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How long can one have an iliostomy?

musiclover's picture
Posts: 242
Joined: Oct 2005

Sorry to hog the board but I've got a lot on my mind and I think they are important questions.

Mark had a temporary iliostomy when he had rectal surgery in Feb.'06. At the time the goal was to reverse it but since he has developed mets in the liver and lungs (and he is inoperable), I don' t know if he'll ever be able to get a reversal.

Doesn't the iliostomy create dehydration from the extra fluid loss? What is the longest anyone out there has had one? Thanks!

goldfinch's picture
Posts: 737
Joined: Oct 2003

People can live with ileostomies for the rest of theirs lives. People with Crohn's or IBS get them in their 20's. Some may even get them before that. Check out www.ostomates.org.

Posts: 106
Joined: Nov 2004

You can have an illeostomy forever. People who have had ulcerative colitis and crohn's disease
have had in some cases their colon removed and live with an illeostomy. I have had my illesotomy for 3 years now. DX. with ca/colon aug.03, T4N2M0,
I still have part of the colon inside of me which was temporarily disconnected and possibly used for a later date to be reconnected. I was going to have a double reconnection but the DR. advised now that it is most wise to live with the illeostomy and remove the remining part of the colon and rectum. AS mine is now showing a disuse
colitis. Right now I am suffering with severe back pain. I have developed compression fractures
and now am in a brace. The colon surgery is now on hold. Yes you do lose alot of fluids with the illeostomy. But if you were connected and receving treatment you can still get diarhea which can also lead to dehydration. Hope that answers your question. Your friend Fran

musiclover's picture
Posts: 242
Joined: Oct 2005

Thank you goldfinch and Frantic. This helps so much. Mark is good at staying hydrated. So sorry to hear about your fractures Frantic. That must be so painful. Mark is having back issues right now as well. Don't know if it is cancer related since he's had a lifetime of back issuse. Perhaps his 120 frame cannot carry his weight as easily and walking or activity put strain on the back. I like to think it is that rather than cancer spreading.

Thanks again!

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