Re: URQ Pain - description bile blockage pain?/ERCP

[Guest guest]

My URQ pain was more centrally located (just under the sternum) - usually

alleviated by a large intake of water (3-4 glasses). In 2000 I had an ERCP at a

Minneapolis hospital during a cholangitis episode. They were unsuccessful in

accessing my common bile duct.

In 2001 (another cholangitis episode), I was sent to Mayo Clinic (Rochester). I

commented that the Minneapolis hospital was unable to dilate my CBD. He

responded that they have every 'scope made, and many more they developed

themselves; he didn't think it would be a problem. They were able to dilate and

stent my common bile duct without incident.

The success of an ERCP is highly dependent on the skill of the endoscopist. At

Mayo, that's ALL this endoscopist does. I was his 20th of the day - at 2:00 PM.

I've been symptom-free since (it may be a coincidence). ERCP is still the gold

standard of diagnosis. MRCP is getting much better, but you will still need an

ERCP if therapy is needed. They are NOT risk-free. I developed pancreatitis 2

out of 3 ERCPs (not on the last one for stent removal).

Arne

56 - UC 1977 - PSC 2000

[Guest guest]

My URQ pain was more centrally located (just under the sternum) - usually

alleviated by a large intake of water (3-4 glasses). In 2000 I had an ERCP at a

Minneapolis hospital during a cholangitis episode. They were unsuccessful in

accessing my common bile duct.

In 2001 (another cholangitis episode), I was sent to Mayo Clinic (Rochester). I

commented that the Minneapolis hospital was unable to dilate my CBD. He

responded that they have every 'scope made, and many more they developed

themselves; he didn't think it would be a problem. They were able to dilate and

stent my common bile duct without incident.

The success of an ERCP is highly dependent on the skill of the endoscopist. At

Mayo, that's ALL this endoscopist does. I was his 20th of the day - at 2:00 PM.

I've been symptom-free since (it may be a coincidence). ERCP is still the gold

standard of diagnosis. MRCP is getting much better, but you will still need an

ERCP if therapy is needed. They are NOT risk-free. I developed pancreatitis 2

out of 3 ERCPs (not on the last one for stent removal).

Arne

56 - UC 1977 - PSC 2000

[Guest guest]

I am getting in a little late on this discussion, but here goes.

, I have had the same problem for almost 3 years, but I did have

my gallbladder out about 6 years ago. Actually that is what they

thought my pain problem was and after a couple of incidents after

Spicy Thai Food and a bucket of KFC fried chicken (I know, not good

for you) they did a cat scan specifically to see if bile was traveling

through my gall bladder. At this time it wasn't and was subsequently

scheduled for the surgery. That seemed to solve the problem for a while.

Then years later I did a routine blood test for life insurance and off

we went to the races after that. I was actually fine and had no idea

that I had PSC until repeated biopsies. I was asymptomatic.

Then I started having the ULQ pain. It has since spread to the URQ

(lucky me). Nobody else has pain on the left side and it puzzles

everyone, but I assure you it's there. Now it is predominately in the

URQ.

ERCP's certainly help me. I take it as long as I can stand it now. The

transplant team had me set up for every 6 months unless it got really

bad. The next one will be #5 and I am actually up to 7 months.

I actually switched from a St. hospital to a U of M hospital in

Minneapolis to actually the teacher of my original Hep. He said he

could get such good access to the common billary duct that he was able

to do it without a stent.

I have had problems on and off, but with revolving antibiotics it has

helped. I have felt pretty well although I have had bouts on and off

with the pain. Maybe it was the different doctor, but it helps.

Nothing like I used to have though. I get 180 capsules of Darvocets at

a time. I am very thankful to say I haven't had one in weeks although

I always carry an emergency one.

My family gets upset at me since I grin and bear it. ERCP's are not a

pleasant experience, but sometimes the lesser of two evils. I have had

it so bad that it drops me to my knees.

I know more are on the horizon, but until then enjoy it when you can.

But I am proof that even without the gallbladder, you can have the pain.

I wish you the best. Good luck!

in Minnesota

PSC 2006, Factor V Leiden

[Guest guest]

I am getting in a little late on this discussion, but here goes.

, I have had the same problem for almost 3 years, but I did have

my gallbladder out about 6 years ago. Actually that is what they

thought my pain problem was and after a couple of incidents after

Spicy Thai Food and a bucket of KFC fried chicken (I know, not good

for you) they did a cat scan specifically to see if bile was traveling

through my gall bladder. At this time it wasn't and was subsequently

scheduled for the surgery. That seemed to solve the problem for a while.

Then years later I did a routine blood test for life insurance and off

we went to the races after that. I was actually fine and had no idea

that I had PSC until repeated biopsies. I was asymptomatic.

Then I started having the ULQ pain. It has since spread to the URQ

(lucky me). Nobody else has pain on the left side and it puzzles

everyone, but I assure you it's there. Now it is predominately in the

URQ.

ERCP's certainly help me. I take it as long as I can stand it now. The

transplant team had me set up for every 6 months unless it got really

bad. The next one will be #5 and I am actually up to 7 months.

I actually switched from a St. hospital to a U of M hospital in

Minneapolis to actually the teacher of my original Hep. He said he

could get such good access to the common billary duct that he was able

to do it without a stent.

I have had problems on and off, but with revolving antibiotics it has

helped. I have felt pretty well although I have had bouts on and off

with the pain. Maybe it was the different doctor, but it helps.

Nothing like I used to have though. I get 180 capsules of Darvocets at

a time. I am very thankful to say I haven't had one in weeks although

I always carry an emergency one.

My family gets upset at me since I grin and bear it. ERCP's are not a

pleasant experience, but sometimes the lesser of two evils. I have had

it so bad that it drops me to my knees.

I know more are on the horizon, but until then enjoy it when you can.

But I am proof that even without the gallbladder, you can have the pain.

I wish you the best. Good luck!

in Minnesota

PSC 2006, Factor V Leiden

[Guest guest]

Hi ,

Thanks, for your help.

You are right that even without the gall bladder, the

pain might still be there. i have heard many patients

with this group, saying it. I had a HIDA Scan, last

Monday that proved that the high grade of pain is not

due to the gall bladder. My GI doctor was very much

thinking it is since a scan, few months ago, showed

that the GB has a filling rate of less than 45%. also,

the pain is usually triggered after meals, even with

the simple fat. Also when i have bowel irritation

[gas] and that has been unbelievable lately and no

meds that can help. So i was thinking that it does not

seem like a bile duct blockage, really. Although as

yourself, i do ERCP's, continually per my ERCP

doctor's way of manegement, i do keep pushing the

dates, forward. The one supposedly next week, i am

going to have it in April, as originally proposed but

back from February, actually. They do scare me and a

couple of times were miserable because of

Pancreatitis, but even though i still like my bile

duct, to be looked at every some months. I do worry.

In your e-mail, i read that a transplant team had you

have an ERCP every 6mo. Have you been evaluated for

one, and are you on the transplant list, now?

Again to my continous, terrible pain subject. I did

have an annual Colonoscopy, yesterday. And since the

gall bladder was ruled out, my doctor told me after

the test that the pain is 'functional'. His

explanation is that it is caused by injury,

inflammation or irritation of the nerve endings that

go into my gall bladder, bile ducts and colon. He

wants me to take a medication called Nortriptyline. I

did notice as i mentioned that the pain is very much

triggered by a high degree of irritation and i do have

IBS but i didn't know for sure. So i do hope that his

theory is correct.

I read that you do take Darvocet, and a lot of it! Is

that o.k.? Have you checked the side effects? Because

of course you know about the liver toxicity due to too

much, drugs. And sometimes, some meds affects the

kidneys and the Colon, too. I really hope that you

will stay out of pain and so you don't need the pain

killers. I do take Codine [30mg]. I don't like it at

all and i try to tolerate a lot but sometimes i just

cannot do without it. It also hase its negative,

effects.

Thanks for easing my tension. My good wishes to you.

Take care.

PSC/UC

--- Sny dlrepmn@...> wrote:

> I am getting in a little late on this discussion,

> but here goes.

>

> , I have had the same problem for almost 3

> years, but I did have

> my gallbladder out about 6 years ago. Actually that

> is what they

> thought my pain problem was and after a couple of

> incidents after

> Spicy Thai Food and a bucket of KFC fried chicken (I

> know, not good

> for you) they did a cat scan specifically to see if

> bile was traveling

> through my gall bladder. At this time it wasn't and

> was subsequently

> scheduled for the surgery. That seemed to solve the

> problem for a while.

>

> Then years later I did a routine blood test for life

> insurance and off

> we went to the races after that. I was actually fine

> and had no idea

> that I had PSC until repeated biopsies. I was

> asymptomatic.

>

> Then I started having the ULQ pain. It has since

> spread to the URQ

> (lucky me). Nobody else has pain on the left side

> and it puzzles

> everyone, but I assure you it's there. Now it is

> predominately in the

> URQ.

>

> ERCP's certainly help me. I take it as long as I can

> stand it now. The

> transplant team had me set up for every 6 months

> unless it got really

> bad. The next one will be #5 and I am actually up to

> 7 months.

>

> I actually switched from a St. hospital to a U

> of M hospital in

> Minneapolis to actually the teacher of my original

> Hep. He said he

> could get such good access to the common billary

> duct that he was able

> to do it without a stent.

>

> I have had problems on and off, but with revolving

> antibiotics it has

> helped. I have felt pretty well although I have had

> bouts on and off

> with the pain. Maybe it was the different doctor,

> but it helps.

>

> Nothing like I used to have though. I get 180

> capsules of Darvocets at

> a time. I am very thankful to say I haven't had one

> in weeks although

> I always carry an emergency one.

>

> My family gets upset at me since I grin and bear it.

> ERCP's are not a

> pleasant experience, but sometimes the lesser of two

> evils. I have had

> it so bad that it drops me to my knees.

>

> I know more are on the horizon, but until then enjoy

> it when you can.

>

> But I am proof that even without the gallbladder,

> you can have the pain.

>

> I wish you the best. Good luck!

>

> in Minnesota

>

> PSC 2006, Factor V Leiden

>

>

>

>

>

>

________________________________________________________________________________\

____

Never miss a thing. Make Yahoo your home page.

http://www.yahoo.com/r/hs

[Guest guest]

My hep will not do an ERCP without reason. That being said, my LFTs have been

normal since 2001 (and no jaundice, fevers, or other symptoms of cholangitis).

That IS a question I asked back then - whether periodic ERCPs were required. He

won't do one unless there's a chance he can help.

Arne

56 - UC 1977 - PSC 2000

Alive and well in Minnesota

---- Soloway jennifer@...> wrote:

=============

....But, I am wondering if some GIs are doing ERCPs routinely on all PSC

patients

without making any distinction...

[Guest guest]

,

I often see my surgeon but he told me that I can't go for risky ERCPs

anymore due to my operation, Whipple and Cholecyctectomy, but he didn't

say that confidently so I am going to call on him within 2 next months.

and one time I had an unsuccessful ERCP before my operation and never

had it again in spite of being too suffered.

It's not the treatment it's just a temporarily stenting. So Im

disagreed with frequently ERCP.

I check my inflammation by ultrasound and for unclear inflammation i go

for c.t scan and M.R.I.

Melvyn (20 yrs, PSC, Tehran, Dx 2005)

(while researching about psc)

[Guest guest]

,

I was in for my transplant evaluation back in 2006. I was sent there

from my hep. who is directly connected with the program as well. They

are all U of M (Minnesota M) facilities.

I am only an 8 out of 14 on the meld score so I am not listed at this

time. I am only stage 2 and I don't have any cirossis (sorry I still

can't spell these words) at this time, but some fatty liver.

I was a wreck. My neighbors said I looked like an oompa, loompa I was

so jaundiced. I would get colangitis attacks that would include a

fever. Of over 103 one time. That was fun.

My hep sent me to the transplant evaluation after what he saw from the

first ERCP.

I continually have a problem with sludge and stones and the pain

usually increases as time passes.

Every ERCP results with sludge and stones " it was a good thing we

scheduled it " " you needed it " . I have a deal with my doctor at the

transplant center who is also the medical director of the program. I

have been at this long enough that I know when I am sick and when I am

not. So if I call in at all, you know I am hurting and something needs

to be done. I also had a colonoscopy and he only found one polyp and

removed it. That was an interesting experience too.

For the first 3 ERCP's I had a stent installed. I recovered and was

fine for a while, then it would start all over. They are not pleasant

procedures. I am trying to get as much time out of them as possible,

but I know that there is a reason for me and it makes me feel better

and I am able to function again. I know the rational of why do it if

you can get along without it. For me at least I have no choice. I

don't like taking naps all the time and not being able to function or

even work. For me they have said " it's only a matter of time and you

will get sicker " . Until then I am going to live a full life and have

some fun.

I just completed a two tank dive in Grand Cayman on a cruise and had a

blast in every destination. Swam with the dolphins in 10-15 foot waves

with my daughter. You may as well try to have fun. You are no fun to

be around when you feel sorry for yourself, so my wife says anyway.

I was getting my blood tested every month, transplant meetings every 3

months. We have cut this back to blood tests when I feel bad enough to

come in and meetings every 6 months. The blood tests are always the

first thing they do anyway.

Maybe it was the new Hep, maybe it was that he is not a big fan of

stents. He says they get plugged quicker than going without if you can

do it. He said the duct didn't collapse.

I have felt the best I have in years. I still take high dose ursidol

and revolving antibiotics. It's $900.00 just to walk in the door at

the transplant center after insurance. I hate going there when you

feel fine. There are others that are a higher priority than me and I

don't feel the need to go just to say " Hi " .

Yes, the transplant doctor gave me the Darvocets. He said they had

mild impact compared to the other pain meds that are available. Trust

me after taking all those pills it is wonderful to not have to take

them for a while. It's no fun being stoned all the time, but what is

the alternative? There just isn't one. My nurse at the transplant

center said " don't be a dummy, he wouldn't have given them to you

unless they believed you needed them and it would help you feel

better. " I try to " gut " it out because sometimes it passes in a bit.

If I take one, you know I don't feel good because I hate the feeling.

The nurses at the hospital are all over my wife for me to take it easy

and not try to be superman after a procedure. All of us " frequent

fliers " know what to expect and for me " let me go home! "

I freaked out at first just like everybody else does. But thanks to

Arne, Barb, and the others that either have walked in your shoes

already or are directly involved as a caretaker and see it on the

other side, they calmed me down as time went along. Thank god I found

this site during a google search since none of the doctors mentioned

it. They should be giving out the PSC literature anywhere in the

country and most times they do.

Good Luck!

I hope you feel better!

in Minnesota

PSC 2006, Factor V Leiden