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What You Got You're Stuck With, But At Least It Won't Spread

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Crohn's Disease
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Posted 11/16/2009 1:39 AM (GMT 0)
I went to a gastro conference the other week and the panel of doctors said that with IBD it almost always stays where it first occurs and doesn't spread. I guess that's good news.
Posted 11/16/2009 1:49 AM (GMT 0)
Hmm, that's interesting, because I thought i read that somewhere, but then I read later that since Crohn's can affect any part of your GI tract that it wasn't true. I'd rather not have it spread either, but I'm curious if other people have experienced that. Right now mine is in my colon. Hopefully it spares my small intestine and the rest of my GI tract.
Posted 11/16/2009 3:14 PM (GMT 0)
good to know I am abnormal...LOL just kidding
Posted 11/16/2009 3:35 PM (GMT 0)
Me too. Mine has gone from the ileum to the sigmoid...
Posted 11/16/2009 3:47 PM (GMT 0)
Mine is spread all over the place. 

Posted 11/16/2009 4:02 PM (GMT 0)
Mine spread like wild fire ... from the terminal ileum to the jejunum. Interestingly my terminal ileum is now clean with no signs of disease.
Posted 11/16/2009 4:55 PM (GMT 0)
That's odd...every GI doc I have ever spoken to has said the opposite.  I had 18" TI removed, now I have rectal issues that I never had before.  I think that qualifies me as abnormal per your conference too...I think mine has spread, but fortunately, not a long distance.

Unless, they would say I had these issues all along they just never showed on previous tests...

CD....always leaves you with more questions than answers!

Posted 11/16/2009 6:03 PM (GMT 0)
When I was first dx.. I had it at the beginning of the colon and the ilium.  Now, it doesn't show in the ilium but it is all over my colon from beginning to end.  Whoever says it doesn't spread needs to do more research, and apparently has never had the disease.

From my research over the years, Colitis doesn't spread but Crohn's can.  That is why with Colitis if they cut it out, you are cured.  This isn't true with Crohns because it can appear elseware from your mouth to the anus. 

Posted 11/16/2009 6:35 PM (GMT 0)
When I first got sick it was affecting my anus with perianal crohn's skin tags (that's where it actually started for me, not in the small intestine like it does for the majority), then it quickly affected my rectom, colon and small intestine all at the same time for a couple of yrs before it finally healed in my small intestine, but has remained constant for 18 yrs in my colon and anus and comes and goes (often in the past) in my rectom (not since the last 5 yrs which is the longest I haven't had it in my rectom, oddly enough that was when I started using probiotics)...

There's got to be some confusion on the info given about it not spreading, maybe for many it doesn't but I know for many others it has, does and can.

:)
Posted 11/16/2009 7:38 PM (GMT 0)
(popping in from UC)
UC can spread...there are quite a few people over on the UC forum who have had it happen. For example, a person who was diagnosed with left-sided colitis now has pancolitis (whole colon affected). It won't, howerver, ever spread beyond the colon, so that's why we can have a colectomy and be cured. However, even if a person only has left-sided colitis, they'll still remove the entire colon, as there's no guarantee it won't affect the remaining part of the colon.

I was diagnosed with pancoltis, so mine won't spread. ;)
Posted 11/16/2009 7:46 PM (GMT 0)
Didn't know that Fruitgirl. Thank you for the education. If only the doctors were more up to date now...
Posted 11/16/2009 7:58 PM (GMT 0)
Often UC starts in the rectom and spreads into the colon...with crohn's it can pop up anywhere and more than one area at a time. Sometimes UC will appear in the colon first then spread to the rectom...this is why having your colon and rectom removed when you have UC is considered a "cure" for UC, but with crohn's if you're CD is affecting your colon or rectom and you have either or both removed, crohn's will at some point affect your small intestines or even your esophagus (since CD can affect any part of your GI tract from mouth to anus, and UC is limited to the colon/rectom areas). That's one of the distinctive differences between UC and CD.

:)
Posted 11/16/2009 8:03 PM (GMT 0)
I've always been told that Crohn's 'hops, skips and jumps' and can appear anywhere randomly along the tract, I was also told that quite often it can be progressive and effect larger and larger sections of the system. Apparently there are a few 'lucky' ones who only ever get it it in one place and surgery puts them in remission for a very long time if not forever. I unfortunately am not one of those lucky ones. According to tests my worst area is still my worst area (lower part of small intestine and the colon) but in my last two flares I had symptoms of upper GI stricturing and stomach problems, so even though the same place is effected each time other places get effected too.
Posted 11/16/2009 8:21 PM (GMT 0)
I can't remember the source, but when I was first diagnosed and researching everything madly, I found a journal article which said that CD is mostly likely to spread in the first two years of diagnosis. After two years the chances of it spreading were reduced, but not eliminated. I wonder if the posters who have had it spread had that happen within the first two years???
Posted 11/16/2009 8:26 PM (GMT 0)
Was DX back in 1989 and it just spread about 2 years ago
Posted 11/16/2009 8:31 PM (GMT 0)
Interesting Former, in my first 2 yrs of having it mine spread, though mine spread pretty much instantly (or popped up in my 3 areas instantly) but did stay in all the areas I mentioned above, for the first 2 yrs and then remained in the anus and colon (on and off in the rectom)...of course like everything else related to IBD, it's individualistic...there are guidelines based on what researchers have learned so far but it can still be so different for each person.

:)
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