Skip to main content
#
Feeling Ostomistic
Tuesday, October 27 2015

I have spent a lot of time over the last couple of years in hospital, often my stays (90%) have been in the public hospitals as a private patient and while you don't always get a single/private room due to these being given on an availability or clinical needs basis, it often means you are needing to share a room with other people.

There are two types of shared rooms in a hospital, there is twin share meaning there is one other person in your room or their is a 4 share room meaning you are sharing a room with 3 other people whom should be of the same sex as you.

I just got home from a 12 day stay in hospital and it reminded me of this post I started writing earlier in the year after having had spent 5 weeks in RPA and it was a horrible time mostly because I feel that others don't quite know or understand the etiquette that should be practiced when sharing a space with others... mostly it comes down to being respectful, but I will share some etiquette that should be followed (and if you have your own feel free to comment below).

Hospital etiquette when sharing a room in a public hospital

#1. It is not the time or place to LEARN how to play the ukulele
This legit happened, I was in RPA sharing a room with someone for the entire 5 week stay and in around week 2 she purchased a used ukulele downstairs at the flea market and decided that now was the perfect time to learn how to play. This involved trying to tune it, playing youtube videos over and over and over and attempting (I use that word lightly) to play.

It not only was annoying, but I don't think this is the place for it when you're in a hospital which is a place of rest to be playing or learning an instrument.

#2. Use headphones
I know that when some people are in the comfort of their own home that they might like to play their music or movies from their laptop at a loud volume, that you shouldn't do the same in hospital.

By all means bring your laptop to listen to music or watch movies to entertain yourself, I know I do, But I ALWAYS wear my headphones as to not disrupt or be disrepectful to others in my room.

#3. Rest periods mean rest periods
This means that your visitors should be mindful of the times and leave for the hour or two hour break. It also means this is not the perfect time to watch your TV loudly or have conversations on your mobile.

While you yourself might not be tired, your room-mates might be feeling exhausted from having had visitors themselves, or they might be wanting to use the time to rest and recoup with a nap before the evening.

But the rest period is also a chance that the Nurses or Doctors can do dressing changes or consults without interrupting your visitors and give you some privacy.

#4. Privacy
This one should be a given, but not everyone might be as social as you or might just be wanting some privacy. If a patient has their curtains fully closed it might mean that they want some privacy and are not wanting to chat, but it could also mean that want their own space.

When I was in RPA earlier in the year, I felt my personality clashed with my room-mate and she just couldn't understand no matter how many times I or the nurses told her that I wanted my privacy. Yet she would continually walk in through my curtains and sit on my bed and talk to me. Or this one time she picked up my hand and tried doing a palm reading and I asked her to stop and go away but she didn't understand boundaries.

It also is important to be mindful that when a doctor is visiting a patient (as hard as it is) to not eavesdrop on their converstation and if you are please do not talk over the doctors and interrupt the conversation with your opinion. I was told I had thyroid cancer during that hospital admission and I was so upset from the news and my room-mate was talking over the doctor telling me "stop crying, get over it and her life is so much worse than mine" (no joke that was what she said). Thankfully my doctor spoke back and asked her to mind her own business and that I had every right to be upset.

It is important to remember that others value their privacy.

#5. Being in hospital isn't the time for a get-together
I know it isn't a given rule that you shouldn't have 10 people visiting at the same time that it should only be 3 at a time, remembering that those whom you're sharing a room with might be having visitors as well and if there is say 30+ people in the room it can become rather noisy and crowded and disrupting.

I know when my whole family (there is 10 of us) come and visit I walked (or was pushed in a wheelchair) to a more private part of the hospital where there were lounges and a place to sit. We even sat outside in the courtyard to talk and catch up, as I didn't want to disturb my room-mates as I know how annoying it is when someone has 10 visitors at once.

#6. Try not to be so negative
It has been spoken about a lot (and I did a research paper on this at uni when I was studying Nursing) that negativity can be rather toxic on your body and those around you. If you are someone that is constantly negative and wallows in self pity and enjoys throwing a pity party, this can soon become toxic and make those around you feeling down as well.

They say positivity is contagious, and I know when I am around negative people I feel so much worse as I am a bright and bubbly person and I am someone who will always see the positive side to things. I live by the mantra (thanks to my ever so wise dad) that "No matter what happens today the sun will always come up tomorrow".

#7. Do not talk about others behind their backs
This happened when I was in a local hospital earlier in the year, I went to the toilet and this guy and a girl I shared a room with (who were truly horrible people) thought that I had left the room completely and that it was the perfect time to gossip about me. (Ironically it was the same room and same bed that I had just been in the last 12 days)

I heard one (the guy) say to the lady "so what is her issue other than being fat. Gees has no one told her she needs to lose weight".

I walked as quickly out of the toilet as you can when you're wheeling the drip pole, and I lost it. I don't normally lose it but these people had it coming! I told them how dare they think it was okay to be so judgemental when they not only didn't know me or my story but to think it is okay to gossip about someone so loudly when they are in the room.

They replied "we will just wait till she leaves to continue gossiping". I ended up walking to the nurses station crying asking to be moved either to a new bed/room or to the private hospital as I shouldn't have to put up with that shit. Besides I was in there for pancreatitis and stress makes it even worse.

---------------------------------------------------

While this is just a short list of etiquette practices that should be followed when  staying in hospital and sharing a room, it is important to remember to treat others as though you would like to be treated and it should just be common courtesy to be mindful of your surroundings and respectful of other's right to quiet and privacy.

If you have had a bad experience when sharing a room, feel free to comment below.

 

 
Posted by: Talya AT 06:40 pm   |  Permalink   |  0 Comments  |  Email
Friday, October 16 2015

Earlier this month on the 2nd of October, I travelled the three hours south of Coffs Harbour to Port Macquarie where I had an operation to put in my portacath (port for short) for ease of use/access during chemo.

I just realised how funny that I had to go to Port to get a port (HAHA).

I spoke with a couple of friends who I met through Canteen that have gone through treatment and I asked them how they got their chemo. One said she first had it via a drip in her arm then got a port put in and loved it, and my other friend had a Hickman line.

I had met with the vascular surgeon and he showed me the port I was getting, which was this awesome metallic purple Power Port and given purple is my favourite colour I thought that it was the coolest thing ever, although my doctor thought I was weird given that you won't see it as it is under your skin... but knowing it is there and that it is purple is all that matters!


This is the Purple Power Port

On the day of the surgery:
I stayed at a motel close by the night before and a friend picked me up to drop me to the hospital at 7am ready for my admission.

Once at the hospital I was admitted by the nurses and then was called in to see the aneathetist, where he had decided I would need to be intubated during the procedure (means a breathing tube down my throat due to sleep aponea).

I was called around to theatre and had a drip put in and went off to sleep and woke in recovery an hour or so afterwards.

When I was ready, I was wheeled around to the area where you sit and have something to eat and be monitored before you're discharged and spent a few hours there. The nurses had Cat Stevens playing and the Eagles which were two of my dads beloved bands he listened to, so it was rather comforting in a way.

I was really stiff and sore from the procedure and having had the tube down my throat so I tried not to talk too much and sought comfort in icecream and cold drinks, which rather soothed my throat.


Me after my surgery

The night after surgery:
I found it so hard to lie down and sleep, given that I sleep on my right side and my port is on my right side, and it also felt like it was pulling a lot when I walked. So I slept seated/reclined on the lounge.

It reminded me of my thyroidectomy surgery and how my head felt all stiff like it could just fall off.

I was in a lot of pain as well, so I had some pain medicine to help keep me comfortable.

How is the port accessed?
On the 7th I had my first (unsuccessful) attempt at chemo. It was the first time my port was accessed and I was given a numbing patch to put over the top of my skin above the port. It was still really swollen and sore so they had to use a 1 and 3 quarter needle to access it.

It was a little tender having the needle put in, but the numbing patch helped a lot!

I had to do a lot of different tricks to get the port working and eventually it worked. Tips and tricks included:
-Turning head as far to the left as possible
-Taking deep breaths in
-Coughing
-Putting my right arm above my head
-Laughing
-Talking
-reclining right back and trying all the above methods
-Sitting up and trying all the above methods again


My first attempt at chemo and port accessed

It turned out the needle was defective, so they tried a new needle and it worked using the head turned far to the left and coughing tricks.

I have since had my port accessed multiple times during chemo, but also for fluids when I have presented to the Emergency Department with dehydration and fevers.

For more information on ports and if it is best suited to you or your chemo regime speak with your oncologist or your chemo nurse who can provide you with booklets and information.

 

 
Posted by: Talya AT 07:43 pm   |  Permalink   |  0 Comments  |  Email
Thursday, October 08 2015

October over the recent years has become known as the 'pink month' a month dedicated to the sole purpose of raising awareness of breast cancer but also to encourage women young and old to take charge of their health and become more breast aware.

It wasn't until a breast cancer scare earlier this year that I realised I needed to be more aware of my breasts (even though they're so in my face I can't not know they're there) but more be more aware of the changes and dangers going on inside.

In February I had my routine pet scan which my thyroid, breast and stomach lit up on the screen. I was told that there is something suspicious going on in my breast (left) and that I needed to have it checked out.

The following week I was admitted into hospital to undergo a bunch of routine investigations into my breast, thyroid and armpit. First I had the ultrasounds done on my thyroid and breast and stomach, which were followed by fine needle biopsies done of my thyroid, stomach and breast.

The breast biopsies were inconclusive, so I was scheduled for core needle biopsies, a mammogram, another biopsy this time putting in metal clips as identifying markers, another mammogram, then a CT scan a few days later.


My left breast after several biopsies and core needle biopsy... ouchies!

Thankfully my breast wasn't cancerous and I am monitoring it every few months for changes, and while I am lucky that the changes going on in my breast were detected early, there are thousands of Australian women who aren't as lucky.

Did you know that in Australia 1 in 8 women will have breast cancer by the age of 85? Breast cancer is up there with bowel cancer as the leading cause of death among women (according to the ABS).

So I am wanting to raise awareness of breast cancer this month and also as a unique way of celebrating 200 likes on Facebook (thank you all for the support), I decided I would set a little challenge!

If you head over to my facebook page by clicking here, you will find an album of 10 FREE fb awareness covers for you to download, save and upload, these you can see below.


But there is a catch....

As I have created these awareness covers for you to use for FREE, I ask that you join me on a challenge I have set for this month...

#1. I ask that you become more breast aware this month by giving yourself a thorough check of your breast and armpits for any lumps of noticable changes. If you're eligible to visit the breast van for screening, look into making your appointment. You can also speak with your GP about having a breast aware check done.

#2. If you happen to see any fundraising being done this month for breast cancer awareness, even if it is only $2 please donate and support the cause!

So... will you join me this month towards being more breast aware?

Not sure what involves a breast mammogram, biopsy or breast ultrasound? Stay tuned for these posts coming soon!

 
Posted by: Talya AT 02:07 am   |  Permalink   |  0 Comments  |  Email
Monday, October 05 2015

NB: This is a Sponsored Post

For most of the families or couples I know, live on a budget and it is often paycheck to paycheck. I know this is the case for my husband and I aswell.

It wasn't until my husband lost his job in 2012 (when his employer went into administration) and at the same time my hours had been reduced from 24 contracted hours weekly to 4 (unless I picked up extra shifts), so I had to learn quick smart a) how to budget, b) how to make the money we have from each pay count and c) how can we manage when there is more money going out than coming in.

Up until this point, I had never created a budget. But once I had, I saw how much EASIER it made managing the bills, and three years on I am still finding the success it has helped us to better manage our finances.

I wrote a list (table) of all the money that we had coming in, and all of the money that needs to go out on bills and also allowing for food. Because of how tight things were I didn't allow for things like shopping, movies, going out for dinner or date nights as these were 'luxury expenses'.

My expense list looked something like this: (NB: this is an example only)

Then there were the yearly bills like car registration and CTP Greenslip (so roughly $1000 annually) which I put $20 a week away into a seperate savings account so that we had the money there when we needed to register the car. 

Up until the last month, I have been paying the same amount in bills as I had done 3 years ago. But it got me thinking that IF I reviewed my current bills what potential savings could I find?

Reviewing the mobile phone plans:
The first thing I reviewed was my current mobile plan. I thought years ago (when I worked at a local Telstra Business Centre) that the best plans for value were the ones for business customers, so the last however many years I have been paying a lot when I was barely getting any value.  And being in the country, I needed to have the best mobile coverage so it kept me loyal to telstra.

Turns out, if I went back to being on a consumer only plan I can be paying less a month with unlimited calls, unlimited SMS and a whopping 6 GB of data (considering I went over my previous 1GB allocation each month, this was exciting). I also was given 25GB as bonus data during my first month and I could also get an iPhone 6 for less than I was paying previously!

With this new plan, it also meant that if my husband transferred his phone account into my name, and if it were on the same bill as mine he could drop down to a $50 a month plan with 2.5GB of data (when added to my data we now have 8.5GB to use each month) and he gets $1000 in call allowance too.
We saved $50 a month in my husband's plan alone, and $60 a month in mine so $110 a month in total!

Reviewing your bank accounts:
I have found before from my own personal experience and from working in a bank, that it is good practice to review your loans and bank accounts at least annually, as circumstances change it is important to ensure that the loan and products are still working the best that they can for you especially as the interest rates are always changing.

I recently reviewed our Personal Loan we took out when we purchased our car, and found that the current interest rate we have is almost 3% lower than the current rate offered.

However, while we haven't saved any money from reviewing the loan we are in the process of hoping to buy our first house and have plans to incorporate that loan into our mortgage, which will mean we save $135 each week

It is also important to give your loans a health check to make sure that you are still covered with the protection side of things, not only does it offer peace of mind if you were to become sick, to lose your job or pass away, that if you're eligible for the protection it is worthwhile having. I know I had to use the insurance side of my loan and credit card when my husband lost his job and the payments were covered for 3 months. Going off of our loan, that was a saving of $135 a week or $1620 in total that was then able to be used towards other bills.

Credit Cards and Balance transfers:
I know how hard it can be to fall into the trap of having a large credit card debt, and no matter how much you're paying in repayments each month it still feels like you're being killed by the bank's interest rates!

I have learnt over the years how to save money on your credit card, and more importantly how to make your credit card work for the best for you. (keeping in mind that advice is general based on my own experience and you should always consult financial advice and read the Product disclosure statements)


With the Credit cards, sometimes it can feel like you can never get in front of the repayments, and when times have been tough I had a balance transfer of our credit card and it helped us save so much money! The benefit of the balance transfers is usually the banks offer a promotional period say 12 months where they won't charge you interest on balance transfers during that period.

We did this on our bankwest credit card for $5000, and we were able to budget and pay it off in a whole year! We set a minimum of $50 a week payment and if there were weeks where we had the $100, we would pay that amount.

By doing a bank transfer we were able to save ourselves paying 19% interest p.a on the credit card, and it means that we now saved ourselves approx. $915 p.a in interest!

Reviewing our Home insurance:
A few months back, I was speaking to a friend about "adult things" which included talking about insurances and stuff. She told me that she was paying almost HALF of what I am paying, and she was the same age just different suburbs.

I always put down the fact that our insurances cost more than my friends was that it apparantly "floods" and a "high crime area", so I never thought anything more of it.

So I started to shop around and get quotes, and while I found a few that were happy to offer a cheaper rate it came at the risk of "due to the known risk of flooding, we will insure your property excluding flood". Knowing my luck (since I am not THE MOST LUCKIEST person that it would flood).

So I went back to our existing insurer whom we were currently paying $3000 a year in premiums, and said we were looking at going elsewhere unless they could help us with a better quote.

They came back and said as we were only renting we could have just contents insurance. Imagine my surprise when it came in at only $612 a year! That was less than $60 a month and less than $15 a week! We were paying $250 a month before or $60 a week!
So we saved ourselves over $2300 a year!!

Reviewing our Private Health Insurance:
I know in the past when things have been a little tight, my private health insurance (along with my car and home insurance) were some of the expenditures I was willing to let go. Not because I felt I didn't NEED them, because I did but because it was an expense I couldn't justify between meaning if we have insurance for this week or if we ate food this week.

There was no doubt the struggle was (and for many) real, and I know how important it is for your money to be spent in the best way possible for yourself and your family.

One thing I recently learnt, was that I needed to review my Private Health Insurance more regularly than every 5 years!

I have been with my current provider for going on 5 years, and I thought I was happy with the cover being top hospital and no extra's and that I thought at $70 a fortnight I was getting a great deal.. I was happy until a couple of recent circumstances where 1) they would only cover my chemotherapy IF the drug was on the PBS, and 2) they no longer cover aneasthetics and I had a $1000 bill from the aneathetists for putting in my port. After speaking with the aneathetists secretary she explained that my health fund WAS the only fund they have to charge to the client.

So I was on a mission and enquired through Health Insurance comparison with the type of cover I have now and what I pay, and wanted to find out if there were comparative policies that:
1. covered aneathetiscs
2. was top hospital cover and covered surgeries
3. Had a partnership with the hospitals I frequent
4. Included ambulance cover

The consultant was SO helpful and talked me through my existing policy and comparing policies that were better.

He came back with a plan through AHM that was $3 less a fortnight, included extras like optical/dental/chiro/physio/remedial massage. Or if I wanted just the extras for my husband it was only an extra $10 a fortnight of what I am paying now!

Not only has Health Insurance Comparison helped me to save a lot of money such as $1000 aneathetists bill for 1 hour for admissions I needed it... and if it were based on my surgeries this year it could be over $20,000 a year it helps me to save! PLUS the rebates with extras like dental and optical too!

Hot tip: If you are done having children and no longer require having pregnancy or birth related inclusions, remove these from your policy and you will already be saving!

Thank you Health Insurance Comparison for such a seamless process to help compare the right health insurances for myself, and for helping me to save money on future surgeries. Don't forget to compare, save and go in the draw to win a year's health insurance for free!

So while you might feel loyalty to a particular company, you also need to feel loyal to your wallets and if you can shop around and find a better deal on other areas of your financial spending (power/gas/phone/internet/loans) you can afford to go on that nice holiday, or better yet buy that pair of shoes you WANT but probably really don't need...

or better yet... do what I am doing and using all of the savings and money you would otherwise have spent on bills towards purchasing your first home!

Thank you for reading my 5 top things to review when you're living on a budget to help save yourself a lot of moolah!

Posted by: Talya AT 06:18 am   |  Permalink   |  0 Comments  |  Email
Monday, October 05 2015

NB: This is a sponsored post

Sometimes in life, things happen that can be unexpected and often out of our control. But if we are prepared and have a contingency plan in place, it can help us to navigate through those difficult times with a bit more ease.

A contingency plan, is a plan that is designed to be implemented during a future event or circumstance. A contingency plan is also sometimes referred to as a back up plan or a risk management plan.

In my life, I have several of these risk management plans that I have shared with those that it most affects, and in each of these plans it explains in detail the steps that need to be taken.

Some contingency plans you might have (or need) in your life may include:

1. A will
This is probably (in my honest opinion) one of THE.MOST.IMPORTANT  risk management plans you can have in place. A will not only explains your wishes for your belongings and assets, but also can be important if you have young children to detail whom you wish to care for them in your absence.

If you have a blog or an online business (digital assests), there is also now an added clause that allows you to explain what is to happen to these when you die. You may wish to have your social media accounts closed, or request to have these left open as a memorial; or in my case I have specific instructions regarding my blog such as the hosting is to be continued to be paid and my site is to be continued to remain active for a resource that my younger sisters or anyone needing a safe place to turn to, can still do so. I even have a blog post (unpublished) and content that is to be updated to my site when I do pass away, so that others know that there won't necessarily be someone to answer any queries directly.

But your will should be updated every 2-5 years, as life happens and circumstances change, it is important that these are reflected in your will.

2. A funeral plan
You might have specific instructions in your will on where you want to be buried or cremated, or how you wish to pay for your funeral, or you might have been super prepared and met with a funeral home and have your funeral already pre-paid and planned out so that when you did pass away your family were able to grieve and be there for each other as opposed to making funeral arrangements.

I know that talking about your funeral wishes can be rather morbid, personal, upsetting and confronting to our family and friends, but it might help you feel at ease when times are tough and you are battling some serious health obstacles that you know your wishes are known.

For me, I know this is something I have done, and it was really hard being only 24, but the reality that I am faced with is one that is uncertain and I know when the going gets tough that this is a plan that might need to be actioned.

I have told my husband (and have it in writing and in my will) that I am to donate my body to science due to my rare disease and progression of said disease so that they can use my body and tumours to study and hopefully I can be part of a cure moving forward. I wish for my remains that aren't needed to be cremated, and for a joyful ceremony to be conducted at the botanical gardens where everyone is to wear bright and happy colours, and where it will be a celebration (a memorial service as you will) rather than a saddened atmosphere.... after all, I am a happy and bubbly person!

Up until I got sick, I had always wanted to be an organ donor. But knowing now that my organs and body parts wouldn't be able to be used by another I decided instead to donate my body to the organisations studying my disease and making a cure.

3. How you will pay your mortgage and bills if you were to lose your job?
When you take out a loan, credit card or mortgage you will be asked if you wish to take up loan protection. A lot of people are reluctant as they see it as an additional expense, and in truth we think that our jobs are secure and we are safe.

The reality is that you can never be too safe or secure in a job, and from my own personal experience it is something I realised was important to have in place.

My husband and I had always had protection on our loans in case we got sick or lost our jobs and was arranged through our loan provider. We had this for one of our car loan. Then in early 2012, I found ourselves applying for a quick fix finance loan for $15k to consolidate a couple of credit cards and a loan I had to take out to pay for my colonoscopy (which was $5k). 

My husband and I thought we were safe in our jobs, he had been working for a national company for 5 years and I working for a bank for the past 18 months. We were on really good incomes and planned to only have this loan for a couple of months so we could pay it in one loan and have a bit more breathing room. Because we only planned on having it temporarily we declined the loan protection.. our interest rate was 40% so we knew it needed to be paid quick smart.

Three days later, I was told my contracted hours were being reduced from 24 to 4 a week due to the bank doing a massive job cull and reshuffle and there wasn't the hours there.... it was okay, I knew we would be fine as we still had my husband's job...

The next day we got a phone call saying his employer had gone into administration and that they were closing in a month.

HOLY CRAP!  We now had $15k of debt that wasn't covered and we had no idea how we could make the repayments at 40% interest... we regretted the decision 4 days earlier to decline that loan protection.

Lesson learnt, never be unprepared again! I have since made sure that our loans, credit cards are covered and that my husband has income protection through his life insurance, which our friends over at Life Insurance Comparison can also help with!

4. What were to happen if you were no longer able to care for yourself and you needed to move into a residential facility or home?
I know we often don't like to think of what will happen when we get older, or what were to happen if we were to become permantly incapacitated, but this is a plan we should certainly talk to our family about and express our wishes while we still can.

While we might want to always stay living our life out in the home we love surrounded by family, this might not always be as easy as we wish. If there is round-the-clock medical care we need this can become rather expensive to organise to happen in your home and it might be easier on ourselves, our family and our carers if we were to live in a residential facility where we had the help and support we need.

It is also important to consider the safety aspect, will this be safer for me as a long term plan? And the finance side of things needs to be discussed to, whether you can afford it or how you plan on paying it. This could be something you incorporate into your retirement plan to accomodate for additional later-in-life medical costs.

5. How will you or your family survive if you became sick and unable to work or if you unexpectedly passed away?
I decided it was best to leave the most important contingency plan for last, which is of course, talking about our life insurance.

We protect our homes in the event of flood/theft or fire, and we protect our cars in the event of a crash, but surprisingly we often don't think about insuring number #1 (ourselves).  I know I thought of insuring my husband before I decided to insure myself, which by the point I enquired I was 19, recently diagnosed with FAP and was told that if I "got to 40 without cancer and had a total colectomy, I could then be insured".

I always assumed that life insurance was only of benefit when we died to help pay for things like our mortgage or help support our families.

But DID YOU KNOW that you can access insurance if you were to become sick or disabled? Well it can! Our friends over at Life Insurance Comparison, helped to explain in a guest post for us how Life insurance can help you while you're alive and when you become ill or disabled. I really reccommend having a read, as I know I (and a lot of my readers) found it rather valuable and learnt something new about the importance of insurance and how it can help them!

This post was sponsored by:

 

Posted by: Talya AT 12:53 am   |  Permalink   |  0 Comments  |  Email
Saturday, October 03 2015


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

[end of advice]

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

Posted by: Talya AT 09:32 pm   |  Permalink   |  0 Comments  |  Email
Facebook
Twitter
Google+
LinkedIn
Email
Add to favorites


~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

FREE Pattern

With thanks to Harley B for this
FREE pattern. Full tutorial is on
my blog
. Have fun creating!

Pattern ©Harley B Handmade 

 Latest Posts 
 Categories 

Have you heard about our new eZine? CLICK HERE to learn more!

 

Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

Copyright © 2017 Feeling Ostomistic. All Rights Reserved. Logo by Made by KaleWeb Design by SiteFresh