Re:Multiple ERCP's??

[Guest guest]

Beth, Just out of curiosity, do you still have your gallbladder? I know that one of the reasons Chaim's hep. and GI decided to perform a cholecystectomy (and this is my basic understanding of it) was with the idea in mind that doing so would improve his quality of life-in the short term- i.e. less chance for stone and sludge build-up and therefore less chance that multiple ERCP's would need to be done. Of course this is such an individual disease, but this path seems/ ed to be working for Chaim. Ellen (wife of Chaim, PSC 2002, cholecystectomy 2006)

[Guest guest]

I have been getting ERCP's every 6 months and this was supposed to be

my 6th in August. I made the point to the Doc that since the last two

ERCP's didn't turn up any sludge or stones could we just roll the dice

for a while? He made me wait until they received my blood results, but

let me go without it. I am having ULQ pain from time to time, but

other than that I feel fine.

Don't get in a rut and just go along with the every so often plan if

your situation doesn't require it. It will cut down the medical bills

and the ERCP is less than pleasant. So until anything changes in my

bloodwork, I am rolling the dice. Of course if I start feeling bad I

will go in. They wanted to give me ERCP #6 the next morning after #5

since we went to the ER with pain. A transplant doc was on call that

night and I was there until 1:00 AM, but we talked some reason into

them when the blood work came in.

My pain is more frequent, the writing is on the wall, but I want to

put it off as long as possible (within reason of course).

in Minnesota

PSC 2006

[Guest guest]

I have been getting ERCP's every 6 months and this was supposed to be

my 6th in August. I made the point to the Doc that since the last two

ERCP's didn't turn up any sludge or stones could we just roll the dice

for a while? He made me wait until they received my blood results, but

let me go without it. I am having ULQ pain from time to time, but

other than that I feel fine.

Don't get in a rut and just go along with the every so often plan if

your situation doesn't require it. It will cut down the medical bills

and the ERCP is less than pleasant. So until anything changes in my

bloodwork, I am rolling the dice. Of course if I start feeling bad I

will go in. They wanted to give me ERCP #6 the next morning after #5

since we went to the ER with pain. A transplant doc was on call that

night and I was there until 1:00 AM, but we talked some reason into

them when the blood work came in.

My pain is more frequent, the writing is on the wall, but I want to

put it off as long as possible (within reason of course).

in Minnesota

PSC 2006

[Guest guest]

I have been getting ERCP's every 6 months and this was supposed to be

my 6th in August. I made the point to the Doc that since the last two

ERCP's didn't turn up any sludge or stones could we just roll the dice

for a while? He made me wait until they received my blood results, but

let me go without it. I am having ULQ pain from time to time, but

other than that I feel fine.

Don't get in a rut and just go along with the every so often plan if

your situation doesn't require it. It will cut down the medical bills

and the ERCP is less than pleasant. So until anything changes in my

bloodwork, I am rolling the dice. Of course if I start feeling bad I

will go in. They wanted to give me ERCP #6 the next morning after #5

since we went to the ER with pain. A transplant doc was on call that

night and I was there until 1:00 AM, but we talked some reason into

them when the blood work came in.

My pain is more frequent, the writing is on the wall, but I want to

put it off as long as possible (within reason of course).

in Minnesota

PSC 2006

[Guest guest]

Ellen,

I actually had my gallbladder removed in 1991 so for me it has not

been an issue. The thing for me is that when they removed my

gallbladder it was because it was not working properly and was full

of sludge, which is what I keep getting now.

I trust my GI, and want to try to stop the cholangitis attacks, so if

it takes ERCPs every 6 months for a couple of years I am fine with

it. plus if the ERCPs can keep me going without attacks while I am in

nursing school I am all for it. Nursing school will be tough enough

at 51 without having attacks on top of it. Plus I now keep Cipro in

case I feel an attack coming on

thank you for your response,

Beth B

>

> Beth,

>

> Just out of curiosity, do you still have your gallbladder? I know

that one of the reasons Chaim's hep. and GI decided to perform a

cholecystectomy (and this is my basic understanding of it) was with

the idea in mind that doing so would improve his quality of life-in

the short term- i.e. less chance for stone and sludge build-up and

therefore less chance that multiple ERCP's would need to be done.

>

> Of course this is such an individual disease, but this path

seems/ ed to be working for Chaim.

>

> Ellen

>

>

> (wife of Chaim, PSC 2002, cholecystectomy 2006)

>

[Guest guest]

Ellen,

I actually had my gallbladder removed in 1991 so for me it has not

been an issue. The thing for me is that when they removed my

gallbladder it was because it was not working properly and was full

of sludge, which is what I keep getting now.

I trust my GI, and want to try to stop the cholangitis attacks, so if

it takes ERCPs every 6 months for a couple of years I am fine with

it. plus if the ERCPs can keep me going without attacks while I am in

nursing school I am all for it. Nursing school will be tough enough

at 51 without having attacks on top of it. Plus I now keep Cipro in

case I feel an attack coming on

thank you for your response,

Beth B

>

> Beth,

>

> Just out of curiosity, do you still have your gallbladder? I know

that one of the reasons Chaim's hep. and GI decided to perform a

cholecystectomy (and this is my basic understanding of it) was with

the idea in mind that doing so would improve his quality of life-in

the short term- i.e. less chance for stone and sludge build-up and

therefore less chance that multiple ERCP's would need to be done.

>

> Of course this is such an individual disease, but this path

seems/ ed to be working for Chaim.

>

> Ellen

>

>

> (wife of Chaim, PSC 2002, cholecystectomy 2006)

>

[Guest guest]

,

Upper Left Quadrant pain? Posts from members usually mention URQ pain, The right side is the side the liver is on. Any theories why gets his pain on the left?

Ian (52) PSC 89

I have been getting ERCP's every 6 months and this was supposed to be my 6th in August. I made the point to the Doc that since the last two ERCP's didn't turn up any sludge or stones could we just roll the dice

for a while? He made me wait until they received my blood results, but let me go without it. I am having ULQ pain from time to time, but other than that I feel fine.Don't get in a rut and just go along with the every so often plan if

your situation doesn't require it. It will cut down the medical bills and the ERCP is less than pleasant. So until anything changes in my bloodwork, I am rolling the dice. Of course if I start feeling bad I

will go in. They wanted to give me ERCP #6 the next morning after #5 since we went to the ER with pain. A transplant doc was on call that night and I was there until 1:00 AM, but we talked some reason into them when the blood work came in.

My pain is more frequent, the writing is on the wall, but I want to put it off as long as possible (within reason of course). in MinnesotaPSC 2006 -- Ian Cribb P.Eng.

[Guest guest]

Pain can refer to the other side ....maybe that's what is happening......Pam B

To: Sent: Wednesday, November 19, 2008 3:31:07 PMSubject: Re: Re:Multiple ERCP's??

Ian (52) PSC 89

On 11/19/08, Sny <dlrepmn (AT) yahoo (DOT) com> wrote:PSC 2006-- Ian Cribb P.Eng.

[Guest guest]

I do get URQ pain, usually and that does radiate into my upper rt shoulder [beneath the blade], and into my back, rt side. But when the pain rises and i mean it becomes intense and sometimes, excruciating, then it will also radiates into my upper lt shoulder, lt back and believe me, to the chest center, my arms and even into my head! Real, real, bad. But i don't think that it originates at the left quadrant. By the way i have been on a prescribed pain med, daily. I felt better for about a month time, but that effect did not continue, and so when the pain is very high then i have to take OTC pain killers, too. My GI told me that he will iincrease the dose to see if that helps. My pain tend to vary linearly, with the degree of bowel irritation. And this is i guess the theory of the pressured liver versus the nerves of the membranes around it, as one member, described it. It is also my doctor's theory. I believe that as

long as the pain is tolerated without meds or with the OTC pain killers, it is fine. But mine do worry me. I can tell when it is an obstruction or infection, because one or more symptoms like nuasea, chills, fever and vomiting, will be present. My endoscopist want manage my billiary tree by doing an ERCP, every couple of months, inorder to try and keep some parts of it open, but i usually do try to elongate the period into 4 or 6 months.

UC/PSC

I have been getting ERCP's every 6 months and this was supposed to be my 6th in August. I made the point to the Doc that since the last two ERCP's didn't turn up any sludge or stones could we just roll the dice for a while? He made me wait until they received my blood results, but let me go without it. I am having ULQ pain from time to time, but other than that I feel fine.Don't get in a rut and just go along with the every so often plan if your situation doesn't require it. It will cut down the medical bills and the ERCP is less than pleasant. So until anything changes in my bloodwork, I am rolling the dice. Of course if I start feeling bad I will go in. They wanted to give me ERCP #6 the next morning after #5 since we went to the ER with pain. A transplant doc was on call that night and I was there until 1:00 AM, but we talked some reason into them when the blood work came in.My pain

is more frequent, the writing is on the wall, but I want to put it off as long as possible (within reason of course). in MinnesotaPSC 2006-- Ian Cribb P.Eng.