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

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Posted 2/16/2011 3:52 AM (GMT 0)

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

Posted 2/16/2011 11:37 AM (GMT 0)
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.
Posted 2/16/2011 11:41 AM (GMT 0)
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.
Posted 2/16/2011 3:17 PM (GMT 0)
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.
Posted 2/17/2011 2:58 AM (GMT 0)

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

Posted 2/17/2011 10:52 AM (GMT 0)
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.
Posted 2/19/2011 2:39 AM (GMT 0)
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.
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