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.
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)!!
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.
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. Read More »
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!!).
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!
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.
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!
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 »
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!
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 »
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. Read More »
World IBD Day is this Thursday 19th 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!). Read More »
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! Read More »
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.
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. Read More »
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 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).
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. Read More »
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. 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!
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!!
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? Read More »
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 »
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!
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 »
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 … Read More »
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)! Read More »
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.
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 30th 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. Read More »
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. 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 »
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. 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 »
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, 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? Read More »
Up until my Crohn’s diagnosis just after my 30th birthday I was a relatively confident, independent, worldly woman. I was respected at work and was always busy socially. Whilst I never enjoyed being the centre of attention, I could hold my own in a conversation, I was active and adventurous, had a decent career, and a small close knit circle of friends.
Having IBD impacted all of that. As my symptoms worsened, many of the things that had been a breeze for me before, became a struggle. Going to work, socialising, even doing the grocery shopping. With the increasing urgent and frequent need to go to the toilet (and often not making it), came increasing insecurities and uncertainties. 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!
You may have noticed I’ve been a bit quiet on the blogging front lately. This is partly because I’ve been pretty busy. Not with anything in particular – just life in general. When I have had a bit of spare time to spend on my Facebook page or blogging however, I have come to a realisation. I procrastinate, and I waste A LOT of time.
Once I get on a roll, things are great. It’s not that I have writer’s block. Far from it. I have so many ideas on different blog topics, sometimes it becomes overwhelming. I don’t know where to start. And so, I procrastinate. Most of us are guilty of procrastinating, or whatever you choose to call it: diddle dallying, stalling, or as Michael would call what I do “piss farting around”. Read More »
I’m back at hospital for the third time this week. Back in those familiar surroundings of a hospital with that calm, busy buzz of goings on around me. Only this time, for once, I’m NOT the patient. This time, I am the carer … I am here for support. Read More »
Yesterday I had one of those WOW, on top of the world, life is beautiful moments that I want to share with you all.
I am not sharing this to gloat or make anyone feel bad. I know everyone, especially anyone with a chronic illness, can have a lot of bad days. I have had a lot of bad days.
I am sharing this because of those bad days. I am sharing this with the desire that it gives hope to others. Whether you have a chronic illness or not… whether that chronic illness is active or not… we all have bad days … BUT we can also all have good days. (Side note: And even on a bad day, you can usually find something good to appreciate!) Read More »
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 »
Next week I am off for a follow up appointment with my gynaecologist. I have to admit; I am quite apprehensive (more on that later). However, I thought it was a good opportunity to write my first blog post about SEX!
Before Crohn’s disease, I would say that I had a pretty “normal” and “regular” sex life. Now everyone’s idea of normal is different. For Michael and I, having been together for around 12 years at the time I was diagnosed, let’s just say we weren’t exactly going at it like rabbits every 2 minutes like we were at the beginning of our relationship! Once or twice a week on average seemed to be relatively healthy, and was our “normal”.
Roll on IBD, and that idea of “normal” quickly changed. As anyone with IBD knows and understands, dating and sex can be difficult, on a number of levels, and for many reasons. A lot of the time you simply feel too unwell. The symptoms of IBD take over and limit your sex drive and desires. You have stomach and other aches and pains, diarrhoea, nausea, or are just plain too tired. 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 »
Everyone has their own way of dealing with things and different strategies for managing an uncomfortable situation. This applies to anyone, with or without a medical condition. Whether you have a phobia, get stage fright, or suffer debilitating symptoms from an illness, we all find ways to cope with stress and manage our conditions.
I’ve pooped my pants on more occasions that I would like to remember thanks to my Crohn’s. Of course, it’s horrible and embarrassing when it happens, but I know it wasn’t my fault. It was the disease.
Symptoms are uncontrollable, especially during a bad flare, however in certain situations my symptoms were worse, particularly if I was stressed or anxious. It’s like being the director of your own movie. Once you picture something in your head, it can be difficult to move on from that and remove that thought. The perfect example for me is sitting in a car stuck in a traffic jam with no toilets for miles. I have soiled my pants sitting in the car, even on a 5-minute drive to work. When we had friends to stay at our 1-bathroom apartment with no separate toilet, as soon as I heard them get up to have a shower, my gut would start working overtime. I once pooped into a bucket beside my bed when this happened.
During a flare, as soon as I knew there was no toilet accessible to me, I would start panicking. My heart would beat faster, I would get hot and sweaty, tense up and sometimes even had trouble swallowing and breathing. I believe this is known as the fight-or-flight response. Incredible what stress can do to our bodies and nervous system, and how it can make our symptoms (or our reaction to them) that much worse.
The number 1 way to manage this would be to avoid putting yourself in a situation you feel uncomfortable in. For some, this may be their only option. However, that may not always be possible. You need to get to work, do the shopping, or you might want to push yourself and venture out of your comfort zone just so you can live a normal life and go out and do the things you enjoy. For me, it was important that I do this whenever I felt well enough, and so I was constantly looking for ways to make my life easier and reduce my anxiety when I did decide to extend my boundaries.
There are many different coping mechanisms and distraction techniques, some specific to IBD, and others which may be useful for any stressful situation. Here are a few that I find helpful:
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 »
Today’s post is all about World IBD Day, which is today! Held annually on the 19th of May each year, World IBD day is led by organisations around the world, spanning 4 continents, in a unified effort to raise awareness and support for IBD.
Over 5 million people worldwide (including 75,000 Australians) live with Crohn’s disease and Ulcerative Colitis, known as inflammatory bowel diseases (IBD).
There are events happening across the globe, from community walks in Brazil or participating in the half marathon in Brussels, to information campaigns, lectures and presentations all over the world, selfies with toilet paper in Greece, and purple power in the UK, illuminating landmarks and encouraging everyone to wear the colour purple.
Everyone can get involved in the global video campaign encouraging anyone impacted by IBD (patients, carers, doctors, nurses, family and friends) to share their story via a 30 second video under the unifying theme “United we stand”.
I have joined in and here are my efforts!! I can’t wait to watch videos submitted from all over the world on the World IBD Day and Crohn’s and Colitis Australia websites and You Tube channels.
United we stand in our fight against IBD.
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 »
SYMPTOMS, DIAGNOSIS + LETTING GO OF DREAMS
I’m not usually one who particularly likes talking about myself or being the centre of attention, but I think it’s important to start this blog with my story. To start from the beginning. I was born in Melbourne in October 1979…… ok well not quite that far back! Fast forward around 30 years. Up until that point I’d had a pretty regular childhood and upbringing. I hadn’t even been in hospital before.
Then not long after my 30th birthday, the first symptoms appeared. I remember clearly the morning after a friend’s wedding in November of 2009, I went to the toilet and noticed blood in the toilet bowl. I didn’t think much of it at first, but it persisted for the next few days, so I thought I’d better go and see my GP. She didn’t seem overly concerned and told me to try taking some inner health plus for a few weeks to see if that helped. Several trips back to the GP and a few months later after a course of antibiotics and some stool samples, and she had referred me on to a specialist. Little did I know at that time what big a role this man would play in the next 4 years of my life!
I was diagnosed pretty quickly after that. After a colonoscopy and banding for suspected haemorrhoids, the symptoms still hadn’t abated, and within a few months I was told that I had Crohn’s disease. I had never heard of Crohn’s before and was really quite ignorant as to what it meant. I didn’t feel that bad, apart from the blood in my poo. Even the fact that it was chronic didn’t really register with me at first. Read More »