Friday, January 19 2018
I had wanted to write about this topic so many times last year, but each time I feared if I did it could somehow come across that I am some angry hermit who doesn't like visitors.
I don't claim to talk on behalf of all the people who are chronically or terminally sick, I simply am sharing mine (and my husband's) views of how we feel when you have surprise visits. Sometimes surprise or short noticed visits are difficult and stressful, you mightn't realise but there are reasons that make surprise visits difficult.
It could be very easy for you and your loved one who is sick to know how you can better support them and what things or actions don't help them. Finding how they feel about their needs or issues and how you can better help could be a starting point so you both can understand.
It is hard when you're chronically (and also in my case) terminally sick and trying to navigate the waters of keeping up appearances, being social and people visiting often surprised and unnanounced. I know people care and they decide as a last minute thing that they wanted to visit me for the day but don't bother telling me as "it is fun to surprise you" thinking it will make me feel great about myself having visitors, but they don't realise surprise visits cause me a lot of stress and anxiety which I explain below.
Don't get me wrong, I like when people visit but only if 2 conditions are met:
There were a few times over the past couple of years when people had surprised visited me and despite continually asking for no surprise visits, they still happened.
Family and friends were outside waiting and were upset and bothered when I didn't answer the door, because I was asleep and had my phone turned off so I could sleep.
I NEED notice when it comes to having visitors for a few reasons.
#1. I sleep a lot:
#2. My stoma leaks a lot:
#3. I often sleep starkers:
#4. I am often in pain and bedridden:
On days when I am bedridden I would love visits, providing you are understanding that I am in bed and you can sit in my room chatting with me. But don't expect me to get up and entertain you, defeats the point of being in bed resting. Don't ask "when are you getting up" or "why aren't you getting up" because it makes me want to kick you up the butt if I could because I don't need to justify myself to anyone.
#5. I can't just simply duck out to the shops:
If you arrive and we don't know in advance, even if you tell me in the morning, if Russ has already left for work it is too late. I don't have a car and can't drive much anymore, so if you surprised me it would mean I wouldn't have milk or cake or anything and would be a terrible host (again) and I would be feeling so anxious all day if you arrived worried that am I going to hear about this from others about how I am a horrible host... I don't mind if you do turn up unnanouced, just don't be upset if I don't have milk or coffee and can't get to the shops.
#6. I need a chance to cancel:
#7. Our house mightn't be visitor friendly:
I could go on about scenarios, there is so many more.
But I do love a visit, just prefer at least a couple of days notice at the very least to make sure the house is ready or that if you're staying the guest rooms are ready. You can visit, please just understand that turning up and surprising me isn't what works best for us.
I know it is hard to understand, but please do reconsider and try to give us as much notice for when you want to visit. I want to have a nice visit with you but I don't want either of us to feel uncomfortable.
If you do decide to that day or morning to visit, please give me as much notice as you can. If you arrived in Coffs at 9am but aren't visiting until 4pm Don't wait until 3pm to call me! Tell me first thing so I can have time to assess if I am up for a visit or under what terms. If you don't hear back from me or Russ before 4 hours before you're planning on visiting then it might not be the best day. If you don't hear from me, try Russ.
But if Russ says "today isn't the best day she isn't well" please respect his call.
Don't continue to turn up and then be upset if you're outside waiting for me for a while and I am asleep and don't know you're there until an hour after you've sat out there waiting. If you haven't heard a conifrmation at least 4 hours before arriving on if I am aware you're coming or if it is the right time, than maybe it isn't the most apporpriate time for a visit.
Again, none of this is said to upset anyone, I want visitors I really do - I just don't do well with surprise visits. My health IS declining and I am spending more time in bed, so surprise visits really aren't ideal for us anymore. #sorrynotsorry
As I said, ask your loved one how you can support them and what they need from you, in my case try to avoid surprise or unnanounced visits.
Friday, January 12 2018
NB: This post contains talk about poop
You always remember your first time doing a milestone. Well today I am celebrating the first time I showered without my bag on and boy I felt like a rockstar afterwards as though doing something mundane but great.... If you know what I mean.
There have been times where I have had a really bad bag leak, I'm not talking about a little seepage from under the wafer, I am talking a leak of cataclysmic proportions like a volcanic erruption or a poosplosion (the latter is real, trust me). My clothes, my linen and my mattress protector needed to be washed and soaked with napisan.
Then there was me, not only were the clothes I was wearing drenched, but so was I.
You know when you go to the beach once but for the next month you find sand everywhere and it gets into every nook and cranny? Well, that is how it is for me when I have a bag leak of epic proportions, except switch out sand for poo and you've got yourself a winner.
So in times of a cataclysmic bag leak it is best to just get in the shower and be hosed off and clean up the mess later.
I have always been hesitant though at jumping into the shower without a bag on, normally I would clean my self up the best that I could while sitting on the toilet and once a new bag is on I would then jump into the shower. Which often meant changing my bag afterwards.
I know what you're thinking, but WHHHHHHYYYYYY?
Well, it was simple....
I was scared.
I have never, in 5 years, showered without a bag on.
I know many do and many have many times, but I was always hesitant.
One of my fears, with my first stoma (May 2013-feb 2016), was because essentially your bowel is stitched to the outside of your abdomen I was worried about the run off from my shower gel or shampoo/conditioner would affect my stoma or cause irritations that might leave me presenting to the emergency department explaining my issue and people think I am silly for not knowing better. It really used to play on my mind.
So I never did try with my old stoma.
Then this new stoma (feb 2016 to now) is a total pain in the ass, it is retracted and sits under my skin, essentially I poop out of a belly button looking hole. So because of this I was always worried that the run off or chemicals would get inside into my small bowel and cause issues, because, well, soap and shampoo/conditioner shouldn't naturally be in your small bowel... so I worried it was just a recipe for disaster.
But with both stomas I was also worried about the mess side of things, like what if it were active during my shower, what if it were active while I was drying myself and would have to shower again and the circle would go on, and on, and on. I also can't bend over or get down to clean, so I was worried about leaving another chore for Russ to do, so I feel enough a burden when my bag leaks this badly and he has to help clean me up.
So back to my story.
I was in bed asleep all day and woke around 6pm to find my bag leaked, I called for Russ to help me as it was too much for me to manage to clean on my own.
Each time it is this bad he always says "just jump in the shower and hose it off", but every time I say "uhh, no it's okay I will figure it out".
Except yesterday I really had no energy and said "what the heck".
I took my bag off and disposed of it, that way I could clean my stomach better and easier.
I had my first shower without my bag on, it was nice to have water running directly on my belly as opposed to wet towelling and washers. It was nice. I have a handheld shower head which has different notches you can turn it to for different settings, so I put on the more gentle of the settings and didn't hurt.
I was worried about the repurcussions of an active stoma.... but to my surprise there wasn't any disasters. My stoma had probably expelled everything it had stored in there (daily I have bowel blockages due to tumour issues) so sometimes it works all of a sudden and leads to poosplosions like this.
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.
Thursday, December 14 2017
If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.
NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.
So in this Part 2, I will be sharing tips to help you be more prepared for the weekend
But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.
I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.
I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.
Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.
Part 2: Being prepared and tips to surviving the heatwave
I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.
Tip #1: Never leave kids or pets alone in a car
Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too.
I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.
A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.
What to do if you see a child or pet in the car?
You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.
For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.
Tip #2: Have plenty of water
You should drink two to three litres of water a day even if you don't feel thirsty.
Tip #3: Have electrolyte replacement on hand
Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.
Tip #4: Stay cool
If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.
You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.
A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.
Tip #5: Keep plenty of drinks in the fridge prepared
Tip #6: Have ice packs or blocks in the freezer
Tip #7: Keep blinds drawn
Tip #8: Wear light summery clothing
Tip #9: Be sun smart and sun safe
Tip #10: Reapply sunscreen often
Tip #11: Don't lie in the sun exposed
Tip #12: in case of a blackout
Tip #13: Open the house at night or evening if a cool change is forecast
Tip #14: Pets or wildlife
Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.
Tip #15: Keep your body cool but not freezing
Tip #16: Check in on those at risk
Tip #17: Watermelon
Tip #18: Foods
Tip #19: Wearing a stoma cover
Tip #20: Mashmallows
☟ ☟ ☟ ☟ ☟ ☟
I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.
Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.
More Links through my research:
If you have another tip, be sure to let me know in the comments below. To read part 1, click here
Monday, November 27 2017
I am feeling a mix of emotions right now, I am feeling so relieved that the magazine is finally ready to be published and shared with the world... but that part terrifies me!
I feel guilty for the delay, health issues happened, but I still worked hard when I could manage to get the issue out.
I also feel mega proud right now!
I hope you enjoy this issue, there is some great content in there and work for issue 3 is underway (summer/xmas/holidays issue) so if you have any content you want to contribute get in touch asap, or keep an eye on the facebook page too.
If you're a business and wanting to advertise - we offer affordable advertising options and also offer affordable graphic design too. I am also open to collaborations, just get in touch.
I am really hoping you love this issue, there are 2 giveaways too.
In this issue I launch my NEW Stoma Diary, this is an ebook that you can download for FREE and print or edit via your computer or tablet. It is aimed at helping NEW ostomates navigate the first 6-8 weeks post op and as they approach surgery. I have had my own stoma nurse look over it and she excitedly shared it with her colleagues too.
So sit back with a cuppa and have a flip through.
I have tried to get more male relatable content out there but struggling to get the guys to contribute, anyone that knows me knows I am stubborn and persistent and I endeavour to have more male content in here, I am trying my best so please don't be disheartened.
Finally, If anyone is wanting to join the team on a voluntary position I would love some social media help and develop a content strategy etc, I recently posted about this on the magazine facebook page too.
Anyway, have a wonderful night and I will anxiously await your feedback.
Saturday, June 18 2016
I was asked recently by a couple of readers if I could share some inspiration ideas for storing your stoma supplies that is practical, affordable and also easily reachable.
Then when I presented at a local stoma education day here in Coffs Harbour, I was asked the same question again, so I thought maybe it was best if I did a blog post with some inspiration to how I store my stoma supplies and how a fellow reader stores theirs.
Idea #1: Invest in a small cupboard
Idea #2: Invest in a craft storage trolley on wheels
Idea #3: Invest in a craft storage drawers not on wheels
Idea #4: storage drawers to fit in under your vanity
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.
Saturday, February 20 2016
For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.
I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having a new stoma created.
According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."
These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.
I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.
The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.
Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.
But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.
So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.
The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!
In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!
It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.
As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'...
I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.
It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.
If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.
I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.
Saturday, October 03 2015
Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.
I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).
While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.
I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.
So in celebration of World Ostomy Day, and for those who have or are considering having one, here are my 20 pieces of ostomy advice I have for you. If you are unsure of what a stoma/ostomy is, you can read about it here in one of my earlier posts!
Stoma tips and life-hacks:
#2. Your boobs become a valuable asset
#3. Invest in a hair dryer
#4. You'll find many uses for your hair dryer
#5. Avoid foods that cause blockages
#7. Avoid drinks that cause winds
When out and about:
#9. Always pack a spare change of clothes
#10. Jeggings or any elasticised pants will become a staple in your wardrobe
#11. Baby wipes aren't only used for babies
Stoma kit advice:
#13. Invest in some sort of room spray
#14. Always have at least 3 of each item on hand in your portable kit
Storing your supplies at home:
#16. Never wait until you're on the last handful or box of supplies before you re-order
Mental preparedness and a stoma:
#18. For me, my life truly began when I had my stoma surgery
#19. If he truly loves you, having a stoma won't matter
#20. You can still swim when you have a stoma
[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!
Sunday, August 23 2015
One thing that annoys me the most about having a stoma, is needing to carry around my stoma kit everywhere I go (when leaving the house, you know... to prepare for bag leaks as there is nothing more unpleasant than walking around with poo leaking everywhere... trust me) and to be honest I don't really have the room in my handbag to carry it around what with all the bricks that I must be hiding in there, because that thing weighs a ton!
So last week I went away to the Gold Coast to the ProBlogger conference and had one of those lightbulb moments where I don't know why I never thought of this before... and it was converting a toiletry bag (that is rather small) that I got for free when travelling on the Indian Pacific train into a stoma supply kit that was equipped enough to handle at least 3 bag changes....
Surprisingly, it fitted everything I needed from my kit including: 3x Stoma bags (really can't forget those), scissors, elastic tape (or banana stickies as I call them), 3x mouldable rings, garbage bags (scented), my scentsy room spray (a god sent trust me), stoma adhesive powder as well as the barrier/adhesive remover wipes!
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.
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!
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).
Friday, July 17 2015
NB: This post contains the word 'shit'. If you'll be offended by the use of the word, please stop reading now.
Sometimes when things go horribly wrong, all you can do to keep yourself from breaking down and crying is to just laugh... this was a scenario I found myself in this week... and after all 'shit happens'.. in my case quite literally!
You see, I was invited to Melbourne this week for an exclusive bloggers workshop and was amongst the company of some of my blogging idols and heroes (even being in the same room let along being invited to the same event was pretty huge for me personally).
But what is one thing that can go wrong when you have a stoma... and something that you only ever think you're being overly paranoid about when in public?
If you guessed having a huge bag leak then you guessed correctly!
I was halfway through a 4 hour meeting/workshop when I quickly ducked off to the toilets only to realise that my bag had started leaking and was causing a bit of a mess. Of course the toilets were all the way down stairs and my stoma kit was all the way up in a seperate room (where everyone's bags and luggage was kept).. so I was sitting in the disabled toilets panicking thinking "shit, what the heck am I going to do?".
See I knew if I was in the toilet too long it might look suscpicious, or it might be even more suspicious if I ran upstairs grabbed my stoma kit, ran back downstairs and spent the next however long doing a bag change... so I realised where it was leaking and the bottom part of the bag that you close up was no longer sticking closed, so I emptied it, gave it a bit of a clean with some handtowels and ran upstairs.
I then did a bit of a McGyver trick and got the elastic tape (or I refer to them as banana wafers) and taped the bag closed.
I returned to my meeting and resumed my seat until the intermission (when everyone was mingling over wine, cheese and appetisers) I raced downstairs with my stoma kit and DID THE QUICKEST BAG CHANGE IN MY HISTORY OF HAVING A STOMA. No joke. It was the quickest change I have ever done, and thankfully no one noticed I had gone to the toilet for a second time in only a short period of time.
But it made me realise that I could have been better prepared and in hindsight I realise how, and I hope to share 5 ways to be better organised for when shit strikes...
5 ways to be better organised for a meeting/work when your stoma bag leaks
#1. Inside your handbag, briefcase or laptop bag have a seperate clutch or toiletry bag, that is dicreet and doesn't look like a toiletry bag and inside have enough for 1 bag change. So when you need to duck off to the toilet just grab your clutch and own how discreet you're being. Even if you don't have to take care of a bag leak, at least then you are prepared for when the moment strikes and you need to transform into a stoma bag changing Ninja!
#2. Always get to your meeting earlier than expected to so that you can allow time to go to the toilet and empty your bag, as nothing is more embarrassing than trying to excuse yourself from the meeting and as your bag is full and you apply pressure standing up your bag more or less bursts and it can be rather embarrassing (this has happened to me before when I was studying on campus).
#3. Always have a change of clothes or underwear with you. This one can be a bit hard if you only have a small handbag, thankfully I have a larger tote style handbag that is big enough to fit a change of clothes in. But if you have a locker at work or school/uni always have a spare change of clothes on hand, so that you are ready for when you have a bag leak and you don't have to go home in poo stained clothes, or sit in soiled clothes for the rest of your shift.
#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.
Monday, January 19 2015
I try and be as ostomistic as I can about the whole 'having an ileostomy' thing, and never try and say that I hate it (because truth be told it is SOOOOOOO much better then sitting on the toilet in agony for most of the day). But there is one thing I absoloutley HATE and feel embarrased over, is the stench that is left behind when I empty my bag.
If you have read my post of the 10 things they don't tell you when you get an ileostomy, you would know my 4th tip was that "your output will smell horribly", which it does. I made a comment about how you should "be prepared to have many cans of air freshner, and one in your handbag" for when your out and about.
So I must admit I have tried the whole taking a can of toilet spray with me in my handbag when I go to the shops, and boy has there been some awkward stares when you are at the checkout line rifling through your handbag to find your wallet when out falls a can of toilet spray or as my husband likes to refer to it as "the stink be gone can", and you have to try and justify THAT YOU ARE NOT STEALING TOILET SPRAY... let's just say shit gets really awkward.
So what if I told you that I have found the perfect addition to your stoma kit, that not only will it not cause awkward or embarrasing stares, but will at least help you retain some of that dignity (that is otherwise flushed away).
For Christmas, my husbands mum and sister had made up this cute little basket filled with all these delicious smelling products, and one of them was a Bora Bora Blossom Room Spray. So when my mother-in-law mentioned well gave examples of times where it has come in handy and after seconds of spraying the mist the house smells so much nicer and the smell has completely faded away...
So of course my darling husband pipes up and says "Oh that would be awesome so you no longer stink up the house" (gees thanks Russ I love you too) it actually gave me a great idea for its use.
So off I went to add this spray to my stoma kit, and it is amazing! I spray it just before I empty my bag when in a public toilet (or at someone else's house) and then again once I have finished to be safe. And I love it!
It is compact and not bulky, it is discreet in the sense that it looks kind of like a body mist or perfume, AND IT IS SILENT!! No more of this "shooooooosh" sounds from the toilet cublicles as I spray the smell away, and no more waiting until everyone leaves the toilet before I emerge to avoid those judgemental stares!
Best of all, it is only $12.25 and comes in a 80ml bottle, and as you only need a couple of sprays/squirts at a time, you won't run out in a hurry!
Oh and did I mention it comes in a large variety of scents too?
Seriously though, this is my favourite item in my stoma kit!!
Sunday, January 18 2015
Are you looking at returning to studying on campus this year?
Well believe it or not that was some questions I had this time last year. I had just found out I had been accepted into a course I have been wanting to study for a few years and was worried how I could manage full time study as I now had a stoma.
So I thought I would share with you some tips/products I found that helped make my life easier when studying on campus, and a few of you have been emailing me this same question, so thought I best do a post for you all.
Sharing my 10 tips that made studying on campus with a stoma easier!
#1 Meet with the course coordinator or support officer BEFORE the study term kicks off
#2 Find the right bag/backpack
Some tips to remember when choosing a backpack:
#3 Don't have a heavy backpack
#4 Packing your stoma supplies
#5 Invest in a diary
#6 Pack your lunch each day
#7 Keeping your lunch and snacks fresh
Trust me when I say there is nothing worse than a yucky, hot, salad at lunch time.
#8 Keeping hydrated through the day
#9 Don't drive each day either take public transport or car pool
#10 Purchase a power bank for your phone
I purchased mine (a pink one) from JB-HIFI for around $40 and I take it everywhere I go when I am out and about, and when my phone starts looking tired and sick I just plug it in and give it a fresh bout of life!
I really hope that these 10 tips that helped me to study on campus with a stoma help you too!
P.S if you have a question or issue you want help/advice on, please send through an email from my website or a message via my facebook page. If my blog has helped you in any way please let me know!
Wednesday, December 17 2014
We all know that one person in the family that no matter where you go, they always forget to pack something!
In my family I am sure they all would say that person is me... I swear sometimes I would forget my head if it wasn't screwed on (lol).
I went away last weekend and in a rush packed my overnight bags and restocked my stoma supplies.....
I was in a rush and was rather fllustered and thankfully didn't have a bag leak as I just realised I grabbed the entirely wrong stoma bags!
So it got me thinking how many other people with Stomas are finding themselves stressed, flustered and overwhelmed in time for Xmas, and especially those who are heading away for the holiday season.. so I decided I would create a check list printable for you to download, print off and pack your bags.
Just like Santa, we need to make a list and check it twice!
I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!
If you think I have forgotten or left anything off the list please let me know!
Have a lovely Christmas, and don't forget to enjoy and cherish those loved ones in your life.
Wednesday, October 29 2014
Sometimes it can be frustrating when you spring a leak (a stoma bag leak that is, not a spring onion) or when you're trying to do a bag change and your bags just won't stick!
I have 5 handy and quick tips to getting your bags to stick better and help you to prevent a leak!
1) The very first thing I do when I am about to do a bag change is to grab one of my bags (don't cut it yet if it isn't a pre-cut), fold it in half and place under your boob. No joke- this works wonders! Because the glue on the stoma bags is more stickier the warmer it gets this is a great way to warm your bag up which means make your bag more stickier.... I KNEW having huge boobs would come in handy one day hehe
If you're a guy I don't think this step ^^ will apply to you (sorry)
2) Grab a hairdryer and put the settings on a high heat and sit there for about 5 minutes heating the bag up. Make sure that you are heating up the wafer part that will stick around your stoma. You don't need a fancy hair dryer, I just bought a cheap one from a department store and it works a treat!
3) Using your adhesive remover wipes (I love my Coloplast ones) ensure that all of excess adhesive residue from your last bag change is removed. I then using a wet washer will give the skin and area a bit of a wash (trying to not use a lot of soap as this can make bags not stick). Also make sure that the area is completely dry!
If you use Stoma adhesive powder, it is important to make sure that you wipe off any excess powder where your bag usually sticks, as this can also stop the bag from sticking. I use my skin barrier prep towlettes (like the adhesive removing ones, also coloplast) to prepare my skin for the bags and to remove any excess powder etc.
4) When I am ready to put the bag on I get both hands and kind of put them around the stoma (one on either side of the wafer plate) and press firmly and hold for a while. This adds extra (natural) heat to the bags and helps to make them a little more stickier.
5) To create some extra reinforcement of the bags I use 'banana wafers' (correctly known as elastic tape) and I use two of these to help secure the bags. One wrapping around the bottom and sides, and the other wrapping around the top and sides.
Those are my 5 quick tips to make your bags more stickier!
If you have some quick tips that you've found to make bags more stickier share them below!
Tuesday, October 28 2014
Guess you never thought you would hear the words "Garbage bags and why you should love them" strung together in a sentence before......... Well that was until you heard me say it!
Now... before you get all uppity about how bad garbage bags are for the environment and how I am a horrible person for suggesting you should love them.. but if you let me explain why I have a new fondness for garbage bags, you will understand.
Over the last 18 months I sometimes get overwhelmed when doing a bag change due to the smell (which I imagine is a pretty normal thing to experience) and partly why I don't enjoy the bag changes is because of the smell.
But the other day when my husband was doing the grocery shopping, he had a pretty thoughtful gesture and decided he would buy me some garbage bags to try for when I do a bag change.
Up until that point I had been using a plastic bag (and thoroughly check for holes) and proceed to do the bag change.
But he (my husband) didn't just stop to get any ordinary garbage bags... he got small purple lavender scented garbage bags.
You wouldn't think something so.... boring would be quite effective!
I love purple and lavender and I honestly don't notice the smell when I am doing a bag change.
So HUGE thank you to my hubby for being so thoughtful and thinking to get me to try scented purple garbage bags!
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.
Monday, May 05 2014
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
I often would be sitting there for HOURS patting my bag dry and would become so frustrated and
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'
So after my first class I found that although the rest of me was dry I had to drive home from the
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
Introducing the Wovii- The Super absorbent
I took my wovii along to my swim class today and within seconds of drying my skin
Normally towels are so heavy when they are wet
When I got home I got the wovii and wrapped it around my stoma bag for around 5 minutes
I am so happy to have found this amazing towel and it seriously will make my life
*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*
Thursday, January 09 2014
When you are adjusting to your new stoma it is often quite overwhelming when you do your first few bag changes.
I have found over time that the best way to making bag changes easier and less overwhelming is to be organised.
For the first few months I was using a little side coffee table that I had in my bathroom and would have my supplies stacked underneath it.
I was pretty lucky to find a cupboard on a local selling site for only $15!! A complete bargain right! This was the most perfect find as it fits perfectly in the space between where I sit to do my bag changes and the shower. I have it set up so that when I am seated I can easily lean into the cupboard and grab the supplies I needed.
I also still use the little side table and have it beside where I do my bag changes so that I can have easy access to my supplies!
Tuesday, April 02 2013
You might be wondering what an ostomy is, and I will try my best to describe from my knowledge and research. Often you will hear or read ostomy and stoma that are used but have very different meanings. Most commonly you would have heard before 'colostomy'. Until my surgery I assumed an ileostomy was a colestomy. So I found it great to know the difference.
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.