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Results from my first colonoscopy ever....

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Ulcerative Colitis
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Posted 12/31/2008 1:07 AM (GMT 0)
so my UC went from basically proctitis to pancolitis in under 4 years.... nice.


what does it mean for me other than the obvious, that it has spread?
Posted 12/31/2008 1:38 AM (GMT 0)
I don't know the answer to your questions but congrats on getting a colonocopy. I can't get one because I don't have insurance either. Isn't it a terrible feeling? My UC started as proctitis in 07 and has progressed to worse. Not sure how much worse bc I can't afford colonoscopy but I have been running to the toilet a lot lately. Hope you are feeling good.
Posted 12/31/2008 2:43 AM (GMT 0)
Well, did the GI say how mild or severe it was? If it's mild, then you'll probably just need 5 ASAs; if it's more severe, you might need stronger meds. How is Asacol working for you?

Posted 12/31/2008 2:45 AM (GMT 0)
Here's some recent info from those of us w/ pancolitis:

https://www.healingwell.com/community/default.aspx?f=38&m=1332050

Posted 12/31/2008 2:59 AM (GMT 0)
My GI originally declared it mild to moderate.,,,, But I have been since aug in a flare and have listened to him faithfully. Now My sister is head of cancer research forthe local Hospital ( clinical trials ) and she says this guy in the best for this disease. I have other clients who work at the cleveland clinic and my GI is a recognised expert in their opinion. And he can't get me into a remission. I feel this is such an individual disease that we have to take our own treatments into hand. We need their help, input, and script pads. But we also need to have a say and an opinion. Most of " the best" get the god complex and its a do as I say situation. Well I did that since AUg... now its time for me to take control. and I have been for the last 20-30 days and my symptoms are getting better. Not sayin his meds aren't helping. Or that I don't need him at all. Just that he sees so MANY patients. I need to be in control on my case. Sorry if this turned into a rant.
Posted 12/31/2008 3:13 AM (GMT 0)
unclebubba - what part of NE Ohio? I am in NW PA....North of Pittsburgh, South of Erie right on the line.

Sorry off topic.
Posted 12/31/2008 3:21 AM (GMT 0)
Well basically, bad news is, once you have pancolitis, you will always have pancolitis (or rather, the chance that it could spread throughout). But the good news is it won't ALWAYS be completely flared. When I was first diagnosed, I was told I had pancolitis. But then a few years later my colonoscopy only showed involvement in the rectum and sigmoid. Ulcerative colitis progresses forward and heals backwards. And with full involvement it's best to be on oral AND rectal meds to get all of it treated.
Good luck, sorry to hear the news but I hope everything gets better for you soon
Posted 12/31/2008 4:15 AM (GMT 0)
Sorry, but that's not really true. Pancolitis isn't a specific type of Ulcerative Colitis, it's just a term that refers to the extent of the inflammation. That said, statistically speaking once you get back in remission, and the inflammation subsides, it doesn't matter if you had pancolitis, it doesn't mean that your next flare will involve the entire colon again. In fact, you have just as much chance of getting "pancolitis" again as someone who's never had it. The bad news is, prolonged inflammation will cause scarring, and if you're having a hard time getting pancolitis under control, it will leave scars that can impair bowel motility, cause strictures and generally worsen the long term prognosis. The biggest problem with pancolitis is it's much harder to get under control than limited involvement, and a flare can last a lot longer.
Posted 12/31/2008 4:41 AM (GMT 0)
Docgonzo, good info. I have pancolitis and it was dxd back in 5/07 to be mod to severe by the pathology but the GI doing the scope said it was mild...what to believe? Also my latest scopes pathology 10/08 showed no IBD at all...unfotunately two months later after much stress and I'm fighting a flair. Appreciate your feedback and PM me if you prefer. Thanks
Posted 12/31/2008 5:34 AM (GMT 0)
Hey bbc, well you have to understand that a standard biopsy can only determine the presence (or absence) of inflammation, and the kind of microscopic changes that have occured on that small strip of tissue. A GI will usually do a few biopsies when performing a scope, and will usually go for the most inflamed looking areas. The diagnosis is set by the GI, and a biopsy is only used to confirm that the inital diagnosis is correct. Now, you would think that it would be able to determine for example if you have Crohn's or UC, but it can't. It can, however, determine if the inflammation is infectious in nature, if there is evidence of dysplasia or hyperplasia (which can lead to cancer), if the inflammation is chronic or acute, etc.

What I'm saying is that visual inspection by a GI is more important when determining the severity of the disease, because he can see how much inflammation there is, he can see if there is some stricture formation, colonic friability (normal mucosa doesn't bleed when rubbed gently, inflamed mucosa does), and more. So if he says it's mild, he probably means that, while there is extensive involvement, the degree of inflammation isn't as bad as it could be.
Posted 12/31/2008 6:29 AM (GMT 0)
I dont believe I am in a flare. I was having ribbon shaped stool and thats why it even got scheduled... needless to say I am very shocked and surprised. Blah. All she did was put me on prednisone, for what I dont know. Inflammation I assume but I feel in remission other than the painful passing of stool.
Posted 1/1/2009 10:33 PM (GMT 0)
The "ribbon-shape" indicates that the lumen (hollow space) of your colon has narrowed, a common development with UC inflammation. That's what gives you pain when you're trying to pass stool. Prednisone is a high-powered anti-inflammatory that should (taken as directed) relieve the inflammation so that your lumen returns to a more normal width; then the stool can pass thru more easily. The lumen is like the hollow of a tunnel-- you don't want it to get so narrow that it blocks. Take care of yourself, eh? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
Posted 1/1/2009 11:14 PM (GMT 0)
     I'm a bit confused.  When I was admitted to the hospital in May the CT scan indicated inflammation throughout the colon.  My amylase and lipase were WAY high meaning pancreatic problems.  That was on May 4th early a.m.  I was taken off the 6MP, given high dose of prednisone (60 mgm via pic line), Colazal, Cort enemas, Canasa plus 3 blood pressure meds for extremely high blood pressure.  By Thursday my pancreatic enzyme levels had returned to normal.  I had the colonoscopy the next day..Friday.  Colonoscopy showed ulcerative proctitis..mild/moderate with no inflammation in the upper colon.  Wonder why the CT scan showed inflammation throughout the colon?
Posted 1/2/2009 8:51 AM (GMT 0)
That is interesting Christine...there are degrees of inflammation...could be part of the reason...the other could be that the 6MP you were on previously plus high dosage pred via pic could have dealt with the inflammation fairly quickly. It seems UC heals from up to down.....interesting, nonetheless.

What were the biopsy results of your c-scope at that time? They could show microscopically what cannot be seen...even if mild.

q
Posted 1/2/2009 1:08 PM (GMT 0)
MBX5.... sorry just saw your question. Am 30 minutes est of canton. about 15 minutes west of lisbon.
Posted 1/2/2009 9:00 PM (GMT 0)

Moved from the Akron area 22 years ago, It still home to me!

next year.......go browns!

Posted 1/3/2009 2:33 AM (GMT 0)

Thanks for all the info : )

My GI doc said there are a small % of patients where there are no leftover tell tale sign the disease was even there when in remission but in the majority it leaves traces of previous damage.  Don't get me wrong, I 'm happy that my colon fully returns to normal when in remission...just wish remission would last longer than 2 months : (.

DocGonzo said...
Hey bbc, well you have to understand that a standard biopsy can only determine the presence (or absence) of inflammation, and the kind of microscopic changes that have occured on that small strip of tissue. A GI will usually do a few biopsies when performing a scope, and will usually go for the most inflamed looking areas. The diagnosis is set by the GI, and a biopsy is only used to confirm that the inital diagnosis is correct. Now, you would think that it would be able to determine for example if you have Crohn's or UC, but it can't. It can, however, determine if the inflammation is infectious in nature, if there is evidence of dysplasia or hyperplasia (which can lead to cancer), if the inflammation is chronic or acute, etc.

What I'm saying is that visual inspection by a GI is more important when determining the severity of the disease, because he can see how much inflammation there is, he can see if there is some stricture formation, colonic friability (normal mucosa doesn't bleed when rubbed gently, inflamed mucosa does), and more. So if he says it's mild, he probably means that, while there is extensive involvement, the degree of inflammation isn't as bad as it could be.

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