Really need help with Pancreatic Disorders

[Guest guest]

Hello,

I am pretty much at my wits end right now. I have been experiencing

many vague symptoms over the past year including problems with my eyes

and a rash on my face and have had many tests done, however throughout

all of this, what has persisted the most, and gets worse is my

abdominal pain. It is located on the upper left to middle right below

the ribcage, and will come on suddenly and without warning. What is

the scariest thing about it, is that when it hits, it is not just

pain, it is almost completely disabling in the way it feels, and

brings on anxiety and depressed feelings right away, along with fears

of death (due to the conditions of the pancreas that might not be

treatable). The location, and type of pain has led me to rule out

almost anything else except for the Pancreas. However, while the pain

has been going in one form or another since around April/May of 04', I

did have an abdominal CT scan with IV Contrast in August of 04 which

revealed nothing of consequence except for some mild diverticulitis.

Ive had all kinds of blood tests, inlcuding amylase and lypase

evaluations in the last few weeks, and a urine test last night at an

ER that I stopped at. The result is always NORMAL. It is very

frustrating and I am not sure what to do. I guess my biggest concern

is because Ive never had a major illness or chronic condition of any

kind, the sudden feeling that comes over me when this happens, and

leaves just as soon when the attack ends, is what concerns me. I work

myself into a tizzy by reading things on the internet as well...

including an excerpt from a site that has always stuck with me

associated with Pancreatic Cancer... " ...premonitions of

life-threatening illness " . That is really the best way to describe the

emotional feeling I get when the attacks come, but I also get weakness

and other things.

More bothersome to me, I have no history of smoking OR drinking or

family history of terminal things, I am 22 years old. HOWEVER, I now

fear that my years of living on a junkfood diet (maybe 10?) almost

daily could have triggered something to occur. I read that nitrates in

meat are a risk factor.

I guess the best way to sum up my concerns is... Can chronic

pancreatitis be a debilitating condition? Can it affect you

emotionally like these attacks do with myself (almost like a feeling

of needing to rush to the hospital immediately)?

Any help is appreciated.

[Guest guest]

Ian,

Welcome to our family! I understand your frustration with trying to

find answers to your continuing digestive problems. This is an issue

that many of our members have experienced, over and over, before

finding the right specialist who would continue looking, continue

listening, and believe in what the patient was telling them. In most

cases, eventually a firm diagnosis was finally given.

You need to understand that quite often a person can have all the

symptoms of chronic pancreatitis, and still not show elevated enzymes

or abnormal CT-scans. That's when getting a confirmed diagnosis

becomes a real challenge for both the doctor and the patient. You've

already had a battery of tests, with no positive results. Have they

done a triglyceride test on you? This is a fasting blood test, so

it's likely that you might remember if it was done because you aren't

allowed any food or drink for 12 hours prior to the test. A high

triglyceride level would be an indicator of pancreatitis.

From the description of your pain, that it is sudden, intensely fierce

and overwhelming in nature, yet short in duration, it could well be a

Sphincter of Oddi,(SOD), attack. The gold standard test for this

would be an ERCP with manometry, and it's a test that would need to be

done by a highly experienced endoscopist. Most " typical " chronic

pancreatitis attacks have a slower build up and are much longer in

duration. I use the word " typical " loosely, though, because we've

found that every patient is different and may have some differences in

their individual episodes of pain.

The people I know here in our group that have SOD have all said that

their SOD attacks are very sudden, with pain so intense and sharp that

it can almost knock them off their feet, but the attack itself only

lasts for a short period, leaving them sore and in a disabled state

for hours afterward. Hopefully one of our members with chronic

pancreatitis with SOD will see your message and have more information

to give you. If this is what your problem is, a clear CT-scan would

not be unusual at all, since the problem is in the spincter, and

wouldn't show up on a CT-scan as any abnormalty.

Chronic pancreatitis IS a progressively dibilitating disease, but the

length of time and the degree of damage varies greatly from one person

to another. We have members here that have had the condition since

childhood, and are still going strong. One of these members is soon

approaching 60, yet still working and participating fully in an active

lifestyle. So it's not as limitating as some of the research makes it

sound. Much of the success people have with dealing with CP involves

their personal attitude, and the degree of professional care they receive.

It is VERY uncommon for someone as young as you are to have cancer. I

think you should put your mind at rest about this, but if you need to

have proof, there is a bloodtest called the CA-19-9, which is a cancer

tumor marker, that can be done and it would show if there was any sign

of cancerous cells. I personally have this bloodtest done twice a

year, and it's always been benign. A CT-scan will also show evidence

of cancer, and since you've already had one of those that was normal,

I do think you needn't concern yourself with that. I know we ALL are

frightened of that in the beginning, but, as I said, there are ways to

check for it.

Ten years of junk food couldn't have caused your pancreatitis, but it

certainly doesn't help the condition if you continue to eat it. The

causes of chronic pancreatitis in this country can be from gallbladder

obstruction, excessive alcohol consumption, genetic, abnormalties in

the pancreas, (such as pancreas divisim), long use of certain

prescribed medications, or idiopathic, which means that the doctors

can't find evidence of any of the aforementioned.....and literally

just don't know. World-wide, there is also chronic pancreatitis

caused by tropical pancreatitis or scorpion bite, but these don't

exist in the U.S.

Your junk food diet is harmful to the pancreas in the sense that a

damaged pancreas can't manufacture the amylase, lipase and protese

enzymes that are needed to digest fats and proteins. So if you're

eating a diet high in fat and protein, refined sugar and white flour,

the pancreas is unable to digest these elements and causes pain when

you eat the stuff. People with chronic pancreatitis are advised to

eat a diet low in fat and low in protein, with an emphasis on

carbohydrates. Doctor's recommend no more than 30 grams of fat per

day, with small portions, several times a day, with no more than 6-8

grams of fat per meal. If you can adapt your eating habits to follow

that diet, you would see a significant difference in your daily pain.

The use of pancreatic enzyme supplements to be taken whenever you

eat, also makes a tremendous difference in your after-meal discomfort.

It sounds as though you aren't seeing a pancreas specialist who is

aggressively trying to find the cause of your problems. If you can

tell us where you live, we may be able to recommend a

gastroenterologist in your area that another member has been treated

by and recommends. If not, I would suggest that you keep searching

for a gastroenterologist who will be interested in treating you on a

full time basis, and who is aggressive enough to keep testing you

until a confirmed dx is achieved.

I hope this information helps you, and that you'll post again with

some answers to my questions, or questions of your own. We're here to

help you any way we can, and we're always here to listen to your

concerns and offer our support and advice.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

South Eastern Regional Rep.

PAI

Note: All comments or advice are based on personal experience or

opinion, and should not be substituted for professional medical

consultation.

[Guest guest]

Hi,

You didn't put your name. Did you have a diagnosis of pancreatitis? Have you

ever had elevated levels of amalase and lipase? I had problems with my eyes

the first year of my attacks and then when my levels stopped elevating that

stopped. Give us some more info and we will try to help.

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Oh my God! That is it! You hit the nail on the head Kara! I am alone

right now and whenever this hits I get an instant feeling of being

terrified to be alone, like I need to find someone RIGHT AWAY and that

perhaps coming here to work on my own was wrong. I dont know what Im

going to do if this hits me at work, but you are EXACTLY right on.

> >Hi-

> I'm very new to the group, but I can totally agree with some of the

> symptoms you describe.

> >

> >> what has persisted the most, and gets worse is my

> > abdominal pain. It is located on the upper left to middle right

> below

> > the ribcage, and will come on suddenly and without warning. What is

> > the scariest thing about it, is that when it hits, it is not just

> > pain, it is almost completely disabling in the way it feels, and

> > brings on anxiety and depressed feelings right away, along with

> fears

> I also experience my pain on the left just below my ribcage, like a

> softball shoved under the edge of my rib. Then I am not able to

> continue doing what ever i was doing. I get flooded with anxiety and

> I'm terrifed to be alone (which is a problem since I live alone). I

> think this part is the worst, the debilitating effects. If it was

> just pain I could maybe continue to do homework or whatever, but I

> can't do anything except lay and cry.

>

> I don't know that this is any help for you, just know that you are

> not crazy. I feel it too.

> Kara