Urostomy...The Forgotten Group Of The Stoma Family

by Rachel Jury

600600P15413 Ednmain Urostomy Awareness Campaign Final 1

Not all stomas are to do with poop 

When you hear the word ‘stoma’ or ‘ostomy’ most people instantly think of bowel difficulty, usually a colostomy or ileostomy. However, there is one branch of the stoma family that seems to get forgotten about - the humble urostomy (also known medically as an ileal conduit). 

A urostomy is where a small segment of small intestine, usually the ileum, is used as a conduit for the urine. The ureters are attached to it and the surgeon brings the segment to the surface of the abdomen to create a stoma where the output is collected by a pouch. There are different reasons for having a urostomy and not all are due to cancer. Some of these can be: birth defects, trauma, interstitial cystitis, fowlers syndrome, overactive bladder, neurological diseases, hospital malpractice and radiation damage. 

Often there is an assumption that a urostomy has been formed due to cancer or being over a certain age - this is not the case anymore. There are now more and more younger urostomates and I believe this is due to an increase of neurological diseases and bladder conditions. 

Differences in understanding and awareness 

Having a urostomy and an ileostomy, I can see a huge difference in the level of understanding and awareness regarding the two. In fact, one of the main reasons I started my blog was to try and bring urostomates into the forefront. I didn’t want us to be the ‘forgotten stoma’- not just in the media but also amongst the ostomy community itself. We are in the minority compared to those with a colostomy or ileostomy, but we are equally important. 

Over the last year there has been a big push for urostomy awareness and there has definitely been some change. Bloggers are including urostomies in their posts and companies are doing more research and trying to involve us more. This truly warms my heart and will help with us feeling part of the ostomy community and no longer isolated. To some level, though, urostomies are still like the middle child of the stoma family... quiet, lonely and forgotten, but now it is time for us to stamp our feet and be counted. 

Raising awareness for the urostomy minority 

About 5 months ago, I put together a poster, which has been backed by the Urostomy Association, where 24 amazing men and women of all ages sent me their pictures, ROCKING their urostomy bags! One of the aims of the poster was to highlight the fact that not all stomas are to do with bowel difficulties. In addition, the poster also shows that...

About the author

Hi I'm Rachel - I'm a 'double bagger' (I have a Urostomy and an Ileostomy) and I write a blog called Rocking2stomas!

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