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

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Veteran Member

Date Joined May 2009
Total Posts : 703
   Posted 11/15/2009 6:39 PM (GMT -7)   
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.

Regular Member

Date Joined Aug 2009
Total Posts : 377
   Posted 11/15/2009 6:49 PM (GMT -7)   
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.

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Date Joined Jul 2006
Total Posts : 6927
   Posted 11/16/2009 8:14 AM (GMT -7)   
good to know I am abnormal...LOL just kidding
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 11/16/2009 8:35 AM (GMT -7)   
Me too. Mine has gone from the ileum to the sigmoid...

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Veteran Member

Date Joined Jul 2008
Total Posts : 674
   Posted 11/16/2009 8:47 AM (GMT -7)   
Mine is spread all over the place. 

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings
Current Meds: Cimzia, Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: Sept 4, 2009 to Take Down Abdominal Fistula!!  (On hold until current flare is under control, boo!)

Carnival Huckster
Regular Member

Date Joined Oct 2009
Total Posts : 159
   Posted 11/16/2009 9:02 AM (GMT -7)   
Mine spread like wild fire ... from the terminal ileum to the jejunum. Interestingly my terminal ileum is now clean with no signs of disease.

+ 34 year old male
+ Crohn's Disease DX in 1997, doc said it was "moderate to severe"
+ Currently taking 9mg entocort and 40mg prozac
+ SCD for past 10 years
+ 4,000 mg MSM, Calcium, Vitamin D, Multivitamin, S. boulardii, Acidophilus
+ Section in lower jejunum is badly strictured (5mm wide opening continues for 10cm!) but otherwise no other problems in bowel
+ No surgeries so far

Post Edited (Carnival Huckster) : 11/16/2009 9:14:36 AM (GMT-7)

Veteran Member

Date Joined Jan 2006
Total Posts : 3143
   Posted 11/16/2009 9:55 AM (GMT -7)   
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!
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/16/2009 11:03 AM (GMT -7)   
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. 
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 11/16/2009 11:35 AM (GMT -7)   
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.

bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 11/16/2009 12:38 PM (GMT -7)   
(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. ;)
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, OrthoNovum, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
Thread with links to UC resources and  information:

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/16/2009 12:46 PM (GMT -7)   
Didn't know that Fruitgirl. Thank you for the education. If only the doctors were more up to date now...
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 11/16/2009 12:58 PM (GMT -7)   
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.


Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 11/16/2009 1:03 PM (GMT -7)   
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.

Regular Member

Date Joined May 2009
Total Posts : 173
   Posted 11/16/2009 1:21 PM (GMT -7)   
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???
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......

Regular Member

Date Joined Mar 2009
Total Posts : 452
   Posted 11/16/2009 1:26 PM (GMT -7)   
Was DX back in 1989 and it just spread about 2 years ago
36 yr old Male with Crohn's Disease since '88 - No Surgery yet
Been on almost every type of drug with bad results
Remicade since Nov 2009

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 11/16/2009 1:31 PM (GMT -7)   
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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