Do you recognise ?

[Guest guest]

I´m not a frequent poster in this group. However, I do want to

check

with you whether it is " normal " to experience the ups and downs in

our desease I encountered this week.

Since 4 weeks now I have been getting the drug pancrease, a enzyme

thing that should take over some of the workload the pancreas is

taking care of.

From the first (or maybe second) day I used pancrease I did not need

any pain killer drug anymore. Until last night. The day before last

night I noticed some very minor pain in the right side but it was

too little to worry about.

However, last night I had a pain attack of an intensity I never

experienced before since I have been suffering from pancreatitis. A

very bad pain originating from the right side of the chest,

radiating to the chest´s center and eventually stomach area.

It lasted for about 4 hours and forced vomiting about all I had in

my stomach, which was not that many. (It is not a nice story, I

know). The acid level of my stomach fluid was so high it burned my

throat, at least it felt (and still feels) that way.

I must confess that I was prescribed Omeprazol for stomach acid

neutralisation. Which I stopped using when the pain complaints were

no longer present. Now I am taking that again, I dont know whether

this <not using it anymore> caused the sudden attack, but maybe you

recognise.

My concern is, can I expect this to happen frequently ? I did have a

very important meeting today which I had to cancel....My business (I

run my own software company) can get pretty ruined when people

cannot count on me.....

I do steer clear of alcohol and fat (did not drink a drop for over

three months now) so this cannot be causing the trouble.....

Kind regards, Danny.

[Guest guest]

Danny,

the enzymes may not have caused the pain episode, it may have just been

the pancreatitis doing that. Unfortunately, it does have a tendency to

have periods of extreme pain coming in out of nowhere, even if you are

taking the enzymes. One of its worst symptoms, which include pain,

vomiting, diarrhea and such. It is important to take both the acid

reducer and the enzymes as the acid reducer makes sure that there is

enough of the enzymes in your system when it reaches the gut. If you

don't take the acid reducer, the acid in your stomach may have destroyed

a large portion of the enzymes before they hit your gut, which is where

you need them. I hope you don't have any other episodes of pain, but if

they continue to reoccur, please bring them up with your doctor. You may

need to have a stent placed or have your ducts checked for stones or

blockage. Or you may have Sphinter of Oddi disfunction, which can

causes spasms of pain out of the blue as well. I have been fighting

pancreatitis for over 16 years and have had many such episodes of pain.

At this point, I'm in end-stage chronic pancreatitis and I'm in pain

24/7 and on daily pain meds. However, not everyone who has had one or

two episodes of pancreatitis gets chronic pancreatitis and how soon a

person reaches end-stage (if they do) varies a great deal. There are

people who's disease progresses slowly (like me), and those who progress

rapidly over a short period of time, and many people inbetween. You have

my hopes that you don't have any more episodes of pain.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

Thanks Kimber,

I appreciate your advice and reflected experience in this matter.

I did visit the hospital yesterday, just to prevent me from getting

caught in a pain attack without proper precautions. I did not get

much out of it though.

I will be getting a CT scan within the next two weeks. Just to check

whether there are blockings in the pancreas that can be fixed.

I have been told pancreatitis is a desease without a cure. Which

rather shocked me. Treatment consists of nothing more then fighting

symptoms like pain and reliefing the pancreas from its duties.

You speak about end-stage. Which means ??? To be frankly honest,

pain and not being able to eat anymore (again) is reaching a stage

here where I consider quality of life too low to get on with it.

Regards, Danny.

[Guest guest]

Danny,

end-stage chronic pancreatitis is when the pancreas is so damaged that

it can no longer produce amylase and lipase and other pancreatic enzymes

and that the only possible treatments are surgery (which has a high

percentage of not working) or to keep the patient as comfortable as

possible with pain and nausea meds and hospital admissions when the pain

is uncontrollable.

As for your ER experience, you might want to get a letter from your

doctor stating that you have pancreatitis attacks and give a list of

doctor's orders requested by your physician. Have your physician sign

it, date it and give their license number to make it official. This may

help with most doctors, though we all know that there are some doctors

out there who just don't believe a person with pancreatitis isn't just

an alcoholic and drug seeker.

Unfortunately, there is no cure for pancreatitis and not much in the way

of treatment. That's because doctors and researchers just don't

understand the pancreas. Part of the problem is that pancreatitis in

animals is not the same as pancreatitis in humans, so inducing it in

animals (which is also difficult) doesn't necessarily give them any

insight into pancreatitis in humans, and they can't start out by using

humans as guinea pigs, except in clinical trials, and before you can get

into clinical trials, you must first experiment on animals. Because of

this lack of understanding, surgeries with the pancreas are very tricky

and have a high percentage of not working or making things worse.

However, a number of promising avenues have shown up in stem cell

research and in cloning. These are the most likely avenues of coming up

with a cure.

Unfortunately, quality of life is a big issue with pancreatitis,

unfortunatley, there just aren't a lot of alternatives at this time.,

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

[Guest guest]

In a message dated 8/23/2003 9:12:31 PM Eastern Daylight Time,

d.maijer@... writes:

> Is removal of the pancreas an option ?

Hi Danny, I had my pancreas removed and the islets transplanted into my

liver. I don't have any pain. I am a mild diabetic but if I was very

disciplined

I wouldn't have to take insulin. I prefer to take a small amount of insulin

and eat pretty much what I want.

Dr. Sutherland is the surgeon who operates out of The Fairview University

Medical Center in Minneapolis, MN. He has been doing this surgery since 1970s.

There are others in our support who have had the surgery also. I will give

you some information and you can learn more about the surgery. The surgery that

saved my life. I had been unable to eat for six years. I had so many

stints, ercps, ports, tpn, picc lines, G-tubes, j-tubes, blood infections, and

the

list goes on. I was told by different surgeons different opinions of what

surgery needed to be done so I could be cured. One surgeon said that I needed

the

tail cut off of my pancreas. Another said that I needed a Whipple, and

another said I needed a peustow. I found out about the Total Pancreatectomy and

Islet Cell Transplant and I knew that was the surgery for me. I knew I would

continue to have pain if I chose any of the other surgeries. I am so glad that

I made the decision that I made. Having that surgery has given me my life

back. When you read about the Total pancreatectomy and islet cell transplant

read the AUTO islet cell transplant if you are not diabetic. This is the

surgery

that I had and Auto means that I you have your own islets transplanted from

your own pancreas and injected into your liver where they do the job of

controlling your blood sugar as they did in the pancreas. Depending on how many

islet the doctor is able to retrieve will determine whether you will be a

diabetic. Being a diabetic is much easier than having chronic pancreatitis.

Many

people are not diabetic after the surgery. I was 58 when I had my surgery and I

had pancreas pain for 15 years.

Dr. Sutherland's e-mail address: DSuther@...

Telephone number: (612)625-7600

Web site: <A HREF= " www.Diabetesinstitute.org " >www.Diabetesinstitute.org</A>

Dr. Sutherland's secretary: Anne Marie Papas

Anne Marie Papas's e-mail address: papas001@...

Dr. Sutherland will be speaking at the pancreatitis symposium in

Indianapolis, Ind next Friday the 28 of August. I hope you can join us there.

You will

find it very informative. If you need any information about the symposium I

will be glad to give it to you. I am sure Karyn will be able to send you all of

the information for the symposium. Shirley

[Guest guest]

> Danny,

> end-stage chronic pancreatitis is when the pancreas is so damaged

that

> it can no longer produce amylase and lipase and other pancreatic

enzymes.

Kimber,

I know I was responsible for the damage to my pancreas myself, at

least I guess so. I have been a heavy drinker for over 25 years.

But I already quit drinking strong liqueur for two, maybe three

years. I stopped drinking alcohol at all about three months ago.

But if I read your words the pancreas is subject to even more

detoriation even after changing the lifestyle ? Which means that

inspite of living way less unhealthy the progress cannot be stopped ?

Is removal of the pancreas an option ? This would probably imply a

lifetime of taking the enzymes and other necessary chemicals. But if

it would eliminate the pain then quality of life would be close to

normal again.

I know you are not a surgeon, hence your footnotes, but you seem

pretty well aware of all aspects of our desease after suffering for

16 years.....And other members may have some experiences too...

Kind regards, Danny.

[Guest guest]

Dear Danny,

The damage caused by alcoholic pancreatitis can and does

continue after the person has stopped consuming alcohol. I am

a perfect example of this unfortunate fact.

My first hospitalized acute attack was caused by alcohol.

Although it had been several days since I had anything alcoholic

to drink, I did drink in the past and was feeling sick one weekend

with stomach cramps and nausea. By Monday morning that sick

feeling had developed into waking up with excrutiating

abdominal pain with a large, hard mass protruding from my

belly, just to the upper left of my navel. My husband drove me

immediately to a 24 hour medical clinic, and after examination,

the doctor sent me to the hospital. They did a CT-scan of the

mass in my abdomen and gave me a diagnosis of acute

pancreatitis. This was April 30, 2001. I quit drinking that day,

and have never had any alcohol since. Two weeks later, my

condition was upgraded to chronic pancreatitis. The mass in my

abdomen was caused by pseudocysts in the tail and head of my

pancreas.

Within 18 months, my chronic pancreatitis progressed and

deteriorated to the point that I reached diabetic ketoacidosis and

complete pancreas burn-out. Today I have a non-functioning

pancreas and am a type 1 brittle diabetic. All of this happened

AFTER I quit drinking.

Even though I adopted a strict pancreas-friendly low fat diet and

lifestyle as soon as I was diagnosed, took enzymes and

pancreas antioxidants and did everything one is supposed to to

care for their condition, the deterioration continued. Each

aggressive pancreatitis episode I experienced over these

months did further damage. During this time I had 11 different

CT-scans to monitor my pseudocysts and it was noticed that

although the pseudocysts were decreasing in size, the

calcification in my pancreas continued to progress.

I'm not telling you this to discourage you, I'm only explaining my

story to be truthful and open about the damage that can occur.

What you should remember, though, is that we are all different in

how this disease affects us, and what happens to one may not

happen to another, or it may not happen at lightning speed like it

did to me. And while there is NO CURE for chronic pancreatitis,

there is the option of the pancreatectomy with auto islet

transplant and that is the closest thing to a cure available to us at

this time. I have great remorse that I didn't move quickly enough

to have this done while I had the time. My husband, children and

I discussed it at length and planned for it in the future, since we

kept thinking I had more time. My doctor assured me that I

wasn't bad off enough to consider the procedure yet. We were

all very, very wrong.

I wish I could be more encouraging, but I can only relate to what

my experience has been. It's difficult, since there are many

people here that have been dealing and fighting with this

disease for so many years without this kind of trouble. And then

there are others that have gone through rapid and destructive

deterioration, even when following all the rules. I hope you will

be one of the fortunate ones, I hope that for all.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments and advice are personal opinion only, and

should

never be substituted for professional medical consultation.

" What lies behind us and what lies before us are tiny matters

compared to what lies within us. " - Ralph Waldo Emerson

Danny wrote:

>>I know I was responsible for the damage to my pancreas

myself, at least I guess so. I have been a heavy drinker for over

25 years.

But I already quit drinking strong liqueur for two, maybe three

years. I stopped drinking alcohol at all about three months ago.

But if I read your words the pancreas is subject to even more

detoriation even after changing the lifestyle ? Which means that

inspite of living way less unhealthy the progress cannot be

stopped ?

Is removal of the pancreas an option ?

Kind regards, Danny.

[Guest guest]

Danny,

the pancreatic damage may or may not progress, I can't give a definite

answer as they just don't know enough about pancreatitis. For some

people, once they do the lifestyle changes, the disease stops and for

others it continues. The doctors don't understand yet WHY it does this

for different people. They haven't found a definite reason for why one

person the disease doesn't progress and does progress for another

person. It's frustrating not to be able to give you a definite answer on

whether it will continue to get worse for you or not now that you've

stopped drinking and the eating habit changes, etc. All I can say is,

keep doing these things and hopefully, for you, they will stop the

disease from progressing.

Yes, you can have the organ removed, but unless have the islet cells

from your pancreas retransplanted in you, you will be a brittle diabetic

(you can't have this done if you are already a diabetic before the

surgery), which is not easy to deal with and has very severe

complications. Also, there is no guarantee that it will stop the pain.

It does for a majority of the people (I'd don't know the statististics

on this) who have the surgery, but for a small percentage, it doesn't

stop the pain and they don't know why that occurs (again, the doctors

just don't know enough about the pancreas - it's not like the heart

where they know how the organ reacts to all situations and

circumstances. There are just too many unknowns when it comes to the

pancreas). Though for most who do still have pain, they say that it

isn't to the same degree and is easier to deal. And sometyimes, the

islet transplant doesn't take or the person doesn't have enough islet

cells to recover and that means becoming a brittle diabetic. And you

are right, it would require that you take the enzymes for life, but with

pancreatitis, you are already doing that anyways, so there is no change

in that. I suggest talking to those who have had the surgery and hear

how it worked for them. Just send an email to the group requesting that

those who had the surgery contact you because you are interested in

possibly having the surgery yourself. They are usually very willing to

answer any questions you have.

I also recommend you do some research on pancreatitis on the net for

yourself (that's where I've gotten a majority of my knowledge from).

There is a lot of stuff out there. Plus, there are a number of very

interesting possibilities out there on possible cures (that's what I'm

hoping for - it's what keeps me going - the hope that a cure is in the

works).

Kimber

I hope I have been of some help.

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.