No. 5: Things I wish I knew back then…

A TIc Tac Solution

That smell!

To be honest I am not sure if this even entered my mind pre-op but post-op after that first bag empty it sure did and I despondently concluded that I was going to smell like the Labyrinth’s bog of eternal stench for the rest of my life. This was not helped by the fact that my senses were on high alert and I had a flat stoma and skin issues that had resulted in a number of leaks. This combination had me convinced that every offending odour I smelt radiating from my ostomy bag, even though this is improbable if not impossible. In all seriousness though, what person with an ileostomy wouldn’t come to the same conclusion this after the myriad of smells that areis experienced while visiting the throne room. Some could no joke kill the best Strongman while others smell like they just came out of the oven or off the stove. However, my paranoia of the smell along with the itch of burning skin led me to develop an unnerving habit of continually checking and adjusting my ostomy appliances to see if they had sprung a leak. Sadly, what happens when you fidget with something you draw attention to it, which in turn triggered my anxiety and the cycle would start again.

When you’re not fidgeting you’re very beautiful. and very tall. Pretty Woman

This luckily didn’t last for ever, I found products that worked for me which in turn stopped the leaks and over time reduced the paranoia. Now to find out all things smell and the bigger question of solutions the best source of information I found was talking to other like-minded people that have been through it all before. So here is what I have compiled over my ostomy life. First off there are food products that are going to affect the output smell more than others, please note that this list is not exhaustive and every ostomate is different and therefore products will affect you differently so it’s a trial and error process. I kept a food diary for about 3-6 months after I first became an ostomate, to monitor the effects foods were having on my output.

Ostomy Glamour Shoot

If someone had told me when this journey began that I would be in a boudoir glamour shoot radiating confidence with an ostomy bag I would have laughed at them and then silently cried about it later. It was something I had on my dreams list but didn't dare to think about after getting an Ostomy. It would have just been another thing that would depress me on the list of things I thought never possible again. I hated getting naked and couldn't stand to look at myself in the mirror. I had gone from never being home to shying away from all social settings and avoiding photos where at all possible. Something I only recently began to regret. There are huge gaps in my memory that photos could have helped fill. I never realised how significant a part of my life it would be given all I wanted to do at the time was forget it was happening.

Ostomy Support

Bursting heart

Let me just say wow! Thank you social media. How times have changed, going back ten years when my journey began Facebook may have existed but not in its glorious form it does these days. The ability to reach out to others across barriers is astounding. I am so blown away by the magnitude of support groups, pages, blogs and websites that are out there. The time and effort that the ostomy community puts into supporting each other is astronomical. One of my main drivers for setting up the web page and blog was to ensure that other ostomates knew not only that there was support out there but where to find it.

Great Comebacks Award Entry

Great Comebacks Awards Night
My story

I was diagnosed with Ulcerative Colitis (UC) in 2006 after continuously being run down, losing weight, having poor appetite and mood. It was kept at bay with a myriad of tablets for about a year before I started getting severe abdomen pains and continued to lose weight. After three visits to the hospital, weeks of IV steroids, 13 days awake straight and 20 kilogrammes dropped in less than a month, late 2007 I ended up in emergency surgery and received a temporary ileostomy I called Squish. This was one of the most challenging times of my life. Before UC I considered myself to be an outgoing active person and used to pride myself on being the life of the party. Now I was severely depressed and couldn’t look at myself in the mirror without crying, let alone leave the house and be social. Luckily I had some amazing friends that stood by my side (sometimes literally holding me up) even when I was pushing them away.

Ten Years On, Why Start Now?

Erin Goodwin

It's ten years on now from when I first began this ordeal, why now have I started this you may ask as I'm not a writer. I was never any good at English in school and my spelling has always been appalling. I even had to change that word to something that spell check could recognise, as my original thought came up with "no replacements found”. My punctuation sucks, I'm not sure when I should use a comma or a full stop and don't even get me started on what a verb is versus a noun (much to my husband’s dismay, he has explained it many times but like times tables it never stuck). But despite all this, I still believe that by putting my story out there it may help others overcome any hurdles thrown in their way.