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HAs crohn's appeared post perm ileostomy for anyone... And how long after?

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Posted 8/5/2012 1:37 AM (GMT 0)
I am going to have a total proctocolecomy with perm ileo. I have crohn's colitis, in my colon and rectum. I met with my first surgeon for a consult a few days ago and I was surprised to hear the stats on crohn's reappearing somewhere else post surgery. He said the reoccurrence rate is at least 50% with crohn's. For those who have crohn's and a perm ileo, how many of you had a reoccurance somewhere else in your gastro track? Thank, I didn't think the rate was so high.
Posted 8/5/2012 2:02 AM (GMT 0)
I had Crohn's in the large intestine and rectum and have been completely disease-free since having them removed 6 years ago. My gastroenterologist told me that the chance of the disease reoccurring is higher for people who had it in the small intestine, but chances are very low for those of us who never had it there in the first place. I hope that helps ease your mind.
Posted 8/5/2012 3:23 AM (GMT 0)
Thanks flchurchlately. I am having a test shortly to see if I have any small intestine involvement, but the doctors have always told me I didn't so hopefully that is the case.
Posted 8/5/2012 4:24 AM (GMT 0)

I have Crohn's Colitis and read a couple places on the internet that IF it was confined to the colon only [mine was colon & rectum], there was an 80% chance that it would NOT return.   A few folks here confirmed similar odds by what they were told by their GI's.  flchurchlady's prognosis from her GI is very encouraging.  These favorable reports helped me make my decision.

After choosing to have my proctocolectomy and permanent ileostomy surgery in July 2011, I met post-surgically with my new GI and point-blank posed that 80% scenario to her.  She said that her opinion was that 80% for non-reccurence is pretty accurate when there has never been small intestine involvement.  My old GI did not offer it up, but quietly confirmed it, but was quick to add "it can return."   He was very pro Remicade, but I refused the biological drugs.

I have read the 50% thing, but thought it pertained to Crohn's where there was small intestine involvement.

If I recall correctly from my researching, only 20% of Crohn's patients have Crohn's Colitis.  The other four Crohn's types comprise the majority.   I never knew there were 5 types of Crohn's until I began researching for my surgery.

Posted 8/5/2012 4:55 PM (GMT 0)
I was told by my gi that there was an 85% chance that a proctocolectomy and permanent ileo was a cure, as all my intestinal issues had been confined to the colon and rectum.

I did have extraintestinal issues with my eyes and skin, and he wasn't sure whether surgery would fix those or if my immune system was just out of control.

However, knock on wood, I've had no Crohn's related issues since my surgery. It is still possible, however, that I have UC, as my case was not easy to diagnose, but probably I have Crohn's.

There was someone on this board for a long time, stripey, who has Crohn's in her small intestine, short bowel syndrome etc..... but she always says that she still is much, much better since having her colectomy/ileostomy.

No guarantees..... but the surgery can help a lot.
Posted 8/5/2012 5:50 PM (GMT 0)
I had a total proctocolectomy done in June of 2010. They took some biopsies of my small intestine and told me that I had no evidence of crohns. Well about a year later I started having pain behind my stoma. At first I thought it was just food coming out. I had a test done and it showed inflamation in I believe my ileum. So now I am back on remicade and imuran.
Posted 8/5/2012 10:22 PM (GMT 0)
Ugh brian84, that stinks. Thats what I'm worried of. You didn't have any crohn's in your small intestine or ileum before the surgery?

I worry a lot about this because I have tried literally everything and nothing worked...most I was highly allergic to. So, what then? Total proctocolectomy and can't take any meds to feel better? How does one function?
Posted 8/6/2012 4:54 PM (GMT 0)
I have had IBD for over 30 years. Finally, on 1-14-11 I gave in and had the total surgery.

Nothing since. Should have done it 10 years ago.

Dave D

Posted 8/6/2012 9:17 PM (GMT 0)
I am one that did have sb involvement when diagnosed. My main issues before surgery were all colon/rectum related.

I am on year 12 without sb issues (knock on wood). I know I could have issues but my docs have both indicated that with each year that goes by without sb involvement the percentage gets lower that it will happen. I cannot remember the actual percent per year but it was pretty good odds so I had my proctocolectomy!
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