colitis how did it affect you

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Regular Member

Date Joined May 2009
Total Posts : 29
   Posted 8/22/2010 7:55 PM (GMT -6)   
hi havent posted in a while but always keep up to date with what is happening on the forums
had my ileostomy for two years now and things have been fantastic except for a severe episode of colitis at xmas .
surgeon wants me to have a colectomy as having some problems with bloating swelling nausea and lots of mucous also have another rectal prolapse sad
has any one had colitis with episodes of hot sweating followed by cold shivers nausea but not to the point of actually vomiting , i also have mucous constantly leaking out nearly every day and because my anal sphincter is useless cant control it !
the surgeon doesnt want to take my rectum and i dont get that as what i have been reading on the forums lately doesnt sound like a good thing to be left with .
thank you jacarat

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 8/22/2010 8:44 PM (GMT -6)   
Why did you get a temp ostomy?

Yes, your UC symptoms are normal. The leaking mucus is normal too and it doesn't mean you have a faulty sphincter.

It is not advisable to have surgery for UC and leave the rectum. If you doctor is advising this I would seek a 2nd opinion from a highly recommended colo-rectal surgeon.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 8/22/2010 10:49 PM (GMT -6)   
if you have an ostomy for UC you need to have it all out, because any thing left, even the tiniest bit can get UC, and then the surgery is basically for nothing.
I'm with suebear, you need another opinion.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Regular Member

Date Joined May 2009
Total Posts : 29
   Posted 8/23/2010 2:17 AM (GMT -6)   
thank you , i have a autoimmune disease and it caused colonic inertia thats why i ended up with a loop ileo i dont have ulcerative colitis i cant begin to imagine what you guys have been through .
the surgeon was going to take my bowel and rectum but then on my next visit he decided he wouldnt do it at all (i smoke ) and then he had another change of heart at my last visit and said he would remove my colon but leave about six inches of rectum , dont make sense to me when i have trouble with my anal sphincter as i already had a rectal prolapse repair 4yrs ago
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