Being I have FAP this is all regular stuff for me. I have had severe dysplasia, an ablation by light and marked with ink. Hasn't returned in a year. If you do scopes then it should be managed but I had to go every 3 months for an upper scope for my issues. Now I go yearly.

I was determined to have low grade dysplasia back in 1991, when none of this technology existed. I was simply told to have the colon removed and that the cancer risk, especially with 20 years plus of UC under my belt at that time, was very high. I followed the advice and had the colectomy. I should note that from the time I had my last colonoscopy in 1991, when I had the LGD finding, to early 1992 when I had the colectomy, I experienced significant deterioration. My surgeon told me my colon was dissolving in his hands when he took it out and the surgery, although done on an elective basis, could not have waited any longer. It is likely that if I had not had the colectomy, I would have had toxic megacolon before I ever had cancer. I don't think that the possible threat of toxic megacolon is as fully appreciated as it should be, which is why I mentioned it.

The scary part is I did not feel like I was going to die. I felt like I was in the normal UC flare in the weeks before surgery. You may get lulled into the belief that everything is fine, and it really isn't.

Thanks for the replies.

I do not have FAP, I have 10+ years of UC.

Currently in a medication free remission. GI described the colon as pristine, histology was inactive colitis with small amount of low grade dysplasia in one spot.

I'm not against medication, but Asocal and Immuran intolerant, and wasn't willing to risk tnf blockers anymore with dysplasia.

If I flared again I would go for surgery right away. It's just difficult to walk into surgery being normal.

In Sept 83 they found stage 2 dysplasia on my pap smear (vaginal) and by Xmas I was at stage 4...I was moving to Paris the following week and refused to put my life on hold for my disease...so I moved here, went strait to the American Hospital in Paris and started my follow-ups with biopsies every 6 weeks. I was followed for nearly 5 yrs with my displasia going up and down from stage 2 to 5 over the years...I gave up meat, chemicals, only ate natural foods and exercised 2hrs daily...(no idea if it helped or not, but I was alive so I kept doing it)...in the end it spread, they did laser abalation on me, chemo and kept me on a very short leash for 5yrs...
My oncologist told me that dysplasia can come and go and you can 'leave it be until you can't'...you know what is best for yourself but I don't suggest putting your life in danger over a colon.
Sharon

Hi Sharon

Thanks a lot for your reply.

The pap smear system sounds better then the colitis one... with 5 stages it must be easier to monitor the severity and changes.

With only 2 stages (low and high) of colitis dysplasia it makes it hard to understand progression/regression. (my understanding is that "indefinite isn't a stage, just indicates to much inflamation to interpret the specimen".)

When you get to high grade dysplasia there's no question about it.

With low grade it's a bit of guess work to monitor it. It does seem to come and go, and then it becomes a question of when to pull the trigger.

Just in case it makes a difference in regard to how you think about it, when it comes to UC and cancer, low grade dysplasia does not necessarily progress to high grade then carcinoma in a linear fashion. Unfortunately, in UC what can happen is you have low grade here then there, then nowhere. Cancer can arise out of the blue in an area that is not even close to where dysplasia was found before. Of course, high grade is most associated with spontaneous incidence of cancer. The reason they get so nervous with high grade is because of the findings of undiagnosed cancer after colectomy in the presence of high grade dysplasia. Of course, you are at the point in years with the disease where the cancer risk starts going up.

The question you need to answer is are up to having aggressive surveillance essentially indefinitely? If so, then all is dandy. But, as reported in this study, some patients developed surveillance fatigue (fed up with it all).

http://www.jwatch.org/jg201301...-low-grade-dysplasia

In addition, where the dysplasia is found is significant too. If it is distal (rectum or sigmoid) it is more likely to progress. Also, if you have pancolitis, your risk is higher than if it is left-sided UC only.

http://www.giejournal.org/arti...1%2901910-9/abstract

Not that you need more to add to the confusion. It sounds like your doc is on top of things and will let you know when it is time to get anxious. I know it is hard to choose surgery when you are feeling well.

Jan

Hi Jan

Thanks for the reply. I am at the point where I do have to think about whether I am up for surveillance indefinately. The first year of this you kind of just go from colonoscopy to colonoscopy as "due dilligence" or "second opinion".

Now I am at the point where if I go onto more colonoscopies I am actively choosing the surveillance route.

Sure, and that is fine too. Sometimes that route is good, if only to give your mind time to wrap around the idea of colectomy. I lasted a good 23+ years with just the routine surveillance (when I was first diagnosed they hadn't even begun using fiberoptic scopes yet!). Then after 20 years my GI started nudging me toward colectomy. I was comfortable just watching it because no dysplasia had ever been encountered. But, I had pancolitis, and even being in remission most of the time, I knew the dice were rolling. Of course, by the time I had made up my mind to go ahead and have the colectomy "in a year or two," I wound up in a horrible flare that moved things along quicker than my wonderful plans.

But, at least I was able to live with UC long enough for the j-pouch to become mainstream.

Go figure...

Jan