Permanent ileostomy

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New Member

Date Joined May 2006
Total Posts : 10
   Posted 4/14/2009 9:07 AM (GMT -6)   
Hey there everyone,
I was just wondering when ppl say permanent ostomy if they mean they have had their large intestine removed completley.....I consider mine permanent, bc although I'm not disease free, my quaility of life is an improvment im not willing to give up:)....I can plan trips with my daughter, and go to a store that I know doesn't have a public washroom....ahhh the little things....i've been having pretty intense "phantom" pains as of late ( I've had my ostomy for 5 yrs now)...and with these intense pains ive been having discharge, I know that they said at the time of my surgery that the crohn's was still active in the lg intestine, but with reat should heal, so if the disease is back and they choose to remove it, although ill do anything before another surgery ive just been told it's a hard one to recover it any different then a bowel resection....or if anyone eles experienced this, this long after surgery....any advice will help.....I moved recently to have my daughter closer to Sick kids BC she was born with a cleft lip/pallete...and I'm having alot of trouble getting a Dr to even think about seeing me, Ive been sick on and off since Nov....each time seems to take about a week to get back on my feet....and I can't even get a referal to a specialist....errrr....anyways again thank you all for listening and really helps just to get it out there:)....M

Veteran Member

Date Joined Aug 2007
Total Posts : 1998
   Posted 4/14/2009 11:18 AM (GMT -6)   
I had several resections to remove CD prior to removal of my rectum and the rest of what was left of my colon in an attempt to NOT have a perm ileostomy. All of my resections failed. However, once the colon and rectum were removed, I have been disease free since surgery in 1984. Basically, I have no other option but the ileostomy. And it has treated me well. Being disease free is a gift.
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 4/14/2009 7:29 PM (GMT -6)   
I went 7 years with my 'temp ileo' and shouldn't have waited that post colon is SO MUCH better. I have a daughter who I felt I wasn't there for and was still having good/bad they are all GOOD!

I hope you can get a referral soon!
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