This is a question that I get a lot. And that’s fair enough – although now there is more and more awareness being shared, particularly on social media, it wasn’t something people really liked to talk about. It’s quite a ‘taboo’ subject for some people.
So let me be blunt about what it actually is. An ostomy (or a stoma) is a bit of your small or large intestine, stitched to the outside of your abdomen. It looks a bit like this:
There are three main types of ostomy:
- Ileostomy – where your small intestine is attached to your abdomen and soft/liquid stool passes through, bypassing the large intestine and rectum
- Colostomy – where your large intestine is attached to your abdomen and normal stool passes through, bypassing either just the rectum or the rectum and the end part of your large intestine
- Urostomy – where your small intestine is attached to your abdomen and two ureters will be plumbed into this stoma, allowing urine will continue to pass through, bypassing the bladder
To make this post more simple, I’m mainly going to focus on an ileostomy (as that is what I will be having) but there’s lots of information online about colostomies and urostomies if you wish to find out more.
There are two main types of ileostomy; an end ileostomy and a loop ileostomy.
An end ileostomy (which I will be getting) is when the end of the small intestine is cut and brought out of the abdomen through an incision, and stitched on to the skin to form a stoma. Over time, the stitches dissolve and the stoma heals on to the skin. After the operation, stool comes out of the opening in the abdomen into a bag that it stuck onto the skin surrounding it. Usually, this is permanent and involves removing the whole of the large intestine (and sometimes the rectum too) through an incision in your abdomen. (However, I will not have my large intestine removed as it is not diseased, it will be stitched up and stay inside my body.)
For a loop ileostomy, a loop of the small intestine is pulled out through an incision in your abdomen. This section of intestine is then opened up and stitched to the skin to form a stoma. The colon and rectum are not taken out and are left in place. Having an ileostomy like this means that the stoma will have two openings next to each other. One of the openings is connected to your small intestine and is where stool leaves your body after the operation. The other opening is connected to the large intestine and leads down to your rectum. This ileostomy is usually temporary and may be reversed during a second operation at a later date.
(All stomas do look different to each other so they may not look identical to the pictures above. Picture source: Salts Healthcare)
The most common reasons why people may have either an end or a loop ileostomy is due to Crohn’s Disease, Ulcerative Colitis or bowel cancer. Whilst I do know the basics of these conditions, as I know people with them, I don’t feel as though I know enough about them to explain correctly what these conditions consist of and I wouldn’t want to write something that could be completely false – so, again, feel free to look these up yourself! The reason that I am having an ileostomy is due to severe constipation, due to colonic inertia and several abnormalities of my rectum (see my introduction for more information) as a result of Ehlers-Danlos Syndrome.
So, if I’m not having my large intestine removed, why am I having an end ileostomy – rather than a loop ileostomy?
When I first saw my surgeon, I asked if I could have an end ileostomy as I had read that loop ileostomies can be more difficult to manage (not always though) and, also, if the surgery goes well and I can eat again, I am hoping to get my large intestine and rectum removed at some point – as they’re never going to work normally again (too many complications with them!).
So that’s the basics of ostomies/ileostomies and what they are! It’s now exactly a week before my surgery so I’m trying to get my head around it all and not panic too much about it. I’m mainly excited though – I think – and I’m really looking forward to the possibility of eating (finally!!).