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Ulcerative Colitis
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Posted 6/18/2013 2:42 PM (GMT 0)
After 8 years of UC diagnosis, how often are your colonoscopies and what is the extent of your UC?
Posted 6/18/2013 2:45 PM (GMT 0)
At 8 years, I was still going every 3.

I've gone every 2 since about 18 years.

q
Posted 6/18/2013 2:46 PM (GMT 0)
My GI said that since I'm in such a solid remission, he'll let me go 5 years between them, at least for a little while.

ETA that I was diagnosed with pancolitis and have no idea what might happen if/when I flare again.  I'm hoping that it won't be as extensive, but you never know.

Posted 6/18/2013 2:59 PM (GMT 0)
my son goes every year and has since diagnosis in 2011.
Posted 6/18/2013 3:22 PM (GMT 0)
I was diagnosed in April 2009 and didn't have another one till Jan 2013.
Posted 6/18/2013 3:24 PM (GMT 0)
Does anyone know the recommended schedule for Colonoscopies after diagnosis? I'm wondering if annual is too frequent.
Posted 6/18/2013 3:37 PM (GMT 0)
 " I'm wondering if annual is too frequent."

yes

Posted 6/18/2013 3:39 PM (GMT 0)
So is every three years the norm for pre-8 years?
Posted 6/18/2013 3:43 PM (GMT 0)
I think it's pretty hard to say what the norm is, because a lot of it depends, IMO, on how well the patient is doing. If the patient is flaring often, it's probably best to do them more often to know if the disease is progressing or not, while if the patient has been in remission as I have, it's probably OK to go longer than three years.

Also, it really seems to vary from GI to GI.
Posted 6/18/2013 3:52 PM (GMT 0)
I think annual is too often, but then again I wouldn't want to wait every 3 or 4 years either. I think that is too long. I'm not sure what the correct schedule is, but it probably does depend on how well the patient is doing. Obviously there is no need to do one as often if the patient is in full remission. However, for the patients that flare 2 or 3 times per year, maybe an annual colonoscopy is not a bad idea. Colon cancer scares the heck out of me and a Colonoscopy is the only way to catch it early. I'm thinking every 2 years might be a good idea for my son.
Posted 6/18/2013 4:55 PM (GMT 0)
My GI told me yesterday I will need one every 2 years because my Chrons is severe. If within the next year I need put on humira or remicade I won't need one but after that year insurance will make me have one to make sure I need that drug.
Posted 6/18/2013 5:30 PM (GMT 0)
I've only had one -- April 2009. I keep forgetting what my doctor says about frequency except that I remember he said that he would increase the frequency if it appears that there has been a significant change in my disease. Evidently the increased risk of colon cancer associated with UC only occurs after 10 years of disease.
Posted 6/18/2013 6:21 PM (GMT 0)
Tony Snow was a journalist with UC who did some time in the white house. He followed the colonoscopy guidelines, had surgery, and eventually came down with cancer and died. His cancer was so small at the time of colonoscopy that it got missed and by the time they caught it the next time around it wound up being too late. I'm not trying to say anything one way or the other but I am saying that if you can tolerate colonoscopies I would either go by the guidelines or even more than the guidelines. I'm on the fence on this one overall because I am scared that colonoscopies can cause a backslide in your symptoms, sometimes temporarily, sometimes permanent. That makes one of those darned if you do, darned if you don't kind of situations.
Posted 6/18/2013 7:37 PM (GMT 0)
I agree, garylouisville. It's hard to know what is the right thing to do. It is an "invasive" procedure, however it is minimally invasive. I know of a young man who recently died from Colon Cancer, he was only 19. He was diagnosed with Crohn's at a young age and never had a follow-up Colonoscopy, because his Crohn's was in remission. By the time he had symptoms, it was too late; cancer had spread to the liver. So sad and to think it COULD have been caught at an early stage.
Posted 6/18/2013 7:42 PM (GMT 0)
Man I was diagnosed in 2007 and between sigmoids and full colonoscopies I have had to have had at least 15. Of course we had never been able to get me into full remission. Also I was having D from being lactose intolerant that no one knew about.
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