The 7-year itch

No I’m not talking about that itchy feeling you might get underneath your bag when you know you’re about to have a leak, or signalling it must be time for a bag change! I am talking about my 7-year stomaversary!

Guest post: Where in the World is Luciana’s stoma?!

Luciana came in second place in the “Where in the world is my stoma?” quiz earlier this year. Here is a guest post she wrote about some of her travel experiences, her love of travel, food and hiking, and how an ostomy has not held her back from doing things she loves.

Thanks Luciana and congrats again 🙂

Where in the World is my Stoma?! – Round 3 (INCLUDES ANSWERS)

“Where in the World is my Stoma?!” Quiz!

ROUND 3

Guess the country, city and tourist site in each photo! 

SCROLL TO THE BOTTOM FOR THE ANSWERS!!!

Where in the World is my Stoma?! – Round 2 (INCLUDES ANSWERS)

“Where in the World is my Stoma?!” Quiz!

ROUND 2 

Guess the country, city and tourist site in each photo! 

SCROLL TO THE BOTTOM FOR THE ANSWERS!!!

Where in the World is my Stoma?! – Round 1 (INCLUDES ANSWERS)

“Where in the World is my Stoma?!” Quiz!

ROUND 1 

Guess the country, city and tourist site in each photo! 

SCROLL TO THE BOTTOM FOR THE ANSWERS!!!

Where in the World is my Stoma?! – Round 3

It’s Quarantine Quiz time!!!

***FINAL ROUND***

Thanks to everyone who has taken part in the last two quiz rounds.

This is the FINAL week, and will be slightly harder than the previous weeks, but I’ve included a few hints and multiple choice options.

The official competition has now closed however
you can still have a go (for fun – no prizes!) HERE.

Where in the World is my Stoma?! – Round 2

It’s Quarantine Quiz time!!!

Thanks to everyone who took part in the quiz last week.

This week will be slightly harder than last time, but most places should be recognisable to everyone and I have included a few clues as well!

The official competition has now closed however
you can still have a go (for fun – no prizes!) HERE.

Where in the World is my Stoma?! – Round 1

It’s Quarantine Quiz time!!!

As we can’t travel at the moment due to Covid-19, I thought it might be fun to make a little game of “where in the world is my stoma?” to get you in the mood for when the world opens up and we can travel again 😊

 

The official competition has now closed however
you can still have a go (for fun – no prizes!) HERE.

Where in the World is my Stoma?! – THE PRIZES

Please note: THIS COMPETITION HAS NOW CLOSED

Now to the all important prizes!!

Whoever gets the highest number of points after all three rounds is in with a chance to win some of these great prizes!!!

Where in the World is my Stoma?! – Quarantine Quiz

The Where in the World is my Stoma?! – Quarantine Quiz

The Parallels of a Crohn’s and COVID 19 world – Part 2

In my last post I wrote about the parallels I have noticed between life with Crohn’s and life these last few months with the Coronavirus pandemic, the first one being isolation.

The more I think about the experiences and emotions I’ve felt due to my Crohn’s, the more similarities I find to the current Covid-19 world. Here are a few more:

The Parallels of a Crohn’s and Covid-19 world: Isolation

So here we are, five months into a new decade, and almost three months into our new (temporary) normal. Who would have thought when we saw in the New Year, watching the fireworks shoot up over the London Eye and hearing Big Ben chime midnight, that this is where we would be just a few months later? We all had plans for the year ahead. We took for granted being able to ride the tube, go to work, send our children to school, have a beer at the pub with our friends, hug our family.

Fast forward a few months and most of the world is in lockdown thanks to a pandemic called coronavirus or COVID 19. Our new normal is working from home (if we’re lucky enough to still have a job), only going out for essentials or daily exercise, being unable to travel to the next suburb let alone another country, socially distancing ourselves from friends, family, even strangers, and staying locked in our homes as much as possible.

Yet in some ways I feel like I have been through something similar before…

Over the last few months, I’ve contemplated how life with COVID 19 has many parallels to life with an inflammatory bowel disease like Crohn’s. Perhaps living with IBD (or another chronic illness) has even prepared me and made me better equipped to manage the current situation?

The diary of me and my little guy in lockdown – **travel withdrawals** ✈️✈️✈️

As most of you know, travelling is a huge part of my life. Yesterday I put together these hanging photo collages filled with so many wonderful travel memories, and it really gave me itchy feet! I don’t know about you guys, but I have already had two trips cancelled this year, and I am having major travel withdrawals!

The diary of me and my little guy in lockdown **Exercise**

Up until last Wednesday in the UK we could only go out for one hour of exercise each day. With restrictions slightly lifted over the last week, this has now been increased to unlimited exercise. I don’t go out every day, but if I can I try to take a nice long walk around the neighbourhood or one of the local parks at least 3-4 times per week. There are so many people out and about having their daily walk, run or cycle, so I try to time my walk to when it’s a bit quieter. It’s interesting seeing the etiquette of everyone making way for each other. I try to stick to the wider footpaths or side streets when I can. I usually head off with no specific route planned and plot it out as I go depending on which streets look busy and where the sunshine is! 🚶‍♀️🧘‍♀️🚶‍♀️🧘‍♀️🚶‍♀️🧘‍♀️

The diary of me and my little guy in lockdown – **working from home and furlough**

My husband and I have both been working from home since the middle of March. Given we live in a very small 1 bedroom flat, our set up on the dining room table is pretty cosy, but functional!! Until one of us needs to have a conference call (which Michael is on constantly)!! Our kitchen bench has doubled up as a desk on more than one occasion!

The diary of me and my little guy in lockdown **Sunshine and outdoor space**

We are super lucky to have a tiny little private courtyard attached to our 1 bedroom flat in East London. So many Londoners live in small apartments without any outside space at all. Luckily there are parks and green space all across the city. Our local Victoria Park was closed for several weeks early on because too many people were disobeying the rules. Thankfully it’s reopened, but we are still limited to how long we’re allowed out, and obviously no sunbathing or picnics or anything like that are permitted, so we are super grateful to have a little bit of our own space, no matter how small it is!

The diary of me and my little guy in lockdown **Health Concerns**

Like many of you, back towards the end of March I received THAT letter from the NHS identifying me as someone at risk of severe illness if I catch Coronavirus. This means shielding and NOT LEAVING THE HOUSE for 12 weeks. This was because I take azathioprine which is an immune suppressant. I have recently stopped taking this medication (purely coincidence not because of my risk to Coronavirus) but it does stay in your bloodstream for 3-6 months.

The diary of me and my little guy in lockdown

Hello Stoma-licious people! I hope everyone is doing well. I’ve finally decided to try and use this time to be a bit more dedicated than I have been of late on this page! I’m hoping to provide some interesting, insightful and fun content for you during the current lockdown!

Why I get my belly out!

Recently the lovely Christine Kim, creator and founder of the fabulous website Ostomy Connection, asked me to contribute to a post explaining my personal reasons for showing my ostomy bag on social media, and why I show it and don’t just talk about it. Here’s why!

Falling for Forty

This year celebrates two pretty important and awesome anniversaries. Crohn’s & Colitis UK (CCUK) turning 40, and yours truly turning 40 (eeeeeeek)!!!

So when I saw CCUK promoting a Falling for Forty tandem sky dive event taking place in October (the same month as my birthday), I thought what better way to celebrate these momentous occasions! It seemed the perfect opportunity to raise some money for a cause close to my heart plus do something really memorable for my big 40!!

My 30th!

Not all disabilities are visible – a close-to-home reminder!

Not all disabilities are visible. I know this! As the mother of a daughter with Crohn’s, I remember all too well the years of “Can’t Wait”, rushing to get to the nearest toilet, researching where the toilets were wherever we might be going, anxious train trips, anxious car trips, uncertainty about whether to push Laura to do things or encourage her to rest . . . yet her disability was largely invisible to the regular on looker – sure she was pale and thin, anxious and exhausted, but aside from that  . . .

Six years and highlights of Stomalicious life

For my six year stomaversary I am celebrating six of the many highlights I’ve been fortunate enough to experience since having my stoma. These are six things I worried I may not be able to do again due to my health when diagnosed with Crohn’s disease, and six things I wasn’t sure would be possible even after permanent ostomy surgery. This post is to show you that they are, and that anything is possible with a stoma!

I want to break free! 💨💨💨

Passing wind, breaking wind, fluffing, farting, tooting, letting one rip!! Ostomates or otherwise, we all do it!!

I was standing at a bus stop not long ago and a guy near me did a very loud one. He politely excused himself but everyone else around us pretended not to hear and looked away (embarrassed for him). I think the guy was a bit miffed by this as he made some comment about how it’s only natural (honestly you couldn’t not have heard it). I smiled and looked at him … “better out than in” I said!

Camping with an ostomy! ⛺.

Back in July I went on my first proper camping trip with my ostomy! When I say “proper”, we weren’t in the middle of the wilderness without any facilities (we stayed at a very respectable campground in Cornwall that had more than adequate bathroom facilities), however it also wasn’t quite as upmarket or comfortable as my several glamping experiences with an ostomy! Glamping … think proper flushing ensuite toilet attached to our nice A-frame hut where we could actually stand up straight!!

All aboard the Stoma bus!

Yesterday, Saturday 6th October was World Ostomy Day (WOD). I celebrated by getting on board the Stoma bus with Colostomy UK, the Ileostomy and Internal Pouch Association, the Urostomy Association, plus lots of awesome ostomates driving around London past all the iconic sights, getting lots of attention, helping raise awareness and breaking down stoma stigmas.

6 Things my ostomy didn’t (and did) change about me

To mark World Ostomy Day 2018, I’ve decided to write about things my ostomy didn’t change about me or my life. It would probably be easier to write about things my ostomy DID change about me. It would certainly be a shorter list! Why? Apart from a few obvious things, not much has changed. I’m still me! A slightly rejigged version of me where my body functions a tad differently to some, but otherwise, still me. I would even say a new and improved version of me!

5 years on – the ostomy advantage

5 years! 5 whole years with an ostomy! 😊👍🙌😎

Pints and the Pope in Dublin

One of the things I love about London is being able to zip over to another country for a weekend! I’d love to know how many countries (let alone cities) you can get to within 2 hours by plane, train or even car from London?! Suffice to say a lot more, a tad closer (and cheaper!) than Australia!

For the August bank holiday weekend, we did just that! Our first visit to the Emerald Isle with a long weekend in Dublin.

The Lofoten Life – turning 40, 68 degrees north

Have you heard of the Lofoten islands? Thanks to a friend at work, I found out about this incredible place in Norway, and it sounded like the perfect place to celebrate my husband Michael’s big ’40’ birthday! It’s as far north as we’ve ever been, at 68 degrees north of the Arctic circle. We were a little late for the midnight sun, and a little early for the northern lights, but it was still magnificent and some of the most beautiful natural scenery I’ve seen in my life!

Time flies when you’re having fun travelling with a stoma!

How did we get to be half way through 2018 already?! The year is flying by! So much has happened (apart from me actually writing many blog posts!) and my ostomy and I have continued our travel adventures around the world, even with some new friends in tow!

I could easily write an entire blog post for each trip, but it could be 2028 before I get around to that, so thought I’d write a little summary of each destination, the highlights, anything ostomy specific I can think of, and of course share a few photos getting my belly out in each place!

Start spreading the news!

New York, New York! What a city! To say I was just a wee bit excited to be headed to NYC was an understatement! I hadn’t been to the USA in over 10 years, and whilst I have been blessed to travel many places since my ostomy surgery, this was my first trip with a stoma to the USA! Would it be any different to travelling elsewhere with an ostomy?

Online ostomy travel resources

Here are a few of my favourite helpful online resources and links for travel with an ostomy!

Have bag will travel … even MORE in 2018!

It’s only fitting that my first blog post for 2018 (and in over 4 months!) is about travel!!! 

I had a super amazing (and busy – hence the lack of blogging) 2017 settling into life in London and making the most of being so close to the rest of Europe. In Australia, you can’t just nip away for a weekend to another country quite as easily as you can here!! 

Happy World Ostomy Day!!! #SuperStoma

Happy World Ostomy Day!!!

Having a bit of fun playing around with Phototastic turning my stoma into a #SuperStoma! But seriously, even without the cape and mask, my stoma truly is super!

It’s given me back my health, enabled me to travel the world, and live life to the full without constantly worrying about where the nearest toilet is. It doesn’t hold me back in the slightest. I wear what I like, eat what I like, and do what I like! I’ve met so many awesome people and am proud to be part of the ostomy community, helping raise awareness, break down taboos and navigate the journey together.

I could write pages and pages of why I think my stoma is super – but you can check out my top 10 Reasons Life is Great with a Stoma here!

I know it’s not the easiest of journeys for everyone, but I am so grateful for my stoma and all that it has done for me. To all you other ostomates out there, stand proud, rock those bags, and remember you are not alone in this. Acceptance can take time, and even if you don’t feel your stoma is super all of the time (mine has its moments!!), try to look for the good in every day and keep smiling 🙂

Laura x

20 Years!

When a member of your family has a chronic illness, be they in remission or otherwise, that fact tends to colour all other life events. So it is, with great joy and gratitude, I celebrate my daughter Laura (aka Stomalicious) and son-in-law Mikey’s, 20^th anniversary of being together as a couple.

Happy Anniversary Pooh Bear

Last week I celebrated my 4-year anniversary (or stomaversary) with “my little guy”! Today I’m celebrating another anniversary. An even more significant one in many ways than my stomaversay, because it’s my 20^th (yes, you read that right!) anniversary with my big guy – my husband, Mikey!

Take a minute to stop and smell the stomas …

Take a minute to stop and smell the stomas …

Not literally of course (because we all know how that could end up!!). I’m talking figuratively.

This post marks my 4-year stomaversary. 4 years with an ostomy. Where on earth did that time go?! I know exactly where it went! To getting back to living life! 

A new consultant and an MRI

After over 8 months living in London, I finally met my new Consultant Gastroenterologist for the first time just a few weeks ago. I saw an IBD nurse back in March (who was great) but this was the first time meeting the consultant.

Sicily with a stoma

Firstly, I must apologise for being MIA lately. I’ve been very quiet on the blogging front again but that’s because I’ve been out and about, doing what I love and what I do best … travelling and getting my belly and my bag out around the world!

Secondly, I should pre-warn you that this blog isn’t really going to be very ostomy focussed! I always try to keep my Stomalicious posts on point, but I’ve been travelling with my ostomy for 4 years now and to be honest I feel like a bit of an ostomy travel pro these days! My travel stories are more about the actual travels than my ostomy, which is how it should be!

Where would we be without stoma nurses?

This post was originally written for Eakin’s A Bigger Life

Seriously? I don’t think I would have gotten through my surgery without mine! Stomal therapy nurses play a pivotal role in our lives pre and post-surgery. Most of us lucky enough to have a stoma nurse (and it amazes me that anyone is allowed to go through ostomy surgery without one) know they are amazing human beings. Ostomates have a special kind of relationship with their stoma nurse, and I might be a bit biased, but of course I think my stoma nurse Kerrin is the best!!

Osto-what?! Learning ostomy lingo!

This post was originally written for Eakin’s A Bigger Life: http://abiggerlife.com/ostomy-terminology/

When you’re new to ostomies, getting to know all the new terms and meanings can be like learning a whole other language!!

Stoma blockages + Sausage & Egg McMuffin

This post was original written for Eakin’s A Bigger Life: http://abiggerlife.com/food-blockage/

I am very fortunate that in my almost 4 years of having my ostomy, I am yet to have a blockage. That said, I’ve diligently read up on signs to watch out for and what to do just in case I do ever get one!

NHSuccess

This post continues on from my last instalment and the frustrations I was having with the NHS and getting an appointment to see a gastroenterologist in London. Quick recap: 7 weeks + after seeing my GP, I still didn’t have an appointment to see a consultant. It wasn’t that I had an appointment and had to wait for 3 months for it. I didn’t even have an appointment at all. My referral kept getting rejected.

Roses are white, and I am a model!!

Anyone who knows me personally knows that I’m far from being a girly girl! My beauty routine is virtually non-existent and the extent of my makeup repertoire is a bit of mascara and some tinted moisturiser. Occasionally I might straighten my hair. In other words, I’m quite lazy and nonchalant when it comes to dressing and dolling myself up. I prefer the natural look! 

Apart from taking photos flashing my bag in public, I certainly don’t consider myself a poser or exhibitionist, and I don’t like being the centre of attention!! When I saw the post on Facebook looking for volunteers aged from 30-40 for an Ostomy underwear shoot, even I was surprised I put my hand up!!! I was new to London, keen on trying new things and making new friends, so I thought, why not!!

NHStress

Now I’m not complaining or anything, BUT ……….. thus far my experience of dealing with the NHS has been frustrating to say the least.

Living the London Life with an Ostomy!

3 months ago today we landed at Heathrow airport. Bright-eyed and bushy-tailed, we were incredibly excited and eager to start our new life in London (which very nearly didn’t happen!).

So much has happened in that time, but one thing that hasn’t is my blogging! I’ve only written 2 posts in the last 3 months (my aim is 1 a week), so I do apologise for slacking off. I have been a little preoccupied!

I have so many things to write about I don’t know where to start! So on advice from my mum, I am just going to WRITE (otherwise it will be 2018 before I post again)!!

Have you got your Purple Wings yet?

Last Saturday night I had the absolute pleasure and privilege of attending my very first Ostomy / IBD event since arriving in the UK! The Purple Wings Charity hosted a Christmas dinner in Bourton on the Water, a fairy-tale little town in the Cotswolds.

For those of you who don’t know about Purple Wings Charity , their vision is “helping sufferers of IBD with ostomies regain confidence and self-esteem”.

Awareness and Understanding this Crohn’s & Colitis Awareness Week

Crohn’s and Colitis awareness week 2016 is almost over, so it’s about time I wrote a blog post for it!! There are so many pertinent topics when it comes to inflammatory bowel disease (IBD) … what to write about?! I’ve decided to focus on awareness and understanding.

I often hear people say “we must do more than just raise awareness. There needs to be understanding too”. This got me thinking … Both are important! Awareness is one thing, and must come first. Understanding is taking that awareness to the next level.

Reading material: Crohn’s & Colitis Awareness week

Here are some of the articles I have shared or come across during Crohn’s and Colitis awareness week that are well worth a read, as well as some inspirational awareness raising personal stories and blogs from fellow IBDers and ostomates. Please check them out!

On the Road Again

Sorry I’ve been a bit MIA lately. Packing up to leave Sydney to relocate to the UK (indefinitely? forever?) took a bit of doing, including 2 weeks of farewells and soaking up as much of Sydney, our friends and family as we could, not to mention last minute visa dramas!

We’ve been on the road for 3 weeks already en route in Africa! I’ve been very slack on the blogging front (for good reason!) – we’ve been busy travelling and having fun!

Preparing for Surgery – PACKING & SHOPPING LISTS

This post was originally written for Eakin’s “A Bigger Life”: http://abiggerlife.com/preparing-for-surgery-packing-and-shopping-lists/

If your surgery is planned and you have time to pack your own hospital bag, there are a few things I would include in my must pack list, as well as a few must haves for when you get home following the early days out of hospital.

You will have a lot of time on your hands, and whilst you will probably be sleeping a fair bit, I made sure I had plenty of other things to keep me busy (there is only so much day time TV you can watch before going mad!!).

Have Bag Will Travel – Part 2

STOMALICIOUS HAS SOME EXCITING NEWS!!!

It’s no secret that I love to travel! You’re probably sick of seeing photos with my belly and bag out around the world by now! Well sorry folks, but you’re in for more!

Where in the World is my Stoma?

Travelling the world with an Ostomy! Where in the world is my stoma?

Take a guess✈📷👣🌄🙆

#ostomy #ostomate #ileostomy #ibd #inflammatoryboweldisease #crohns #stoma #travel #adventures #dreamsdocometrue #getyourbellyout #nocolonstillrollin #ostomytravel #travellingwithanostomy #ibdawareness #ostomyawareness #Stomalicious #havebagwilltravel #takemeback

Happy Stomaversary – And they lived happily ever after!

Stomaversary, Bagaversary, No Colonaversary, whatever you like to call it, today marks 3 years with my stoma!

Technically my first ostomy was formed 3 years AND 5 months ago. It started as a loop ileostomy, so I consider the first 5 months: “the dating phase”! The real deal happened on 24 September 2013. That’s when I got my new stoma (and got rid of some other bits!) and we became committed (for life). This got me to thinking about the parallels between our relationships with our stomas and human relationships. There are many similarities, but also some polar opposites.

Like all relationships, our relationships with our stomas are individual and each very different. Some will be better (or at least ‘different’) than others. This is my experience. This is about MY relationship with MY stoma and the path we have taken as I reflect on my 3^rd Stomaversary.

WEGO Health Activist Awards

I am excited to announce I have been nominated for the 2016 WEGO Health Activist Awards. I am SO honoured to be a “Rookie of the Year” nominee for the 5th Annual WEGO #HAAwards!

WEGO Health, a network of +100k patient influencers, has create the awards program to:

• Recognize patient influencers who have become leaders among leaders
• Connect patient leaders to each other, across conditions and platforms
• Give a big “Thank You” to all the leaders impacting their lives 

I am so excited and so grateful to be nominated. Thank you to all those who have nominated me – it means the world! I am amongst some amazing health activists and it’s awesome to see so many other IBD & Ostomy bloggers nominated across the 14 categories, including many that I follow and inspired me to start blogging myself! 

We have just entered the endorsement phase and I would love if you could endorse me. You can vote daily, so if I have ever supported you, made you laugh or inspired you to keep fighting – please vote for me!

If you know anyone within our community who should have been nominated, don’t worry there is still time. Make sure to nominate all health leaders today because they all deserve to be celebrated!

Once again, a big THANK YOU 🙂 I hope I inspire you guys as much as you all inspire me! I am honoured to be part of such a caring, open and supportive online community that spreads all around the world. I have met so many amazing people with IBD and ostomies since starting Stoma-licious 18 months ago. I am proud of the inroads we are making in spreading awareness and understanding of IBD, reducing stigmas and creating empowerment to live full and fabulous lives with our stomas!

Preparing for surgery: So Many Questions

This post was originally written for Eakin’s “A Bigger Life”: http://abiggerlife.com/preparing-surgery/

I remember seeing my surgeon and stoma nurse prior to surgery with a notebook full of questions I wanted answered! If you have any questions, concerns or worries – make sure you ASK! It’s one of the best ways to prepare yourself (especially mentally) for surgery. I had several pre-op visits with my surgeon and stoma nurse and I took the opportunity to ask about everything that was on my mind!

4MeUnderwear: REVIEW

I’m not sure what made me decide to venture into ostomy underwear land! I was happy in my regular Bonds boy leg undies, and I’ve never really been into sexy lingerie. My Bonds were getting a little worse for wear, so I figured why not branch out and try something new!?

I ordered a couple of pairs of 4me Underwear online, which was a super easy process via their website. The lovely Michelle (designer and brains behind 4me and an ostomate herself) threw in a few extra pairs for me to try on the house 🙂

I’ve been wearing 4MeUnderwear on a daily basis for several months now, and I honestly wouldn’t go back! I only wish I’d made the leap and tried them sooner! Here’s my review!

**Ostomy O-Week** Some final Philosophical Questions + Pondering

The final post for Ostomy Orientation Week (or month as it turned out!) goes a bit deeper and personal, pondering some of the more difficult questions and feelings around life with an ostomy. Telling people you have an ostomy, the best and hardest things about life with an ostomy, and the big one, do you have a better quality of life since having surgery?

Thank you for following along and joining in. I hope you’ve learnt as much and found these posts as valuable as I have!

**Ostomy O-Week** PART 4.5 – More on Stomas

There is just so much to talk about when it comes to stomas! This part of Ostomy O-Week talks about stomas – naming them, size, prolapses and if you can feel your stoma. Please shout out if you have any other questions.

**Ostomy O-Week** PART 4 – DAILY LIFE AS AN OSTOMATE

Part 4 of Ostomy Orientation Week is about Daily life with an Ostomy – Showering, sleeping, what to wear, exercise, smell and sex with a stoma.

**Ostomy O-Week** PART 3 – EATING & POOPING

This is Part 3 of Ostomy Orientation Week – What goes in must come out! It’s all about eating and pooping with an ostomy. Output consistency, foods to help thicken output, blockages, gas and staying hydrated.

**Ostomy O-Week** PART 2 – BAGS, BAGS, BAGS!

This is Part 2 of Ostomy Orientation Week – it’s all about BAGS! Changing and emptying your appliance: where and how often you change your bag,  what type of bag and other stoma supplies you use, peristomal skin, how frequently you empty your bag, your emptying technique and ostomy leaks.

**Ostomy O-Week** PART 1 – OSTOMY SURGERY

This is Part 1 of Ostomy Orientation Week – all to do with surgery, hospitals, possible complications, the recovery period and more!

OSTOMY O-WEEK!!!

 “An Orientation week for Ostomates”. What to Expect When You’re Expecting a stoma!

I recently held Ostomy O-Week on the Stoma-licious Facebook page and Instagram account.  What started as a week ended up being closer to a MONTH! There are just so many topics to discuss when it comes to OSTOMIES! I still haven’t covered anywhere near all of them! 

I’ve decided to publish a 4-part series of all the Ostomy O-Week posts here!

Keeping Hydrated – drinking with an Ostomy (including the hard stuff!)

One of the first things I was told as a new ostomate was the importance of staying hydrated. Hydration impacts so many aspects of our body and health including skin, mental state, digestion, even blood pressure, kidneys, muscles and joints.

Hydration is important for everyone, but even more so for ostomates. This is especially the case if you have an ileostomy, as a major function of the now removed or bypassed colon is to absorb fluids and electrolytes. Dehydration is one of the most common reasons for hospital readmissions for new ileostomy patients, and this is usually avoidable! 

Stomydo: Stoma Shower // REVIEW

Okay, so this device does look a bit strange! I’ve had comments of intrigue and confusion after posting photos trying it out. I’ve used it 5 or 6 times now, so it’s time I elaborated and put an end to the mystery of the Stomydo!

First of all, a bit of background…. Stomydo is a company based in the Netherlands, and the designers behind the Stomydo stomashower and wafer heater. They approached me after seeing a video I shared of changing my ileostomy bag asking if I’d be interested in trying it and sharing my experience. I had lots of questions at first too, unsure exactly what it was for and why I’d need such a thing! I was still undecided, but figured it was worth a try!

Babies, bags and biological clocks

I have never been an overly clucky person. I didn’t grow up dreaming of being a mum, but I never ruled it out of my life plan either. Now I am in my mid 30s … pushing 40. Is it too late? Now that I have Crohn’s disease and an ostomy, is it even an option?

Ostomy Fashionista

I am by no means a ‘fashionista’, and definitely not the first person I would turn to for style tips or clothing advice!! You wouldn’t see the outfits I wear on the runways in Milan, but I do have almost 3 years’ experience dressing with an ostomy, and over the years have picked up some practical tips and ideas on dressing with an ostomy.

“How do you view the loo?”

A toilet. Loo. Lavatory. Commode. W.C. John. Potty. Latrine. Rest room. Wash room. Dunny. Whatever you want to call it, we all use them! But have you ever really thought in detail about a toilet? How you see a toilet and what going to the toilet means to you?

For most of us a toilet is purely a means to an end. A device you sit on to expel your bodily waste. It’s something you use because you have to use it. It’s part of everyday life and I am sure most of you don’t even think twice about it. It’s something you take for granted, and when you sit on it once or twice a day, you do your business and you are done. That’s it!

For some of you, sitting on the loo might even be an enjoyable experience. Reading the paper, playing games on your phone, getting a bit of peace and quiet, some relax time!

I used to view the loo like this too. Until I got Crohn’s disease.

What does IBD mean to me?

World IBD Day is this Thursday 19^th May. Over 5 million people worldwide including 75,000 Australians (1 in 250) live with Crohn’s Disease and Ulcerative colitis, forms of inflammatory bowel disease (IBD). I am one of those people. You might be one of those people. You might care for one of those people. You may not know it, but you more than likely know one of those people. Or maybe like me before I was diagnosed, you know nothing about IBD at all.

Each of us has a different story. IBD is such an individual disease. It is different when it comes to symptoms, treatment, medication, diet, severity and location of inflammation, surgeries and how it affects us. What works for one person does not necessarily work for the next. There is no one answer; no one size fits all approach; certainly no miracle cure (yet!).

IBD means a lot of different things to different people.

For World IBD Day I’d like to shout loudly about what IBD means to me! In many ways IBD brings about painful emotions and negative connotations. How could it not? Equally important though is the significance it has had on my life, as well as the positive impact to my outlook and even life choices (yes, I did just use the word positive!).  

To My Mum

Yesterday was Mother’s Day in Australia. I am not a mother, but I am blessed to have lots of mothers in my life, including my beautiful, amazing mum Vivienne. I might be biased, but she is THE best mum in the whole entire world! I spent the day yesterday with my beautiful mum, and my equally beautiful sister Emma, and mother in law June. We all had a lovely day together doing mum’s day type stuff!!

The definition of “mother” is someone who creates, nurtures and protects. You don’t have to have given birth or be a biological mother to fit this definition. There are so many amazing women and mother figures out there including aunties, step-mums, godmothers, foster mums, mums of fur babies, teachers and friends. Happy mother’s day to all of you too!

I wanted to use this opportunity to finally write a blog post for my mum. I’ve been wanting to do this for a while, but to be honest was a bit overwhelmed as there are so many things I want to say about her and to her, and I want to make sure I do this justice!

So this one is for you mum!

A chronic Control freak with Crohn’s

I am a self-admitted control freak! I have been my whole life! Forever ticking off ‘to do’ lists, preparing for events way ahead of time, planning trips away, living by my diary, super organised with everything. Some would say anal (pun intended)!

How do you be a control freak with IBD?! Answer: You don’t. You can’t.

Slip, slop, slap + Immunosuppressant side effects

I take Imuran (Azathioprine) for maintenance of my Crohn’s disease, which amongst other things is known to increase the risk of developing skin cancer. I am always careful to slip, slop, slap when I am out in the sun, however I’ve been advised that whilst I take Imuran, I should have annual skin cancer checks. I went for my first one around 6 weeks ago.

Uncomfortably numb

Can we switch our emotions on and off? Can having a chronic illness lead you to turning off your emotions or at least dulling them down? Or you might experience the opposite and have your emotions run into overdrive? 

Being chronically ill can be like riding a roller coaster of emotions – pain, grief, guilt, hope, anger, loneliness, anxiety, frustration. Some liken it to the stages of grief cycle.  I am not sure it is necessarily a cycle or follows the same path, but I am sure most of us have been through some of these in relation to our illness.

A Year without Alcohol

My last blog post was all about my experience with IBD and blood clots … a pulmonary embolism that could have been fatal, and subsequently taking blood thinning medication for 12 months.

This post is about what that meant for me socially, in particular relating to alcohol.

Blood clots & IBD

A few weeks after my first stint in hospital for Crohn’s disease I passed out whilst taking the dog for a walk. Fortunately, I was with my family and could sense something wasn’t right as I puffed my way up a fairly steep hill. My poor little mum somehow managed to catch my fall as I toppled onto the front lawn of a neighbour’s house.

I was only out for about 20 seconds, and after getting home, getting some fluids into me and having a bit of a lie down, I felt okay. I didn’t really think much of it, but the next day decided it was best to see a doctor, just to be safe.

The GP did some blood tests and a few hours later I received an urgent message saying I had to get to the hospital, IMMEDIATELY!

It turned out I’d had a Pulmonary Embolism (PE).

Eating disorders + IBD – is there a link?

Body image is a controversial topic! For someone with Crohn’s disease (a form of IBD), an Ostomy, AND a history of an eating disorder, this is even more the case!

“An eating disorder?”, I hear some of you say. This is not something I have spoken about in public before, and very few of my close friends even know, but I used to be bulimic.

I have travelled a bumpy road when it comes to body image and food. Having IBD created even more bumps, and really made me reflect on my entire connection with and feelings around food.

Does everything happen for a reason?

There are many reasons living with a chronic illness like Crohn’s disease is difficult. One of many things I’ve struggled with is having no real explanation for what caused this. No reason why. Why and how did I get Crohn’s disease? When I was first diagnosed I was forever looking for meaning and answers.

The need to have someone or something to blame can be strong and overwhelming. Something has to be responsible, right? Someone has to be held accountable for this crap that I am going through. There must be a reason.

Yes, it might be genetics, environment, lifestyle, or a combination of these things along with something else. It is still unknown and much of the evidence remains anecdotal.

With a chronic illness with no definitive cause, there often are no answers. There are no reasons. Nothing and no one to point fingers at. It just is.

So I, for one, often blamed myself. And the blame spiralled.

What lies beneath … the bag?

I posted a photo of my naked stoma (sans bag) on Facebook the other day. Someone I know quite well asked me, pointing at the weird little pink think poking out of my belly, “what exactly is that?”.

That’s my stoma, I answered. My small intestine. That’s how I poop.

She apologised for being ignorant, but really it’s not ignorant at all. I wouldn’t have had any idea before Crohn’s disease and knowing that one day I might have to have one what it was either.

Tips on changing your bag, showering + hygiene

As Ostomates, we all have our own individual technique when it comes to emptying and changing our ostomy bags. We have our personal favourite brands and types of appliance, different showering methods, even preference for how often and when we change our bag.

Stomas come in all sorts of shapes and sizes (and also have minds of their own!). Some may need more attention than others or take a bit longer to work out and get used to, but they all need a bit of TLC!

We can be pretty particular and meticulous about how we change our appliance, and that’s a good thing! There is no one correct way – it’s not an exact science!

Here are a few of my tips and what works for me and my permanent ileostomy!

The day of my temporary loop ileostomy

I used to belong to a writer’s club.  One activity was to write about an experience or place you have been, focussing on the detail, especially the sensory detail, whilst trying to elicit a human response to your experience from your audience. I chose to write about the morning leading up to my temporary loop ileostomy surgery. I wrote this a couple of weeks after the surgery. Re-reading it now, I still clearly remember all the details and emotions I was feeling on that day.

To Bikini or Not to Bikini?

That is the question … I am pondering in this post!

My Gastroenterologist put a twinkle in my eye! #HOPE

I never thought I would ever walk out of an appointment with my gastroenterologist feeling as happy as I did last week! All went well and as anticipated, and all things going smoothly, I don’t need to go back for another 12 months.

I was actually on quite a high walking home after the appointment. It was like one of those WOW moments I’ve written about before. Was this really happening? It was like a dream. Like I was looking in from the outside. Was that really me he was talking to, telling everything was going well and that I was still in remission? Yes! Yes, it was!!

Medication – it’s far from black and white

I have my annual check-up with my gastroenterologist tomorrow. I’m kind of looking forward to seeing him!! This man who played such a big role in my life for so many years, who I was seeing on a monthly basis if not even more regularly at some points. Is it strange that I kind of miss him?

Places I’ve Pooped

Pooping has become a pretty normal topic of conversation in my household. Why shouldn’t it be? It’s something we all do. Pooping is something we often take for granted, and we shouldn’t. It’s completely natural and normal, yet people are still embarrassed to talk about it.

It’s part of our daily routine. People ask how was your day / dinner / workout / break / commute /etc? Nobody ever asks how was your poop? Would there be anything wrong in adding “did you have a good bowel movement?” to our daily niceties and vernacular? It doesn’t need to be awkward. These days I often ask Mikey when he gets back from his pretty regular morning or evening bathroom visit whether he had a good poop. These things are important!

Is there such a thing as TOO POSITIVE?

Sometimes I wish I’d started this blog 6 years ago when I was first diagnosed with Crohn’s. If I had, it would be a very different blog to the current Stoma-licious. I find it easier writing about the present than in retrospect. What I’m going through and how I’m feeling now. And right now, things are great!

When I was initially told I had Crohn’s disease, the years that followed were filled with a whirlwind of doctors, medications and emotions. I really wish I’d blogged, or at least written a journal on a more regular basis. At the time though, I wasn’t in the right headspace.

A Stoma-licious Year :)

I’m not normally one to get into the fuss of rehashing the past year or making resolutions for the new year, but when I was contemplating topics for my first blog post of 2016, it only made sense to jump on board and get into the new year spirit (sorry I am a little slow on the uptake)!

I also thought it would be fun to do a bit of a year in review, especially seeing as 2015 was a much healthier and happier year for me than many years past, and the year Stoma-licious was born 🙂 So here is a bit of a recap of some of the more noteworthy and defining moments from my 2015!

The 12 Days of Christmas with IBD

Having IBD at Christmas can be tough. Even tougher than regular times of year. Although there is way more to having IBD and the struggle is much more drawn out than a mere 12 days, in the spirit of Christmas, here is a little ditty about IBD tied in with the 12 Days of Christmas – trying to create a little hope and joy and link in with the Xmas spirit.

It’s Beginning to Feel a lot like Christmas

Christmas is well and truly in the air! Shop displays of tinsel and wrapping were out weeks ago, Christmas trees are up and decorated, supermarkets are playing carols and selling mince pies. Is it just me, or does it start earlier every year!?

This will be my 3^rd Christmas as an Ostomate. I was hoping to offer some helpful and mind-blowing tips on what it’s like having an ostomy during the festive season, and potential disruptions or things to look out for. Apart from the obvious, I’ve come up a bit blank! The most important thing is to ENJOY Christmas and the festive season whilst taking care of yourself and knowing your limits.

#7DaysofIBD

This week I supported Crohn’s & Colitis Awareness Week (Dec 1-7) by joining in the #7DaysofIBD campaign. I posted a photo a day on Facebook showing the daily realities of life with IBD & an Ostomy.

The campaign slogan “EVERY DAY IS DIFFERENT” could not be any more apt. Whether you’re newly diagnosed, in the middle of a flare, in remission, or post ostomy surgery, IBD is such an individual and unpredictable disease. It truly is different every day.

The morning of major, life changing surgery

I was going through my journal the other day. I came across these scrambled thoughts scribbled down on the morning of 24^th September 2013 – the day I was going in for my permanent ostomy surgery. This was where my head was at literally hours before leaving for the hospital that morning.

So in a few hours I’m heading back to the hospital. My home away from home. This time tomorrow, I’ll be large intestine, rectum, anus and inflammation free, and well on my way to being a much healthier and happier Laura again. So will begin a new chapter.

Bad habits

I have just spent the last half an hour on the phone arguing with someone at a big insurance company over our car registration and green slip renewal. Infuriated much?! I won’t bore you with details, suffice to say I was getting nowhere by arguing. I could slowly feel my frustration and stress levels rising to boiling point. My whole body was tense, ready to scream ARGHHHHHHHHHHHHHH down the phone. This kind of stress can’t be good for me, right?!

It made me think … how easily we fall back into bad habits. How quickly we forget.

Having a chronic illness has taught me many things. I have reassessed and taken a really good look at myself and the way I live my life. I’ve become very conscious of some of my often unhealthy ways and behaviours, and was adamant I would not let myself revert back to these patterns. Evidently, I have …

Love is in the Air

What a big weekend this has been! I had the pleasure and honour of watching one of my dearest friends get married to a wonderful guy, in a gorgeous ceremony, followed by a spectacularly fun wedding reception. It was made even more special for me being able to stand by as her bridesmaid 🙂 Despite the rain almost forcing Plan B into action, it was a perfect day and evening, and we even got driven to the ceremony in a firetruck!  

I am absolutely buggered now, yet can’t help but still be on a high with a heart filled with joy after such a special weekend. This post is likely to be a bit soppy (from me, a girl who most certainly never dreamt about my own wedding, nor actually thought I would ever even get married)!

On being the parent of a child with a chronic illness – Part 1

Another guest post from my incredible mum.

Any parent will tell you, it’s their worst nightmare: to have a child with a serious or chronic illness. So, it might surprise you to know that I have a child with a chronic illness and (now!) I hardly give it any thought at all! How can that be?

Laura’s Crohn’s disease was diagnosed about six years ago now and for four years or so after that, it was pretty much all I thought about and, like any other parent, I would have done anything to take the illness away.

It’s My Birthday and I’ll Reflect if I want to!

My 30th!

So tomorrow is my birthday. I’m turning 36. Eeeek! That means I am officially closer to 40 than 30. Now that’s a scary thought!

I remember being completely freaked out at the thought of turning 30! Contemplating what I had accomplished to that point. Was I where I should be in life? Where I wanted to be? I didn’t have traditional things like a house or children, but I was happy, and we had big plans!

It doesn’t feel that long ago, my fabulous 30^th birthday weekend celebrating with close friends with a winery tour and staying in a beautiful house in the Hunter Valley. Yet so much has happened since then.

So far my 30s have seen some of the best, but also worst, times in my life. 

Facing our fears

WARNING! This post will not place in the Top 5 most uplifting posts on Stomalicious. I am usually a pretty positive person, and prefer writing about happy and inspiring things. However, it’s important to be honest and talk about all aspects of IBD, particularly the roller coaster of emotions and different feelings we go through. That is why this post is about fear.

Thank Goodness I didn’t rush into Surgery

No, I’m not talking about my ostomy surgery. As I’ve discussed in previous posts, one of the biggest issues I’ve had post my ileostomy surgery are gynaecological problems which have impacted my periods and sex life.

A response to Invisible Illness week: Promoting “Awareness”

Here is the first GUEST POST contribution for Stoma-licious. A response written by my beautiful mum Vivienne to my recent post and those of others following invisible illness awareness week.

World Ostomy Day 2015 – Help me increase the volume

And by volume, I’m not talking about Ostomy output! I’m asking for your help to increase the volume and to make our Ostomy awareness raising voice as loud as we possibly can! Let’s turn those dials all the way up to max!! Crank it!

As World Ostomy Day (WOD) quickly draws to a close here in Australia, I thought it important to write a post in honour of this important day. I was quite surprised to learn that WOD only occurs once every 3 years. I am a little unsure as to why it’s not an annual event, but I like to think that every day is Ostomy Day for me!

Is my invisible illness really that invisible?

This week (Sept 28 – Oct 4, 2015) is Invisible Illness Awareness Week. There are so many conditions that are invisible. From lupus to back pain, depression to rheumatoid arthritis, cancer to migraines, diabetes to inflammatory bowel disease (IBD).

This got me to thinking about my illness, Crohn’s disease. Is my illness really that invisible?

Yes, my insides have been inflamed, enraged, bloody, full of a maddening, red, bludgeoning rage reaching boiling point. That is invisible.

Yes, many days, I made myself presentable and went to work like a normal person. People couldn’t see just how sick I really was or what was going on inside my bowels every time I ran to the toilet. Nobody could see inside my anxiety ridden head when I was suffering silently with a mind full of nerves, stressing over my symptoms. These things were mostly invisible. Or were they?