Re: What was your pre-diagnosis condition?

[Guest guest]

Hi Adam,

Just saw this post today and I find it fascinating - the study and

that you are asking us how we fit in. It will be interesting to see

how we skew the data!

As for me, I fall between the moderate and high probabilities: I

had high liver enzyme levels (10 to 15x normal - three different

times), one documented case of acute pancreatitis (maybe one

undocumented case); but no dilated common bile duct and no

history of stone migration however did have my gallbladder

removed so I am not sure how that fits into the system.

My diagnosis of chronic pancreatitis did not come about until

after my second ERCP (three years into the illness). Until then

the doctors were working under the assumption of chronic pain

due to surgical scarring, then surgically induced IBS (of course),

then gallbladder disease and then SOD until the final diagnosis

of symptomatic pancreas divisum explained everything (at least

to me). So the surgical scarring was addressed by " just give it

time " , the IBS by ruling out other inflammatory intestinal

diseases then being told " learn to live with it, there really isn't

anything wrong with you " , the gallbladder disease with the lap

cholecystectomy, the SOD with the sphincterotomy and the

pancreas divisum with stents and sphincterotomy. This, in my

impression, is a fairly common approach to ending up with the

chronic pancreatitis label: " Try your hardest and darndest to find

something else wrong, even if you must convince the patient that

it is all in her head " because no one wants to deal with a CP

patient.

Can you let us know what you find out? That is, was most of us

that responded in a higher or lower category of suspicion....I find

this pretty interesting.

Laurie

PS - by the way, if you do a google search for MRCP then a

search within the results using CCK you can get info about the

MRCP-CCK test that I mentioned at one time. Otherwise, i can

see if I find anything in our electronic library that I can forward to

you, if you are interested in it. The one thing that I have learned

about CP and the pitfalls of diagnosing it is that most doctors are

very reluctant to even consider it so do not be discouraged if you

run into resistance in your requests......but if you are convinced

that you may have something worth investigating, keep on it.

[Guest guest]

Adam,

I missed your original post and question so I may not be giving you the info you

wanted. I'll try my best to give the short version of my story.

May 1998 - ultrasound showed stones and sludge in my gallbladder and hida scan

showed my gallbladder only functioned at 13% of normal. gallbladder was removed

June 1, 1998 and two days later I felt better than I had in a month. Prior to

the tests showing problems with my gallbladder, I had problems with nausea and

bloating off and on for about 3-5 years. I also had episodes of excruiating

pain under my right rib. The pain never lasted more than 20 minutes and I just

figured it was my gallbladder.

About six months after my gallbladder was removed I started back having the pain

under my right rib. It would come from nowhere, hurt so bad breathing was hard,

and then totally go away within 20 minutes. Gallbladder was gone, so I assumed

it was just a bad gas pain. I didn't have the pain often. Maybe 3-4 times in a

year.

January 2000 - had my first 'documented' attack of acute pancreatitis. feeling

fine one minute waiting for a pizza to be delivered, next minute having the most

horrendous pain ever. It was in the same area that I'd had the attacks before -

under the right rib. This time the pain did not stop and within minutes I was

throwing up. A trip to the ER and labs and the next thing I knew I was admitted

with a diagnosis of acute panc. Prior to this, I really had no clue what

pancreatitis was! I was discharged 4 days later, still in pain, and just told

to take antacids and eat a bland diet.

Feb 2000 - went to a GI doc and had my first ERCP - showed bile not flowing well

and sludge in the common bile duct. The doc did a sphincterotomy and pronounced

me cured.

Aug 2000 - went to a second GI when the first insisted I was fine - pain,

nausea, and vomiting was just from stress! By this time I'd had so many

episodes of pain, nausea, and vomiting, I'd lost count. My enzymes were not

elevated with any attacks other than the first one. Second GI did another ERCP

- found bile was still not flowing as well as it should, so she did another

sphincterotomy and again pronounced me cured. When the pain, nausea, and

vomiting continued, she said it was IBS and stress.

Nov 2000 - went to the third GI. He did a third ERCP. Said my pancreas was

fine but my stomach wall was terribly inflamed due to bile reflux gastritis.

Bile refluxing back into the stomach - put me on carafate, reglan, prilosec, and

it seems like one other medication - things settled down in March 2001 - to the

point that I actually turned down my disability retirement that had just been

approved. I still had that 'naggy' sort of pain under my right rib, but it was

tolerable.

Oct 2001 - I had an episode of the familar pain that lasted several hours. I

didn't go to the ER because we were out of town with friends. I assumed that it

was just the bile reflux gastritis getting worse. The GI had told me that the

only 'cure' for gastric bile reflux was a gastric bypass. Well, it ends up that

a gastric bypass would not only cure the gastric bile reflux and also allow me

to lose the excess 100 lbs I'd gained over the years.

Dec 2001 - I had the roux-en-y gastric bypass. It did totally cure the gastric

bile reflux and I was able to stop all stomach meds. My new tiny stomach has no

inflammation. The bile cannot 'reflux' back into my new tiny stomach because

the bottom part of my stomach is now closed off. The gastric bypass was the

best decision I ever made. When I had it, I had a lot of weight related health

problems. Losing the weight took care of those problems, but it didn't get rid

of the problems with my pancreas.

Apr 2002 - the episodes of pain were becoming more frequent. it was the same

pain as in Jan 2000, when we knew it was acute panc. My GI did an MRCP and an

endoscopy. Found no reason for my episodes of pain and nausea, but insisted my

pancreas was perfectly healthy and I'd never have another attack of acute panc.

July 2002 - never lasted only 3 months! I was in Virginia on a business trip

and during a meeting the pain hit. I had a co-worker take me to the ER and it

was acute panc. My lipase was almost 2000. I was admitted to the hospital on a

Tuesday, discharged on Friday, flew home on Monday (with the help of my hubby

who insisted on flying to VA). I was back in the hospital at home with an even

worse attack on Thursday. That was the end of my career and really my life as I

had known it. I never worked a full week from July 2002 to March 2003 when my

disability retirement became effective. From Jul 02 to Dec 02, I had so many

attacks that going a week without one seemed like a miracle. My liver enzymes

were 'all over the place' during this time. They ranged from near normal a time

or two to as high as 25 times the normal limit. My amylase and lipase were

elevated with some attacks, but some of the worst attacks (as far as pain and

vomiting) were with totally normal amylase. My GI doc kept insisting I didn't

have cp - I had 'recurring acute panc' and that it was being caused by

adhesions. My internal med doc began saying I needed a liver biopsy in Aug 02,

but the GI insisted that my liver was fine. He kept saying I just needed

surgery to remove the adhesions blocking the flow of bile and all would be fine.

My pancreas was perfectly healthy as was my liver - according to him. He

referred me to a surgeon and I had surgery in Dec 2002. The surgeon said he

didn't believe adhesions could cause the level of problems I was having and they

sure wouldn't make my liver enzymes elevate to the level they were elevating.

However, I did have a very large incisional hernia where my left ovary had been

removed in Feb 2001. He said the hernia should have been repaired months ago.

All the other doctors kept saying I could have it repaired when I had surgery to

remove the adhesions around the bile duct/pancreas that my GI was so sure I had,

but none of the surgeons were willing to 'mess around' in the area of the

pancreas or bile duct. Finally, the surgeon my GI sent me to agreed to 'take a

look' in the area of the pancreas and bile duct when he did the surgery to

repair the hernia. He specialized in hepatobiliary surgery so he felt confident

to remove adhesions, if he found any. In Oct 2002, I began having problems with

my blood sugar. They couldn't blame it on my weight, because by this time, I

was no longer overweight at all. Still, my GI insisted it wasn't my pancreas.

During the time of all these attacks, I was seen by 3 surgeons (including the

one that did the hernia repair and looked for adhesions). All three of these

surgeons insisted that I had cp and the GI was wrong. Well, I had the hernia

repair, which ended up being an incisional hernia and a small inguinal hernia,

in Dec 2002. The surgeons found no adhesions at all in the area of the

pancreas/bile duct. He again insisted I had cp.

Dec 27, 2002 - the GI finally decided to do a liver biopsy since his adhesion

theory was proven wrong. Oh, I forgot to mention that the GI did an ERCP in

July 2002, but couldn't get to the pancreas because my intestines were re-routed

in the gastric bypass. He did another ERCP in Aug 2002 to put a stent in the

end of the common bile duct. The stent really didn't seem to help much. When

he did the liver biopsy, he also did another ERCP to remove the stent.

January 6, 2003 - the GI told me there was just a 'little' something wrong with

my liver - I have autoimmune liver disease and the biopsy showed damage had

already progressed to stage 3 fibrosis - stage 4 is cirrhosis and my liver was

well on its way. thankfully, the liver disease I have - autoimmune hepatitis

(AIH) typically responds well to treatment with steriods and immunosuppressants.

I was lucky and my liver responded and seems to be doing pretty well. I was on

steriods for 9 months and I pray to never have to go back on them. I was also

on an immunosuppressant - Imuran for over a year. They are now just keeping a

close watch on my liver enzymes. With the diagnosis of AIH, the GI insisted

that all my pain, nausea, etc. was because of the liver disease. Never mind the

definite episodes of elevated panc enzymes. However, even though the meds did

help with the horrible fatigue of liver disease and kept my liver enzymes near

normal - the pain continued. The GI kept insisting it was my liver and besides,

my amylase wasn't elevated with the attacks anymore.

April 2003 - I went to a GI liver specialist at Vanderbilt in Nashville, TN. He

said that I did have liver disease - AIH, but it seemed to be pretty well under

control with meds. He insisted that the spike in my liver enzymes that came

with the attacks of pain, nausea, and vomiting were not caused by my liver but

were a result of a problem with either my biliary tree or pancreas. Since he

only dealt with liver problems, he didn't want to bother with helping me with

the pancreas stuff.

May 2003 - After getting the report from the liver guy at Vandy, my GI told my

pcp that 'yeah, she does have something going on with the biliary tree in

addition to the liver disease but it's caused by the gastric bypass and she just

needs to have the gastric bypass reversed'

I was furious. I told my pcp that the GI was full of crap. I'd had the same

exact pain and a 'documented' attack of acute panc nearly two years prior to the

gastric bypass. I also reminded my GI that I'd had an attack of the same pain

in Oct 2001, two months prior to the gastric bypass. I made up my mind then

that I would NEVER go back to that GI. I was going to ask my internal med doc

to refer me to a GI in Huntsville. (i live in Athens, AL, which is a small town

25 miles west of Huntsville and 100 miles north of Birmingham)

I didn't have to wait long because I ended up having an attack that landed me in

the hospital before I could even make an appt to talk to my internal med doc

about sending me to a different GI.

Late May 2003 - I finally put two and two together and wondered if my lipase was

elevating with the attacks but we just didn't know it because at that time my

local hospital never tested the lipase because they had to send it out and it

took 3 days to get results. I had gone to the ER at the hospital (Crestwood)

that my internal med doc used a few times and my lipase had been slightly

elevated with a couple of the attacks. The very night that I put all this

together, I had a major attack. My mom took me to the Crestwood ER. Lo and

behold, my liver enzymes had spiked up, amylase was normal, and the lipase was

elevated! I was admitted and my internal med doc said the pain, nausea, and

vomiting was absolutely acute panc because an elevated lipase is about 99.9%

specific for something going on with the pancreas. He was furious to find out

they hadn't been bothering to check my lipase at my local hospital! I was in

the hospital for 4 days and begged him to let me go home.

June 2003 - I was back at the ER in 36 hours with even higher liver enzymes and

lipase. My amylase stayed right around 50 all the time! This attack earned me

a 7 day hospital admission and my internal med doc told me that from now on I

had to listen to him since he'd discharged me against his better judgement! I

laughed and told him that having to listen to him was probably worse than having

to listen to my mother. He laughed and told me I was right! This time the

internal med doc called in a new GI since my current GI was in Birmingham, 100

miles away. This was one of the greatest blessings. My new (and now current)

GI specializes in pancreas and liver problems. He took one look at the ct scan

and my history and told me I definitely had cp. He wasn't sure of the cause but

felt part of the problem was the bile not flowing well. He put me on actigall

to thin the bile and panc enzymes with meals to keep my damaged panc from having

to work so hard.

Well, so much for the short version. There really is no short version! In

addition to everything else, I was sent to Mayo clinic in Rochester in June

2004. My rheumatologist (I have systemic lupus) wanted a fresh team of doctors

to evaluate me and see if there was something more that could be done for the

cp. I'm not even going to get into that. It really wasn't worth the trip,

tests, torture, etc. The doctors there couldn't really confirm or dispute any

of the diagnosis that I had gotten from other doctors. They had nothing to add

to my current treatment.

Both my internal med doc and GI insist that I do have CP and that short of

letting someone cut on me, there's really nothing more to be done. I take

actigall and panc enzymes - they do seem to help but I still have attacks that

are severe enough to warrant admission to the hospital on a regular basis - 7

times since the end of May. I am under the care of a pain mgmt specialist since

November 2002. Having meds for pain and nausea available and taking them on a

regular basis keeps me away from the ER lots of times and allows me to have some

good days. My docs say that because I have cp, we cannot depend on my labs to

decide how severe the attack is. We have to go by symptoms and they pretty much

leave it up to me to decide if I need to be in the hospital and have a few days

of IVs and 'gut rest'. The doctors in the ER at Crestwood (the hospital in

Huntsville that my internal med and GI doc prefer) are normally wonderful. The

ones that have given me problems have gotten their butts chewed by my internal

med doc. He used to be the chief of Crestwood ER and he doesn't hesitate to

defend his patients if the docs don't do what he thinks they should. I have a

pcp in Athens and he doesn't hesitate to admit that my health issues are too

complex for him to handle. However, he has no problem with taking care of me at

our local hospital when the only thing that can be done for me is IV fluids, gut

rest, pain, and nausea med. He contacts my GI doc to make sure he's doing what

my GI doc wants him to do as far as my treatment. Most of the time, I am now

treated well at my local hospital, with the exception of two ER docs that are

just jerks and a few nurses. When I need to be admitted, we kind of alternate

hospitals depending on how severe the attack is and also depending on what is

going to be easier on my family.

Well, I've given you way more info than you probably wanted - but that's my

story! By the way, despite numerous attacks, pain med daily, and always having

to be very careful with my diet - things are not as bad for me as they could be.

Having doctors that support me and believe me when I tell them I am in pain -

regardless of the labs - makes it a lot easier to deal with cp. I have good

days and bad days and most of the time I take it with a grain of salt. However,

I did have a melt down the other night. I have not eaten any meat in about 2-3

weeks. for some reason, there are times that my panc just does not like meat -

and it NEVER likes beef - that is a definite NO forever for me! Anyway, I'd

been doing everything the doc said - LOTS of rest, no food that is the least bit

appetizing (his words!), no meat, very careful with everything I ate or

drank. Tuesday night I'm watching a movie. It's been over an hour since I had

anything to eat or drink. I'd had a good day and my pain had been kept to a

tolerable level with my meds. Wham - the pain from he** hits me, along with the

nausea. My husband brought me meds for pain and nausea and I was able to keep

them down. After about 45 minutes, the pain was settling down. However, within

20 minutes, the pain was even worse again. My husband wanted me to go to the

ER, but I didn't even have the strength to walk to the car. I just curled up in

a ball and after another 45 minutes, the pain diminished to the point that I

could at least move. It was bad off and on all Tuesday night. I think I

finally went to sleep at about 4 a.m. I've had several bad episodes since

Tuesday night but they haven't lasted longer than about 45 minutes and then the

pain gets better. Tuesday night when the pain hit the second time, I just cried

like a baby. I told my husband I was just so sick of hospitals, ERs, pain

medicine, etc. I was doing everything right and still I was having episodes of

pain that reached a 10+! However, I have avoided the ER so far. Don't know how

much longer I can avoid it as I am still having a lot more pain than I can

really handle at home. I'm trying to tough it out and just be extra careful

with everything I do as well as everything I eat or drink. Wish me luck because

I think a hospital admission is probably on the way and I am just postponing

things. However, I am just plain TIRED and the thought of being in the hospital

again - for the 8th time since the end of May is almost as unbearable as the

pain at this point!

I don't know if I've already said this, but just in case, I'll tell it anyway.

My amylase has not been elevated since around August 2002. In the past 12

months, my lipase has only been elevated twice as far as I know. It was

elevated on Christmas Day, 2003, and it was elevated with my last hospital

admission the end of Aug 2004.

W

alabama

[Guest guest]

Hi ,

OMG, what a horrible story. It is hard to believe that they would be

so inept at figuring out what is wrong with you. I really had a hard

time with the fact they hadn't been testing your lipase!

, when you went to the Mayo, they are supposed to be tops as far

as digestive problems go. They didn't have any recommendations?

Has anyone suggested you might have your immune system attacking your

pancreas? Have they tested for auto antibodies for that? If you

were attacking your liver, I don't see why your pancreas couldn't be

having the same problem. How long has it been since you were on

steroids? Were you still having pancreatic attacks while taking that?

It would seem to me that there must be a reason for the

pancreatitis. After all this, don't they give you a reason for the

problem with your pancreas?

Thanks for writing. My original post was asking about what symptoms

and test results you had before having an ERCP done. They did a

study to see if MRCP was as accurate at diagnosing problems as an

ERCP, and had three groups of patients. Low, moderate and high

probablility of stone blockage or pancreatitis before an ERCP. I

thought they had interesting criteria for putting patients in these

categories.

LOw= normal hepatic tests, no history of jaundice or stone migration,

bile ducts measured less than 7mm on ultrasound.

Moderate=elevated liver tests [less than twice normal level], history

of stone migration, moderate dilation of the common biliary duct [8-

10mm]

High=More than twice normal liver tests, jaundice, dilation of the

common biliary duct to greater than 10mm.

I had asked if people on the list saw themselves in one of these

categories before having an ERCP?

, I don't know anything about all this, just starting to go

through the diagnostic process myself, but I hope someone here can

help you out. There must be something more that can be done for

you. YOu just can't live on pain and nausea meds all the time.

I know how you feel about the hospital stays and testing becoming

more of a problem to tolerate sometimes than the pain. I have to go

in the hospital again tomorrow for more tests, since 3 weeks after

gallbladder surgery, I still have the same pain and more. I haven't

been eating solid foods for 4 of the last 5 weeks.

They are going to do the same tests I have had 3 times already.

MRCP, upper GI, CAT scan and I forget what else. I am hoping they

see something because if I get to the end of these tests and nothing

shows, then they are going to be talking about an ERCP and I

definitely don't want to have that done.

My surgeon is the one who is admitting me. He talked to me about the

possible causes of my pain/eating problems and believes there is more

going on than they originally thought. They thought once they took

out my gallbladder, everything would resolve. I didn't, but who am I.

He mentioned that one of the possibilities was a problem with the

sphincter of Odi [correct sp?]. He said if we get to that point we

have some tough decisions to make, because it is hard to diagnose and

treatment is only reasonably moderately successful.

There is some suspicion that could be the problem as I have a

mitochondrial condition that can effect muscles and does effect my

other muscles.

So, I am going to post another post to the list, to see if there is

anyone else out there with that problem.

I appreciate your post and I know it will help many people to have it

here on the list. Have you asked your doctors when they will take

some further action, and what that action will be? I think you

should be sharing with your doctor how you are feeling emotionally

about the attacks, the pain and the medical interventions. Have you

tried to find a medical advocate? I know there is one in this area,

who will get in there and go to bat for you with doctors and

hospitals. She is expensive, but will get your records in order,

review them and try to find another specialist to review your case

again. She goes to appointments with patients and argues with

doctors etc. Try contacting the socialwork department of the

hospital you visit and ask for recommendations. Do a google search

for an advocate for your area.

I am sorry, seems like a pretty inadequate response, but hopefully

someone else might have a better idea. Try posting this post again

with a different heading to get more responses.

Hope things get better for you soon..

:-)

Adam

[Guest guest]

Adam,

Thanks for your post. Yes, some of my doctors do think the pancreatitis is

autoimmune. In addition to having autoimmune liver disease, I have lupus,

antiphospholipid syndrome, and the IgG deficiency - all of which are autoimmune

diseases. Well, I'm not sure the IgG deficiency is actually an autoimmune

disease but the hematologist told me and my sister (who also has the IgG

deficiency) that they type we have is linked to the same genes that cause

autoimmune diseases. We also found that my sister and I both got a gene from

each parent that causes autoimmune diseases, but neither our mother or father

have any autoimmune diseases that we know of. Yes, I still had flare ups of

pancreatitis when I was on steriods. However, I am pretty sure I had less,

despite the fact that both prednisone and immuran (the immunosuppressant I was

on for my liver disease) are both known to actually cause pancreatitis. My

doctors do think part of my problem may be sphincter of oddi dysfunction.

However, because I have had the gastric bypass, they cannot do the manometry

test to confirm problems with the sphincter of oddi via ERCP. They would have

to go in surgically to do the test. My doctors here and the doctors at Mayo

clinic think that the level and pain and risk that it would take to confirm that

SOD is part of the problem would just really not be worth it. Even if we know

for sure that it is SOD, there's not a lot we'd do differently. I had two

sphincterotomies via ERCP back in 2000, prior to having the gastric bypass and

they didn't really seem to help. I think there is an operation they can do for

SOD, but it doesn't always work and it's a pretty major surgery. I know it may

sound like things are really bad for me, but so many times I've heard of people

who have had surgery for problems with the pancreas/bile duct and they end up in

worse shape than they were before the surgery. So, at this point, I am really

not ready to consider surgery. However, give me a few more months like the last

3 and I may tell them to cut off my head if they think it will help!

Believe it or not, my story is probably far from unique. CP is not easy to

diagnose. In fact many 'stomach' ailments are very hard to diagnose and also

hard to treat. It's also pretty common for the doctors to be unable to

determine the cause of cp. They call it idiopathic when they don't know what

caused it.

When I first began having acute panc attacks back in 2000, I thought that it

would be horrible to live your life year after year needing narcotic pain

medicine on a daily basis. However, at this point, it doesn't bother me at all

to take pain meds daily. In fact, I am very thankful to be under the care of a

pain mgmt doctor and other doctors who realize that keeping my pain at a

tolerable level is absolutely vital if I am to have any sort of 'quality' life!

Yes, I would love to be back to where I had only the naggy pain for the year

after the initial series of attacks that started in January 2000 and then

improved around March 2001 and the time they returned with a vengance in July

2002. Throughout most of 2000, I rarely required pain medicine when not in the

hospital. From March 2001 to July 2002, there were only a few times that I

needed pain medicine. Even though the attacks were becoming more frequent

during that time, they didn't really last long enough for pain meds to do much

good. It was only after July 2002 that the pain became so severe on a daily

basis that making it through the day without pain meds became almost impossible.

Without the pain meds, I'd be at the ER or in the hospital a lot more often.

With the pain and nausea meds, I am sometimes able to have days that are near

'normal'. It's kind of hard to explain, but believe me, there are a lot of

things worse than knowing that you have to take pain medicine daily just to keep

your pain down to a level that allows you to function.

As for the Mayo clinic. The first GI was an absolute joke. He tried to tell me

that I don't have lupus, don't have liver disease, hadn't ever really had an

attack of acute pancreatitis. When I asked him how did he explain my liver

enzymes going up to 25 times the normal limit and my lipase going up to 2000, he

told me they had never been that high. I told him they most certainly had and

it was documented in the copies of labs I had given him. He argued that there

was nothing like that in my records. When I turned right to the pages that

verified what I had just said, he started stammering and stuttering and didn't

know what to say. The reason he said I didn't have lupus was because I didn't

have a rash on my face. The rash he is talking about is called a butterfly

rash. It is on the cheeks and nose of about 60% of people with lupus. It looks

like a red butterfly landed on your nose and spread its wings across your

cheeks. I had told the doctor that I do have the butterfly rash but it comes

and goes (which is very typical of lupus). I even had a biopsy of the rash back

in 1996 prior to my diagnosis of lupus and the biopsy confirmed that the rash

was from lupus. Rheumatologists are the doctors that deal with lupus and this

guy was a stomach doctor. Yet, he was so brilliant he knew more than every

doctor that had ever seen and diagnosed me. He was convinced that I just needed

to go through the Mayo clinic's pain mgmt program, which is a 3 week long

behavior mod course that teaches you techniques for dealing with chronic pain.

What the doctor didn't know was that I had talked to a shrink about the pain

mgmt program and the shrink told me that he didn't recommend their program for

me and that he thought I should continue with my pain doc at home. He did tell

me that if it got to the point that the pain medicine was no longer helping at

all, that I might consider their program but that for now, it sounded like I was

in good hands. Again when I told the GI doc that Mayo's own shrink didn't

recommend their pain mgmt program for me, the GI just stammered and stuttered.

He finally said, " Well, I can't really confirm that you have cp, but I can't

rule it out either. The only thing I can tell you is that you might want to try

antioxidants because some people with cp are helped by them. " I was so ticked

by the waste of my time, energy, and money! I called my rheumatologist's office

the next morning to let her know what had happened since she was the one that

sent me to Mayo. Less than an hour after I called her office, I got a call on

my cell phone asking me to go back to the GI clinic to see another GI doc. The

second doc was a different story. He was so kind. He told me right away that

lupus was not his specialty but that he did know that you could have lupus and

not have a rash on your face. The CT scan at Mayo showed a 'prominent ampulla',

which he said could be some scar tissue or a tumor obstructing the flow of bile.

He recommended an ERCP. I was hesitant since having the gastric bypass made

doing a complete ERCP almost impossible. However, I told him I'd let him do the

ERCP if my GI at home said that I should. He called my GI at home while I was

there. My GI said I should let him try the ERCP. I agreed but that was a bad

mistake! I've had a total of 7 ERCPs but this one was horrible! I was awake

the entire time despite getting massive demerol and versed. The pain was beyond

belief. I was literally screaming in pain - the best you can scream with a tube

down your throat. I kept trying to grab the tube and pull it out but the nurses

were holding my hands down. They weren't able to get much further than my other

GI had been able to get so they couldn't see the pancreas, pancreatic duct, and

couldn't do the SOD manometry to see if I have SOD. They supposedly did get to

see the area that looked suspicious on the ct scan and saw no blockage. So, the

whole trip to Mayo didn't really do any good.

I may not be making a lot of sense. I am really tired. I actually ran a few

errands, went to Walmart and got groceries, and then went to the church for a

suprise dinner in honor of my stepfather. He is the youth director and he has

to go on a business trip to Alaska for up to four months so the youth at the

church had a suprise dinner and all pitched in and bought him this HUGE remote

control tank just to thank him for all he's done for the youth at the church.

It was nice, but I was only able to stay about an hour before I was totally worn

out.

So, I guess I should close. I do have a question for the group and will post

that before I call it a night.

Hang in there and listen to your instincts. You know your body better than any

doctor will ever know it! As for the ERCP, other than the one at Mayo, I

totally slept through all but one ERCP. The first ERCP I had after the gastric

bypass, I woke up for just a bit. That was horrible, but I never knew how

horrible it could really be until my ERCP at Mayo. With the other one, the

minute the doc heard me moan, he yelled, " give her more now! " and I was out

again. He promised he'd never let me wake up during an ERCP again and true to

his word, he used an anesthesiologist and totally knocked me out during the next

two that he had. Now after the first 6 ERCPs, I spent several hours puking my

guts out and in terrible pain for a few days. Rather strange since the ERCP at

Mayo was so horrible while they were doing it. I did not puke one time

afterwards. I did get really nauseated but the meds took care of it. I had a

good deal of pain that night but the meds kept it tolerable and by the next day

my pain was back to it's normal level. An ERCP is not fun, but it is a very

good diagnostic tool.

W