I'll be honest. I'd never heard of an ileostomy before I had one - and I consider myself to be pretty knowledgeable about medical stuff. I'd heard of people having a 'bag' but hadn't really stopped to think how it worked or what it was. I also didn't know anyone who had one.
Now of course I know lots of people - both locally and virtually - and it's quite interesting how common it actually is. I even have a running friend who has an 11 year old daughter with one. I read a stat somewhere that around 150,000 people in the UK have either an ileostomy or a colostomy. Despite that however, it's not the normal topic of conversation at your average dinner party and still something people feel uncomfortable talking about. Mention the word bowels or poo and people start to squirm.
I was asked by a lovely well meaning friend the other day how I was getting on with my 'fake stomach'.. so on that basis, I thought I'd make this blog post a little more educational.
I have something called an ileostomy. It was required to 'bypass' my colon (large bowel) which had decided to stop working properly. Some people have an ileostomy when they have crohns, colitis or cancer. Mine was due to diverticulitis which I didn't know I had.
My small bowel (at the ileum - hence the name ileostomy) has been brought out through a hole in my stomach wall. The surgeon stitched the bowel to my skin to create an opening called a stoma. This photo shows what it looks like (this isn't MY actual stomach but a fairly nice looking stoma). By the way NEVER google 'Ileostomy images'... especially if you're about to have surgery for one!
All the waste from my digestive system comes out of my body through this little stoma (basically I don't poo normally). It outputs waste all the time and I suppose a bit like having diahorrea 24/7. I have to wear a bag over the stoma to contain the 'output' and then empty the bag a number of times a day. Apologies if that's a little too much information... but hey! we all eat and poo. Just now I do it slightly differently.
A colostomy (sometimes used as an overall term) is slightly different and is where the large bowel is used to create the stoma. It's usually on the left side of the body and lower down. A urostomy is where a stoma is made to empty the bladder to a bag on the outside. Basically someone who has one of these procedures is known as 'ostomist'.. although we prefer 'optimist'.. which is sort of the same thing :-)
Anyway.. that's about it really. Kind of amazing when you think about it. For the most part it works pretty well.. other times, it makes very inappropriate noises! occasionally the bag peels off and leaks and that's not much fun AT ALL (especially when you're out on a bike!). Other times I get very high output and feel a bit ill due to lack of electrolytes and sometimes the skin around the stoma can get sore which itches like crazy. But generally it does what it's meant to and I hardly notice it's there. Which suits me just fine :-) It's one of those things that sounds and looks pretty grim, but the reality is that it's nowhere near as bad as you think it's going to be.
My friend Helen at the Ostomy Lifestyle Charity has created this great little video to explain exactly how our digestive system works and what's involved in creating a stoma.