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Had a regular scope done this past August finding low grade dysplasia.  GI recommended surgery.  Went to surgeon who did follow up scope and 19 biopsies and found no dysplasia.  However, he is still suggesting surgery but is not adverse to the idea if I choose to not do it and get scoped annually.  However, he says the decision is mine and I kind of wished that the decision was made for me.  He says that they suggested surgery to eliminate threat of cancer developing but yet says that if I wait, it is unlikely that I put myself in any danger but does not eliminate the possibility.  I am so confused.  Anyone else found any form of dysplasia and what have your GI's suggested?  MY UC while throughout my colon, has not posed any real issue for me since I was diagnosed in 2005.  But since I am well into my 11th year and risks do rise, I am wondering what I should do.  Thoughts?

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So after 20 years with UC my annual scope turned up some low grade dysplasia. That's the first time my GI suggested surgery and I flipped my lid. I spoke to a surgeon, they said it was entirely possible that follow-up scopes could show it was a false result and that I should get re-scoped every 3-6 months just to be safe. My GI said that after 20 years my chances of developing colon cancer were 30% and I should consider surgery regardless. I desperately wanted to put it off for at least a year, as I had just started a new job, and he seemed to think that was possible.

 

3 months later I was re-scoped and it had progressed to high grade dysplasia, which is irreversible. So turns out I had to get j-pouch surgery, but I will say this - I'm doing way better than I expected, and it is AWESOME to not be on medication for the first time in twenty years. When they took my colon our there was in-situ cancer (meaning I was right on the edge of stage 1) throughout the whole thing. So it all progressed very quickly and I'm super lucky they got it out when they did!

 

So my advice to you would be to get another scope in 6 months just to be safe, and ask yourself if you'd rather be scoped more frequently for the forseeable future. That's the direction I was leaning in, but before I knew it the choice was no longer mine and surgery was my only option. BUT I'm glad I did it. Now I know what it's like the manage an ostomy should I ever have to go back to one permanently, and as I said, off meds! FINALLY!

 

 

Best of luck with whatever direction you decide to go in - no matter what, you've got plenty of people to turn to for their input  

I also had low grade dysplasia found in my colon and was recommended to have surgery after 20 years of UC.  I delayed for about 9 months after that diagnosis, and when I finally had surgery things had progressed and my surgeon advised me that my colon was dissolving in his hands as he removed it.  Apparently I was very close to experiencing perforation and toxic megacolon.   Things had gone from an elective surgery to a "can't wait any longer" situation based on what he told me after the surgery.  Ironically, one of the reasons surgery was delayed was that my surgeon wanted me to lose weight and it took some months to do that.

 

I have now had my J Pouch for 23 years, and although there has been chronic inflammation in my J Pouch, the rectal cuff gets biopsied every year and it's been consistently negative.  I really think in my case I made the right decision to have surgery when I did.  I got lucky, I think.

Last edited by CTBarrister

After 14 years of UC, my annual scope showed low grade/indeterminate dysplasia.  My GI decided to treat aggressively with UC meds for 3 months to see if it went away (meaning that what they saw was just inflammation).  Had another scope 3 months later that showed the dysplasia had become more widespread and also had increased in grade.  By the time I had my surgery 3 months after that, when my colon came out, there was high grade dysplasia throughout.  Long story short, you may want to play the wait-and-see game for a short period of time, but as you can see from my story and those above, the dysplasia can go from virtually non-existent to severe in just a few months.

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