Re: EUS Results

December 22, 2002

Hi Debbie,

First of all, you're not crazy.

Nice that your test was OK.

By the way I think that is no good idea, that you still have pain.

It´s possible that you had acute attacks, and had a total recovering from

each one,

I read that it may happen.

I also have reflux problems, incl. esophagitis, recuring hiatal hernia from

previous surgery

that I done to correct those troubles, that did not work.

This makes me feel with more heartburn, but the pain from pancreatitis is

different, it´s more

in abdominal area, with diahrrea. Sometimes it spreads to my back, left side

and I use to have

bouts of nausea too.

One think that you can do, it´s check why did you have all those acute

attacks, the test that you done could rule out gall bladder stones, I think.

You also can do fecal fat test to see if your pancreas is really working

good, or if your triglicerides

level are normal.

Apart from pancreas you also can check bowel issue, as IBS.

All the best,

Liane

you wrote:

I done endoscopic ultrasound yesterday (Thursday) which revealed a normal

pancreas. And this test is more sensitive than the ERCP so, either I am

crazy

or it is too soon to tell if there is anything wrong. I have been having

chronic pain since July 9 after having 5 acute attacks of pancreatitis. The

pain I have feels like someone's fist full of gas that revolves around and

around through my back and spine and RUQ and LUQ -the intensity changes by

the minute. They did find mild esophagitis - but I hardly think that is the

reason I have had a 30+ lb weight loss in 6 mos and chronic pain. I am on no

pain medication and now I am trying to decide what the next step should be.

Debbie in Mich

December 22, 2002

Hi Debbie,

First of all, you're not crazy.

Nice that your test was OK.

By the way I think that is no good idea, that you still have pain.

It´s possible that you had acute attacks, and had a total recovering from

each one,

I read that it may happen.

I also have reflux problems, incl. esophagitis, recuring hiatal hernia from

previous surgery

that I done to correct those troubles, that did not work.

This makes me feel with more heartburn, but the pain from pancreatitis is

different, it´s more

in abdominal area, with diahrrea. Sometimes it spreads to my back, left side

and I use to have

bouts of nausea too.

One think that you can do, it´s check why did you have all those acute

attacks, the test that you done could rule out gall bladder stones, I think.

You also can do fecal fat test to see if your pancreas is really working

good, or if your triglicerides

level are normal.

Apart from pancreas you also can check bowel issue, as IBS.

All the best,

Liane

you wrote:

I done endoscopic ultrasound yesterday (Thursday) which revealed a normal

pancreas. And this test is more sensitive than the ERCP so, either I am

crazy

or it is too soon to tell if there is anything wrong. I have been having

chronic pain since July 9 after having 5 acute attacks of pancreatitis. The

pain I have feels like someone's fist full of gas that revolves around and

around through my back and spine and RUQ and LUQ -the intensity changes by

the minute. They did find mild esophagitis - but I hardly think that is the

reason I have had a 30+ lb weight loss in 6 mos and chronic pain. I am on no

pain medication and now I am trying to decide what the next step should be.

Debbie in Mich

December 22, 2002

Debbie,

I can so totally relate. I got my MRI results back yesterday and guess

what? I don't have Pancreatitis! After almost 3 yrs, the doc has

decided it is nothing more than unexplainable chronic abdominal pain.

Funny thing. On the one hand, this is really awesome news as

Pancreatitis is a very severe illness. On the other, what the heck is

going on here? Why can't they find the answers? Am I completely

insane?

With a diagnosis like unexplainable chronic abdominal pain, I imagine

pain meds will be a thing of my past as well as any shot at ssd. This

is so frustrating. I should be happy I don't have the illness, but the

not knowing is horrid.

K

EUS Results

I had an endoscopic ultrasound yesterday (Thursday) which revealed a

normal

pancreas. And this test is more sensitive than the ERCP so, either I am

crazy

or it is too soon to tell if there is anything wrong. I have been having

chronic pain since July 9 after having 5 acute attacks of pancreatitis.

The

pain I have feels like someone's fist full of gas that revolves around

and

around through my back and spine and RUQ and LUQ -the intensity changes

by

the minute. They did find mild esophagitis - but I hardly think that is

the

reason I have had a 30+ lb weight loss in 6 mos and chronic pain. I am

on no

pain medication and now I am trying to decide what the next step should

be.

Debbie in Mich

December 22, 2002

Debbie,

I can so totally relate. I got my MRI results back yesterday and guess

what? I don't have Pancreatitis! After almost 3 yrs, the doc has

decided it is nothing more than unexplainable chronic abdominal pain.

Funny thing. On the one hand, this is really awesome news as

Pancreatitis is a very severe illness. On the other, what the heck is

going on here? Why can't they find the answers? Am I completely

insane?

With a diagnosis like unexplainable chronic abdominal pain, I imagine

pain meds will be a thing of my past as well as any shot at ssd. This

is so frustrating. I should be happy I don't have the illness, but the

not knowing is horrid.

K

EUS Results

I had an endoscopic ultrasound yesterday (Thursday) which revealed a

normal

pancreas. And this test is more sensitive than the ERCP so, either I am

crazy

or it is too soon to tell if there is anything wrong. I have been having

chronic pain since July 9 after having 5 acute attacks of pancreatitis.

The

pain I have feels like someone's fist full of gas that revolves around

and

around through my back and spine and RUQ and LUQ -the intensity changes

by

the minute. They did find mild esophagitis - but I hardly think that is

the

reason I have had a 30+ lb weight loss in 6 mos and chronic pain. I am

on no

pain medication and now I am trying to decide what the next step should

be.

Debbie in Mich

December 22, 2002

Debbie,

I can so totally relate. I got my MRI results back yesterday and guess

what? I don't have Pancreatitis! After almost 3 yrs, the doc has

decided it is nothing more than unexplainable chronic abdominal pain.

Funny thing. On the one hand, this is really awesome news as

Pancreatitis is a very severe illness. On the other, what the heck is

going on here? Why can't they find the answers? Am I completely

insane?

With a diagnosis like unexplainable chronic abdominal pain, I imagine

pain meds will be a thing of my past as well as any shot at ssd. This

is so frustrating. I should be happy I don't have the illness, but the

not knowing is horrid.

K

EUS Results

I had an endoscopic ultrasound yesterday (Thursday) which revealed a

normal

pancreas. And this test is more sensitive than the ERCP so, either I am

crazy

or it is too soon to tell if there is anything wrong. I have been having

chronic pain since July 9 after having 5 acute attacks of pancreatitis.

The

pain I have feels like someone's fist full of gas that revolves around

and

around through my back and spine and RUQ and LUQ -the intensity changes

by

the minute. They did find mild esophagitis - but I hardly think that is

the

reason I have had a 30+ lb weight loss in 6 mos and chronic pain. I am

on no

pain medication and now I am trying to decide what the next step should

be.

Debbie in Mich

December 23, 2002

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

December 24, 2002

,

Mine started with the blood sugar only going low. That lasted a couple of weeks

and then it started going high. My all time high keeps getting higher. first

the all time high was just once over 200 at 216, then it crept to 247. Just

last week it went up to 324. I have pretty much been eating every two hours

during the day since this started (at the advice of my pcp and nutritionist).

That seems to keep my blood sugar from going below 70 most of the time. The

lowest it ever went to was 51, but that was enough to make me feel like crap.

cold sweat, nauseated, dizzy, brain fuzzy

Oh, another thing I learned that is important in the regulation of blood sugar.

You must have a balance of protein and carbs. At first I was only eating carbs

(mostly sugar) when my blood sugar went low. That would get it up quickly but

then it would drop again pretty quick. By balancing the protein with the carbs,

I am better able to keep my blood sugar stable. Doesn't always work the way it

should but I seem to be getting a little better at it over time.

I had no idea that even the minor blood sugar fluctuations like I've been having

could make you feel so crappy. I have a great amount of empathy for people who

must live with diabetes. At first, I was very hopeful that this was just a

temporary thing for me. I've pretty much accepted that it may be a way of life

from this point on. I have an appt with an endocrinologist on Jan 21st.

W

Re: EUS Results

,

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

December 24, 2002