Anyone had Crohn's return after an ostomy?

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Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 8/1/2007 6:22 AM (GMT -6)   
I have an ileostomy and was told by my doctor that Crohn's can return in my small intestine, even after having my large one removed.

Has this ever happened to anyone here?

I also read that this doesn't happen with Ulcerative Colitis. Once it's gone, it's gone.

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 8/1/2007 7:14 AM (GMT -6)   
so far as i know crohns can effect anything from your mouth to your butt. with UC the ileostomy is a cure supposedly. my doc said that having a proctolectomy "should" give me 10-20yrs without any problems, and even then there's less then a 5% chance of a return...supposedly. maybe he was just trying to be encouraging, who knows...i'm good for now!

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 8/1/2007 8:44 AM (GMT -6)   
If your crohns has been confine to your large intestine (aka crohns colitis) then there's a very good chance it won't return (which is why some docs will actually do j pouches for those who's crohns has been confined in this way for 5 years or longer). If it does manifest itself along other areas of your digestive tract, there's really no guarantees as to how long before it returns unfortunately :(

And you're right, since UC only actively attacks the large intestines, once they're gone, the UC has no place to attack (altho we can still get the other stuff, ie arthritis, joint pains, etc)
I have had an ileostomy for 31 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 8/1/2007 1:02 PM (GMT -6)   
Thank you so much for your replies. They were very helpful.

For 7 years, the disease was always in my rectum and 6" up the descending colon, which they removed last fall. I have always had a healthy small intestine, so I'm hopeful that it will stay that way. :)

Thanks again!
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

Regular Member

Date Joined Mar 2007
Total Posts : 53
   Posted 8/5/2007 11:35 PM (GMT -6)   
Hi flchurchlady, Iv'e had my ileo since 1987 Dec 9th after 5 years of surgeries to get everything to heal I enjoyed a long remission until year 2000 when I came out of remission. A tumor in my stomach was removed due to the crohn's returning.I have since be battling severe crohns again since 2002 .So to answer your question YES crohn's can return.Sorry for the bad news.

vette guy
Veteran Member

Date Joined Nov 2006
Total Posts : 650
   Posted 8/7/2007 12:23 AM (GMT -6)   
They couldn't remove my rectum due to excess bleeding, which is ravaged with Crohn's. So even though I no longer get cramping from Crohn's, I do get joint pain from time to time. That's why I take Remecade regularly. Crohn's is one of God's dirty little tricks!!!
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