DMM, I understand your reluctance to move forward, but the reality is that the dysplasia is the best warning you're going to get. There are very good reasons they're advising you to have the colon removed - there are lots of possible futures worse than a J-pouch. If it were my body I'd be finding the right surgeon to count on for the next step. I wish the news were better.

I had low grade dysplasia and was strongly recommended to have a colectomy.  From the 9 months from my last colonoscopy until I had surgery, I deteriorated badly and the colon was "almost dissolving" in my surgeon's hands when it came out.  I would have had toxic megacolon probably in a matter of weeks- my surgeon told me that although elective when scheduled, the surgery could not have waited any longer.

Cancer isn't the only bad thing that can happen by avoiding surgery.  Toxic megacolon or plain old deterioration to the point where you are not healthy, and have less of a chance of a good result, are also possibilities.  Nobody wants to believe those things will happen, but they can happen, and I was headed down that road.  In my case the UC had spread from the lower part of my colon to the entire colon, so the writing was on the wall that things were getting worse despite high dosages of Prednisone.  In hindsight the only thing I would change is I would have had surgery about 5-6 years sooner than I did.

The HGD finding is a strong sign to not wait any further.

Good luck and please stay on top of your treatment.

Thanks. I fully expect to have the surgery but it is a difficult choice when you feel absolutely fine and all of the plumbing works as designed. What I find particularly appalling is that colon treatment has not progress further, I guess it is because removal would appear to solve the immediate problem. This is not the case in other cancers and so the medical world was froced to develop other treatments. 

Many cancers develop (and spread) in a body that feels "absolutely fine." I have seen it happen with family members who had very minor or no signs and ignored them.  An HGD finding is not a minor sign.

There are treatments for UC and Crohn's that work to keep those diseases in check in many cases, to the point where surgery is not needed.  I have a friend who is in his mid 50s, has had UC for over 30 years and has kept it in check with 6MP.  He will not have surgery until, and unless, there is a finding of HGD.  I treated UC for over 20 years, but in the last 5 years there was steady deterioration despite continuation of previously effective treatments. So it's not like there aren't treatments- there are many that did not exist when I had UC 1972-1992.  In your case, whatever treatment you had did not prevent the HGD.  So it's now about where you are, and not where you could have been and what ifs.

Stay on top of whatever you are being told to do because you are in a vulnerable state.

My GI discovered a lesion in my anal canal while performing a routine scope exam of my j pouch that showed high grade dysplasia.  It was removed by a surgeon and found to be malignant.  Fortunately, it was caught early enough and the surgeon obtained sufficient margin to prevent spreading to other organs.  At the time, I was on an annual scoping schedule and this cancer had developed quickly.  I can understand your reluctance to have your colon removed at this time, but there are consequences for waiting too long.  I am assuming that your doctors have ruled out the possibility of just removing the section of colon that has dysplasia.

Thanks BillV, apparently the HGD location is low enough that my surgeon feels he has only one chance at surgery. If he does a limited resection, it would preclude a future J-pouch and then my only option is a bag.  I am waiting 6 months to see it the situation worsens. They were very clear at Johns Hopkins and Georgetown that I am a walking time bomb but I am well into my sixties and I am comfortable with my strategy. If this HGD were at the other end they would treat it with high frequency radio waves, radiation or chemo but no such option exists on the exit end. 

I know you have given this much thought and deliberation, but I feel compelled to give you one more tidbit of advice (even though I am sure your doctors advised of this). 

Colon cancer that is associated with IBD does not follow the same pattern as that which arises from polyps or other non-IBD related causes. It often arises from a flat lesion that is difficult to view and can occur in areas that had NO previous areas of dysplasia. By the time a carcinoma is detected, it often is quite advanced. Frequent surveilance might be OK with low grade dysplasia, but high grade dysplasia is a big warning, and you may already have undetected cancer that could only be found on examining the colectomy specimen.

Certainly, you are free to make your own choices. Just be sure you are fully versed regarding the risks you are taking on. We did have some members, who have since died, who chose to monitor rather than deal with colectomy, for the same reasons as you. They still wound up with a colectomy, but also metastatic cancer.

Take care and I wish you well,

Jan

Thanks, I truly appreciate the wisdom of the people on this site. This has been a journey of contradictions. I was told I had Chron's disease years ago but have had no symptoms for 15 years and two Promethious tests were negative. I was told about flat polyps but the one polyp I had was very distinct and pronounced. I was told this was all very urgent but ten months, five colonoscopies and 80 biopsy specimens after discovery there has been no visible change. So my case is 100% about the risk of cancer. I am looking forward to the next surveillance to see if there is any change. As I tell the surgeon, I am more afraid of living a long diminished life than I am of dying. I have no death wish but I will hold onto my great life as long as I can. I believe that once they butcher me up, my life will be a pale reflection of what it is today. God willing, I will report back in six months. If not, well such is life. 

This is your choice and your decision and I agree what you said about it changing your life...it does!!! But for most for the better for others I have read not the case. But the one thing I was told by my surgeon is that it is ideal to have the surgeries done while being healthy since it is easier to bounce back and sometime when you are so sick you may not get the jpouch. For me I had no choice my colon was failing and did not respond to meds and I always thought it would not happen to me but it did and I am so greatful I am alive and well to tell this story to you!!! I would speak to a surgeon or two and form a relationship with him/her to have these types of open discussions although I find this group and one on Facebook much more open and honest.

Well, hopefully your Crohn's diagnosis was incorrect and you never had IBD. It happens. I will keep my fingers crossed for you that all goes well. I spent about 23 years from my initial UC diagnosis (severe pancolitis) mostly in remission and did not have my colectomy until I had a refractory flare unresponsive to any treatment. In all that time I never had any dysplasia, and none was detected on the final colectomy pathology. I consider myself very lucky!

Jan

I agree, I learned more today about after effects than in 10 months of hospital visits. I have the best colon surgeon at Johns Hopkins waiting with his scalple at the ready. As soon as something definitive appears I will give up the fight. 

DMM,

Please keep us posted on what happens to you. Your case has some significance for people on this board, including myself, who may be in the same situation down the road. As I'm sure you know, with J pouch surgery, the rectal cuff is left in, and that is the area where dysplasia or cancerous cells can appear in persons with J pouches. I have a 43 year history of inflammatory bowel disease, 20 years with ulcerative colitis, and 23 years with a J pouch that has annually shown inflammation in the pouch and in the rectal cuff. I am 52 years old, but it's very clear to me that as I get into my 60s or perhaps even before then, I am at risk of being in the same situation that you are now in. I am annually scoped and biopsied in part because of the dysplasia that was found in my colon back in 1991.

Good luck and hope you don't need to have surgery.

Thank you, I will keep the board posted. Every situation appears to be different. I have no symptoms of anything and yet the detection of HGD sent the GIs to immediate surgery because if you have HGD and UC the standard of practice is colon removal. I took two blood tests called Promethious and both were negative for UC or Chron's but still the fact that I had some sort of bowel disorder briefly fifteen years ago has convinced them that removal is the only option. Also they describe the polyps as flat but they clearly are not flat ( I stayed awake for one of the five colonoscopies to see for myself) I actually talked one GI into removing the largest polyp and he did, there was no residual HGD. I think there are enough contradictions in my case that another six month wait is prudent but it is clearly risky. Time will tell.