Re: EUS Results

[Guest guest]

Ken,

Don't be suprised at your results. That is the story of my life! All x-rays,

ct scans, ultrasounds, mri, and mrcp of my pancreas are prefectly normal. I

have not been diagnosed with cp. I have recurring acute pancreatitis and acute

abdominal pain with and without significant liver enzyme elevation. How's that

for a diagnosis? My GI was absolutely positive that my problem was being caused

by adhesions blocking my bile duct. His theory was that the adhesions sometimes

got pulled or twisted, causing me severe pain, nausea, and vomiting. Other

times they blocked the flow of bile to the point that the liver was irritated,

thus the elevation (over 20 times normal) of the liver enzymes. Still other

times, they blocked the bile duct to the point of causing acute pancreatitis.

Technically, I've only had either 4 or 5 actual cases of acute pancreatitis.

(those documented by elevated panc enzymes) The first one was back in Jan 2000

and the next documented case was not until Jul 2002. My liver enzymes started

showing mild elevation in March 20002. Since that time, they have ranged from

normal to over 20+ times normal. I've had numerous attacks with totally normal

labs and films. I had 3 ERCPs back in 2000. The first two showed 'sludge' in

the bile duct so they did a sphincterotomy. These were done by two different

GIs. They each pronounced me cured after the ERCP/sphincterotomy and had no

answers for my continued pain. The third ERCP was done by my present GI in Nov

2000. It showed a healthy pancreas and properly flowing bile duct. It did show

gastric bile reflux and a very inflamed stomach wall lining. The GI said this

was the reason for my pain. He put me on ulcer meds and I did get better for a

while. I had a roux-en-y gastric bypass in Dec 2001. This is the surgery done

to permanently correct gastric bile reflux because the bottom part of your

stomach (where the bile was refluxing back in to and damaging the stomach wall)

is separated off and no longer used. This surgery is also the 'gold standard'

for weight loss. I figured I would kill two birds with one stone. I had one

pretty severe episode of pain in Oct 2001, but we were out of town with friends

so I didn't go to the ER. Other than that, I had mostly had just naggy sort of

pain under the right rib and through to the back for the year preceding the

gastric bypass. The gastric bypass went great. I have lost 100 lbs and gone

from being severely obese to a normal weight. I've had no complications from

the gastric bypass and I would do it again tomorrow. In Feb 2002 (2 months

after the gastric bypass) the pain under my right rib started getting worse. I

would have short, very severe episodes of pain. They treated me for an ulcer to

no avail. In April 2002, I returned to my GI. He did an MRCP which showed

nothing abnormal. He did an endoscopy which showed a perfectly healthy new tiny

stomach. The gastric bile reflux had been cured by the gastric bypass, so that

was good. He had no answers for my pain, but told me my pancreas was perfectly

healthy and I'd probably never have another bout of pancreatitis. The episodes

of pain did stop soon after that, so I just chalked it to maybe slow healing

from the surgery. I had no problems in May or June. On July 18, 2002, I was in

VA (about 1000 miles from home) on a business trip. That morning, the all too

familar pain hit. It lasted about 20 minutes and eased up. I thought it was

maybe just a bad gas pain. A few minutes later, I took a drink of water and the

pain returned instantly and this time it didn't let up. I had one of my

co-workers bring me to the ER. I was admitted shortly after that with a

diagnosis of acute pancreatitis. My lipase was 1960 (about 10 times the normal

limit). I have had so many episodes since then I've lost count. I've been

hospitalized 12 times since July. I had surgery on December 9th by the surgeon

my GI referred me to. My GI was so sure there were adhesions around the bile

duct or pancreas. The surgeon felt that was very doubtful, but he felt that the

very large incisional hernia in my lower left abdomen (where my left ovary was

removed in Feb 2001) could be aggravating things and causing a lot of my

problems. The surgeon said he would repair the hernia and take a good look at

the pancreas and ducts. He found the incisional hernia plus a smaller inguinal

hernia, but no adhesions anywhere near the pancreas or ducts. I have been

better since the hernia surgery. I've only had one bout of severe RUQ pain and

it subsided after about an hour. However, I am continuing to have problems with

keeping my blood sugar regulated. My surgeon said that his guess would be that

my pancreas has sustained damage but it is just not severe enough to be seen at

this time. My GI put a stent in the bile duct in August. No one can get to my

pancreas or pancreas duct via ERCP because the gastric bypass rerouted my

intestines. On Dec 27th, I will have an ERCP to remove the stent and also a

liver biopsy. They think there is a possibility that I have autoimmune liver

disease since I have systemic lupus.

My theory is that perhaps I have the beginnings of mild chronic pancreatitis

(perhaps caused by lupus). That is the reason for the problems with my blood

sugar (which began in Oct). That is also the reason for my bouts of pain,

nausea, and vomiting. For whatever reason, sometimes the bouts cause my

pancreas and liver enzymes to elevate. Other times they just cause the liver

enzymes to elevate. Still even more times, they only cause me horrendous pain

with totally normal labs.

I suppose time will eventually tell. I understand your frustration. I do not

want a diagnosis of chronic pancreatitis. However, I would like to have an

answer for my continuing pain, nausea, and vomiting. I am currently under the

care of a pain management doc. He prescribed up to 3 Lortab 10 per day. He

suggested a celiac plexus block for the pain but couldn't do it at the time

because I am on coumadin. I'm going to give it a week or two after the liver

biopsy and ERCP to remove the stent. If the pain continues, I will try the

celiac plexus block. I had reflex sympathetic dystrophy (RSD) in my right foot

after surgery back in 1995. A block of the sympathetic nerves totally cured the

RSD in my foot and it has never come back. They have told me the celiac plexus

block is similar. I know the blocks can sometimes work wonders so I am willing

to give it a try. The problem is that unlike with the RSD, the block will not

cure the problem and will most likely have to be repeated every few months.

However, that's the only way that I can imagine being able to function without

pain med.

Well, I have written a book and if you made it to the end, it's a miracle! I

wish you well in your search for answers. Just wanted you to know you are not

alone.

W

[Guest guest]

,

I too have problems with keeping my sugar regulated. Can I ask if you have

high or low blood sugar. Mine is low and stays low. I also have RUQ pain and

doc has no explanation.

Merry Christmas

[Guest guest]

,

I too have problems with keeping my sugar regulated. Can I ask if you have

high or low blood sugar. Mine is low and stays low. I also have RUQ pain and

doc has no explanation.

Merry Christmas

[Guest guest]

,

I too have problems with keeping my sugar regulated. Can I ask if you have

high or low blood sugar. Mine is low and stays low. I also have RUQ pain and

doc has no explanation.

Merry Christmas