Re: surgery on j-pouch, risk of losing pouch

[Guest guest]

Thank you so much, Arne! I got the link and joined the j-pouch

group --never knew there was one. It will be quite helpful.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (wife to Russ -genetic fap, j-pouch)

>

> I'm sorry to jump right into another inquiry, but curve balls are

> coming our way and I would appreciate whatever information anyone

> might have. For those who have or had a j-pouch, did any of you

ever

> require surgery inside the pouch -to remove growths of any sort?

> Were you able to keep your pouch or was it necessary to remove it

and

> replace it with an ostomy? My husband was admitted from the ER

into

> the hospital today/night and may need surgery on his pouch. We've

> been told he may lose it with the surgery (if he needs surgery).

> He's already been seen for over a year now for problems with his

> pouch (and this growth) by a GI surgeon and we knew this was a risk

> earlier on --had been told recently, though, that the risk was now

> minimal. My husband began bleeding last night and it hasn't

stopped,

> which is what brought us to the ER today. It's suspected that the

> growth has partly torn from the pouch wall. (My husband is not the

> one who has ibd -our son does, but my husband does have a pouch due

> to colon cancer yrs ago and that is why I am seeking the experience

> here of others with pouches). I promised my husband I would ask

here

> if anyone with a pouch has had surgery in it to remove a growth of

> any sort -and if there were any problems in keeping the pouch b/c

of

> that.

> Thank you to anyone who is able to share.

> -Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

> hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

>

[Guest guest]

Thank you so much, Arne! I got the link and joined the j-pouch

group --never knew there was one. It will be quite helpful.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (wife to Russ -genetic fap, j-pouch)

>

> I'm sorry to jump right into another inquiry, but curve balls are

> coming our way and I would appreciate whatever information anyone

> might have. For those who have or had a j-pouch, did any of you

ever

> require surgery inside the pouch -to remove growths of any sort?

> Were you able to keep your pouch or was it necessary to remove it

and

> replace it with an ostomy? My husband was admitted from the ER

into

> the hospital today/night and may need surgery on his pouch. We've

> been told he may lose it with the surgery (if he needs surgery).

> He's already been seen for over a year now for problems with his

> pouch (and this growth) by a GI surgeon and we knew this was a risk

> earlier on --had been told recently, though, that the risk was now

> minimal. My husband began bleeding last night and it hasn't

stopped,

> which is what brought us to the ER today. It's suspected that the

> growth has partly torn from the pouch wall. (My husband is not the

> one who has ibd -our son does, but my husband does have a pouch due

> to colon cancer yrs ago and that is why I am seeking the experience

> here of others with pouches). I promised my husband I would ask

here

> if anyone with a pouch has had surgery in it to remove a growth of

> any sort -and if there were any problems in keeping the pouch b/c

of

> that.

> Thank you to anyone who is able to share.

> -Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

> hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

>

[Guest guest]

Thank you so much, Arne! I got the link and joined the j-pouch

group --never knew there was one. It will be quite helpful.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (wife to Russ -genetic fap, j-pouch)

>

> I'm sorry to jump right into another inquiry, but curve balls are

> coming our way and I would appreciate whatever information anyone

> might have. For those who have or had a j-pouch, did any of you

ever

> require surgery inside the pouch -to remove growths of any sort?

> Were you able to keep your pouch or was it necessary to remove it

and

> replace it with an ostomy? My husband was admitted from the ER

into

> the hospital today/night and may need surgery on his pouch. We've

> been told he may lose it with the surgery (if he needs surgery).

> He's already been seen for over a year now for problems with his

> pouch (and this growth) by a GI surgeon and we knew this was a risk

> earlier on --had been told recently, though, that the risk was now

> minimal. My husband began bleeding last night and it hasn't

stopped,

> which is what brought us to the ER today. It's suspected that the

> growth has partly torn from the pouch wall. (My husband is not the

> one who has ibd -our son does, but my husband does have a pouch due

> to colon cancer yrs ago and that is why I am seeking the experience

> here of others with pouches). I promised my husband I would ask

here

> if anyone with a pouch has had surgery in it to remove a growth of

> any sort -and if there were any problems in keeping the pouch b/c

of

> that.

> Thank you to anyone who is able to share.

> -Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

> hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

>

[Guest guest]

Hi,I have a j-pouch in part due to the cancer risk as well as UC. So far I haven't needed surgery in the j-pouch, although I do seem to have chronic pouchitis. But so far no growths in the pouch. Your story is alarming as I've never heard of growths in the pouch before, and didn't think of it as a possibility. I'd hate to lose the j-pouch. I had an ileostomy for 3 months and that was no picnic.Marie

To: From: wymom94@...Date: Thu, 15 Jan 2009 05:33:41 +0000Subject: surgery on j-pouch, risk of losing pouch

I'm sorry to jump right into another inquiry, but curve balls are

coming our way and I would appreciate whatever information anyone

might have. For those who have or had a j-pouch, did any of you ever

require surgery inside the pouch -to remove growths of any sort?

Were you able to keep your pouch or was it necessary to remove it and

replace it with an ostomy? My husband was admitted from the ER into

the hospital today/night and may need surgery on his pouch. We've

been told he may lose it with the surgery (if he needs surgery).

He's already been seen for over a year now for problems with his

pouch (and this growth) by a GI surgeon and we knew this was a risk

earlier on --had been told recently, though, that the risk was now

minimal. My husband began bleeding last night and it hasn't stopped,

which is what brought us to the ER today. It's suspected that the

growth has partly torn from the pouch wall. (My husband is not the

one who has ibd -our son does, but my husband does have a pouch due

to colon cancer yrs ago and that is why I am seeking the experience

here of others with pouches). I promised my husband I would ask here

if anyone with a pouch has had surgery in it to remove a growth of

any sort -and if there were any problems in keeping the pouch b/c of

that.

Thank you to anyone who is able to share.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

Hi,I have a j-pouch in part due to the cancer risk as well as UC. So far I haven't needed surgery in the j-pouch, although I do seem to have chronic pouchitis. But so far no growths in the pouch. Your story is alarming as I've never heard of growths in the pouch before, and didn't think of it as a possibility. I'd hate to lose the j-pouch. I had an ileostomy for 3 months and that was no picnic.Marie

To: From: wymom94@...Date: Thu, 15 Jan 2009 05:33:41 +0000Subject: surgery on j-pouch, risk of losing pouch

I'm sorry to jump right into another inquiry, but curve balls are

coming our way and I would appreciate whatever information anyone

might have. For those who have or had a j-pouch, did any of you ever

require surgery inside the pouch -to remove growths of any sort?

Were you able to keep your pouch or was it necessary to remove it and

replace it with an ostomy? My husband was admitted from the ER into

the hospital today/night and may need surgery on his pouch. We've

been told he may lose it with the surgery (if he needs surgery).

He's already been seen for over a year now for problems with his

pouch (and this growth) by a GI surgeon and we knew this was a risk

earlier on --had been told recently, though, that the risk was now

minimal. My husband began bleeding last night and it hasn't stopped,

which is what brought us to the ER today. It's suspected that the

growth has partly torn from the pouch wall. (My husband is not the

one who has ibd -our son does, but my husband does have a pouch due

to colon cancer yrs ago and that is why I am seeking the experience

here of others with pouches). I promised my husband I would ask here

if anyone with a pouch has had surgery in it to remove a growth of

any sort -and if there were any problems in keeping the pouch b/c of

that.

Thank you to anyone who is able to share.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

In a J-pouch with PSC there are some known difficulties. The

biggest of course is that pouchitis is much more likely if a J-poucher also has

PSC. I have never heard of a growth in the pouch either, but I wish Meghan’s

husband the best of luck with that.

Rick

From:

[mailto: ] On Behalf

Of Marie Nilsson

Sent: Thursday, January 15, 2009 2:24 PM

To:

Subject: RE: surgery on j-pouch, risk of losing pouch

Hi,

I have a j-pouch in part due to the cancer risk as well as UC. So far I

haven't needed surgery in the j-pouch, although I do seem to have chronic

pouchitis. But so far no growths in the pouch. Your story is

alarming as I've never heard of growths in the pouch before, and didn't think

of it as a possibility. I'd hate to lose the j-pouch. I had an

ileostomy for 3 months and that was no picnic.

Marie

To:

From: wymom94@...

Date: Thu, 15 Jan 2009 05:33:41 +0000

Subject: surgery on j-pouch, risk of losing pouch

I'm sorry to jump right into

another inquiry, but curve balls are

coming our way and I would appreciate whatever information anyone

might have. For those who have or had a j-pouch, did any of you ever

require surgery inside the pouch -to remove growths of any sort?

Were you able to keep your pouch or was it necessary to remove it and

replace it with an ostomy? My husband was admitted from the ER into

the hospital today/night and may need surgery on his pouch. We've

been told he may lose it with the surgery (if he needs surgery).

He's already been seen for over a year now for problems with his

pouch (and this growth) by a GI surgeon and we knew this was a risk

earlier on --had been told recently, though, that the risk was now

minimal. My husband began bleeding last night and it hasn't stopped,

which is what brought us to the ER today. It's suspected that the

growth has partly torn from the pouch wall. (My husband is not the

one who has ibd -our son does, but my husband does have a pouch due

to colon cancer yrs ago and that is why I am seeking the experience

here of others with pouches). I promised my husband I would ask here

if anyone with a pouch has had surgery in it to remove a growth of

any sort -and if there were any problems in keeping the pouch b/c of

that.

Thank you to anyone who is able to share.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

In a J-pouch with PSC there are some known difficulties. The

biggest of course is that pouchitis is much more likely if a J-poucher also has

PSC. I have never heard of a growth in the pouch either, but I wish Meghan’s

husband the best of luck with that.

Rick

From:

[mailto: ] On Behalf

Of Marie Nilsson

Sent: Thursday, January 15, 2009 2:24 PM

To:

Subject: RE: surgery on j-pouch, risk of losing pouch

Hi,

I have a j-pouch in part due to the cancer risk as well as UC. So far I

haven't needed surgery in the j-pouch, although I do seem to have chronic

pouchitis. But so far no growths in the pouch. Your story is

alarming as I've never heard of growths in the pouch before, and didn't think

of it as a possibility. I'd hate to lose the j-pouch. I had an

ileostomy for 3 months and that was no picnic.

Marie

To:

From: wymom94@...

Date: Thu, 15 Jan 2009 05:33:41 +0000

Subject: surgery on j-pouch, risk of losing pouch

I'm sorry to jump right into

another inquiry, but curve balls are

coming our way and I would appreciate whatever information anyone

might have. For those who have or had a j-pouch, did any of you ever

require surgery inside the pouch -to remove growths of any sort?

Were you able to keep your pouch or was it necessary to remove it and

replace it with an ostomy? My husband was admitted from the ER into

the hospital today/night and may need surgery on his pouch. We've

been told he may lose it with the surgery (if he needs surgery).

He's already been seen for over a year now for problems with his

pouch (and this growth) by a GI surgeon and we knew this was a risk

earlier on --had been told recently, though, that the risk was now

minimal. My husband began bleeding last night and it hasn't stopped,

which is what brought us to the ER today. It's suspected that the

growth has partly torn from the pouch wall. (My husband is not the

one who has ibd -our son does, but my husband does have a pouch due

to colon cancer yrs ago and that is why I am seeking the experience

here of others with pouches). I promised my husband I would ask here

if anyone with a pouch has had surgery in it to remove a growth of

any sort -and if there were any problems in keeping the pouch b/c of

that.

Thank you to anyone who is able to share.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

In a J-pouch with PSC there are some known difficulties. The

biggest of course is that pouchitis is much more likely if a J-poucher also has

PSC. I have never heard of a growth in the pouch either, but I wish Meghan’s

husband the best of luck with that.

Rick

From:

[mailto: ] On Behalf

Of Marie Nilsson

Sent: Thursday, January 15, 2009 2:24 PM

To:

Subject: RE: surgery on j-pouch, risk of losing pouch

Hi,

I have a j-pouch in part due to the cancer risk as well as UC. So far I

haven't needed surgery in the j-pouch, although I do seem to have chronic

pouchitis. But so far no growths in the pouch. Your story is

alarming as I've never heard of growths in the pouch before, and didn't think

of it as a possibility. I'd hate to lose the j-pouch. I had an

ileostomy for 3 months and that was no picnic.

Marie

To:

From: wymom94@...

Date: Thu, 15 Jan 2009 05:33:41 +0000

Subject: surgery on j-pouch, risk of losing pouch

I'm sorry to jump right into

another inquiry, but curve balls are

coming our way and I would appreciate whatever information anyone

might have. For those who have or had a j-pouch, did any of you ever

require surgery inside the pouch -to remove growths of any sort?

Were you able to keep your pouch or was it necessary to remove it and

replace it with an ostomy? My husband was admitted from the ER into

the hospital today/night and may need surgery on his pouch. We've

been told he may lose it with the surgery (if he needs surgery).

He's already been seen for over a year now for problems with his

pouch (and this growth) by a GI surgeon and we knew this was a risk

earlier on --had been told recently, though, that the risk was now

minimal. My husband began bleeding last night and it hasn't stopped,

which is what brought us to the ER today. It's suspected that the

growth has partly torn from the pouch wall. (My husband is not the

one who has ibd -our son does, but my husband does have a pouch due

to colon cancer yrs ago and that is why I am seeking the experience

here of others with pouches). I promised my husband I would ask here

if anyone with a pouch has had surgery in it to remove a growth of

any sort -and if there were any problems in keeping the pouch b/c of

that.

Thank you to anyone who is able to share.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (and wife to Russ -genetic fap/cancer, j-pouch)

Windows Live™: Keep your life in sync. Check it out.

[Guest guest]

I have the jpouch, and got it due to chronic UC and

dysplasia. My surgery was over 9 years ago, and I had

already been dx with PSC. We had to do the surgery in

2 steps because of PSC or better yet, the fear of the

surgeon not wanting anything to happen to me, ie

excessive bleeding during a one step.

Up until now, I haven't had any problems and had gone

from 20 bathroom visits to 2-3 per day...but recently

that has skyrocketed, but I tend to blame that on my

poor oral hygiene due to rapidly occurring abscesses

in my mouth...which will be taken care of next

Thursday when I have all my teeth removed and get

those new flexible choppers!

Although I know alot of people who have the

ileostomies, that was the worst 3 months of my life

and it is going to take an awful lot for me to make

any decision to go back to it. Obviously I would

choose it over death, but it would still be a very

last resort decision for me.

Cindy Baudoux-Northrup

[Guest guest]

I have psc and uc, the uc is quite severe and psc is complicated. They

were talking about chemo/radiation/transplant and then decided to wait

because the FISH was negative on my ERCP. I have to go back in Feb for

another one (joy)! They told me a transplant would be safer if I had a

j-pouch. I did not know that there could be more complications with a j-

pouch if you have psc. Does anyone know where I could find info on

that. Thank you Marie for mentioning that. Good luck with the surgery

Meghan I will be sure to forward anything I find as I am diligently

researching!

[Guest guest]

I have psc and uc, the uc is quite severe and psc is complicated. They

were talking about chemo/radiation/transplant and then decided to wait

because the FISH was negative on my ERCP. I have to go back in Feb for

another one (joy)! They told me a transplant would be safer if I had a

j-pouch. I did not know that there could be more complications with a j-

pouch if you have psc. Does anyone know where I could find info on

that. Thank you Marie for mentioning that. Good luck with the surgery

Meghan I will be sure to forward anything I find as I am diligently

researching!

[Guest guest]

I have psc and uc, the uc is quite severe and psc is complicated. They

were talking about chemo/radiation/transplant and then decided to wait

because the FISH was negative on my ERCP. I have to go back in Feb for

another one (joy)! They told me a transplant would be safer if I had a

j-pouch. I did not know that there could be more complications with a j-

pouch if you have psc. Does anyone know where I could find info on

that. Thank you Marie for mentioning that. Good luck with the surgery

Meghan I will be sure to forward anything I find as I am diligently

researching!

[Guest guest]

>

>> Your story is alarming as I've never heard of growths in the pouch

before, and didn't think of it as a possibility. >

>

I'm sorry, Marie! I don't think you have to worry about the growths

for ibd-pouch. It's our son who has psc & ibd -my husband has a pouch

b/c he had colon cancer when he was 24. Growths are genetic for him -

and not usually a problem like this large one has been. --His growth

is not the source of his bleed after all. They can't find the source

and he's still bleeding (since Tues night) and will remain in the

hospital a few more days and might be transferred to San Francisco then

(we live 2hrs from SF). They believe it's mid-small intestine or the

uppermost portion of the lower small intestine. He does have pouchitis

again and some unexpected ulcers in his pouch as well as the growth,

but no bleeding from these. It's coming from above the pouch. He also

has a problem-area in his duodenum, but no bleeding from there

either. --I'm sorry I didn't specify in the post, only put husband/son

diseases in my siggy. I hope you have a problem-free pouch as much as

is possible and no more pouchitis troubles.

-Meghan, mom to 14yo Wyatt -psc, ibd, genetic fap, gerd, autoimmune

hives, disabled (wife to Russ -genetic fap, j-pouch)