Falling for Forty

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

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

My 30th!

Six years and highlights of Stomalicious life

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

5 years on – the ostomy advantage

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

20 Years!

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

Happy Anniversary Pooh Bear

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

Babies, bags and biological clocks

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

To My Mum

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

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

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

So this one is for you mum!

A Year without Alcohol

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

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

Eating disorders + IBD – is there a link?

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

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

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

Does everything happen for a reason?

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

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

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

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

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

A Stoma-licious Year :)

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

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

Facing our fears

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

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.

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”.

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!)

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.

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!

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.