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

[Guest guest]

, I was living in your shoes 3 years ago. After refractory UC

that even mercaptopurine could not alleviate, I went ahead with the

total colectomy with permanent ileostomy (I also had high-grade

dysplasia; right-sided UC). This is life altering surgery and does

take a lot of prayer, research and consideration before making such a

move. You are correct in the increased concern for CCA with keeping

your colon and having PSC. Although the two diseases work

independently of each other, having both makes every day more risky

as time goes on. Only you can decide what is best for you. There

are some of us in this group who came to the realization that we have

lots of spare parts that we can learn to live without. If you wish

to discuss this further, please e-mail me privately.

May you find the right answer soon,

Deb

GERD, UC 1993, cholecystectomy 2004, PSC 2005, colectomy 2005, CKD

2007, SBO April 2008, one fat and happy golden retriever

[Guest guest]

Hi ,

I was in your shoes only a year ago. I had low grade dysplasia,

though when my slides were re-analzed at Mayo Rochester they actually

determined it was high-grade dysplasia, so I second the second

opinion issue. But anyway, I had an ileorectostemy, which means that

I don't have a pouch OR ileostomy bag. Rather, they connected my

small intenstine directly to my rectum. They could do that because I

had " rectal sparing " (though right now I'm afraid my rectum is

experiencing UC symptoms, but that's another matter). The surgery

experience was pretty positive compared to what I was expecting.

Despite the doctors' and nurses' warnings about incontinence,

frequent bowel movements, and other adjustment problems, I haven't

had issues. In fact, most nights I " sleep through the night " (I wish

my baby would do that!). I have a bowel movement about as often as I

pee, with no particular urgency, so really it's no biggy - I'm in the

bathroom anyway. Aesthetically, the scar is small and not too

bothersome. So my experience of the whole thing was that it was a

smooth and easy process.

Now as I mentioned, I'm currently experiencing symptoms so I'm headed

to Mayo tomorrow to get scoped on Monday. An ileostomy bag could

still be in my future, in which case I'll deal, but for the time

being, I'm so glad I went through with the colectomy.

Hope my perspective helps!

Ruth

>

> 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

>

[Guest guest]

I had mild dysplasia and was told I should have a colectomy. Like you I thought that since it was mild why do it. but all my doctors said I should so I did. I am so glad that I did because they found cancer on the outside wall of my colon that could not be found in a colonoscopy. I came through surgery fine as I am also in end stage liver disease. I feel very lucky now. I did not have to have chemo. I am having CT scans and MRIs done every six months.

Good luch with your decision,

Patti

Subject: To colectomy or not to colectomy...that is the question.To: Date: Friday, January 16, 2009, 1:00 AM

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 SeattleUC 1991, PSC 2001

[Guest guest]

Wow Patti. I had dysplasia also, and a colectomy, but no cancer. But I was told by a UCLA doctor that I had a 20% chance of already having cancer. It was a tough decision because I just flat out didn't want to have it done. I knew my life would never be the same again. In fact, I think I've slept through the night maybe 2-3 times since that colectomy in 2000. I get up for bowel movements 2-5 times per night. I also discovered during that surgery that my liver was cirrhotic, and with some research I suspected PSC, which is what it ended up being (and now I've also been diagnosed with autoimmune hepatitis). My UC (which had been very well controlled) kicked up after the colectomy (90% of the large intestine was removed), so I needed more and more meds for the UC, and the colon cancer threat was still there. So in 2005 & 2006 I had a 2 step j-pouch surgery done. I wish I still had a healthy large interestine, but that was just not going to happen. I'm very glad I didn't get colon cancer, and I'm glad I don't have that threat hanging over my head (except for the cuff around the anus, which still gets checked pretty often).Patti - you were lucky if you didn't need chemo. And you were lucky the cancer was caught presumably early. Your story is a true tale of caution. In my opinion, once dyplasia is found, it's time for the colon to go. It can just take a while to come to peace with that very difficult decision (I felt fine before the surgery, and knew I wouldn't feel as well after the surgery). There are 3 people in my family who died of colon cancer, and that death is a horrible one. So again, when there's dyplasia, you have no choice but to remove the colon. If you have UC, it's probably best to remove the entire large intestine right from the start, as the UC tends to get worse after surgery if you leave some of the large intestine in there (that's what I've read, and that was definitely my experience).My father got prostate cancer and it was caught early - he felt fine - no symptoms. He couldn't bring himself to doing what the doctor recommended to treat the cancer - which was at that point treatable with probably surgery and also radiation - he would have survived. Instead, he followed alternative medicine, and died. In the end, he was willing to do whatever was necessary to stay alive, but it was too late - the cancer had metasticized. It was an awful death. Apparently there is no pain like the pain from cancer - it's brutal. And then there's the nausea, vomiting, diarrhea, incontinence and then over all organ failure. All you can do is try to control the pain and make the person as comfortable as possible. It's a horrible way to die, and to know it's only going to get worse until you die. So I'm all for getting the colectomy or a j-pouch when there's dyplasia, even though that's not a picnic either (I have chronic pouchitis).For those contemplating a j-pouch or colectomy, check out http://www.j-pouch.org to get a realistic point of view, but remember that most of those who post there are having problems. Everyone is different. Some have a relatively easy time with a j-pouch, and some have a very difficult time. But it's a pretty safe procedure, so as far as I know it's incredibly survivable. And you'll learn to live with it. And hopefully you won't get pouchitis :-)Marie

To: From: patriciamalmquist@...Date: Sun, 18 Jan 2009 17:53:16 -0800Subject: Re: To colectomy or not to colectomy...that is the question.

I had mild dysplasia and was told I should have a colectomy. Like you I thought that since it was mild why do it. but all my doctors said I should so I did. I am so glad that I did because they found cancer on the outside wall of my colon that could not be found in a colonoscopy. I came through surgery fine as I am also in end stage liver disease. I feel very lucky now. I did not have to have chemo. I am having CT scans and MRIs done every six months.

Good luch with your decision,

Patti

From: jasonsea <kingpolo (AT) yabicorp (DOT) com>Subject: To colectomy or not to colectomy...that is the question.To: Date: Friday, January 16, 2009, 1:00 AM

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 SeattleUC 1991, PSC 2001

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