Those With Crohn's Colitis and Permanent Ileostomy...Were You Given an 80% Chance...

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CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 2/15/2011 9:52 PM (GMT -6)   
 
Those with Crohn's Colitis and permanent ileostomy or contemplating this surgery.  Were you told by your GI or Surgeon that there is an 80% chance that your Crohn's would NOT return after you had surgery to remove your colon?
 
I have read this statistic on other boards and one poster here had the same odds given to her.   My GI quietly confirmed it when I asked, but did not offer it up.   His previous response had always been, ''it can return''.  And, I am well aware of that.
 
I have searched high and low and googled it in every way I could think of and I cannot find anything about this 80% chance that it will NOT versus the 20% chance that it will.  
 
Thanks in advance,
 
CronieCJ

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 2/16/2011 5:37 AM (GMT -6)   
Yes, I have Crohn's colitis and my gi doctor gave me the 80% figure. He said that the 20% that have recurrences tend to be localized near the stoma and fairly easy to treat. However, I've also been having a rare skin complication (cutaneous Crohn's -- boils all over my butt and in a few other places) and they really don't know whether the surgery is going to help that or not.

The nurse practitioner said that there was a "slim to none" chance that I'd have small intestine involvement, given that I've never had it before.

My surgery is next week.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/16/2011 5:41 AM (GMT -6)   
Yeah, I didn't get the 80% figure, but they basically said it's unlikely. There's a really small chance. I think 80% sounds right.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Brannah
Regular Member


Date Joined Oct 2006
Total Posts : 109
   Posted 2/16/2011 9:17 AM (GMT -6)   
My surgeon never gave me that info, all he said is that it could come back. I've never heard that until blueglass mentioned it in a different post. I'm glad to know that.

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 2/16/2011 8:58 PM (GMT -6)   
 
Thanks, guys :)
 
I feel like those are really good odds, but it is a life altering decision and I want to consider EVERYTHING and had hoped to find more about those statistics online, to absolutely no avail.
 
Still waiting on my GI to get back with me with answers to some key questions I had before telling him my final decision.
 
CrohnieCJ

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 2/17/2011 4:52 AM (GMT -6)   
It is a huge decision, and it's yours alone.... definitely good to ask all your questions and gather all the info you can. Good luck.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 2/18/2011 8:39 PM (GMT -6)   
I was never given any figures of CD flaring back up before I had my surgery. My surgeon and GI said that as mine seemed to be a very aggressive form of CD it could come back but they would hope to keeop it in remission. Also by then my colon was so badly damaged no amount of medication was going to work.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.
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