Re: HELP ME PLEASE - to Giovanni

[Guest guest]

Giovanni wrote:

I REALLY NEED HELP

it all started when they took out my gall bladder and 6 months after the Pain,

Nausea, Vomiting, Diareah and everything has started. (snip) I have seen so

many GI doctors that I can't remember how many.(snip)Two years ago I went

and took this test that they said is the GOLDEN Test to determine if you have

Chronic Pancreatitis, it was Endoscopy with an U/S, sure enough when I

came to the Doctor said you have BAD Chronic Pancreatitis and it's to late to

operate and its to late for anything (snip) now I have the Proof that I have the

Disease however it still isnt good enough for them because my Labs Amylase

and Lipase are not through the roof (snip)past 2 weeks I have lost 30 lbs and

im not eating because of the pain or the vomiting and im on medication (snip)

but it seems like its not working and I need help

Giovanni,

I'm sorry that you've had such difficulty finding good medical care and a doctor

who will honor your original diagnosis as a result of the endoscopy with US

two years ago. Do you have a copy of these records now, and have you

shown them to the doctors that are treating you now? Oftentimes, if the

patient doesn't have copies of his previous records, labs or tests, any new

doctor treating the patient refuses to accept what's said unless they have

definite, undeniable proof. If you do have copies of the diagnosis given you

two years ago, and are still getting the run around from a doctor you're seeing

now, then I suggest you find another doctor who will work with you.

It's a common known fact among experienced gastroenterology specialists

(those who deal with the pancreas and pancreatitis related problems every

day), that patients who are in advanced stages of chronic pancreatitis often

DO NOT HAVE ELEVATED ENZYME LEVELS! I can refer you to several

medical research sites on the internet that verify this, Hopkins Medical

University, MUSC Digestive Disease section and Lab Tests Online all have

written statements that verify that enzyme levels can be normal, or even below

normal, in CP patients who are in more advanced stages of the disease. As

the pancreas' function is damaged by each additional attack, pancreatic

enzymes are destroyed.......making it harder for tests to show elevated

enzymes, because there aren't that many enzymes left. For example, during

my last two acute attacks, my A & L levels were BELOW normal.

If you aren't working with a doctor who is experienced enough to know this,

you need to keep searching until you find one who does. I know it's

discouraging to have to keep looking for help, but if you want to get the

compassionate and responsible treatment that you deserve, sometimes you

have to keep searching to find it. Where are you located? It may be that one

of our members will know of a doctor in your area who they could

recommend. You could also check on our list of recommended doctors in the

Database file to see if one of those is in your area.

It could be that there was a mistake for that one doctor to say that it was too

late to do anything to help you. Depending upon your individual cause of

your CP and the type, sometimes there is surgery that can help, particularly if

your cause is obstructive pancreatitis. Generally there isn't any sugery that

can help a person with calcifying pancreatitis except for a TP with ICT, but if

the patient has obstructive pancreatitis, there are few other surgical options

of

less severity available that can often provide relief. For this doctor to say

that

it was too late wasn't really telling you the whole story.

Your recent weight loss and increased pain levels indicates that something

serious is going on. I experienced the very same symptoms about 16 months

ago and the outcome was a very unexpected diabetic ketoacidosis condition

with shock and pancreas burn-out, ending up in guarded condition in

Intensive Care. The pancreas burn-out brought on brittle, type 1 diabetes.

Have you been experiencing any other unusual symptoms along with your

weight loss and increased pain, such as blurred vision, frequency of urination,

excessive thirst, excessive hunger, fatigue or weakness? I only ask this

because of the suddeness of my own experiences which began much like

what you are complaining of right now.

Please write again and let us know where you are, and if there is any way we

can help you, we will try our hardest to do so. You are not alone in this, even

though it may seem that way right now. Many here want to help however they

can.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are personal opinion only, and should not be

substituted for professional medical consultation.

[Guest guest]

hey heidi well i was going to ask this question i have been sweating really bad

i mean i could be jsut laying that on the couch doing nothing and ill be

sweating or at work sitting there and brak out in sweats.. i know that is not

normal and it is not good as well.. i have taken my temp some times and i see

that it is 101 102 and the other thing is when i go to the bathroom its like

oily very oily and diareah alot.very tired and weak very weak like im about to

pass out but that is because im not eating.. my wife is worried i am to but i

cant eat and i did today and i threw it up and that was with 9 enzymes 3 before

the meal 3 during the meal and 3 after with 40mg of Nexium so i dont think its

good. im afraid im going to end up in the hospital again and i cant afford it my

job probally with get rid of me i mean i have been in the hospital 2 times

already in this new job been here 7 months and thats not good... well please get

back to me and let me know ok....

Gio

[Guest guest]

Gio,

The sweating very likely could be a side effect from the duragesic patch.

Excessive

sweating, unfortunately, is one of it's known side effects. In my case, it

doesn't make me

sweat during the day, but does cause such excessive night time sweating that I

have to get

up each night and change clothing two or three times every night. Or it could

be

associated with your high temperatures. You need to find out what's causing

those raised

temps.

If you're taking enzyme supplements it should be helping with that diarrhea,

unless you

are starting an attack? If you're having temperatures that high you should

contact your

doctor, Giovanni, that doesn't sound good, in combination with the weight loss,

pain and

diarrhea. Have you tried to drink some supplemental drinks like Ensure Light or

Slim Fast?

They may be easier for you to handle, but would still give you some nutrition

and essential

vitamins and nutrients.

I know you don't want to go to the hospital, but with that combination of

symptoms, I

really do think you should call your doctor for an appointment. The elevated

temperature

is not a good sign....it could indicate that something is wrong.

Please think about this and let us know what you decide to do. Your health is

the most

important thing to think about right now.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are personal opinion only, and should not be

substituted for professional medical consultation.

[Guest guest]

Gio,

I do understand about the eating thing...you get afraid to eat because

everything either

hurts or makes you throw up.....been there, and it isn't good! I'm up because

of another

bad hypo during the middle of the night, I had to eat (haha), so I can raise my

blood sugar

levels. At least I can eat. That and a bout with pain, tonight about a 6, too,

but I've

already taken some oxycodone for that and it's calmed down quite a bit.

Maybe the compazine will help you and you can go back to sleep. I do think the

sweats

may be from the patch, especially since you recently got an increase. I've

researched and

found out that a lot of other people that use the patch have the same problem.

I called

Janssen and talked to them about it, and they sent me a form to fill out so I

could

" officially " register my complaint of sweating as a known side effect. The

woman at

Janssen did say that other's have complained, too.

Even with that as a side effect, I still love the patch. It's the first pain

medication that has

really worked well for me, and I've tried everything, oxycontin, oxycdone,

oxycontin IR,

morphine, Dilaudid, Percocet, Lortab.....just about everything except methadone,

and I

can't get that in this state.

The Dilaudid is supposed to be a very powerful drug, but it just didn't work

that well for

me. I couldn't see any difference between that and the Percocet 10/325 that I

used to

take. It's used a lot for cancer patients, and you know their pain must be

severe. It's

strange how some medications have such different effects on different people.

Well, I understand your tenuous situation at work, too. It's too bad that they

aren't more

understanding, but few employers are. They're just looking at the bottom line,

and if

you're not there, things aren't getting done or they have to get someone else to

come in

and do what you can't. That's why so many of us aren't able to work anymore.

This

disease can really get you down, if you let it. The trick is to try and stay

away from

thinking about it too much, but that's just about impossible when you're in

pain and sick

every time you turn around.

If you can get some sleep later I still think you should give your doctor a call

in the

morning and tell him about those temps. How long has that been going on? You

need to

find out what's causing it. You can't function much longer with that, the pain,

and not

being able to eat. You'll be too weak and exhausted to even go to work.

Take care, I hope you get some sleep. I'm going to try to do the same. We can

talk again

later today.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are personal opinion only, and should not be

substituted for professional medical consultation.