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Location of your disease changed over time?

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Crohn's Disease
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Posted 3/9/2014 12:08 PM (GMT -5)
Hi All,

I was initially diagnosed with crohns colitis by my previous gi. I had inflamation in sigmoid colon only. After 2 years of remission, I am flaring since last 1 1/2 years. Went to new gi and had colonoscopy with lots of biopsy and now I have continuous inflamation from rectum into traverse colon and it is diffused.So my new GI thinks it is ulcerative colitis. Had prometheus sgi blood test and it came back as indetermined colits.

I was reading article on MyIBD.org and it said that in crohns location does not change. It says like

"Unlike ulcerative colitis, Crohn's can develop anywhere in the intestine, from the mouth to the anus. However, it does not jump around. Usually, when it announces itself in one or several locations, it remains there. "

http://myibd.org/PatientEducation/DiseaseBasics/index.html

 

I have moved to 6mp and it is  not helping fully and might be heading towards surgery in near future. So what about you all who have definate diagnosis of crohns, does location stay same for you?

Posted 3/9/2014 4:05 PM (GMT -5)
tongue  i, I was diagnosed with crohns 37 years ago when I was 15 years old.  It started with 3 inches on my left side (ileum),  since then it grew till two and a half feet which I had removed September 13, 2013.  Hopefully, that is it!  I honestly didn't know it was going to grow so much.  Were all in this together.  Take care of yourself!
Posted 3/9/2014 4:39 PM (GMT -5)
@figsk8 Thanks. So it did grow for you. How are you feeling after surgery? Are u on any maintainance medication. Wish you life long remission with this surgery
Posted 3/9/2014 5:03 PM (GMT -5)
When I was diagnosed in 2006, I only had inflammation in my terminal ileum. Since then, I have had inflammation in my esophagus, stomach, and rectum, as well as my TI (again). So either that statement about Crohn's is not absolute, or I have something else going on. :)
Posted 3/10/2014 2:49 PM (GMT -5)
Hi PamSmith:

Feeling much better after surgery. Still trying to get all my strength back and some weight, just seem to pick up every virus going out there. Other than that, no pain, thank goodness. Honestly I don't regret the surgery at all, just having the temporary stoma can be a pain. But I will get through it! I am on humira, every other week and it is keeping my crohns under control. Yahoo! You will be fine too! I wish you all the best for your health!
Posted 3/10/2014 3:54 PM (GMT -5)
H, I was diagnosed 35 years ago aged 13 with Crohn's Started with inflammation in the colon treated with Salazopyrine. the rest of my info is in my signature below. mine definitely changed locations along with dreaded fistula's x
Posted 3/10/2014 8:58 PM (GMT -5)
Hey Pam, I think it's just a general guide line but we are all so different...when I first became sick it was affecting my small intestine, colon, rectum and anus (perianal crohn's skin tags) all at the same time for a good 2 yrs before it finally cleared up in my small intestine, remained constant in my colon, on and off in the rectum and constant with the perianal crohn's skin tags (they were mistaken for hemmies and were banded which was a huge mistake)....that's been my experience with my CD. Also, fistulizing cd is very common when it's affecting the colon and perianal region, and even though I've had it constant in both those areas for 23 yrs I only just recently developed my very first rectovaginal fistula, and that's not common although in my case I'm glad I haven't been suffering the entire time with fistula issues...it's just another example of how CD can affect each of us so differently even when there are "guidelines" for how CD "generally behaves".
Posted 3/11/2014 1:10 PM (GMT -5)
I was diagnosed in 2002 with Crohn’s Colitis. Prior to my most recent scope, it had only affected my rectum/anus and distal colon. I had a very severe case including abscesses, fistulas, fissures, tags, and all the ick that comes along with CD. Once all these things were removed (I now have a sigmoid colostomy), I was in remission for about 3 years. Last year, I had my first flare since surgery and another scope showed that other previously unaffected portions of bowel were showing inflammation, I’m told it looked pretty bad around something called the Hepatic Flexure. Also, my GI found some evidence of disease in my TI. Since Crohn’s is a systemic, autoimmune problem, it makes more sense to me that it can and will change over time. The portion of my body which was highly affected was removed- but the underlying disease wasn’t cured and won’t go away. This says to me that it could come back in another spot- and it did. Granted my opinion is based on anecdotal evidence, but I disagree with the validity of that quote!
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