesn't help when your husband complains about the smell wafting through my house. Be prepared to have many cans of nice smelling air refreshner, because you will need it. Maybe a can in your handbag for when you go to public toilets or rest rooms.
If you are a parent you might be familiar with the situation of if you forget your nappy bag and go out in public there could be certain disasters and of course you are left in a bit of a 'shitty situation' with no supplies.. well imagine that with having a stoma. Murphy's Law would have it that if you don't have bag supplies you will soon remember why you should take them everywhere you go! I got a nice bag designed that is big enough to store supplies for at least 5 bag changes, just pop it in my handbag and off I go.
6) Some foods will come out whole
There are foods that there is a reason you should avoid and when they tell you to avoid them this is why. There are a bunch of foods that come out whole like pineapple pieces, corn, peas, nuts, mushrooms, bread crusts (looks and feels like leather), lettuce, celery and tomatoes. It is bizarre watching or feeling things come out whole especially feeling these in your bag. But you should avoid them because these foods don't break down and can cause a blockage- now we don't want that!
7) You will feel like you need to poo but you just can't
There is nothing more frustrating than feeling the need to poo when you just physically can't. Having an ileostomy and bowel removed means it isn't possible for me to do a number 2. But at times I feel like I still have a bowel and need to poo- I call this phantom bowel, but heck it is frustrating!
8) Sometimes your bag is full but it is just air
We all know that frustration when we buy a bag of chips and the bag is mostly just air. Well that is sometimes the same with your bag. There are times where your bag is filled with air and little output. I have had times where my bag feels like it could shoot off like a rocket! Believe it or not air can be pretty hard and heavy.
9) Having a stoma and having sex can be awkward
Having a stoma doesn't effect having sex as those parts obviously are okay. But lets just say your bag will make a 'slap, slap, slap' sound as the bag hits your skin. I guess slap wouldn't be the right word to use but it does make a sound as it hits against your skin.
10) Output kind of looks like toothpaste
When doing a bag change I have noticed that when output comes out of the stoma it looks like toothpaste. Not white or blue but a different colour. But it is the motion that looks like toothpaste being squeezed out of a tube. Although it is gross it does look cool.
There are many more things that no one tells you about for now these are my 10 things I was never told until I experienced them.
There are times where more often than not, that I get overwhelmed when changing my bag and afterwards get really clammy and feel like I might pass out. It isn't so much to do with the stench but more it just can get too much to deal with and gets a bit emotional.
But I have been trying a new tactic the last couple of months and after just finishing a bag change I feel more at ease.
I will share my new tactic with you.
I step out of the shower and dry myself, then I go and sit on the toilet (Not that I go to the toilet but more its just personally more comfortable to change my bag seated).
Before I start my bag change prep I turn my iphone music on shuffle and have music playing.
I have always been a person who from a very young age has loved music and can relate songs to feelings or times in my life but more I grew up listening to music and it is something I love, especially belting out a tune or two.
So after I turn my music on I get myself set up which involves:
*Filling a small plastic container with fresh water
*Getting an empty plastic bag (without holes) and tucking it under my stomach and then tucking my bag into it. Trust me it makes things so much easier and less messy!
*I then begin to cut the supplies needed for the bag change, so cutting my bag to size (I am lucky that my bag size hasn't changed size since June 2013) and then I cut the chux cleaning wipes into thin usable sized pieces and put in the water container.
*I set out beside me my stoma adhesive remover wipes, skin barrier wipes, mouldable ring, stoma adhesive powder, my bag and also banana wafers.
I then start removing my bag using the adhesive removing wipes and without realising I am wiping to the beat of the music and whistling the tune.
So next thing you know my bag is removed, My stoma is clean and my stoma is prepped for a new bag.
Usually takes around 3 full length songs all up to complete, but I don't notice how long it has taken or consciously aware of what I am doing as I am relaxed and at ease.
Tonight the song that was playing while I was changing my bag was 'Carry On' by Fun (which I really love) and I was listening to the lyrics and it was pretty much summing up how I have been feeling the last couple of days, and when the song was over it had me in a much better mindset then I have been for days.
The lyrics that really struck a chord were:
"Cause we are We are shining stars We are invincible We are who we are On our darkest day When we're miles away So we'll come, we will find our way home
If you're lost and alone Or you're sinking like a stone Carry on May your past be the sound of your feet upon the ground and Carry on"
Listening to these lyrics really have me remembering that I am a fighter, that I have been through the worst of it that I need to pick myself up and just simply carry on. That no matter how hard times seem and how bad some days are just need to pick myself up and carry on. The past is the past and there is no point dwelling on it as I believe our past helps shapes who we are.
So on our darkest days we will find our way and we will get through this.
There have been many things I have had to do for the first time since having my stoma, and some are things I thought I wouldn't be able to do.
I had heard from other ostomy members in the past year that they can no longer go swimming as their bags just fall off.
So you can imagine hearing (well reading since it was online) just how humiliating it could be.
Here in Australia we are blessed with great temperatures all year round and some of the most beautiful beaches and swimming places in the world, especially here in Coffs Harbour.
So imagine my upset when I thought I would never be able to go swimming again in public or in company of family or friends.
The summer just passed would have to have been one of our hottest summers ever and boy did I feel so alone!
My husband and family would spend days/afternoons at the beach or would go and visit family who had pools and while everyone was having fun and enjoying themselves, I was sitting on the poolside faking a smile that I was enjoying watching everyone have fun.
But the truth was I wasn't. I felt so alone and so excluded that I decided I wouldn't go along to any family functions if they involved being at the beach/pool as I just felt like I didn't belong.
Although people were quick to judge and ask if the reason I wasn't swimming was because I was fat and embarrassed with some answering "well.. just fix it".
But I would just hold my head high and say something along the lines of "I can't swim with my ileostomy". No one ever asks why, thankfully it saved me embarrassingly having to say I was worried my bag would fall off and output would go everywhere. I know it sounds graphic and gross but thats how I feel sometimes.
Last week I went away for a few days with my husband and we stayed at the Nambucca River Tourist Park. We needed a break and the last holiday together was our honeymoon in 2011.. so it was well over due.
Being mid-week in middle of March there wasn't many people staying but more the pool wasn't crowded.
I decided I would give swimming with a stoma a try, since after all we were on holidays and the pool looked so refreshing.
I did the 'get into the swimsuit' dance and made sure my bag was tucked in securely and wondered on down to the pool.
I was so anxious and nervous that my bag would fall off and it would be a disaster but much to my surprise it wasn't!
I was swimming around in the pool for over an hour and just relaxing with my husband.
He commented that he hadn't seen me so happy and smiling and having a good time in forever, that he had forgotten what happy Talya looked like.
In that hour I totally forgot that I had a stoma and was enjoying the first time in 2 years that I had been swimming.
We went back to the villa we were staying in.
I was going to change my bag but as I was going swimming again tomorrow I decided not too as once it had tried it was basically intact!
In fact even 2 days after my first time swimming when I did do the bag change (knew I wasn't planning on doing more swimming as we were leaving the following morning) it was still an effort to get the bag off, that it had that much tack to it.
So I don't know why people were saying that their bags just fall off when they were swimming, and it certainly was a lesson learnt that I should always do things first and try myself before taking the word and advice off of someone else.
I know when I first had my stoma and for the first 6 weeks I had nothing but non stop leaks. Leaks are caused when the bag doesn't have a good seal.
I was exhausted. I was fed up. I hated my stoma.
I was told constantly that it wouldn't always be like this, that it was a 'working progress of trial and error' to find the right appliances to work without a leak.
I was having my bag changed every hour or so and my skin was so irritated!
I remember the first week I was discharged I literally just sat in the bathroom crying constantly as I was over it. No matter what I tried to do nothing was working.
I was getting no sleep as my bag kept leaking and I couldn't see anything working.
Over the first 6 weeks I worked with my stoma nurses (I had 3 at the time at two different hospitals) to try and work out how to stop the leaks, and I was going through appliances like there was an endless supply.
On the 6th week I went back in and said I didn't know what else to do to stop the leak, and then we realised what was happening.
A week after my surgery was when the leaks started and we realised that because I had lost weight and the swelling had started going down my stoma was now in a different position than when it was first sited (where the stoma was to be placed).
So where my stoma was, was now right near my scar (which had staples until week 6) and was where my waistline was, so my skin was uneven and wasn't providing a surface to stick to properly.
We found that coloplast had a range of bags used and targeted towards people with hernias called the sensura range.
We ordered some samples and tried these along with the mouldable ring, banana wafers and stoma adhesive and found that finally the bags stick (really have to reinforce with the banana wafers though).
It was such a relief when it was almost a whole day without a leak, then it was a couple of days and I can happily say that in the 9 months I have only had one leak (which was because my bag was full overnight and when pressure was applied....).
I am so happy with how well my bags stick that I can get 7-10 days out of the wafer (which is great since my skin is sensitive). Even when it gets wet it is so hard to take off, and I have so much more confidence!
I really wish I had of listened more when everyone kept saying that it wouldn't be leaking forever it would hae made me feel more hopeful.
But if you are experiencing constant leaks with your stoma I honestly suggest working with your stoma nurse to find the right method and solution for your stoma and skin, because just like a key is made to fit a lock perfectly there is a range of bags that is suited to your stoma.
When you adjust from life before an ileostomy to living with an ileostomy there are many, many changes that you will need to adjust to. The most obvious would be your bowel movements.
We all know what a healthy bowel movement is or if you are like me you only wished of a 'normal' bowel movement (pre ileostomy). So when I got my ileostomy it was like nothing had changed just liquid like it has been the last few years. I had to learn quickly how to not only try to avoid so much liquid output but how to control this type of output.
And there are simple tips to help!
A liquid output can be caused by certain foods you eat. There are certain foods (especially when consumed in a high volume) that cause a liquid output such as:
Fibrous foods (wholemeal bread, raw vegetables, wholegrain cereals, leafy green vegetables, sweet corn, fruits and nuts)
Drinks that contain caffeine (coffee, tea, cola)
TIP: If you are experiencing high output and eat these foods, maybe reduce the amount you consume to see if it helps at all.
If you have a stomach bug this could also contribute to having a higher output.
I will now share ways that I find helps to thicken my output:
There are satches of crystals that you put into your bag. These crystals absorb your output and help your bag not to fill as quickly.
Try eating things that have high carbs like white bread, potatoes, chips, toast
Bananas (also good for helping with certain vitamins and protein)
Smooth peanut butter (I do love peanut butter sandwiches)
Marshmellows are great too (I have heard people say they have marshmellows 30 minutes before their bag change to help having a watery output during the bag change)
Depending on what your doctor or stoma nurse says sometimes taking 1 anti-diarrhea medications can help (only if they advise)
If your output changes and you are concerned always check with your doctor or stoma nurse.
*DISCLAIMER: The above information has been provided based on my own experience*
For those living in Australia, you would know how hot this summer has been! In fact, Australia is the hottest country in the world right now! What I never realised was just how much more the heat would effect me now that I have an ileostomy.
This is my first summer since my surgery and I just keep learning more and more about living with a stoma. Over the last couple of weeks I haven't felt too well and I just couldn't put my finger on why! Then it dawned on me yesterday that it has to do with my stoma and being summer that the heat has been affecting me!
We already know that everyday you are at risk of dehydrating due to ileostomy output, but I realised it is heightened when it is hot. I was drinking bottle after bottle of water lately and one of my 'Maxuus' electrolyte drinks and just couldn't keep my fluids up enough. So I realised when it is hot that I need to drink at least two of these drinks to keep from being dehydrated.
Keep an eye out for my post about 'Ways to reduce a watery output' and 'How to recognise if you are dehydrated'
I know that when you find out you need a stoma or when you have just had your surgery, that there are all these questions that you want to ask but are too embarrassed.
There were some questions that I was too embarrassed to ask but thought I might share these with you (based on my experience or how I learnt the answer myself).
Would people be able to tell that I have an ileostomy and would it be noticeable?
Answer: I honestly thought that it would be pretty obvious and something I was that anxious about I refused to go anywhere (unless it was to my Doctors, surgeons or stoma nurse appointments) as I was worried people would point and stare and would laugh. It isn't as noticeable as I imagines and I just had to change my clothes to be more accommodating like slightly baggier shirts or elasticised waisted jeans and pants. I have been able to wear dresses too! If it is tighter fitted clothing just make sure that you allow enough room for your bag as it will fill up and just empty it often as well.
Will people be able to smell it?
Answer: No, people won't be able to smell it and you won't be able to either. I often got paranoid that people could smell it but no one ever could. Just make sure when you empty your bag to clean the drain-able part on the bottom of your bag (if using drain-able bags).
How do I empty it?
Answer: When I first got out of surgery and for the first day I had nurses coming along to empty my bag for me (only because I wasn't very mobile and being on pain medications was a bit 'out of it') but I think a couple of days after my surgery I was able to empty into the toilet. For some people they sit right back as far back on the toilet as they can go and empty into the toilet in front of them but I'm not comfortable emptying it this way. Instead I lean over the toilet and empty the output into the toilet. For the first few weeks I was too sore to bend or lean when emptying so my nurses advised it was best to empty into a vomit bag then dispose of.
When I change my bag, my stoma is pretty active, how do I avoid this?
Answer: I found if I changed my bag right after I ate or up to a few hours after I last ate my stoma would be quite active and it does become overwhelming when you have your stoma all cleaned and prepped for a new bag, then it decides to work again. Then you need to clean and do the process all over again. Trust me there is ways to avoid this. I find changing my bag for me personally works best either before I eat in the morning or late at night/early morning. I know not everyone is awake at those hours but I just find for me that is when my stoma is less active and is less overwhelming to change.
My stoma is pretty gassy and most of the time it is just air. Is this normal?
Answer: Completely normal! As embarrassing as farting or passing gas is even without a colon you will still pass gas. Depending on foods you ate or what you drink will affect what gas you produced. But the reassuring thing to know is that it is silent and no one will know. Just think you can no longer be blamed for the farts of your brothers or dad! There are products like charcoal tablets that you can add to your bag to help control the gas, just ask your stoma nurse.
I get the feeling like I need to poo, should I be worried?
Answer: I remember a couple of weeks after my surgery I had this urgent sense that I needed to poo and I panicked worried had something gone wrong, or had I done something wrong. In a panic I pushed my nurses call button and she kindly reassured me that it was normal. I learnt that as I still had a little bit of rectum left that it will create a mucus plug which is normal bodily excretions, but we don't notice when we have a fully working large bowel and rectum. I find that if it is close to being 'that time of the month' that I will have this feeling. You just need to sit on the toilet and hope it passes or there are suppositories that you can also use. But it is completely normal and don't panic. Always ask your stoma nurse if you are worried.
I just emptied my bag and noticed my output was green, should I be worried?
Answer: If you have had something blue to drink, it most likely could be that drink. I was advised to drink at least 1 Gatorade or poweraide drink a day just to keep my electrolytes, magnesium, potassium and other important levels at bay. And also having an ileostomy I more susceptible to being dehydrated. So the first time I had one of these drinks I panicked thinking something was wrong, but it wasn't it was just the effects of the blue sports drink I had earlier that day.
I can feel a hard substance moving around in my bag, what is it?
Answer: There are quite a few types of foods that don't fully breakdown when they reach your stoma and will come out in whole. I find nuts, corn, peas, celery, mushrooms, lettuce, pineapple and foods with skins (chicken, apples etc) no matter how much I chew these just don't get broken down enough when it comes to excreting these at your stoma. It wont hurt coming out but be careful as because of their size they can cause blockages.
Will it hurt to touch my stoma?
Answer: No, your stoma doesn't have any nerve endings and there should be no feeling or pain when you are cleaning your stoma. If it does hurt please see your stoma nurse.
I think that covers the more embarrassing questions for now, or that I can think of. But if you have a stoma and have an embarrassing question you would like answered, please comment below and I will answer it for you (based on my own findings/experience).
Had a really massive day yesterday and so much good news came out of it!
I had another issue through the night with my bags and wafers they just weren't sticking! I arranged with the stoma nurse at the base hospital (who is lovely) to have a look and work out a sticking solution.
I found out why my bags weren't sticking!
Turns out I had lost a bunch of weight since the surgery so when my stoma was sighted (drew big dot on my tummy where the stoma was to go) I had at the time one big belly with a shelf like roll so it all sat nicely. Now I have two smaller rolls with a crease through the middle. So the bags weren't sticking to the crease!
We tried a new bag and wafer one they use for hernia's and uneven skin and voulah! It sticks!
We were able to mould this particular wafer to suit my uneven skin and moulded the wafer into the crease and reinforced with banana wafers.
So far so good!
I am feeling much more confident and ready to go home!
On other news was told my endometriosis so far has completely cleared away after the past 6 months of zolodex injections!
So I am in a good place today and ready to go home! So fingers crossed! x
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.
A 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.
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.