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.

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.

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!

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)!

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!

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.

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 🙂

#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.