To colectomy or not to colectomy...that is the question.

January 15, 2009

I have found the recent discussions regarding j-pouch complications

interesting. I am facing the decision on whether or not to consider

total colectomy due to recent biopisies of low-grade dysplasia (one

biopsy 12 months ago and one biopsy 1 month ago).

It is well known 1) patients with long standing UC are at an elevated

risk of developing colon cancer 2) patients with pancolitis are at an

even higher risk and 3) patients with PSC are at an even higher

risk. Unfortunately I meet all of the above.

There seems to be little disagreement that in these patients an

incidence of cancer, high-grade dysplasia and even perhaps low-grade

dysplasia in a lesion or flat mucosa should be referred for

colectomy. What is not agreed upon is what to do with patients that

have low-grade dysplasia within a raised or even flat polyp that can

be completely removed during colonoscopy. This is the grey area I

find myself in, now on two occasions.

On one hand, my colitis gives me very little problems, I can

literally go 10 years with very few symptoms so having UC really does

not impact my quality of life. I undergo yearly colonoscopies with

extensive biopsy surveillence and lately that has even been reduced

to every 6 months. So part of me thinks why fix what ain't broke and

undergo the risk and inconvenience of major surgery. I would hate to

go through this for no immediate reason.

On the other hand, part of me realizes that colectomy is probably

inevitable due to my risk factors and having UC for 20+ years. I am

still in relatively good health but my PSC is progressing and

transplant is probably in my future within 5 years. The worst case

would be to have to go through colectomy surgery in the midst of end

stage liver disease. Perhaps I should get it over with while things

are pretty stable. There is also the issue of waiting too long and

developing full blown cancer perhaps interfering with or delaying my

ability to undergo transplant.

I am in the process of seeking second opinions from other GI doctors

but am wondering if anyone here has faced similar circumstances and

what you ultimately decided to do.

in Seattle

UC 1991, PSC 2001

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