Friday, 5 August 2011

Where are my running shoes???

I know, I know.. two blogs in one day is a bit self indulgent, but this one is very different to the other one and slightly more educational.

Firstly I wanted to show you a photo of my 'kit'.  The bag in the centre of the photograph is what I have to wear attached to my stomach, 24 hours a day, 7 days a week. The whole in the centre is cut a little larger to fit over my stoma, then the whole thing sticks like glue to my belly (aside from when it leaks). The output from my stoma drains into the bag and I empty it 8-10 times per day from the little flap at the bottom.

The other things around it are the powders, adhesive removers, wipes, scissors etc that I have to use every time I change it. It's important to use the right products to avoid skin irritation or break down which would then mean huge problems. 

I have to carry all this stuff around with me all the time just in case of a leak. No more small and pretty handbags for me. It reminds me of when the boys were babies and we went everywhere with a giant nappy bag!  I have my very own nappy bag now.. not sure how I'd carry it in an Ironman? anyway..

There are also challenges with clothing to hide it but also be comfortable - mostly I'm at the 'leggings and smock stage' and testing out all sorts of combinations of underwear and swimwear -  but all in all it's pretty discreet and most people would never even notice it. In fact I bet you know someone with a bag, you just don't know it.  

I read somewhere that there are around 100,000 people in the UK with an ileostomy. That means around 1 in every 600 people.  People have them for all sorts of reasons, mainly crohns disease, ulcerative colitis, diverticulitis, colonic inertia and cancer.. all diseases affecting the colon and all very debilitating. The main UK charity is called The Ileostomy Association and they provide not only fantastic advice online, forums and even funding to the disadvantaged, but when I was considering this surgery had a lovely phonecall with a lady called Anne who had time to listen and provide support. Charities like this are some of the smallest in the UK and need all the support they can get. It's probably something I'd like to try and get involved in the future and do some fundraising for them too.

I've also come across a couple of other women in the US who I can really relate to.. one called Heidi who blogs about her outdoor adventures and Run4Pancakes who is a runner.  They are the same age as me but much further down the line in terms of their recovery.. they provide fantastic inspiration and are proof that having an ileostomy doesn't have to stop you living your life.

Talking of inspiration.. here is the amazing story of Rob Hill who has an permanent ileostomy and actually conquered Everest.  

Right.. where are my running shoes????




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