October 1st is World Ostomy Day, and also the UK Colostomy Association Colostomy Day with the strap line #fightthepootaboo – so today seems like a good day to talk about my ileostomy or Stoma.
So, science bit first. Ostomy and Stoma are often used interchangeably, although an Ostomy is the surgically created hole in the body for the discharge of waste, and the Stoma is the bit of bowel or untether poking out.
There are three main types – urostomy takes urine from the kidneys when the bladder is diseased or defective
Colostomy is when the large bowel or colon is brought to the surface of the skin to allow poo to leave the body
Ileostomy is when the small bowel or ileum is brought to the surface of the skin to allow poo to leave the body
There are lots of reasons for having them, including inflammatory bowel disease, cancer or trauma among others, and there are also various sub-categories which I won’t go into too much here.
I have a permanent end ileostomy because of ulcerative colitis – a form of inflammatory bowel disease. And this is my third Stoma.
Many Stomas are incontinent and require an appliance or bag to collect the waste from the body. These are often incorrectly referred to as colostomy bags, but could be urostomy or ileostomy.
Stoma 1 was also a permanent end ileoatomy – the bit of bowel sticking out was the end of the ileum. I had this formed in 2005 after my colon nearly ruptured because of a severe flare up of ulcerative colitis which put me into hospital. This Stoma saved my life – it was that serious. Had the procedure not been possible I would not be here. Because of that I was very positive about it and adjusted pretty well. I even went back to fencing, with the aid of a Stoma guard.
Stoma 2 was a temporary loop ileostomy – a loop of bowl that diverted poo away from my newly formed internal pouch – a surgical reversal to create a resovoir inside the body and no longer require a bag. This was formed in August 2006, and eventually closed in June 2007. It was a bit of a nightmare to manage as it was very flush to the skin and I need a hard convex bag to manage it.
Stoma 3 is my current Stoma, formed in January 2015 when my bowel was diverted away from my failed internal pouch. We have had a few issues, but are managing OK!
So what it like! Well, you sometimes worry about the bag being visible under clothing, or smelling – which usually is in your head rather than the reality. Since my first Stoma 11 years ago the bags and accessories have got much better – I remember not discovering adhesive remover spray until about a month before my Stoma was closed, and now I use it all the time!
Sometimes I get a leak, usually at night because I’ve left it too long to change it, or eaten or drunk something that causes lots of gas and the bag gets pulled away from the skin (alcohol and sweet mixers often to blame here).
And I do like to use the disabled toilet where I can – the extra space makes it much easier to check the bag is intact, and to do a change of required. I’ve been fortunate to never be challenged about that as I ‘don’t look disabled’ but I know many people have.
And it hasn’t stopped me doing stuff – that has always bee ongoing symptoms of my condition, not the Stoma itself.
So, I hope you have a good day, and spread the word, there are more Ostomates out there than you think!