Just a very quick question about colostomy forums and websites

Adam26 · July 2015

Hi guys,

This is a complete long shot, but I am trying to find any programs out there which might be looking for "human guinea pigs" on which to use an artificial anal sphincter. I know they did some experiments a few years ago which were successful. My mum would be keen on this if such an idea existed.

Could anyone recommend a port of call I might try looking, a website, a community forum, a company or practice that deals with these clincal experiments?

Thanks all.

eihtak · July 2015

Adam26.....

Hi, here are a couple sites that are wonderful ostomy resources as well as the Phoenix magazine that is available on line or hard copy. I left a message on the C3Life site asking for recommendations on artificial anal sphincter help but have not heard back yet. I remember a couple years ago when my doctor and I had decided to leave my ostomy in place that he said a lot of work is still being done with artificial sphincters and that at that time the success rate was mediocre and still had some glitches to be worked out. I have not followed up on this as I am perfectly comfortable living with my colostomy. You asked in the other thread if I could leave the bag off during the day....on many days yes, but there is sometimes a very small amount of stool that drains out so I feel better safe than sorry.

With an ostomy, shortly after eating there is usually output (stool) within an hour or so. Without one, the sphincter is what keeps the stool from leaking out, so without that function in a stoma it runs out uncontrolled. I am able to control the output mostly by timing my eating, wait a little empty the bag, and good to go! As was mentioned some people irrigate the stoma (basically think enema but through this new opening)....this cleans the colon out enough so that even when eating, nothing drains for a couple days and is perfectly safe. Others simply eat foods they have found to cause a similar effect....for me dried apricots clean me out! Some drink milk of magnesia and once it has run its course are also able to go a couple days with no output. There is a small bag like patch called a stoma cap that is usually worn in between just to catch any mucus discharge or small amount of output.

As far as clothes go, I do not have to wear loose fitting, baggy, or frumpy looking things. Certain clothes are surely more comfortable than others though. I am 56, physically active and consider myself in good shape. I usually wear pants/slacks that are lower cut and leave the bag/stoma area above the waistline and then am able to wear shirts tucked either in or left out. Do not worry about such things just yet, as clothing depends on placement of the stoma and there are a variety of fashinable things that will work!

http://www.ostomy.org/Home.html#

http://www.phoenixuoaa.org/ (magazine with on-line version available)

http://www.inspire.com/groups/ostomy/

https://www.c3life.com/ostomy/

http://www.gallianosurgery.com/articles.shtml (article on ABS artificial bowel sphincter)

I will be in touch as I get more information.

katheryn

eihtak · July 2015

Adam26.....

Hi, I was sent a pm from someone on the C3Life site but it is not coming through....so still waiting????

In the meantime I found these on that forum as well. If you go to the sites home page and click "links to other resources" on the left it will take you to this and more.

· Bowel and Bladder Foundation (UK)

The UK's leading charity providing information and support for people with bladder and bowel control problems, their carers, families and healthcare professionals

http://www.bladderandbowelfoundation.org/

· Colostomy Association (UK)

A registered charity representing the interests of people with a colostomy

http://www.colostomyassociation.org.uk/

· Ostomy Lifestyle (UK)

Provides support, advice and information to anyone affected by stoma surgery on their bowel or bladder

http://www.ostomylifestyle.org/