Friday 28 February 2014

Living with a Stoma THE CHANGE ITCH & THE OSTOMIST SIXTH SENSE

Hopefully if you've read my blog "what the hell is a stoma" you’ll have a very clinical idea of what they are. I have been thinking on how can I describe life with a stoma to someone that doesn’t have one. My life has been better since my ileo/stoma addition but that doesn’t mean it has been easy. It has changed many things in my life and to list them all would be immense (and probably a bit boring!) So I have chosen to share a couple of insights at a time.

Initially its probably a good idea to explain exactly what my stoma bag is. In it's basic form it is just that, a bag! I assure you though they have allot of tech in them. Carbon filters, skin care adhesive, plus even the bag itself has multiple layers to avoid leaks and tears. But ultimately it’s still a bag. Hard to describe so here is a pic.


Flesh coloured for added camoflague ;)

The stoma bags are very high tech appliances. However, they are not flawless. A very real concern is adhesive failure. This can be from faulty adhesive but more commonly from bad application. A small ripple or fold when applying the bag can allow output to slowly seep out. There are early warnings. It’s only over the last few years I heard a phrase that affectionately describes this.

1) THE CHANGE ITCH!!!
Fellow ostomists will hopefully understand ;)

Basically when a leak occurs they are often slow leaks (rather than a total bag failure or 'blowout'. Trust me these are a whole different level fo fun!) With my Ileostomy the output is very acidic and therefore as the leaky output comes into contact with the skin around the stoma site an itchy feeling occurs. Unfortunately this is actually the output burning my skin :( This is a trigger to change that bag!

I have left this in the past and the skin around the site become red, sore and inflamed. In extreme cases this has also created a knock on effect for a few days. As the skins repairs itself and the burns 'weep' the adhesive can fail, causing more leaks. I’ve learnt now do not ignore the change itch This use to happen allot, until I was recommended Stoma collars. These handy little additions have drastically reduced my 'change itches' I highly recommend them.


2) THE OSTOMISTS SIXTH SENSE
The other less obvious side effect I have found about having a stoma is a new found ‘sixth sense’ I am not saying that I see dead people or anything like that. I have developed a skill for finding the nearest toilet! As my bag has a finite capacity and I personally do not like to let it fully fill up I find myself emptying 7-8 times a day. You can get 3 sizes of bags mini, midi and maxi. Again I personally find the midi more comfortable and an acceptable trade-off for capacity. I can almost walk into any new building or restaurant my sixth sense triggers. It’s almost like I can’t settle until I know where they are. I have very little in the way of issues but it’s a habit I can’t avoid!

So there you go a small insight into life with a stoma actually. From a very practical and more personal perspective.

Wednesday 19 February 2014

Welcome to my world!

2014 is turning into quite a line up already. Parliamentary reception, articles and front cover of Beating Bowel Cancer patient magazine. A recent visit to Clinimed ( my stoma bag suppliers) blog post coming soon ; )

Everyone jokes but its almost like a full time job!! Stil very honoured that my ramblings and experiences can help or even inspire others. With all the excitement and potential I dont want to forget why and how I started all this. For me, the last 12 months have improved my health. Im training 5 days a week now and lifting over my own bodyweight in squats and deadlifts!!!!

But thats not it I can honestly say that may be how it started but now I love these races. Lactic almost 12 months ago was when it all started. This was that catalyst, for my current journey. Training is the prep so I can complete these events (safely)

My aim for 2014 is to help where I can and raise awareness for bowel cancer and ostomists. I find the 2 impossible to seperate. 2014 is the year I feel like I can give something back. I wish I had access to the support groups like ostomy athletes lifestyle on facebook 7 years ago! Its a diverse group. Yes many posts are about sport, running etc. But it develops into far more than that. I have made new friends. Friends who understand how and why some days things get tough. Why I can feel down although to the rest of the world I look strong. I cant wait to meet some of these people at Thunder run in July!! They have helped more than they will ever know.

Perhaps its because my first mud run anniversary is coming closer, but reflecting has reminded me, yes these races are tough, but GOD THEY ARE FUN!!!

Its always been hard to explain what they actually are, so my lovely wife purchased me a waterproof camera for my bday...so now you can see what I see ; )

Below is my first attempt at the recent Nuclear Trial.  Welcome to my world, hope you enjoy 
 : )








http://m.youtube.com/watch?v=DkMrI2xiZ6o