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Feeling Ostomistic
Thursday, May 29 2014

Menopause... The one thing women dread about getting older and going through 'the change of life'.

You always hear women express their feelings towards menopause and as a young women you think
"surely it isn't really that bad".

Boy was I wrong!

When I was 21 I was diagnosed with stage IV endometriosis and had surgery to remove what was found.
On my right ovary I had a 15cm round mass (an endometrioma) which was removed along with the lining of my ovary.
I also had a 7cm mass removed from my uterus along with another 5cm mass.
Through the use of lasers over 200 1- 2cm sites were excised.

I remember waking from surgery and my surgeon came to speak to me when I woke up.

He told me that in his career, my case was one of the more worse conditions he had seen, and as a result of the damage
that I would need to be placed in a medically induced menopause for 6 months to try and let my body repair.

I was prescribed 6 courses of Zoladex injections and given my first the following morning.

I had no idea what to expect!

All I kept thinking to myself was
"doubt menopause would be that bad".

Afterall I was excited to not have my period for 6 months!

Ever since my first period (was in year 5) I have had extremely bad period pain along with heavy periods.
When I was in year 7 the pain started getting that bad that I used to vommit and would curl up in a ball and just cry.
Later it became a 'norm' to get diorreah and bleeding during my period.

No one believed how bad my periods were. I kept being told to "just suck it up"
and that it was only "just period pain".

It wasn't until I was staying with a relative in grade 9 when I was up all night with vommiting and diorreah
and bad period pain, that she came and chatted to me about it.
She told me how much she suffered (even to this day) with periods.
She sympathised with me, she cried with me, but she also gave me something to help control the pain.

Due to events that happened I ended up moving in with her a couple of months afterwards, and one of the first things
we did was to go to the doctor. She was determined to get me the help that I needed with my periods
as they were just getting worse. We tried all sorts things from different types of the pill,
to specific period pain medication available over the counter.
Nothing helped!

BUT one thing doctors kept saying when we discussed endometriosis was that
"Young people don't get endometriosis".

My periods became that debilitating that I had to have time off work and school, and often I would be at work
(I was a checkout operator) and suddenly would get pain, nausea and passout.

They were never regular enough that I could 'predict' and
so many people (except for my Aunt) thought I was faking it.

When I got older, I found my periods and symptoms each month were getting worse and
I was lucky in 2011 to have found a GP that wanted to look into what was going on
and wouldn't just pass it off as 'being overweight' like many before.

He got me reffered to a specialist who listened and understood and empathised.

He told me that in 2 weeks he would book me in for a cystoscopy, hysteroscopy and laperoscopy.
He was determined to find out what was wrong.

I was so relieved when he told me I had endometriosis,
it meant years of sufferring finally had a name.

So I started my 6 months of injections of Zolodex and was happy I had no period.

But I must say I sympathise with all those who complain about menopause and how horrible it truly is!

The hot flushes were the worse!
I always felt hot and gross and would be standing in line at the supermarket and next minute I am dripping in sweat
and feeling like I am ready to just about to pass out.
It was so humiliating!

The vaginal dryness was pretty uncomfortable and at times felt like sandpaper. Was horrible!
Made sex more uncomfortable then it already was (down side to endo is painful sex).

I found there were some days where all I could do was lay in bed due to the horrid nausea.
If I ate food I would have to try so hard not to fall asleep afterwards.

The other downsides to the menopause was the weight gain, excess hair growth (now have a beard),
the headaches, moodswings, hormonal and bloating.

Gosh, I would just break down and cry at the slightest thing whether it was reading a newspaper, watching tv,
talking to someone... just anything slightly sad I was just a blubbering mess!

Although they say that it was a reversible menopause, it has been 12 months since my last injection
and I still suffer from some of the symptoms. My periods returned around 3 months after the last injection 
and have never been the same. I have spoken to my doctors and they said sometimes it effects the hormones that much
that it can sometimes still be like part of your body is still in menopause.

I still have the excessive facial hair issues, hot flushes, hormone fluctuation and nausea.

Part of me is dreading having to go through all this again,
......but for real this time!

When people learn that I went through menopause at 21 they don't believe me or that
doctors can medically induce a menopause.

Please remember zolodex and menopause affects individuals differently. Due to the pain and recovery from the surgeries
along with the medically induced menopause I had to cease working and employment. The week after I stopped working
I learnt that I was needing to have my bowel removed within the following 6 months. It was a very trying and emotional time.

Menopausally yours,
Talya xx

 
Posted by: Talya AT 12:19 am   |  Permalink   |  Email
Tuesday, May 27 2014

 

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

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

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

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

10 tips for helping prepare for a colonoscopy

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

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

DO NOT SCULL THE COLON PREP SOLUTION.

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 
Posted by: Talya AT 03:55 am   |  Permalink   |  2 Comments  |  Email
Saturday, May 24 2014

Proctolectomy:
Is the surgical removal of the rectum and all or part of the colon,
and is common surgery for Familial Adenomatous Polyposis and Ulcerative colitis.

Recently I celebrated a massive 12 months since I had my proctolectomy with the creation of a permanent ileostomy.

Now I would be lying if I said the last 12 months has been easy (read about my 'stomaversary' here),
but over the last couple of months I have been noticing some 'weirdness' with my rectum (what is left) and
began seeing my GP and specialist.

My concerns and worries started when I was having pain and discomfort when walking, as sometimes it
felt as though there was something in there, and other times like I really needed to do a poo. 

But then I started noticing blood which was getting more and more frequent I realised I should see my doctor.

I admit, I should have seen them to begin with but I was so embarrased!

My GP thought it could have been a number of things including polyps, so I made an appointment to see my
 colorectal surgeon, who booked a scope for the following week. 

*Now you might be wondering or thinking I am lying or that it was pointless to have a scope when I have had a proctolectomy done, but not ALL of my rectum was removed and I still have half of it left. This was left, rather then being removed and stiched up was so that the surgeons had access to the area to biopsy the tissue and check that no polyps or cancer is growing. Just because I have FAP doesn't mean it is only affecting my bowel/colon (which was removed). I have polyps in my rectum, stomach, duodenum, pancreas, GI tract and possibly is the reason and extent of the severity of my endometriosis. Just wanted to clear that up before you judged*

In this appointment was the first time I had ever had a rectal exam, talk about bloody awkward!
He asked me to lay on my side and he was "going to have a look".... to my total surprise and shock it wasn't just a look!
To any men reading this after having had a prostate exam before, I do sympathise with you!

So over the week leading up to my scope I was told that it could be polyps bleeding, an infection or worst case an abcess.

Friday soon came around and I headed over to the hospital for my admission, and went and had the proceedure.

Was a really different experience to the 'normal' colonoscopy I had. 

I have had quite a few scopes before, and afterwards I had never had any pain. 
But I had quite a lot of pain immediately afterwards (and for almost the last week following).
I was finding I couldn't sit for too long as the pressure and pain would start,
but I keep getting this feeling like there is something in there like I just need to poo all the time!

It is rather frustrating needing to do a poo but physically not being able to.

I am thinking maybe the muscles and rectum is irritated and that could be causing the discomfort,
But waiting to see my GP to follow up.

Please note: That this was based on my own experience, and if you are needing to have a scope after your proctolectomy you may have an entirely different experience and may not experience any pain or discomfort. Please remember any views or experiences shared on my blog are based on my own.

Ostomistically Yours,
Talya xx

 
Posted by: talya AT 03:25 am   |  Permalink   |  Email
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
that it would take FOREVER to dry and no matter how much I patted towel dried, my bag just wouldn't dry!

I often would be sitting there for HOURS patting my bag dry and would become so frustrated and
would walk around with a small towel wrapped around my bag/stomach because I just gave up!

Now I know what you are thinking 'Why don't you just change your bag?'.

Well good question BUT if I changed my bag EVERYTIME I showered, I would soon quickly run out of supplies.

Well my conundrum and search for a solution happened recently when I started doing 'Met Aqua'
which is similar to water aerobics but much more fun!

So after my first class I found that although the rest of me was dry I had to drive home from the
class with all this towel padding so my clothes wouldn't get wet...

Well no matter what I tried I just couldn't find a fast drying solution...

That was until I came across an amazing, innovative and eco friendly product
that is designed right here in Australia!

Introducing the Wovii- The Super absorbent
and fast drying towel!

I took my wovii along to my swim class today and within seconds of drying my skin
was dry and I wrapped my hair (which is pretty thick) in the towel for a minute or so
which was also dry AND best thing of all...
THE TOWEL WAS STILL DRY!! 

Normally towels are so heavy when they are wet
but this towel is so absorbent and so light!

When I got home I got the wovii and wrapped it around my stoma bag for around 5 minutes
and it is completely dry! Even the adhesive banana wafers were dry too!

I am so happy to have found this amazing towel and it seriously will make my life
and living with an ileostomy so much better!

I purchased a Wovii taster bundle to get the different sizes.
The hand towel I used to dry my stoma bag
.

Their colours are so beautiful! I already have my next colour purchase in mind!

IF your order is over $50 your post is FREE (Australia Wide) otherwise it is a low price of $4.95!

Ostomistically Yours,
Talya xx

*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*

 

 

 

 
Posted by: Talya AT 11:41 pm   |  Permalink   |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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

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

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