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.
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! 5 whole years with an ostomy! 😊👍🙌😎
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?
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! Read More »
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!!
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! Read More »
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.
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!!
Now I’m not complaining or anything, BUT ……….. thus far my experience of dealing with the NHS has been frustrating to say the least.
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.
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! Read More »
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!Read More »
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!!).
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 #takemebackRead More »
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 3rd Stomaversary.
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! Read More »
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!
Read More »
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!
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.
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.
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.
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.
This is Part 1 of Ostomy Orientation Week – all to do with surgery, hospitals, possible complications, the recovery period and more! Read More »
“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! Read More »
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! Read More »
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?
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.Read More »
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. Read More »
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!Read More »
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. Read More »
That is the question … I am pondering in this post!
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!
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.Read More »
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. Read More »
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 3rd 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. Read More »
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. Read More »
I was going through my journal the other day. I came across these scrambled thoughts scribbled down on the morning of 24th 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. Read More »
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. Read More »
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! Read More »
Whilst having a stoma might have its challenges and take a bit of getting used to, for me it truly is a blessing and has given me my life back. So here are my TOP 10 REASONS LIFE IS GREAT WITH A STOMA!
I’ve had a few people contacting me asking how my appointment with the gynaecologist went last week – thank you for your concern 🙂 There isn’t much to report on just yet, but I thought I would post a bit of an update. If anything, putting thoughts to paper might help with the whirlwind of information currently flying around in my head! There’s quite a lot to contemplate and consider.
It seems that I am rather unique! Surprise, surprise! My gyno has spoken to numerous colorectal and plastic surgeons about my case, but nobody has really come across anything quite like it (or at least not with the same symptoms as I am experiencing). Or if they have, it hasn’t been discussed. Read More »
Today’s post is a video blog. I decided it might be interesting to show you how I change my ostomy bag. What better way than through a video? Whilst I could explain the process in words, unless you actually see it, it is probably difficult to get your head around! Read More »
I have been working at my current job for a little over 4 months now. However, it was only a couple of months ago that I told my boss about my IBD and ostomy surgery, and only a few weeks ago that I “came out” to one of the girls in my team. Several of my co-workers still aren’t aware. Why, I hear some of you asking? To be honest, I am not really sure myself.
Both of my previous employers knew I had Crohn’s. The first one I told not long after being diagnosed. I was taking more and more time off for doctor’s appointments and sick days, and as my symptoms worsened, I felt it was important that someone in the office knew, so I told my boss. He was sympathetic and understanding. Read More »
Naming body parts – Do you name yours?
A stoma. Just another body part. Like a leg or an arm, your ears or your little finger, it has a purpose and does its job to keep our bodies working. It just looks and functions slightly different to the majority of other peoples. Yet somehow it’s far more than just another body part. For some of us it ended years of pain and anguish. For some it saved their lives. I’ve heard people say their stoma is “a miracle” and “I’m crazy about her”.
Others are still unsure and coming to terms with theirs. Of course you wouldn’t choose to have a stoma over normal functioning bowels, but for many of us, there was no other option, and it is here to stay. For me, it is now a part of me, and in many ways it is an incredibly fascinating and interesting part of me. Read More »
This post is all about toilets! On our travels, I quickly learnt that toilets and bathrooms around the world are almost as diverse as people and cultures. They come in all sorts of different shapes, sizes and styles. I do not discriminate against one style or another though ….. as long as they get the job done!
Here are a few of my more memorable travelling toilet moments 🙂 Read More »
Challenges and Benefits of travelling with an Ostomy
Easy is not the right word, however as I said in my last post, travelling with an ostomy turned out to be far less difficult than I had imagined. Read More »
The story continues …
And so, just 6 months after major surgery, Michael and I, and my new ileostomy were off for 10 months of adventure. There was a small part of me that held some trepidation about leaving Australia. I had relied so heavily on my family, close friends and doctors for support, guidance and strength for what seemed like such a long time. However with Michael by my side, and the knowledge of what we had been through and that we had come this far, I knew we would be okay. Much stronger than that slight apprehension was an overwhelming feeling of joy, exhilaration, incredulity and of course gratitude.
As we travelled around the world, I wrote down thoughts about Crohn’s and about what it is like travelling with an ostomy. I wanted to do this for others with a stoma, to help with hints and tips on what to do and what not to do, and hopefully prove it can be very doable! Read More »
On the 17th of September 2013, I made the decision. I’d had enough. I was sick of feeling sick all the time. I was sick of the pain, the anxiety, the daily struggle. I had grappled over this decision for months. Should I keep fighting? Should I persist? I know others who have put up with far more than me for far longer. Was I being weak? Was I being hasty? I had managed up until this point, but I was miserable. Was it really even a decision? To me, it felt like I had run out of options. Not for lack of trying. The last colonoscopy my gastroenterologist did he couldn’t even get a clear picture of my bowel. As soon as he wiped away the blood, within seconds more would appear. There might be new drugs down the track, but who knows when they might be available. It was now at the point, my gastro said, that there were other risks in continuing on as I was.
A week later, I was back in the familiar surroundings of St George Private Hospital ready to have it all removed! It was a huge decision. There was no turning back from this one – a pan proctocolectomy with end ileostomy. It was permanent. I already knew what living with a temporary ostomy was like, but this was something that I would have for the rest of my life, until I was hopefully old (and quite possibly senile!). After 5-6 hours on the operating table, I woke up heavily sedated with Ketamine and Morphine, minus a few pretty major body parts! Basically the whole shebang was taken, except for my small intestine, which is now redirected through a stomal opening on my abdomen where I poo into a nifty little bag, requiring regular emptying and changing. Read More »