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

[Guest guest]

,

It seems to me that you are asking all of the right questions

and that you understand all of the factors involved. When dysplasia is

present, even when it is low grade and even when you have scopes every 6

months, it is impossible to rule out a cancer due to a small and selective

biopsy sample. If every biopsy that has revealed dysplasia has been

contained to a polyp, then this is a slightly different case since you can be

assured that it is removed and I can completely understand any hesitancy you

would have regarding getting a colectomy in this scenario. If

I were in your shoes, I would probably evaluate this decision 6 months at a

time. If you had a 3rd consecutive scope revealing low grade

or high grade dysplasia, then I make appointments to discuss the colectomy and

j-pouch surgery.

I was in a very similar situation 4 years ago. I had a

scope that revealed low grade dysplasia, then a repeat in 6 months which

revealed no dysplasia whatsoever (and extensive biopsies). But alas, the

following scope revealed a stricture and high grade dysplasia which warranted a

very prompt colectomy surgery as they were concerned about the stricture being

cancerous. Whether or not there was dysplasia present at the middle scope

we do not know, but it very easily just could have been missed.

Another suggestion that I have for you it to seek a 2nd

opinion from a major medical center. It often happens that a

pathologist will confuse dysplasia for the inflammation that is common in

UC. It takes a certain amount of experience and training to determine

what the difference is and it is best to find that at a major medical

center.

Lastly, I’ll share a little bit with you about my J-pouch

experience. I had a 2 step procedure done in summer of 2005 at Mayo

Clinic in Rochester (they are the ones that also found my PSC). I had

gone from having my UC in remission for many years much like you to having a

J-pouch that found me “going” 10-12 times a day. It was a big

adjustment for me, to say the least. But with all things

considered it does not change my quality of life since those bathroom trips are

never urgent and I sleep much better knowing that my chances of developing

colon cancer are almost eliminated. Since I do still have a small rectal

cuff, there is a little bit of tissue that needs to be monitored but it

is a very easy scoping procedure.

I hope the very best for you as you make this decision and I’ll

be praying for a clear decision and peace for you in this process. If you

want more information about J pouches or to post questions and get a lot of

responses for it, go to J-pouch.org and there are over 10,0000 members there

who are very active and helpful. I am a member there and realized that

there is a lot of knowledge being shared in that group.

Rick

From:

[mailto: ] On Behalf

Of jasonsea

Sent: Friday, January 16, 2009 1:01 AM

To:

Subject: To colectomy or not to colectomy...that is the

question.

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]

,

It seems to me that you are asking all of the right questions

and that you understand all of the factors involved. When dysplasia is

present, even when it is low grade and even when you have scopes every 6

months, it is impossible to rule out a cancer due to a small and selective

biopsy sample. If every biopsy that has revealed dysplasia has been

contained to a polyp, then this is a slightly different case since you can be

assured that it is removed and I can completely understand any hesitancy you

would have regarding getting a colectomy in this scenario. If

I were in your shoes, I would probably evaluate this decision 6 months at a

time. If you had a 3rd consecutive scope revealing low grade

or high grade dysplasia, then I make appointments to discuss the colectomy and

j-pouch surgery.

I was in a very similar situation 4 years ago. I had a

scope that revealed low grade dysplasia, then a repeat in 6 months which

revealed no dysplasia whatsoever (and extensive biopsies). But alas, the

following scope revealed a stricture and high grade dysplasia which warranted a

very prompt colectomy surgery as they were concerned about the stricture being

cancerous. Whether or not there was dysplasia present at the middle scope

we do not know, but it very easily just could have been missed.

Another suggestion that I have for you it to seek a 2nd

opinion from a major medical center. It often happens that a

pathologist will confuse dysplasia for the inflammation that is common in

UC. It takes a certain amount of experience and training to determine

what the difference is and it is best to find that at a major medical

center.

Lastly, I’ll share a little bit with you about my J-pouch

experience. I had a 2 step procedure done in summer of 2005 at Mayo

Clinic in Rochester (they are the ones that also found my PSC). I had

gone from having my UC in remission for many years much like you to having a

J-pouch that found me “going” 10-12 times a day. It was a big

adjustment for me, to say the least. But with all things

considered it does not change my quality of life since those bathroom trips are

never urgent and I sleep much better knowing that my chances of developing

colon cancer are almost eliminated. Since I do still have a small rectal

cuff, there is a little bit of tissue that needs to be monitored but it

is a very easy scoping procedure.

I hope the very best for you as you make this decision and I’ll

be praying for a clear decision and peace for you in this process. If you

want more information about J pouches or to post questions and get a lot of

responses for it, go to J-pouch.org and there are over 10,0000 members there

who are very active and helpful. I am a member there and realized that

there is a lot of knowledge being shared in that group.

Rick

From:

[mailto: ] On Behalf

Of jasonsea

Sent: Friday, January 16, 2009 1:01 AM

To:

Subject: To colectomy or not to colectomy...that is the

question.

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]

,

It seems to me that you are asking all of the right questions

and that you understand all of the factors involved. When dysplasia is

present, even when it is low grade and even when you have scopes every 6

months, it is impossible to rule out a cancer due to a small and selective

biopsy sample. If every biopsy that has revealed dysplasia has been

contained to a polyp, then this is a slightly different case since you can be

assured that it is removed and I can completely understand any hesitancy you

would have regarding getting a colectomy in this scenario. If

I were in your shoes, I would probably evaluate this decision 6 months at a

time. If you had a 3rd consecutive scope revealing low grade

or high grade dysplasia, then I make appointments to discuss the colectomy and

j-pouch surgery.

I was in a very similar situation 4 years ago. I had a

scope that revealed low grade dysplasia, then a repeat in 6 months which

revealed no dysplasia whatsoever (and extensive biopsies). But alas, the

following scope revealed a stricture and high grade dysplasia which warranted a

very prompt colectomy surgery as they were concerned about the stricture being

cancerous. Whether or not there was dysplasia present at the middle scope

we do not know, but it very easily just could have been missed.

Another suggestion that I have for you it to seek a 2nd

opinion from a major medical center. It often happens that a

pathologist will confuse dysplasia for the inflammation that is common in

UC. It takes a certain amount of experience and training to determine

what the difference is and it is best to find that at a major medical

center.

Lastly, I’ll share a little bit with you about my J-pouch

experience. I had a 2 step procedure done in summer of 2005 at Mayo

Clinic in Rochester (they are the ones that also found my PSC). I had

gone from having my UC in remission for many years much like you to having a

J-pouch that found me “going” 10-12 times a day. It was a big

adjustment for me, to say the least. But with all things

considered it does not change my quality of life since those bathroom trips are

never urgent and I sleep much better knowing that my chances of developing

colon cancer are almost eliminated. Since I do still have a small rectal

cuff, there is a little bit of tissue that needs to be monitored but it

is a very easy scoping procedure.

I hope the very best for you as you make this decision and I’ll

be praying for a clear decision and peace for you in this process. If you

want more information about J pouches or to post questions and get a lot of

responses for it, go to J-pouch.org and there are over 10,0000 members there

who are very active and helpful. I am a member there and realized that

there is a lot of knowledge being shared in that group.

Rick

From:

[mailto: ] On Behalf

Of jasonsea

Sent: Friday, January 16, 2009 1:01 AM

To:

Subject: To colectomy or not to colectomy...that is the

question.

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 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]

, 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]

Aw heck, Barby -- 5 sons would slow most people down under the best of

circumstances and you have prospered in spite of the surgery. You're

my hero of the day!

Penny

>

> An ileostomy bag could

> still be in my future, >>>

>

> I went to college, graduated with 2 degrees from 2 different

schools, married and had 5 sons.

>

> Blessings,

> Barby

>

>

>

>

[Guest guest]

-, I was also diagnosed with uc in 1998 and psc in 2000, In July

of last year I had my annual colonoscopy done and they found

dysplasia -associated lesion or mass, and my G.I. recommended a

colectomy and ileoanal pouch anastomosis. I decided to get a second

opinion and waiting to get another colonoscopy done. I have also

being doing some naturopathic treatments. Has anyone had a ileoanal

pouch anastomosis done and what are the problems associated with this

procedure. My G.I. said there could be leakage that means I would

have to go back to wearing a pouch. I wanted some information about

diet restrictions and how to cope with body image after surgery.

After you get the ileoanal pouch anastomosis are you continent? or do

you still leak? If anyone can give more information about the

procedure that would be great.

Thanks.

-- In , " jasonsea " wrote:

>

> 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 was also diagnosed with uc in 1998 and psc in 2000, In July

of last year I had my annual colonoscopy done and they found

dysplasia -associated lesion or mass, and my G.I. recommended a

colectomy and ileoanal pouch anastomosis. I decided to get a second

opinion and waiting to get another colonoscopy done. I have also

being doing some naturopathic treatments. Has anyone had a ileoanal

pouch anastomosis done and what are the problems associated with this

procedure. My G.I. said there could be leakage that means I would

have to go back to wearing a pouch. I wanted some information about

diet restrictions and how to cope with body image after surgery.

After you get the ileoanal pouch anastomosis are you continent? or do

you still leak? If anyone can give more information about the

procedure that would be great.

Thanks.

-- In , " jasonsea " wrote:

>

> 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 was also diagnosed with uc in 1998 and psc in 2000, In July

of last year I had my annual colonoscopy done and they found

dysplasia -associated lesion or mass, and my G.I. recommended a

colectomy and ileoanal pouch anastomosis. I decided to get a second

opinion and waiting to get another colonoscopy done. I have also

being doing some naturopathic treatments. Has anyone had a ileoanal

pouch anastomosis done and what are the problems associated with this

procedure. My G.I. said there could be leakage that means I would

have to go back to wearing a pouch. I wanted some information about

diet restrictions and how to cope with body image after surgery.

After you get the ileoanal pouch anastomosis are you continent? or do

you still leak? If anyone can give more information about the

procedure that would be great.

Thanks.

-- In , " jasonsea " wrote:

>

> 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 a colectomy and a J-pouch conversion in 2003 in a two step

procedure. After having UC since 1996, it was life changing. At

first I had to go 10-12 times a day but after 6 or 8 months this

slowed to 5 or 6 times. That is where i am now. Other than a few

bouts with Pouchites, I have had a normal life until recently - I

also have PSC and my liver is beginning to fail.

it sounds like with the dysplasia I would take their advise and have

the surgury. In 6 or 8 months, your life will be alot better.

Jeff

UC 1996, Colectomy 2003, J-pouch 2003, PSC 2003

>

> 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 a colectomy and a J-pouch conversion in 2003 in a two step

procedure. After having UC since 1996, it was life changing. At

first I had to go 10-12 times a day but after 6 or 8 months this

slowed to 5 or 6 times. That is where i am now. Other than a few

bouts with Pouchites, I have had a normal life until recently - I

also have PSC and my liver is beginning to fail.

it sounds like with the dysplasia I would take their advise and have

the surgury. In 6 or 8 months, your life will be alot better.

Jeff

UC 1996, Colectomy 2003, J-pouch 2003, PSC 2003

>

> 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 a colectomy and a J-pouch conversion in 2003 in a two step

procedure. After having UC since 1996, it was life changing. At

first I had to go 10-12 times a day but after 6 or 8 months this

slowed to 5 or 6 times. That is where i am now. Other than a few

bouts with Pouchites, I have had a normal life until recently - I

also have PSC and my liver is beginning to fail.

it sounds like with the dysplasia I would take their advise and have

the surgury. In 6 or 8 months, your life will be alot better.

Jeff

UC 1996, Colectomy 2003, J-pouch 2003, PSC 2003

>

> 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

>