Happy Stomaversary to my little guy!!

Today, I am posting a special blog to acknowledge the 2-year anniversary of my ileostomy surgery. Some might find it an odd thing to do, observing the “birthday” of a stoma. Amongst ostomates, a stomaversary is actually quite common practice!

How to go about this? I want to honour and pay homage to my stoma (aka “my little guy”) with the respect it deserves. It’s not about mourning the death of, but rather celebrating the legacy of my colon (and what’s left of it)! Celebrating and rejoicing the creation day of something rather amazing!

So, I asked some of my nearest and dearest to send my stoma an anniversary card message on this, its special day.

To follow are messages from family, friends and others who have been in the life of my little guy, including a message from me of course!

IBD & Self-esteem

Up until my Crohn’s diagnosis just after my 30^th 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.

10 Reasons Life is Great with a Stoma

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!

To blog or not to blog

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”.

Role reversal: In the other shoes – the carer’s perspective

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.

My WOW moment

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!)

The saga of the retroverted uterus continues

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.

A VLOG: CHANGING MY ILEOSTOMY BAG

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!

Let’s talk about SEX!

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.

Coming Out: IBD and ostomies in the work place

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.

Did you cluck like a chicken? Symptoms + stress: Coping mechanisms and distraction techniques.

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:

Introducing “my little guy”

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.

Global toilet trotting!

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 🙂

ON THE ROAD: The specifics and practicalities of travelling with an Ostomy

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.

HAVE BAG, WILL TRAVEL

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.

17 incredible countries!

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!

#UnitedWeStand2015 #WorldIBDday

Today’s post is all about World IBD Day, which is today! Held annually on the 19^th 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.

Decision made!

On the 17^th 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.

Home away from home

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.

Let’s start from the beginning . . .

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 30^th 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!

On the loo … again!

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.