Re: Anybody had this procedure done?

[Guest guest]

I am a little confused about what they are proposing to do if it is

not an ERCP ? Did they find the stones with an MRCP ? My son has had

13 ERCPs for stones/sludge/strictures and has had multiple stents

placed and has also had huge cuts (sphincterotomies) done for bile flow.

What type of treatment is your hubby on for the cdiff ? I have had

chronic problems with recurring cdiff for years and until recently

haven't been effectively treated. If he isn't getting this already- I

HIGHLY recommend he gets vancocin HCL capsules 500 mg 4 times a day.

If this is his first round c diff he should be treated for at least 2

weeks, if this is possibly a recurring thing (that some believe is the

bacteria that causes PSC possibly...) then I think he should be on the

vancocin longer.

IV vancomycin will not help treat c diff and in my opinion flagyl is

not very effective either- well at least in my experience.

My son's PSC symptoms have been improved greatly by effective

antibiotic treatments with vancocin and IV gentamicin (he takes it

orally) The very frequent stones/sludge and obstructions have been

helped by the antibiotics.

The vancomycin (vancocin) studies on kids and now the new study for

adults is a promising new treatment option for PSC.

Of course I am not a doctor and don't play one on the internet- so

this is just my advice from my own experiences.

Lori

lucky mom blessed with triplets

www.caringbridge.org/visit/bradenwild

- In , " Bobbi " wrote:

>

> I don't know what it's called. I'm not able to be at the hospital

right now with for 2

> reasons-he has c diff and we got nearly a foot of snow last night.

Anyway, when the doctors

> saw him this morning they said that if he continues spiking fevers,

they will have to go into

> his liver and dig out some of the stones. They talked about doing an

ERCP but they spoke with

> the ERCP team who said there was no reason to do one. Apparently his

liver, as well as the

> bile ducts are full of stones. The ERCP team felt that given the

risks, it just wasn't worth it

> because they wouldn't be able to remove very many of the stones. He

is scared to death of

> having them go digging around in his liver and I can't say as I

blame him. It sounds horribly

> painful! Hopefully they'll be able to get him listed soon and he'll

get a new liver and that

> won't be necessary. Just wondering if anyone else has ever had this

done?

>

[Guest guest]

I have had several ERCP’s and three

of them were to see if they could get to the single stone in my bile duct that

had it totally clogged. My bile ducts were in really bad shape at that

time. They also wanted to be able to get a biopsy of the bile duct, but

because they had become so small, they were having difficulty doing that

also. They told me that the risk to me was worth it to get the

biopsy. This all happened less than a month before my transplant. I

am sure they wanted to rule out cancer. On the third try they managed to

get the biopsy, but the stone was too far up in the bile duct to be able to

reach it. I was spiking a fever at the time, but the antibiotics they had

me on helped keep my fevers under control. I was on Flagyl and Moxifloxacin.

I do know that they debated doing the ERCP’s

because of the risk of introducing yet more bacteria to the gut. The

doctors all talked about it and then came to me with their plan to see if I was

OK with it. My fever went down during the day and spiked at night for

almost a month prior to transplant. All that time my biliruben was

between 15 and 20 – pretty dangerous levels they told me.

As far as the pain, there is good news

there. ERCP’s are done under general anesthesia. Even

afterward I never had any pain. I did have some severe chills, but no other

after effects. My first one was in 1990 before they used general anesthesia

and I woke up in the middle of the procedure. Still no pain, the only bad

part was the gag reflex when they removed the tube.

I’ll keep you and your husband in

our prayers and hope that the transplant comes quickly. Do you know what

your husbands MELD is?

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of Bobbi

Sent: Wednesday, January 28, 2009

10:02 AM

To:

Subject: Anybody had

this procedure done?

I don't know what it's called. I'm not able to be at

the hospital right now with for 2

reasons-he has c diff and we got nearly a foot of snow last night. Anyway, when

the doctors

saw him this morning they said that if he continues spiking fevers, they will

have to go into

his liver and dig out some of the stones. They talked about doing an ERCP but

they spoke with

the ERCP team who said there was no reason to do one. Apparently his liver, as

well as the

bile ducts are full of stones. The ERCP team felt that given the risks, it just

wasn't worth it

because they wouldn't be able to remove very many of the stones. He is scared

to death of

having them go digging around in his liver and I can't say as I blame him. It

sounds horribly

painful! Hopefully they'll be able to get him listed soon and he'll get a new

liver and that

won't be necessary. Just wondering if anyone else has ever had this done?

[Guest guest]

I have had several ERCP’s and three

of them were to see if they could get to the single stone in my bile duct that

had it totally clogged. My bile ducts were in really bad shape at that

time. They also wanted to be able to get a biopsy of the bile duct, but

because they had become so small, they were having difficulty doing that

also. They told me that the risk to me was worth it to get the

biopsy. This all happened less than a month before my transplant. I

am sure they wanted to rule out cancer. On the third try they managed to

get the biopsy, but the stone was too far up in the bile duct to be able to

reach it. I was spiking a fever at the time, but the antibiotics they had

me on helped keep my fevers under control. I was on Flagyl and Moxifloxacin.

I do know that they debated doing the ERCP’s

because of the risk of introducing yet more bacteria to the gut. The

doctors all talked about it and then came to me with their plan to see if I was

OK with it. My fever went down during the day and spiked at night for

almost a month prior to transplant. All that time my biliruben was

between 15 and 20 – pretty dangerous levels they told me.

As far as the pain, there is good news

there. ERCP’s are done under general anesthesia. Even

afterward I never had any pain. I did have some severe chills, but no other

after effects. My first one was in 1990 before they used general anesthesia

and I woke up in the middle of the procedure. Still no pain, the only bad

part was the gag reflex when they removed the tube.

I’ll keep you and your husband in

our prayers and hope that the transplant comes quickly. Do you know what

your husbands MELD is?

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of Bobbi

Sent: Wednesday, January 28, 2009

10:02 AM

To:

Subject: Anybody had

this procedure done?

I don't know what it's called. I'm not able to be at

the hospital right now with for 2

reasons-he has c diff and we got nearly a foot of snow last night. Anyway, when

the doctors

saw him this morning they said that if he continues spiking fevers, they will

have to go into

his liver and dig out some of the stones. They talked about doing an ERCP but

they spoke with

the ERCP team who said there was no reason to do one. Apparently his liver, as

well as the

bile ducts are full of stones. The ERCP team felt that given the risks, it just

wasn't worth it

because they wouldn't be able to remove very many of the stones. He is scared

to death of

having them go digging around in his liver and I can't say as I blame him. It

sounds horribly

painful! Hopefully they'll be able to get him listed soon and he'll get a new

liver and that

won't be necessary. Just wondering if anyone else has ever had this done?

[Guest guest]

Do you know if the stones are deep in his liver (small ducts) or in the main bile ducts.

I have a similiar problem. My small ducts are full of stones and debris. (to be exact, there are sacks full of stones at the end of my bile ducts, some of the sacks are even wider than main ducts).

I went to a couple of doctors for a second opionion, after my main doctors wanted to put me on the transplant list. And none of them wanted to remove the stones with ERCP. They all feared that the infection risk is too high, in their opionion this procedure would do more harm than good. I my case they would have to do multiple ERCPs, because of the huge amount of stones.

They all thought that the transplant is only long term solution.

Just want to let u know.

All the best to you and your familiy

Hardy

PSC and UC (1993)

Btw. this is my first mail to the group, I regularly read the mails , but I have never posted one.

I am very happy that I found this group.

Sorry if misspelled something, english is not my native language.

To: Sent: Wednesday, January 28, 2009 10:01:57 AMSubject: Anybody had this procedure done?------------------------------------

[Guest guest]

Do you know if the stones are deep in his liver (small ducts) or in the main bile ducts.

I have a similiar problem. My small ducts are full of stones and debris. (to be exact, there are sacks full of stones at the end of my bile ducts, some of the sacks are even wider than main ducts).

I went to a couple of doctors for a second opionion, after my main doctors wanted to put me on the transplant list. And none of them wanted to remove the stones with ERCP. They all feared that the infection risk is too high, in their opionion this procedure would do more harm than good. I my case they would have to do multiple ERCPs, because of the huge amount of stones.

They all thought that the transplant is only long term solution.

Just want to let u know.

All the best to you and your familiy

Hardy

PSC and UC (1993)

Btw. this is my first mail to the group, I regularly read the mails , but I have never posted one.

I am very happy that I found this group.

Sorry if misspelled something, english is not my native language.

To: Sent: Wednesday, January 28, 2009 10:01:57 AMSubject: Anybody had this procedure done?------------------------------------

[Guest guest]

Do you know if the stones are deep in his liver (small ducts) or in the main bile ducts.

I have a similiar problem. My small ducts are full of stones and debris. (to be exact, there are sacks full of stones at the end of my bile ducts, some of the sacks are even wider than main ducts).

I went to a couple of doctors for a second opionion, after my main doctors wanted to put me on the transplant list. And none of them wanted to remove the stones with ERCP. They all feared that the infection risk is too high, in their opionion this procedure would do more harm than good. I my case they would have to do multiple ERCPs, because of the huge amount of stones.

They all thought that the transplant is only long term solution.

Just want to let u know.

All the best to you and your familiy

Hardy

PSC and UC (1993)

Btw. this is my first mail to the group, I regularly read the mails , but I have never posted one.

I am very happy that I found this group.

Sorry if misspelled something, english is not my native language.

To: Sent: Wednesday, January 28, 2009 10:01:57 AMSubject: Anybody had this procedure done?------------------------------------

[Guest guest]

Honestly I don't know what the procedure is that they are proposing. I haven't

been there

when the drs have been in and god love my dh, he's not so good with the details.

LOL What

he told me is that they would have to go into his liver and dig the stones out.

Sounds painful!

And it is NOT an ERCP. The ERCP team refused to do one on him because he is so

full of

stones.

I don't know what his current MELD score is. When he was in the hospital 2 weeks

ago for the

bile duct infection, it ranged between 18-23. His bilirubin the day he was

admitted was 14.

He was the color of a Simpson (as in Bart, Homer LOL). As of yesterday his

bilirubin was only

5.3 which is the lowest it's been in a while.

They've had him on IV Vancoyacin before they knew about the cdiff. They just

started him on

Flagyl a couple days ago. The last culture he had done was clear.

We are both SO ready for him to be listed. He's on stand by list for another

pericentesis but

with all the snow we've gotten, they're short staffed so they weren't sure if

they'd get to him

or not. As much as he hates having it done, he'd feel so much better if they did

it. They had

given him Oxycodone yesterday because his side is hurting so bad with all of the

swelling

and fluid retention. I know if he asks for pain meds, he must be hurting because

he NEVER

asks for pain meds.

[Guest guest]

I had stones removed via ERCP so don't quite understand why they aren't doing that procedure but could he be talking about an endoscopic ultrasound? I'm so sorry that you aren't able to be with right now but know I'm praying for you as you try to help him long distance.

blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 29 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandson , granddaughter due 3/09 and 1 golden retriever

[Guest guest]

I had stones removed via ERCP so don't quite understand why they aren't doing that procedure but could he be talking about an endoscopic ultrasound? I'm so sorry that you aren't able to be with right now but know I'm praying for you as you try to help him long distance.

blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 29 years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandson , granddaughter due 3/09 and 1 golden retriever

[Guest guest]

My son had MULTIPLE ERCP's - I believe 16 of them.

He had a gall bladder FULL of stones, along with many many stones in a few of his bile ducts. did develop ascending cholangitis after a couple of them. The rest of the time, he went in to HAVE the ERCP because he'd developed cholangitis. However, within a couple of days after, he always felt so much better.

The reason had to have so many done, was because they would go in, remove what stones they could reach, place stents in his bile ducts, and be done. A few weeks later, they'd go in, pull out the ones that had moved down, change out the stents again, and on and on. (First ERCP the removed all the ones that were in his gall bladder.)

In 's case, he was sick and symptomatic the entire time, and all this did was keep his LFT's down low enough to keep him from getting a liver for longer, as opposed to improving his quality of life. That being the case, I'd have preferred they'd have left it alone, and got him a liver faster.

BUT, if the person isn't terribly symptomatic, other than because of the stones, and removing them will make them feel better, AND prolong the time until transplant, then I'd see it as a good thing.

Let us know if you have questions about the procedure itself, what it involves, etc. MANY MANY here have had it done, or their loved ones have.

Ami - Migraines, FMS

mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox

mom to Emma - 14 yrs - Migraines

stepmom to - 15 yrs - ADHD, ODD

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

Subject: Anybody had this procedure done?To: Date: Wednesday, January 28, 2009, 10:01 AM

I don't know what it's called. I'm not able to be at the hospital right now with for 2 reasons-he has c diff and we got nearly a foot of snow last night. Anyway, when the doctors saw him this morning they said that if he continues spiking fevers, they will have to go into his liver and dig out some of the stones. They talked about doing an ERCP but they spoke with the ERCP team who said there was no reason to do one. Apparently his liver, as well as the bile ducts are full of stones. The ERCP team felt that given the risks, it just wasn't worth it because they wouldn't be able to remove very many of the stones. He is scared to death of having them go digging around in his liver and I can't say as I blame him. It sounds horribly painful! Hopefully they'll be able to get him listed soon and he'll get a new liver and that won't be necessary. Just wondering if anyone else has ever had this

done?

[Guest guest]

My son had MULTIPLE ERCP's - I believe 16 of them.

He had a gall bladder FULL of stones, along with many many stones in a few of his bile ducts. did develop ascending cholangitis after a couple of them. The rest of the time, he went in to HAVE the ERCP because he'd developed cholangitis. However, within a couple of days after, he always felt so much better.

The reason had to have so many done, was because they would go in, remove what stones they could reach, place stents in his bile ducts, and be done. A few weeks later, they'd go in, pull out the ones that had moved down, change out the stents again, and on and on. (First ERCP the removed all the ones that were in his gall bladder.)

In 's case, he was sick and symptomatic the entire time, and all this did was keep his LFT's down low enough to keep him from getting a liver for longer, as opposed to improving his quality of life. That being the case, I'd have preferred they'd have left it alone, and got him a liver faster.

BUT, if the person isn't terribly symptomatic, other than because of the stones, and removing them will make them feel better, AND prolong the time until transplant, then I'd see it as a good thing.

Let us know if you have questions about the procedure itself, what it involves, etc. MANY MANY here have had it done, or their loved ones have.

Ami - Migraines, FMS

mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox

mom to Emma - 14 yrs - Migraines

stepmom to - 15 yrs - ADHD, ODD

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

Subject: Anybody had this procedure done?To: Date: Wednesday, January 28, 2009, 10:01 AM

I don't know what it's called. I'm not able to be at the hospital right now with for 2 reasons-he has c diff and we got nearly a foot of snow last night. Anyway, when the doctors saw him this morning they said that if he continues spiking fevers, they will have to go into his liver and dig out some of the stones. They talked about doing an ERCP but they spoke with the ERCP team who said there was no reason to do one. Apparently his liver, as well as the bile ducts are full of stones. The ERCP team felt that given the risks, it just wasn't worth it because they wouldn't be able to remove very many of the stones. He is scared to death of having them go digging around in his liver and I can't say as I blame him. It sounds horribly painful! Hopefully they'll be able to get him listed soon and he'll get a new liver and that won't be necessary. Just wondering if anyone else has ever had this

done?

[Guest guest]

My son had MULTIPLE ERCP's - I believe 16 of them.

He had a gall bladder FULL of stones, along with many many stones in a few of his bile ducts. did develop ascending cholangitis after a couple of them. The rest of the time, he went in to HAVE the ERCP because he'd developed cholangitis. However, within a couple of days after, he always felt so much better.

The reason had to have so many done, was because they would go in, remove what stones they could reach, place stents in his bile ducts, and be done. A few weeks later, they'd go in, pull out the ones that had moved down, change out the stents again, and on and on. (First ERCP the removed all the ones that were in his gall bladder.)

In 's case, he was sick and symptomatic the entire time, and all this did was keep his LFT's down low enough to keep him from getting a liver for longer, as opposed to improving his quality of life. That being the case, I'd have preferred they'd have left it alone, and got him a liver faster.

BUT, if the person isn't terribly symptomatic, other than because of the stones, and removing them will make them feel better, AND prolong the time until transplant, then I'd see it as a good thing.

Let us know if you have questions about the procedure itself, what it involves, etc. MANY MANY here have had it done, or their loved ones have.

Ami - Migraines, FMS

mom to - 10 yrs - Double Lung Tx 2/26/2006, PSC - Tx 7/16/2007, Diabetes, Hypothyroid, GERD, ADHD, Osteopenia http://caringbridge.org/visit/seanfox

mom to Emma - 14 yrs - Migraines

stepmom to - 15 yrs - ADHD, ODD

~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~

Subject: Anybody had this procedure done?To: Date: Wednesday, January 28, 2009, 10:01 AM

I don't know what it's called. I'm not able to be at the hospital right now with for 2 reasons-he has c diff and we got nearly a foot of snow last night. Anyway, when the doctors saw him this morning they said that if he continues spiking fevers, they will have to go into his liver and dig out some of the stones. They talked about doing an ERCP but they spoke with the ERCP team who said there was no reason to do one. Apparently his liver, as well as the bile ducts are full of stones. The ERCP team felt that given the risks, it just wasn't worth it because they wouldn't be able to remove very many of the stones. He is scared to death of having them go digging around in his liver and I can't say as I blame him. It sounds horribly painful! Hopefully they'll be able to get him listed soon and he'll get a new liver and that won't be necessary. Just wondering if anyone else has ever had this

done?

[Guest guest]

I don't know where the stones are. What the doctors keep saying is that his

liver is FULL of

stones and that doing an ERCP would be pointless because there are so many. I

think the

bottom line is, he needs to be listed NOW!

[Guest guest]

I don't know where the stones are. What the doctors keep saying is that his

liver is FULL of

stones and that doing an ERCP would be pointless because there are so many. I

think the

bottom line is, he needs to be listed NOW!

[Guest guest]

I don't know where the stones are. What the doctors keep saying is that his

liver is FULL of

stones and that doing an ERCP would be pointless because there are so many. I

think the

bottom line is, he needs to be listed NOW!

[Guest guest]

He has had stones removed via ERCP in the past too but from what they have said,

he now

has SO many that the risks of doing an ERCP are not worth removing 1 or 2

stones. He is at

the hospital where his transplant will eventually happen so these people KNOW

what they're

doing. The ERCP team refused to do one on him because they said there is just no

reason to

do one at this point. He just needs a new liver. Period!

I just got an email from him and they've taken him off of the Vancomyacin and

started him on

another IV antibiotic. They did another blood culture this morning as well. Poor

guy has had

about every bodily fluid cultured imaginable! LOL

He did say that they may hold off on the pericentesis because the fluid is now

moving south

into his legs as well as his " manly parts. " LOL One of the doctors told him that

this is normal.

When there's not enough fluid in your blood stream, it hangs out in the abdomen.

Once your

body sort of picks up and starts doing its job again, gravity will drag it down.

They gave him

some Lasix to help with that. Poor guy-he's so miserable. I know some of you

have been

there, and unfortunately, many more will. He's a pretty small person-29/30 inch

waist

(makes me wanna puke) and he can't fasten any of his pants right now because his

liver &

spleen are so swollen and he has so much excess fluid. I just want him to be all

better! I want

them to get this work up process over with and get him on the waiting list!

[Guest guest]

He has had stones removed via ERCP in the past too but from what they have said,

he now

has SO many that the risks of doing an ERCP are not worth removing 1 or 2

stones. He is at

the hospital where his transplant will eventually happen so these people KNOW

what they're

doing. The ERCP team refused to do one on him because they said there is just no

reason to

do one at this point. He just needs a new liver. Period!

I just got an email from him and they've taken him off of the Vancomyacin and

started him on

another IV antibiotic. They did another blood culture this morning as well. Poor

guy has had

about every bodily fluid cultured imaginable! LOL

He did say that they may hold off on the pericentesis because the fluid is now

moving south

into his legs as well as his " manly parts. " LOL One of the doctors told him that

this is normal.

When there's not enough fluid in your blood stream, it hangs out in the abdomen.

Once your

body sort of picks up and starts doing its job again, gravity will drag it down.

They gave him

some Lasix to help with that. Poor guy-he's so miserable. I know some of you

have been

there, and unfortunately, many more will. He's a pretty small person-29/30 inch

waist

(makes me wanna puke) and he can't fasten any of his pants right now because his

liver &

spleen are so swollen and he has so much excess fluid. I just want him to be all

better! I want

them to get this work up process over with and get him on the waiting list!

[Guest guest]

He has had stones removed via ERCP in the past too but from what they have said,

he now

has SO many that the risks of doing an ERCP are not worth removing 1 or 2

stones. He is at

the hospital where his transplant will eventually happen so these people KNOW

what they're

doing. The ERCP team refused to do one on him because they said there is just no

reason to

do one at this point. He just needs a new liver. Period!

I just got an email from him and they've taken him off of the Vancomyacin and

started him on

another IV antibiotic. They did another blood culture this morning as well. Poor

guy has had

about every bodily fluid cultured imaginable! LOL

He did say that they may hold off on the pericentesis because the fluid is now

moving south

into his legs as well as his " manly parts. " LOL One of the doctors told him that

this is normal.

When there's not enough fluid in your blood stream, it hangs out in the abdomen.

Once your

body sort of picks up and starts doing its job again, gravity will drag it down.

They gave him

some Lasix to help with that. Poor guy-he's so miserable. I know some of you

have been

there, and unfortunately, many more will. He's a pretty small person-29/30 inch

waist

(makes me wanna puke) and he can't fasten any of his pants right now because his

liver &

spleen are so swollen and he has so much excess fluid. I just want him to be all

better! I want

them to get this work up process over with and get him on the waiting list!