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In a message dated 10/26/00 6:44:39 AM Pacific Daylight Time,
sportbroad@... writes:
<< I'm kind'a new to the group, but have had chronic Pancreatitis for about
10
years. Dr. Howard operated on me last year and he is wonderful. He took only
part of my pancreas out, and then reconnected the rest of my innards. I have
had a few problems since the surgery, but compared to what I had before it,
I'm on easy street. Dr. Howard is quite and reserved, but extremely good.
Sportbroad-Becky
Hi Becky,
Dr. Howard is my doctor, too. He is highly noted as a pancreatic surgeon. I
had a Distal Pancreatectomy and Spleenectomy. What kind of surgery did you
have?
Karyn
Pancreatitis Support Network
Indianapolis Symposium on Pancreatitis 2000
November 11, 2000

Dear Diane:
What kind of events occurred between the removal of the gallbladder and the
diagnosis of chronic panc eight years later? Was a cause for the panc
following the gallbladder surgery ever determined?
Michael Lockridge

Hi everyone,
A whiile back I had sent a post oput to see if anyone taking Creon woiuld be
willing to write a testimonial. I have received the request from Joy
Willhamer. Anyone who is interested can send her your testimonial with some
information cantaining the information below. Please identify yourself as a
member of the Pancreatitis Support Network.
Thank you,
Karyn
******************************************************************************
********************
Hi Karyn,
Mark sent youre-mail address, I though that this might be more convenient for
you.
As he probably explained to you, we are looking for some patients who use
our product (Creon) who would be willing to provide information about
themselves and how the use of our product has improved their lives. I
understand from your e-mail that you take Creon and that you have asked for
information from other Network members. I would love to hear your story and
some information about your support network.
The type of information we are looking for is:
A little personal background: i.e., married, children, age(optional),
occupation, hobbies, length of time on product and a statement of how the
use of the product has improved quality of life. After we collect the
information, our production company along with the executives of Solvay will
select a group of individuals and will contact them for an interview.
We will need either a still photo, or they may videotape the interview.
Portions of the interview will be used during our National Business Meeting
in Orlando.
We are trying to bring home the message to our sales team and home office
people that the products they make and sell do have an impact on the lives
of others.
I hate to sound impatient, however, we will probably need to have the
information collected by 11/6. Please e-mail it to:Joy.Willhamer@...
(Willhamer, Joy)
If e-mail doesn't work, feel free to send in the mail to:
Joy Willhamer
910 Sawyer Rd.
Marietta, Ga. 30062
Thanks in advance for your assistance.
Please feel free to call if you have questions.
Joy Willhamer
Solvay Pharmaceuticals, Inc.
770-578-5608
Pancreatitis Support Network
Indianapolis Symposium on Pancreatitis 2000
November 11, 2000

Hi Henry,
Are you taking a laptop with you to the hospital? I am praying they will
give you the epideral so you will be without pain after surgery. She said
they put the morphine pump in after they took the epideral out. Let me know
where I can send a card. Didn't you say you were 29? My youngest son is 28
and I hope he doesn't follow in my footsteps with this disease. A mother's
worse nightmare is having to watch her child suffer. Henry, I know with our
prayers and God by your side, you are going to be fine. We all love you and
wish you a successful surgery and a very speedy recovery....I'll miss seeing
your posts during your stay at the hospital! You did say it had been changed
to November 2nd?
Hugs & Prayers
Carole

Dear Carole,
Thank's for the info. You are relatively close to where I am, and where
my doctors, and hospital is. I'm in Charleston, S.C., and I go to The
Medical University of South Carolina, here in Charleston. My surgeon is Dr.
David Adams, and the G.I. is Dr. John Cunningham. Sorry, but I haven't heard
of Drs. Gavigon, or Hollenbeck, but my docs., probably have. The doctors do
so much referal, and keep in touch. I'll ask Dr. Adams if he knows of them.
It will take me a bit to get back to you on that since i won't see him till
nest week on the day of my Whipple, but when I find out, I'll gladly let you
know. Hope you're feeling O.K., and it's always good to hear from you! :)
Your Pancreas Friend,
Henry
============================================================================

Dear Clare,
WELCOME!!! This is a wonderful, warm, sincere, group of people affected
with Pancreatitis, and you should find much support, and friendship here!
Please keep posting, and lots of nice people will reply. Sounds like you've
been through a lot of grief with your pancreas, sorry you're suffering with
this disease, but again, we are your new pancreas friends, and I think
you'll find the support here helpful as you go through the trials of Chronic
Pancreatitis. Look forward to hearing more from you! :)
Your New Pancreas Friend,
Henry
============================================================================

Micheal,
That's how my problems started,although not stones. My gallbladder removal
was my first surgery and was diagnosed with chronic panc 8 years later.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Anna,
Did you go see Tammy? If so how is she? I haven't heard anything
from Steve and I am sooo worried about her! I will try to call her
tomorrow. Get back to me when you can Thanks Anna.
Becky (Indiana)

know the pain I have is pancreatitis because it's the same pain I had 14 years
ago when I was hospitalized for Acute Pancreatitis with a pseudocyst. I've had
attacks since then but most of the time they diagnosed it as IBS and didn't
check my pancreas. Once you have one attack, I don't think anyone can forget
that kind of pain.
Hi Carole. Is the doctor you are referring to a gastroenterologist? That is
the type of doctor you should be seeing. Very often, doctors who have little
experience with pancreatitis are stuck with what they learned in medical school
- look for elevated amylase & lipase. This is the easy tool the docs learn in
med school to help them diagnose gall bladder & pancreas disease. The more
experienced docs know better.
I have lost weight. I didn't have the prescription filled. He can't seem to
understand that my appetite is fine. I just can't eat whenever I'm having an
attack! The attacks have come more often in the past 6 months and last at least
two weeks. Is that a pattern with this disease?
The antidepressant may help with pain control. Doctors have found that
antidepressants will make the pain meds work better. As for frequency &
duration of attacks........ we're all different. Some have brief attacks that
are spaced weeks or months apart. Others of us have pain every day.
Hope you're having a comfortable day.....
jang

Dear Christine,
Yes, unfortunately many doctors seem to have it in for all patients who
present with pancreatic symptoms that they are drinkers, or alcoholics even
when that is not the case. So good for you standing up to them! I've had
this prejudiced view thrown in my face before at the little community
hospital close to my home when I got sick at work about six years ago. The
doctor attending at the E.R., and subsequently his nurse were very rude to
me, and insisted that I had to have been drinking, when I had spent the
prior seven hours hard at work at the nearby newspaper office. Finnally, I
had enough of their condesending, sarcastic attitude, and being in pain, and
I told them to put up or shut up. In other words do a blood alcohol test
immediately. That of course came back negative, and I also told them if that
wasn't satisfactory, as they said that i caould have been drinking yesterday
- not!, They should do a liver profile, which for a regular drinker would
show irregularities. They did both end up treating me, and admitting me,
since I couldn't get to my regular hospital at the MUSC downtown Charleston.
They both gave me an apology, and changed their tune. So good for you for
standing up for yourself. A lot of people I've spoken with others about this
problem in our local Pancreas Support Group, and some of them unfortunately,
just took the abuse in fear of not getting treatment. I told them to request
this bloodwork if this ever happened to them again. The true problem
drinkers will sooner or later be found out, you can't hide from a blood
test, or liver profile, and the folks who have pancreatitis for the other
medical reasons, divism, gall bladder, stones, et al, will come out clean on
testing for alcohol abuse. I thank God that I never had a drinking problem,
because it would compound the pancreatic damage I already have, and also do
liver damage. Several years ago when I was in the hospital at MUSC, I made
the aquantence (sp.) of a lady in her 50s, who had a bad alcohol problem
with cirrosis (sp) of the liver. She drank while in the hospital, and was of
course caught. Very sad, I have heard she has since died of cirrosis of the
liver.
About the problem of being too alert, and/or uncomfortable while
undergoing an ERCP, it is a frustrating situation, and I empathise with you.
Some people have full-blown panic attacks, or a bad feeling of
claustophobia, while awake. Some of us just have a high tolerance for the
meds used to put you into the twilight sleep that is optimum for the
procedure. Did you see where I told Michael the system I worked out with the
anesthesiologist to communicate that I needed more Verced, or Demerol? I
tapped two fingers, to indicate that I was too awake, and please push in
more meds. This works up to the point where they can't legaly give you
anymore. How many ERCPs have you had so far? Are you scared to go in for
more because of the esperience you related to me of being awake? Did you
feel too much pain? Well, just let them know ahead of time of your concerns,
and they should be very understanding, and try to make the experience less
stressful for you. I hope the next one goes better! incidentally, they
changed my surgery date from this Mon. Oct. 30 to Thursday Nov. 2. Can't
wait to get it over with and hopefully start feeling better! :)
Your Pancreas Friend,
Henry
============================================================================

such a procedure, should it be ordered. Such interesting new things I have to
look forward to.
Hi Michael. Please don't get too worried about suffering through an ERCP. Talk
beforehand with the doc doing the procedure & tell him about your high
tolerance. You are constantly monitored during the procedure & will be given
enough drugs to get you through it without suffering. High doses of drugs can
be given because they are given IV with the doc right there. There isn't much
concern about overdosing because reversal agents are always kept right at hand.
Sometimes this procedure causes an attack of pancreatitis afterwards.
Prior to the ERCP, be sure you discuss pain control for the recovery period
after the procedure. I'm sure you will do just fine. Keep us posted on how you
are doing.
jang

I am new -- my name is Clare -- have had over three years of acute and
chronic pancreaitis problems since the removal of my gallbaldder -- I am a
non drinker so the pancreatitis is ideopathic -- maybe gentic link --people
with diabetes on paternal side but I do not kknow if that is a related factor
-- have been on Disability for a year and getting ready to work again but
afraid i wont be able to handle it -- have not put a week together in a long
time -- mentally work is the best thing but not sure the body will cooperate
-- but if it does not work out i can return to disabilty ---sold ins 10 years
ago and bought a policy for myself -- best thing i ever did -- i have a
dorsal column stimulator at T-7 with a electrodes and a battery in my hip to
to help control the abdomenal and stabbing back pain -- I had 3 ercp 's all
giving me acute pancreatitis at two of them they cut my sphincter of oddi so
i have a dysfunctional biliary tract -- the the stimulator has kept me out to
fhte hosp since march -- had anerve block that gave me a hoorible flare and i
lost 30 ponunds -- can lose the weight but not he preferred method -- I gain
ed some back and my enzyme levels are never high unless i have an acut en
attack which so far has always been brought on by the procedures they have
done to me -- so my pain Dr. is my best ally -- i stilltake vicodin and
Zofran for nausea and pain everyday and they may put a sencond lead in in my
back for more pain coverage -- just been a hard road an most hosp stays i
have been on my own directing my care while being hook up to morphine pump
and NPO to let things settle down -- of cours ethe more stress then it gets
worse but life is stress so no way to get rid of that -- find that you have
less friends they get sick of the person who is always coming or going to the
hospital and gettting some Doc's who make you think its in your head --- I
would like them to just spend one week with what i deal with and that would
shut them up -- my pancreatic specialists wants me to go to houston to a
motilily expert named Dr . Mathias a t Columbia Hosp for women -- supposedly
he sees eople from all over the with similar stories -- was suppose to go Nov
13 -14 but need to postpone -- need glucose tolerance test first and then he
does an electrogatrogram -- sort of like an ECG but for the GI tract --
afraid he will leave me feeling like they cant be sure and that always messes
with my head. Not sure the journey is worth it -- will it do more harm than
good --no way to know --My Dad is a retired surgeon with Parkinsons and i
manage his and my mothers care --she has dimensia and is bipolar --- so i can
see thing sfrom doc side but i ask a lot of questions and they dont like that
but I do it anyway and if they are not willing to come down off there
pedistal then they are not worth it. Anyway --sorry to be so whinny , but
trying to tell my story -- i think you get the picture -- glad to know there
others to bounce things off of -- and share the painful winding road
Take Care, Clare

In a message dated 10/26/00 6:12:36 PM Eastern Daylight Time,
CJWatts88@... writes:
<< lain
Hi Jang,
Thanks for the explanation. That makes sense to me. Of course, my doctor
says they would be elevated if I had pancreatitis but I know the pain I have
is pancreatitis because it's the same pain I had 14 years ago when I was
hospitalized for Acute Pancreatitis with a pseudocyst. I've had attacks
since then but most of the time they diagnosed it as IBS and didn't check my
pancreas. Once you have one attack, I don't think anyone can forget that
kind of pain. My primary doctor gave me medication (antidepressant) to help
my appetite since I have lost weight. I didn't have the prescription
filled.
He can't seem to understand that my appetite is fine. I just can't eat
whenever I'm having an attack! The attacks have come more often in the past
6 months and last at least two weeks. Is that a pattern with this disease?
For years I didn't have that many attacks so I didn't worry about it as
much.
I know your wisdom has come from your experiences with this disease and I
want you to know I really appreciate you being the compassionate individuals
you are and being there for so many of us. I hope you are doing well and
having a pain-free day.
Hugs & Prayers
Carole
Hi Carole, I just read your reply to Jang and I am so sorry that your attacks
are increasing. Mine increased in 1999. Did you tell me if you are a
diabetic? Are the attacks more painful now or less than before? I wish I
could do something for you. When your doctor doesn't get it that you are
having an attack even though your counts are not up do you tell him that you
are having an attack and the counts don't have to be up to have one? Doctors
think they know so much but they don't. Especially about the pancreas. I
think every doctor should have at least one panc attack. Then they would
understand what an attack is really like. I realize that was very mean of
me. I feel ashamed already. But it just makes me so mad to see people
suffer and have to put up with a doctor who doesn't have compassion or know
his stuff. There is no excuse for them not knowing the whys and how's of
this disease. OK, I have said enough. I am finished. It's OK I am not
dangerous. LOL
Take care Carole, Shirley

In a message dated 10/26/00 6:12:15 PM Eastern Daylight Time,
CJWatts88@... writes:
<<
Hi Shirley,
What did the doctor say about your arm? Didn't you have a doctor's
appointment today? Hope he was able to help you.
Hugs & Prayers
Carole
Hi Carole, yes I had a doctors appointment today. The doctor has scheduled
another ultrasound for my arm. The last ultrasound I had was negative for
clots. The technician who did the last ultrasound only did the arm from the
elbow up. The doctor wants this ultra sound done on the entire arm. I am
glad since my arm is swollen from the elbow to the wrist and sore and painful
from the elbow to the shoulder. I have to be at the hospital early in the
morning. The doctor wants me to continue with the hot compresses and to
continue taking the coumadin. I don't feel comfortable taking the coumadin
since my surgery is coming up. I am going to do everything she tells me to
do though because I have to have this arm healthy for the surgery.
How are you Carole? Are you feeling any better? I think about you often. I
think about so many in the group often. I worry about so many of the
members.
I am looking forward to having my surgery over with so I can go on with my
life. I hope nothing stands in my way to have it. I still don't have ins.
approval. Removal of the panc has already been approved but the islet cell
transplant has to be review by a board of doctors. It is considered a
transplant. If they turn me down then I guess we will have to start fighting
them with my husband's pension board.
Let me know how you are Carole. I really want to know how you are. Shirley

Hi Shirley,
What did the doctor say about your arm? Didn't you have a doctor's
appointment today? Hope he was able to help you.
Hugs & Prayers
Carole

In a message dated 10/26/00 5:19:01 PM Eastern Daylight Time,
jang2@... writes:
Hi Jang,
Thanks for the explanation. That makes sense to me. Of course, my doctor
says they would be elevated if I had pancreatitis but I know the pain I have
is pancreatitis because it's the same pain I had 14 years ago when I was
hospitalized for Acute Pancreatitis with a pseudocyst. I've had attacks
since then but most of the time they diagnosed it as IBS and didn't check my
pancreas. Once you have one attack, I don't think anyone can forget that
kind of pain. My primary doctor gave me medication (antidepressant) to help
my appetite since I have lost weight. I didn't have the prescription filled.
He can't seem to understand that my appetite is fine. I just can't eat
whenever I'm having an attack! The attacks have come more often in the past
6 months and last at least two weeks. Is that a pattern with this disease?
For years I didn't have that many attacks so I didn't worry about it as much.
I know your wisdom has come from your experiences with this disease and I
want you to know I really appreciate you being the compassionate individuals
you are and being there for so many of us. I hope you are doing well and
having a pain-free day.
Hugs & Prayers
Carole

Sorry, but I couldn't agree more. Most people with pancreatitis can tolerate
absolutely NO alcohol............
jang

Mine was elevated whenever I had Acute Pancreatitis, but with Chronic, the
levels stay within normal. In fact, in my last blood test, my level of Amylase
was only 16 with normal being 0-199 which I find very strange. I don't
understand and hope you can shade some light on this for me.
Hi Carole. After a while the pancreas "burns out" & stops putting out the
digestive enzymes (amylase & lipase). That's why you need the enzymes when you
eat; first to act as a "feedback", to fool the pancreas into thinking there is
enough amylase & lipase so it doesn't need to supply more, & 2nd to supply the
enzymes needed for digestion when the pancreas is no longer able to produce
enough. Wish I could expain this better, maybe some one else can.......
jang

Hey, Michael, you're one lucky guy! Gallstones are a very common cause of
pancreatitis. For the vast majority, removal of the gall bladder is the end of
pancreatitis & onward with life-as-it-used-to-be. I hope you are part of that
happy majority & have no further experience with pancreatitis.
jang

Congratulations on your excellent grades, Steve. With all that you are going
through, your good grades are truly awesome! Now, if only Tammy would feel
well..............
jang

I am 39 years old. I have worked for 18 consecutive years non-stop.
I was a deputy sheriff in Tampa, Florida for ten yaers. I have been a
juvenile probation officer in Arizona for the past eight years until
October 17, 2000, when I finally had to call it quits because of my
pancreas. I had been working non-stop since 1982.
My health has deteriorated over the years to the point that my nausea
and pain are no longer bearable. In 1986, I was told that I had
hypertriglyceridemia as my trigylcerides were consistently over
1000mg/dl. Unfortunately, I was allergic to Lopid, so I couldn't take
that to lower my lipids. In 1996, my gallbladder had to be surgically
removed due to fatty infiltration. My doctors told me my years of
very high triglycerides caused my gallbladder to become badly diseased
and to only pump at 17% of capacity.
In 1998, I had to go into the hospital for my 1st attack of acute
pancreatitis. After my 1st attack I have had to go in the hospital
gradually more and more often. I am now taking Tricor which helps to
lower triglycerides, but it's too little too late. I have chronic
pancreatitis.
Also, in May of 1999, during one of my hospital stays for an acute
attack of pancreatitis, an endoscopy was done on me. The results
showed I have Barrett's Esophagitis which is a pre-malignant disease.
Those of us with Barrett's are at a lot higher risk of getting cancer
of the esophagus. It was also discovered that I have a hiatal hernia.
My doctor decided that it would be a good idea for me to have a
fundoplycation which is a surgical procedure wherein the stomach is
wrapped around the esophagus tightly in order to decrease acid reflux
and also hopefully to decrease my chances of developing cancer of the
esophagus.
This operation took place on November 1, 1999. During the surgery,
however, because of the chronically inflamed state of my pancreas, the
tail of my pancreas hemorrhaged. I developed A.R.D.S. (Adult
Respiratory Distress Syndrome). I had to be flown to Tucson Medical
Center. My oxygen saturation was critical. It was 35%. I was put on
a ventilator as I was no longer able to breathe on my own. My wife
was told I probably only had about a 10% chance to live. I had to
have two blood transfusions. After 14 days on that ventilator, I
miraculously began breathing on my own again. To this day, my
pulmonologist cannot explain why I started breathing again. I went
home finally at the end of November 1999.
A couple of weeks later, in December 1999, I was back in the hospital
with another acute attack of pancreatitis. During the week of July 4,
2000, I was back in the hospital with another acute attack of
pancreatitis. On October 14, 2000, I went back in the hospital with
yet another acute attack. The pain was severe as always, and this
time I started vomiting at 11:30am on 10-14 and didn't stop vomiting
until 9:00pm that same date. While still in the hospital on the night
of 10-16, I stopped breathing, again. All I remember was falling
asleep in my room and partially waking up and seeing figures hovering
over me. I heard one lady yelling at me, "Breathe Chris breathe!" I
woke up in I.C.U. on the morning of 10-17. I just stopped breathing
and they had to give me CPR.
That same day my doctor visited me. He told me my amylase and lipase
were both at about 1/6th of normal. I asked him what that means. He
replied that my pancreas is almost totally burnt-out. It's not
producing enough digestive enzymes anymore. He added that without a
transplant I've only got about three years or so left to live
probably. Unfortunately, transplants are only 50% successful. For
the pain I've been taking methadone which makes me groggy to the say
the least. Sometimes I have to go to the hospital to get demerol
shots in my rear end. My doctor recommended I go out on disability
given all my circumstances. I agreed with him, and, quite frankly, my
poor health did not give me any other choice.
I'm worried for my family, financially. I've heard horror stories
about how it's almost impossible to get disability for chronic
pancreatitis, but by the same token I have no other choice but to try.
Also, I am a state employee. Is it easier to get disability through
the state or social security? I have also been told by some that my
18 consecutive years of employment will work against me instead of for
me. That makes no sense to me. Could someone please shed some light
on that too? Any help at all will be greatly appreciated.

Hi Henry,
I thought I would respond to two topics with one post. The first is
that you are totally right about the alcohol. When I first went in
the er in March with levels of over 9000, they would not believe that
I don't drink at all. After the third degree from 5 doctors, I
finally got angry and told them a few things. The last doc took note
and didn't ask me :-} Sometimes you gotta do what you gotta do.
The second thing is that I was awake during this last ercp and it was
a very weird experience. I knew when they were chatting and when
they were talking about the procedure, but I was not coherent enough
to say anything. Very strange experience I must say. Anyway, that's
all I needed to say.
Be well,
Christine

I'm kind'a new to the group, but have had chronic pancreatitis for about 10
years. Dr. Howard operated on me last year and he is wonderful. He took only
part of my pancreas out, and then reconnected the rest of my innards. I have
had a few problems since the surgery, but compared to what I had before it,
I'm on easy street. Dr. Howard is quite and reserved, but extremely good.
Sportbroad-Becky

Thanks Julie I am glad that I could help alot of people since all of you help
me every day.. so it is nice to be able to do the same...hope you are having
a good day
Wishing you all a pain free day
Anna from Michigan

In a message dated 10/25/2000 5:27:15 PM Eastern Daylight Time,
mrsteep1@... writes:
<< Thanks Henry I am glad that I am of some use.. my brother told me the
last time I was in the hospital when I was there for 3 weeks and told
him I missed my puter the most he said that hospitals should have
something for you to rent there that someone could make a million by
doing that well that got my mind going and I called the rent a
center and sure enough they do have it.. so the next time I am in the
hospital you know what is going with me... I am happy that I could
help.. good luck and you are in my prayers Henry..
Your pancreatis pal from Michigan
Anna
Wow Anna! I agree......what a great idea!!!! You just helped a lot of
people lady!!! And we thank you. :)
Julie

Hi all,
Thanks again for all of your support. Yes, I do have sphincter of
oddi dysfunction. When they went in the second time, they found
another stricture higher up in the duct and put in a longer stent.
The doc says that she hopes the blood will go away because they do
not want to do anything else to me.....but they can do an endoscope
when they take the stent out. Thanks for the info about the color of
the blood. I didn't know that, and it helps to ease my mind. Well,
so far they have inserted the PICC for the tpn twice and it is in the
wrong place! They say three times is a charm, eh? Well, I hope your
day is pain free today.
Be well,
Christine

Hi all,
Is the Whipple the surgery where they bypass the pancreatic duct?
What is the prognosis with this procedure?
Thanks,
Christine

Hi rrh,
My name is Anna welcome to the group sorry that you have to be
here, this isn't a fun disease at all, but you have come to the right
place I am fairly new here too but this group has alot of wonderful
people that care and try to help in any way they can. As far as you
having a glass of wine, all the doctors have told me no and my
brother has this too and when he first had it he didn't think it
would hurt him but it only took one time for him to realize he was
wrong he ended up right back in the hospital, so I never even about
it at all, when I was in the hospital for my 3 week stay there was a
guy that came in with pancreatitis and was having an attack and it
was brought on from drinking he got out and less the 4 days he was
back in cause he drank again, I to this day don't understand that at
all since I wouldn't want to do something to bring on this terrible
pain. So enjoy your vacation and don't drink or it will be cut
short.. good luck
your pancreatis friend Anna From Michigan

In a message dated 10/25/00 8:49:18 PM Eastern Daylight Time, rhh88@...
writes:
<<
Recently diagnosed with Acute Pancreatitis. Inflammation has only
decreased 1 cmm in five weeks. Unsure what has caused it, so my
major concern is, is a glass of wine contraindicated in this
situation. I am going on vacation, and would enjoy a drink with
dinner, but it is not absolutely necessary if it is going to
aggravate this diagnosis. Would love an answer or resource re
alcohol and pancreatitis!
Sorry absolutely no alcohol. Don't do it, it will ruin your vacation.
Shirley

Dear rhh88@...,
Hi! and welcome to this Pancreatits Support Network egroup! My name is
Henry. What's yours? I'm not a doctor, or nurse, just a Chronic Pancreatitis
patient of eight years, but any reputable, competent doctor, nurse, or
anybody who knows anything about Pancreatitis, accute, or chronic, will tell
you to absolutely abstain from putting ANY alcohol in your body.
Pancreatitis, and alcohol are like gasoline, and fire, an explosion waiting
to happen. Please don't take that glss of wine on your vacation, or you
might end up in a hospital room for your vacation. Regardless of what caused
your acute inflamation, alcohol will make you as sick as a dog, or worse in
some cases. I'm fortunate that I didn't have an alcohol problem, but the
hospitals here in Charleston, S.C., are full with people who can't control
their drinking, and end up causing themselves often irreparable pancreatic
damage. If you don't believe me, just ask anyone else here, or your
doctor(s), or nurse. I'm kind of surprised that they didn't spell the
importance of complete alcohol abstinence to you when you were recently
diagnosed, but nevertheless, it will get you sooner or later. The Pancreas
is very sensitive to alcohol, especially an inflamed one. Look up accute
Pancreatitis in a medical dictionary at the public library, or ask our
group founder, and leader Karyn, she's an R.N. Don't mean to be too
dramatic, but it's that serious. Save yourself a lot of pain, and enjoy an
alcohol free life from now on.
Your New Pancreas Friend,
Henry Williamson
============================================================================

I figured out how to post messages -- sorry for being so cyber -

Dear Carole...apparently what we're going through is not uncommon...the same
thing is happening with me and my amylase & lipase levels ever since my last
attack in June, which left me with chronic pain as well as diabetic...since
then, I've been back to the ER with awful pain 3 times, and my levels were
normal, or only slightly elevated. Peculiar indeed...I'm not sure what the
deal is with that. Well, just wanted to share. Hope y'all are having a pain
free day!!! STAY WELL!!!
::hugs::
Dave Lowell : ) ~

Dear Michael,
So it looks like the're going to yank your gallbladder. I've met a good
number of people at our "Pancreatitis Partners" meetings at MUSC here in
Charleston, S.C., who've had this as a contributung factor, or primary cause
of their pancreatitis. The good news is that many I've spoken with have had
significant improvement after removal of the gallbladder although some have
continued to have problems. Like they say, everybody is an indivdual case.
As for your high tolerance to drugs, I'll tell you the only thing that has
helped me (sometimes) is that since I'm a "frequent flyer," with the ERCP
team, and they know me well, I worked out a system of communcating with the
anesthesiologist of when I needed more "juice," if I was too wide awake.
Since you obviously can't talk with this tube down your throat, I told him
that if I tapped my fingers, I needed him to push in more Verced, or
Demerol. This will work up to the point where they say you've reached the
max, and they can't legally give you anymore. Unfortunately, for us folks
with a high tolerance, that's the best there is, but at least you can have
some control this way. I do hope that your ERCP experience isn't too
uncomfortable for you. A few times, I have gotten sleepy enough to block it
out, but most of the time I'm awake and feeling them poking around, It seems
to be worse if they're trying to get a stone out, than a stent placement, or
sphinterotomy. I'm glad that you're not in bad pain now, like you said
that's hard, and it seems like the minutes move like hours. Just don't psych
yourself out into being convinced that it's going to be a bad experience.
You may be pleasantly surprised, and snooze right through it I hope! Please
keep me posted on how things go for you. I'll be praying, and pulling for
you. Good luck my friend!
Your Pancreas Partner,
Henry

Recently diagnosed with Acute Pancreatitis. Inflammation has only
decreased 1 cmm in five weeks. Unsure what has caused it, so my
major concern is, is a glass of wine contraindicated in this
situation. I am going on vacation, and would enjoy a drink with
dinner, but it is not absolutely necessary if it is going to
aggravate this diagnosis. Would love an answer or resource re
alcohol and pancreatitis!

Dear all;
Looks like my preliminary tests indicate gallstones, causing an acute
pancreatitis attack. Recommended removal of gallbladder.
Anyone else had this as cause of attack?
Just a quick note. Gotta go to work.
Michael Lockridge

Thanks, Henry.
Pretty much as I pictured it. I am still waiting on a report from my GP, who
has not yet even received the report on my ultrasound. So, I have not yet had
a referral for anything more. If it always takes this long to get information
back, I am most thankful I am not in much discomfort. Such waiting while in
pain must be terrible.
My ridiculously high tolerance to drugs will certainly not serve me well
under such a procedure, should it be ordered. Such interesting new things I
have to look forward to.
Michael Lockridge

--- In pancreatitis@egroups.com, Oliver Williamson <howmtp@h...
wrote:
Thanks Henry I am glad that I am of some use.. my brother told me the
last time I was in the hospital when I was there for 3 weeks and told
him I missed my puter the most he said that hospitals should have
something for you to rent there that someone could make a million by
doing that well that got my mind going and I called the rent a
center and sure enough they do have it.. so the next time I am in the
hospital you know what is going with me... I am happy that I could
help.. good luck and you are in my prayers Henry..
Your pancreatis pal from Michigan
Anna
======================================================================
======

Dear Shirley,
You bet! You will be in my prayers, and all of the good folks here on
the network as your surgery time approaches, and arrives. You are loved, and
respected by all who know you! God will be with you, Just remember when
surgery date arrives, think of all the prayers being sent up for you, and it
should provide you some comfort, and reasurance! :) We're all with you, and
behind you. How's that arm?
Your Pancreas Friend Always,
Henry
============================================================================

Dear Anna,
That's an ecellent idea Anna! Thank you for thinking of me, and sharing
that idea! Now let's see if I can stick Blue Cross with the bill! hmmm... :)
No, seriously, I think that's the smartest thing I've heard in a long time,
you are very clever to think of that. I'll have to check it out.
Your Pancreas Friend,
Henry
============================================================================

Dear Jang,
Nope. That would be great if hospital rooms came with optional web-t.v.!
:) Somebody could make a fortune offf of that. Wish i had a laptop to keep
in touch w/you guys, and pass the time.
Your Friend,
Henry

Hi Andre',
Did the doctors have an explanation as to why your levels didn't increase?
Mine was elevated whenever I had Acute Pancreatitis, but with Chronic, the
levels stay within normal. In fact, in my last blood test, my level of
Amylase was only 16 with normal being 0-199 which I find very strange. I
don't understand and hope you can shade some light on this for me. Hope you
are feeling well, Andre', and thanks for the help you've given to me and
others in this group.
Hugs & Prayers
Carole

Hi Diane, what are you using the propulsid for? Is it for gastroparesis? does
it help everything go through faster? If so my doctor has me on erythro est
which I a liquid form of erythromycin. it works for me. If I am bloated or
have eaten too much it makes it go right through. I hope this helps. Jim s

Hi dawn, I just read your post on leg numbness. What knid of numbness? the
past two weeks the upper outside of my thigh has become numb. I wonder if it
is related somehow. Jim s

Hi Henry,
I live in Gastonia, North Carolina. My Gastroenterologist and Surgeon are in
Charlotte, NC. Have you ever heard of Dr. Gavigon (GI) and Dr. Hollenbeck?
I'll call my sister-in-law to get the name of her surgeon here in Gastonia.
Since he does Whipple operations, I'd be interested in finding out if your
doctor knows him. I don't normally go to the doctors or surgeons here (only
in Charlotte).
Hugs & Prayers
Carole

Good Morning Henry,
I'm pretty sure Shirley's surgery is scheduled for December 8th. She is such
a sweet lady and I pray that her surgery will give her a better quality of
life. Everytime I hear about you and Shirley, I feel guilty for complaining
since my condition is good compared to you and Shirley. Sometimes whenever I
want to have a "pity" party for myself, I think about you two and I feel
ashamed of myself. I know that one day I could be in your shoes and I pray
for the strength to bear whatever comes my way. This disease is so
unpredictable, it's no wonder it's hard to find a doctor dedicated enough to
listen. So far, Darvocet works for me during an attack and I feel so
blessed. I just wish I could do something to help you, Shirley and all the
other members in this wonderful group.
I failed to tell you that my sister-in-law also had to have some of her
stomach and intestines removed as well as the head of her pancreas during her
operation. She had a lot of prayers from our church, other churches, family
and friends plus a very well qualified surgeon here in Gastonia. Sounds like
you have the same faith in your surgeon. Henry, take care of yourself and I
will be waiting to hear from you after your surgery. I'll be praying for you
and I'm sure you are going to be fine. I'm trying to think of the name of
the surgeon here, but I'll have to ask my sister-in-law. Your surgeon may
have heard of him. Most of the time, we see specialists in Charlotte rather
than here. I hope he will consent to giving you an epideral so you will be
without pain after surgery, too. Didn't you say you live in Charleston, SC?
My husband has an uncle who lives there....I love the beautiful old houses
there.
Hugs & Prayers
Carole

In a message dated 10/23/00 9:32:42 AM Pacific Daylight Time,
DOTDOTONE@... writes:
<<NEW YORK, Aug 01 (Reuters Health) - Long-term inflammation of the pancreas,
or chronic Pancreatitis, can be treated with a minimally invasive operation.
In patients who received the treatment, pain decreased by over 50%,
researchers report.
Dr. Anthony N. Kalloo of the Johns Hopkins Hospital, Baltimore, Maryland, and
colleagues examined outcomes of 55 patients who had endoscopic pancreatic
Sphincterotomy (EPS) performed between 1992 and 1996.
<< my daughter had this done it has decreased her attacks down to 3 this
year
instead of 10 to 15 a year it has only been 1 year so far but hope is up
and
fingers are crossed. se ya later dot & krystal
Hi Dot and Krystal,
Thank you for sharing this information. There is a wealth of information
available. Of course, the interpretation of the articles is another thing.
Half of the articles flies over my head, but at least it gives me a sense of
security that research is continuing to be done, and it helps me to format
questions for when I visit my doctor.
Thanks,
Karyn
Pancreatitis Support Network
Indianapolis Symposium on Pancreatitis 2000
November 11, 2000

Hi everyone,
Karyn asked me to upload some jpeg images of the brochure for the
Symposium, in case any of you would like to see what they look like.
You can find them by going to the egroups pancreatitis website, then
click on "Files". There are 3 jpeg images: the front-side of the
brochure, the back-side of the brochure, and front/back of the
registration post card. These are rather large files, so they may
take a while to download.
One change has already been made to the "lineup" of speakers.
Originally, Dr. Stuart Sherman was going to speak, but then he had a
scheduling conflict. Dr. Evan Fogel agreed to take his place, but the
day after the brochures were printed, he informed Karyn that he too
was unavailable that day. So now Dr. Glenn Lehman is going to fill
that slot. The other speakers include Dr. Thomas Howard (surgeon);
Ann Kochell (Nurse Practitioner who works w/ Dr. Sherman); Dr.
Randolph Lievertz (pain management specialist); Dr. Dmitri Arbuck
(speaking on "complementary" medical techniques, such as accupuncture,
use of herbs/dietary supplements, etc). We think we will also have
one of the doctors who works with the islet cell transplant program at
IU as a speaker.
We've sent out most of the 1,000 brochures to area hospitals and
clinics here in central Indiana, so now we're just hoping/praying for
a good turnout on Nov. 11.
Hope everyone is having a good day.
--Tull

Hello,
This email message is a notification to let you know that
a file has been uploaded to the Files area of the pancreatitis
group.
File : /Pancbr1.jpg
Uploaded by : KarynWms@...
Description : Front side of 3-fold brochure
You can access this file at the URL
http://www.egroups.com/files/pancreatitis/Pancbr1%2Ejpg
To learn more about eGroups file sharing, please visit
http://www.egroups.com/help/files.html
Regards,
KarynWms@...

Dear Carole,
Thank you so very much for your kind and thoughtful post wishing me well
on the Whipple. Your sister-in-law's story is quite remarkable, as so many
don't survive cancer of the Pancreas, but she did, as well as Terri L. in
this group! How inspiring. :) I will inquire about the epideral, I had one
once years ago, pre Panc. whilew having a tumor removed from my groin area,
and they do indeed block out all sensation. So thank's for that good
suggestion! It can't hurt to ask!
I'll be praying for dear Shirley as well. Do you know exactly what date
her surgery is? I'd like to know. Thanks!
Your Pancreas Pal,
Henry

Hey Again Carole!
I forgot! Yes i do live in Charleston, S.C. Where are you from? S.C.?

Hey Irv! Welcome to a really good group which will provide a lot of support,
sympathy, and prayers. You've joined a great e-group for C. Panc survivors,
and their caregivers-families, friends. Keep posting, and ask lots of
questions if you like! Hope that pain gets better! The poo is another story,
that seems to go on a looong time, mabe more enzymes?
Your New Panc Friend,
Henry
on 10/22/00 1:53 PM, COLONBLOW@... at COLONBLOW@...

Hey Terri,
What a nice surprise it is to recieve your post, and learn that you are
a fellow South Carolinian!:) That's so cool, it's amazing what a small world
it really is, and It's nice of you to tell me this! I know exactly where
Rock Hill is, and have an uncle who is a Methodist minister living there, as
well. I was really surprised that you had been through Mt. Pleasant, as it's
not a place that a lot of people travel to, but you were probably traveling
down Hwy 17 on your way to the "Fun & Sun," in Myrtle Beach. The Grand Stran
is really a great place to spend a Summer vacation. Tourism provides so much
money, and many jobs to the area. How nice that you had a pleasant stay, and
where able to be there for your Grandmother's 80th Birthday! I'm so happy
and glad for you that everthing worked out so well with your nerve block to
help you enjoy your trip fully! What fun! You deserve some fun, and a time
to enjoy a pain free trip! Do you get to travel back to S.C. very often?
Texas must be very different from S.C. I've only been to Texas one time, and
unfortunately, I was way too young to remember it. Ironically, my mom tells
me we drove through Dallas one or two days before J.F.K. was assasinated on
our way to Birmingham, Ala.
How did your Whipple experience go? Sorry, if you've already told me, my
memory is equivalent to a 90-year-old. The longer I've been on the Narcotic
pain meds., the more trouble I've had with short-term memory, do you
experience this also? I hope my Whipple works great, so I can cut down, or
even quit taking this dope before my memory is completely shot. Where did
you have the Whipple, in Texas? How long were you in the hospital
recovering? What was your pain level like? Was it worth going through, were
you satisfied with your results? I go in next Monday for the Whipple, so I'm
curious about recovery, that's the biggest thing on my mind now. I hope
you're feeling well now! Please do come to one of our meetings if you're
ever down "back home," in South Carolina, when there is one. We used to have
them every month, but now it's every three months. Well, thank's again for
the S.C. update! That's just really neat!
Your Pancreas Partner & Fellow S.C. Friend,
Henry Williamson
============================================================================

In a message dated 10/24/00 8:32:54 PM Pacific Daylight Time, Tll619@...
writes:
<< Steve,
My heart is heavy for the pain you, Tam and the children are having to go
thru. I pray the two new doctors can find something to help Tammy. Please
know that you are all in my prayers daily. I haven't been on lately so I'm
just catching up. Hang in there and thank you for being such a wonderful
husband and father!!!!
Terri L.
Terri L.:
Thank you for the prayers, and the kind words. I don't think I'm a wonderful
anything just doing what I feel in my heart. I always go back to my vows "For
better or WORSE" Thank you though, and please know you and everybody are also
in our prayers.
Your friends Tam & Steve

Dear Adrienne,
Hi! I was so glad to see your post! I was afraid my other post didn't go
through, and like you, I've not been able to get to the cpt. the past few
days, a minor Panc. flairup, and I'm having trouble regulating my blood
sugars with the TPN. My Diabetes has gotten worse since the last time I was
on TPN two years ago, so anyway, This is a long post, so you might want to
read it in separate parts? I couldn't remember your name, and I did really
want to welcome you to the group, and introduce myself as another satisfied
patient of Dr. Adams. I'm glad that you like him also, and I hope that he
can help you in any future surgeries you decide or have to have. He did my
Puestow two years ago, isn't that what you stated that he did on you? Well,
he's going to do the (D.W.) dreaded Whipple, we jokingly refer to it as in
the Pancreatitis Partners group. :) I go in the hospital Moday, Oct. 30, and
I guess it will be a Halloween surgery! Wonder if I should wear a costume?
:) We talked about the total Pancreas removal, he's been doing that for
quite a while, knows Dr. Sutherland and that's good, but I decided that
being a Diabetic already, I'd rather do this, then if total removal is
indicated later, I still can have that option then.
How did you find Drs. Adams, and Cotton, from Kansas City, Mo.? I'm glad
you found them because even though you are still obviously ill, these two
are excellent hands to be with. Sometimes, as with many popular doctors it
takes a while to get in to see him, but he tries very hard to keep up with
his flood of patients. I've met people in Dr. Adams' waiting rooms who have
been referred to him from Mayo Clinic, and Johns Hopkins, and they're
supposed to be some of the best in the world, but a lot of times in
medicine, in my humble opinion, it just comes down to the fact that when an
individual doctor is tops, it wouldn't matter what hospital he or she was
working out of, as long as it is a competent hospital, and MUSC is an
excellent facility, which specializes in Pancreatic disease, a fine
individual as superbly talented as Dr. Adams is, with his degree of being
such a genuinely nice, decent, and very likeable, Human Being, makes for a
better overall experience even in a bad situation, such as we all go through
with this extremely frustrating, difficult to treat, disease. Anyway
Adrienne, I get carried away praising Dr. Adams, but I literally owe my life
to his care, and I have complete trust, and comfort in putting my life in
his skilled surgeon's hands. I always enjoy meeting fellow patients in the
group here, but it's especially nice to meet a fellow MUSC alum, and as you
must know Diane, from Tennnessee, is a patient of Dr. Cotton, who I've not
seen as a patient, but am very aware of his equally excellent reputation.
Never have heard anything but great things about him either. For my G.I., I
see Dr. John Cunningham. Have you heard of him? He works with Dr. Cotton in
the MUSC Digestive Disease Center. He has done most of my 27 ERCPs, over
about eight years.
Well, I think he did about 15 of them, and it was a big improvement
switching to him. The other guy who did the others moved to Texas. Dr.
Cunningham is very nice, he has a ponytail, and dresses kinda casually, so
you might remember seeing him sometime when you were in Charleston. Anyway,
after this Whipple, I shouldn't have anymore Panc. Stones, so I hope 27 will
be it!
I'm sorry you can't attend the meetings, as I know that you'd get
something from them, and meet a lot of nice people with Chronic Panc. just
like here! Sometimes, Diane can actually make a meeting from Tenn. She takes
the Angel Flight down, and usually has an appointment with Dr. Cotton lined
up for the same time. Fortunately, she's not had to be in the hospital here
in over a year. We were actually "pen pals," before we had computers, I got
her name at a Partners meeting, as someone with C. Panc., who would
appreciate a pen-pal, so it's been a nice experience making a friend that
way, and especially in our pre-cpt. days to be able to correspond with a
fellow patient.
From what I gathered earlier, and forgive my poor memory, meds do that
to me, more than they used to, your C. Panc. was caused by trama, while
playing baseball, or softball? Adrienne, I don't mean to be nosy, and
certainly don't answer anything that you're not comfortable with, but I'm
always interested in different people's C. Panc. condition, and their
situations, so I just ask all sorts of questions, and am willing to answer
any that are asked of me, I guess having a Chronic disease has made me more
open that way. So here goes:
How long have you suffered with your C. Panc.? What types of procedures
have you had, and what have you found to be the most helpful? Do you have a
primary care Doctor, or G.I. where you live who can handle you through a
regular Panc. attack, with say a week or two in the hospital NPO, and Pain
meds, or do you have to go elsewhere? How would you say your overall health
has held up? Is your pain generally constant, but low grade until you have a
bad attack, or do you have periods where you feel relatively normal until
the attack hits you, or is your pain always there, and pretty bad, but
manageable with the pain meds.? Do you run a low grade fever a lot of the
time? Are you able to work part-time or even full-time? Do you have diabetes
resulting from the C. Panc? and if so, are you on the pills, or 70/30, or
Regular insulin injections? I do the 70/30 for the most part, but the TPN
has made me have to go back to the stronger, faster acting Regular, at
times. Are you on TPN now, or have you been on it during the course of your
illness? How about Pancreas Divism? That's what I have, but I didn't suffer
a trama, like you unfortunately did, and I didn't abuse alcohol. I've met
several patients in the hospital who actually continue to drink with their
disease! I can't understand it. How can they do that when they know it's
going to cause them terrible pain, more time in the hospital, and mabe end
up killing themselves with it? If they want to get high so badly, why don't
they smoke pot, as I've seen others who use it successfully to manage
nausea, I've tried it, and it did help my nausea! It's also somewhat helpful
for pain I've read articles about cancer patients who use it medicinally.
Too bad it's so expensive, and illegal. :( Bummer.
Well Adrienne, I aplogize for this being so lengthy, I'll keep it
shorteer in the future, I just really appreciate knowing you did get my
prior post, and really thank you for wrting back! I wish you peace, and many
pain-free days, and nights! :) I'm glad you found this group, and it's good
that you have this nice group of fellow C. Panc sufferers. Sorry you have
this crummy disease, but keep on writing, and we'll all support one another.
"All for one, and one for all!"
Your New Pancreas Pal,
Henry
============================================================================

In a message dated 10/24/00 5:13:02 PM Pacific Daylight Time,
mrsteep1@... writes:
<< Hi Steve
Just wondered if there was any up date on Tammy, I plan on going to see
her Wed but was just wondering .. and also how are you?? if you need
something call...
Wishing you all a pain free day
Anna from Michigan
Anna:
Tam is feeling a little better. She asked if she could go home today, but
the doc wants to keep her a little longer to monitor her. They put her back
on the fentynal patch. we want to quit using the port so much because of
infection. I am doing OK, very tired though. I got my midterm grades and I'm
getting all A's and B's which is good for all we are going through. Thanks
for asking.
Your friends Tam & Steve

.
Hi Becky! I have a friend that is going into medical school. I
thought about writing him a book of things that Drs. should know,
based on the patient's perspective. I know we all could probably
write a book.
I am so glad that you found a Dr. that wants to investigate! I just
went to a neurologist to see about the numbness in my leg. He tried
to brush me off by suggesting that if I lose weight and not wear
tight pants that it might help. When I told him that I had lost 40
lbs. since April, he said "so you've been trying?" No! I can't
eat! Duh! I wish they would look at the whole body not just one
part. I will be interested in hearing your Dr's thoughts. I feel
like something else is wrong with me or is it all related to the
pancreas! I go to see my primary in Nov. I should start my list
now.
And to think that I was feeling pretty good about all the weight I've
lost. What a way to ruin a girl's day! As I said, I think it was a
brush off. If anything, my hip should be feeling better not worse
with what I've lost. Glad you found someone to listen. Take care
and keep us updated! Your friend, Dawn.

In a message dated 10/24/00 9:00:28 PM Eastern Daylight Time,
jang2@... writes:
<<
Hi Shirley. Sorry your arm is being so stubborn & refusing to heal.
Keeping your doctor updated is the best thing to do. Does the doc have any
further suggestions? Is there any infection & would you need antibiotics?
This is really outside my clinical experience. I work in an emergency
department; we treat 'em & street 'em.
Good luck & keep in touch with your doctors. Let me know how you are doing.
jang
Thanks Jang, I go to the doctor early Thursday morning. I will try to get
some answers then. Shirley

Oh Christine! I am so sorry that you are still battling things! It
is good that they are checking things out though. Did you tell me
that they found sphincter of oddi dysfunction on your 1st ERCP?
I hope that this recent finding turns out to be nothing. Take care.
YOu are in my prayers! YOur friend, Dawn.

Hi Henry. Just wanted to let you know that I will be thinking of you
and praying for you. I hope that this surgery will bring you better
and brighter days with less pain! Your excerpt on ERCP's was kinda
scary! I am glad that I haven't experienced knowing all that with
mine. I always make sure to tell them to medicate me well, cause I
don't want to know anything. I know I've only had 2 though compared
to your 27! Yikes!
Take care and I'll look forward to hearing an update when you have
this behind you! Dawn.

Hi,
Last I heard...I'm hoping to stay in touch with a nurse liason at MUSC on
Henry's updates and I will pass them along to y'all.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

I know that things are overwhelming for you and I cannot know fully
because I've never faced anything so big. Maybe I will have to some
day. I know that I am so sick of this pancreas and I've only just
begun. I will pray that the Lord will give you the strength and the
peace that you need for every day. Trust Him! Your friend, Dawn.

Hi all,
I made a phone call to my pcp yesterday and he told me something I had not
thought about. He would be legally liable if he got me the Propulsid and I
had heart complications. There have been 96 deaths from sudden death of
people on this med. None of his patients are getting it. He truly does not
know what else to do for me. He did say calling Dr Cotton is a good idea,so
I emailed him. I'll call tomorrow if I don't hear back from him. I also had
some bloodwork done today, so we'll see how that turns out. I'll let y'all
know.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

In a message dated 10/21/00 7:48:13 PM Pacific Daylight Time, howmtp@...
writes:
<< Dreaded Whipple
surgery on Oct. 30
Henry, I'll be praying for you for the surgery you're about to have. What all
have the doctors told you to expect? I didn't ask before I had mine. Every
time something different has come up since I keep wondering what else.....and
they don't seem to have very many answers for me. Just today my Endo Dr
increased my insulin. My last block on the 29th of Sept didn't take very well
and I'm back to having the dreadful back pains again. Overall I guess I'm
better than I was before. I wish you luck man and hope everything goes well
for you. A lot of us in the group will have matching belly buttons, or what
was belly buttons, I hear. Just put a dot here and there and it'll look like
a smiley face!! Please keep us informed or have someone let us know.
Praying for a successful surgery and speady recovery.
Terri L.

Dear Anna,
That was very thoughtful of you to mention me in all of the info
sharing. I'm not really as well read as i could be, but you can only spend
so much time with this disease ya know? :) It is somehow comforting to know
something about a disease when it comes into your life uninvited. I fully
sympathise with your sentiments about being fairly new to Pancreatitis, and
feeling scared sometimes, but remember that there are a lot of good folks
here that truly care for and about you as you go through all of this
unwelcome stuff. Jang. Andre', whose suffered for 32 years! and of course
our founder, Karyn, who is an experienced R.N. know a lot more than I do!
The thing about my base of knowlege is that, like you, when i was first
diagnosed eight years ago, I didn't know ANYTHING, about Pancreatitis, and I
wanted to learn. I was frustrated at the time because there wasn't really an
internet, as we know it to be today, the drs. didn't have an hour to sit
down and go over it in detail, in layperson's language, so i wrote to the
center for disease control, and tried my best to plow through the volumes of
medical textbooks at the Medical Unversity of South Carolina, my biggest
help was my surgeon, Dr. Adams, who will be doing my Whipple surgery next
week. FYI. I go into the hospital Mon. Oct 30, and I guess they'll do the
actual surgery Tues, or Wed, post-op recovery for this surgery I'm not
actually certain about. Perhaps, 2-6 weeks was the time frame one helpful
soul in our support group mentioned. Dr. Adams says it depends on various
post-op complications such as pumonia, infections, et al. You asked
specifically about what this Whipple surgery is I believe.
Well, given that I'm not a doctor, i'll do my best to explain what it is
from a patient's perspective, but you can go to the MUSC web site which is
listed several places in the e-group fro a accurate clinical explination.
The "Whipple" procedure is named for the doctor who invented it around 1935,
I believe I read. Basically, it is the removal of about one third of the
Pancreas. The one third being the head, or front portion of the pancreas. In
my case, I was born with Pancreas Divism, which is latin for divided
pancreas. I have two abnormally shaped, and sized pancreatic ducts instead
of one normal sized, and shaped duct. Therefore I have a blockage where the
Pancreas can't adequately pump out the enzymes it manufactures to help
digest fats, proteins, ect in food. As a result of repeated Pancreas attacks
over the years, my islet cells which are in the tail of the pancreas, are
largely destoyed resulting in Diabetes. It's realy amazing to me that this
one small organ, the Pancreas, which only weighs around less than ten
ounces, I've read, does so much, so efficiently, that we can go through life
not really aware of its existence, unless, like you and me, something goes
wrong. Then it's a BIG problem that can totally control, and alter the
course of our lives. Anyway, The Whipple will remove that Panc. head, then
basically, they remove some of the bile duct, the duodenum, and rehook the
pancreas, to the Jejunum (sp.). If complications arise, then this can take a
diffeerent course. For example say they find an unknown tumor, absess,
trouble with the spleen, gall bladder, ect. I believe, Dr. Adams said the
mortality rate for this surgery is around 30 %, and complete sucess is
around 70 %, much better than even 10-15 yrs. ago. In the 1960s. a lot of
people died undergoing the Whipple, so things have dramatically improved,
and I'm as confident as I can be that I'll survive the thing, and in my case
be relieved of the Pancreatic stones that I've been having trouble with on a
regular basis for about the past 14 months.
Anyway, that's about all I can tell you for now, I'll know a lot more
after I'm over the worst of the recovery, and back home. I hope I haven't
goofed it up too much, but I'm fairly new to this procedure myself, and
haven't found out aas much as I was about my last surgery, the Puestow.
I wish you a good day, and an even better pain-free tommorrow, and I hope I
didn't bore you right to sleep! :) Thank's for your prayers! I appreciate
them all, and I pray for you, and all who suffer with this maddening
disease. I don't blame you for getting scared, because that's normal, just
thank God for this group, our prayers, and the advances that have been made
in the past 50 years, and the hope for further research to end people's
suffering. Mabe we'll live to see a real cure! :)
Your Pancreas Pal,
Henry
============================================================================

Hi Henry,
Just wanted to let you know you will be in my thoughts and prayers for your
upcoming surgery. My sister-in-law had a malignant tumor in her pancreas.
In her case, the Whipple was done (about a year ago) and she is doing fine.
It took a while for her to get her energy back but she did really well under
the circumstances (she's 68). Fortunately, the tumor was localized so they
were able to remove all the cancer. The surgeon who did her surgery gave her
an epideral (sp) with the sedation and this kept her from having any pain
after surgery. They kept the epideral in for about a week. She said she
never felt any pain while the epideral was in. I was telling her about you
and she asked if you were going to have an epideral. Couldn't they do the
same for you? I had never heard of using an epideral except during
childbirth. You've been through so much, you probably are already aware of
this option. We will all be praying for you and Shirley and I know you both
are going to be fine!
Henry, do you live in SC? Stay well, try to keep your spirits high and I'll
keep the prayers coming!!!
Hugs & Prayers
Carole

Dear Shirley,
Yep I think it will probably be a Halloween Surgery, or no later than
Wed. Nov. 1st. Funny the last one was at Christmas, but that was more of an
emergency than this time. Dr. Adams is the greatest, and the entire "family"
at MUSC. Dr. Adams did my Puestow two years ago, and this Whipple should
eliminate the Pancreatic stones I've been forming every few months. I hope I
will get some improvement in the diabetes also! That would be wonderful, as
that is making me increasingly tire all the time, and is harder to control
with the tpn. He also cut out a Panc. absess a few years ago. Really Dr.
Adams has followed me through most of the entire Panc. disease process for
the past eight years, and he's the only one I'd let operate on me, we are
very close, as doc, and patient. What a blessing to be able to totaly trust
your doc with your life without a second thought.
Shirley, there was a newcomer lady to the group who has seen him also
here at MUSC, I sent her a welcome, and told her that Diane and I also go
there, and Diane goes to Dr. Cotton. Dr. Adams worked with my dad when he
was still in practice. He's one of the best GI Panc. surgeons in the U.S.
and a wonderful, humble, decent, person. I've forgotten her name now, these
pain meds do that ya know, Anyway, I wonder if my msgs. aren't all getting
out as this is the first time I've not recieved a reply to a newcomer
welcome, Do you know who this could be? I'd like to try to msg. her again
since she obviously didn't recieve my first welcome msg. I try to keep up
with welcoming all the newcomers as i can, as you all welcomed me so warmly.
I've been really sick the past week and gotten behind on msgs. so if you
have any clue who the lady is please e-mail me. I'd like to send her another
welcome, and mention that we're both Dr. Adams' patients, and Diane. Can't
wait to drink gallons of Golytely come surgery prep time! :) Thank's for
your thinking of me, and I appreciate any and all prayers! When is your
surgery scheduled? so I can pray especially for you as you face your
surgery, are we on, or about the same schedule to go under the knife?
Peace be with You Friend,
Henry
============================================================================

improvement! I go in this Mon. Oct. 30, and I guess the
surgery itself will be Tues. or Wed. So I'll be thinking of you all while I'm
away
Henry, hope everything goes well with your surgery. Will you have access to a
computer while you're in the hospital? Please let us know how you are doing.
jang

Hello again,
Does that mean you can'thave corn syrup either? Do you just do clear liquids
during the day then? Have you seen those posts signe "Have a pain-free day"?
I havent' had one of those for years! I have tried to do just clear
liquids,but htne for some reason the nausea gets worse.
I thought that that was supposed to help nausea settle down. Well I just got
done eating a soft pretzel and now I'm attempting frozen yogurt for some
protein.It's not going too well though. Three or four spoonfuls and I don't
want anymore. I hate this!!!!!!!!!!!!!!!!!!!!!!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

me to do and it is just getting worse. I am on coumadin and I continually put
hot towels on my arm. I called my doctor today and told her that my arm is no
better in fact it is worse. Now the
pain is in the entire arm. From the shoulder to the wrist. Have you ever had
a patient with a problem with a vein like mine? If so what did you do for them?
Any help will be so appreciated. Thank for just being there.
Hi Shirley. Sorry your arm is being so stubborn & refusing to heal. Keeping
your doctor updated is the best thing to do. Does the doc have any further
suggestions? Is there any infection & would you need antibiotics? This is
really outside my clinical experience. I work in an emergency department; we
treat 'em & street 'em.
Good luck & keep in touch with your doctors. Let me know how you are doing.
jang

Hi Christine. Just a few quick thoughts. First, false positives are possible.
You really need 3 positives to be certain. Second, does your gut work slowly,
like gastroparesis? It usually takes 2 or 3 days in a "normal" gastrointestinal
system for things to progress through the gut. Some of us have very sluggish
guts, so if the bleeding from the sphincterotomy didn't stop quickly, the
positive test could be from that. Those were just a few quick explainations. I
would ask the docs when they want to retest for blood. Good luck. Hope this
all resolves on its own. Please keep me posted on how you are doing.
jang

Dot,
Hi...I have been a partner to this disease for many years, 5 diagnosed and 9
undiagnosed. As you can see by the dates on the study you sent,docs have
been doing this for several years already. I had one of these in 96 and got
the impression that things were "fixed" sort of. Well, I got kind of
careless with my diet and increased my activity a lot. By Dec 15th or so I
was back in the hospital and by the 18th,back on TPN. I don't tell you this
so you lose your hope...but just be careful.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hi Steve
Just wondered if there was any up date on Tammy, I plan on going to see
her Wed but was just wondering .. and also how are you?? if you need
something call...
Wishing you all a pain free day
Anna from Michigan

In a message dated 10/24/00 4:48:14 PM Eastern Daylight Time,
sunflower6668@... writes:
<<
Hi Shirley,
Thanks Shirley. No, I don't think you get carried away. I totally
see where you are in all of this. My next question is this-I had a
sphincterotomy a week ago today. Now I am having blood in my stool.
It tested positive, so there is no question. The docs say it is from
the sphincterotomy, but I am wondering why it took a whole week to
bleed. I mean, cuts bleed immediately afterwards and then scab
over. Wouldn't that be the same internally? If any of you have any
insight on this, I would appreciate it very much.
Be well,
Christine
Dear Christine, I am sure one of the nurses would be a better choice to ask
this question. But I will tell you what I know which isn't much. What color
was the blood? If the blood was black and tar like then it came from up
high. If it is red then it probably came lower down. I really can't answer
your question. How much did you bleed. Was it on the toilet paper? Was it
on the side of the stool? Maybe from answering some of these questions the
nurses will be of some help to you. Take care. Shirley

Hi Henry,
I know that you are having you surgery soon and you are in my thoughts
and prays you are so helpful with all the info that you give out I just love
to read your post I learn so much.. sometime it scares me a little..lol but
most of it is so helpful and I just wanted to take the time to let you know
that you are wonderful along with so many from the group Jang and Karen and
Shirley and Diane I think all of us I mean if it weren't for one of asking
questions and the others replying we wouldn't find out a lot of it .. so I
guess hand in hand we all do it.. I once heard that you can only have good
groups if you have people that get involved and I think we have made this
group wonderful with everything that each and everyone of us put into it with
the care and support for one another.. OK now that I have rambled on and I
just wanted to say thank you.. I am new with this disease and it scares me so
to know what is ahead of me but thank you for your help.. and if I could ask
you what your surgery is going to be.. I know you have probably said but I
must have missed it some how or confused it with the others.. thanks for your
time...
Wishing you all a pain free day
Anna from Michigan

Crystal,
Just wanted you to know I was thinking of you and hoping that you
are doing better today... You and all the group are always in my
thoughts and prays this disease isn't easy on anyone. I know that I
find myself asking why alot, I tell my self that god never gives me
more then I can handle but there are times I feel it is more then I
can handle it puts such a stress on me and my family and loved ones,
I am so lucky that they are so supportive and helpful even when I get
down and know they really don't know what the heck I am going
through,I know they try and I can't lose faith in that, I can get in
my moods and they stick by me. and now I have the group which helps
cuz they do know what I am going through and remember I and the group
are here for you... wishing you a pain free day... and know that you
are in my prayers...
Anna From Michigan

Dear Karyn,
As Diane said, they did audio tape all of the meetings early on when the
group formed in 1997, but the source was simply a tape recorder sitting on
the table, and picked up all sorts of ambient extaneous room noise, air
conditioner, ect. I have been an advocate for getting a more professional
recording system in place, and Penelope Chase, our group founder and
coordinator, has mentioned upgrading, as the hospital does have some good
high end sound recording equipment, but it takes time. papeerwork, and
money, so it's not gotten anywhere. i will keep mentioning it, because we
have had a lot of request for tapes of the meetings. I'll keep you posted
when I hear of anything new!
Incidentally, I'm all psyched up now for the Whipple, and hopes that
this will bring some improvement! I go in this Mon. Oct. 30, and I guess the
surgery itself will be Tues. or Wed. So I'll be thinking of you all while
I'm away, and hope the Symposium goes great! :) I'm sure with all the hard
work, and dedication you put into everything you do it will be a hit!
Your Pancreas Friend,
Henry

Dear Michael,
Did you try the MUSC site Jang recommended? They have a good clinical
explanation of the ERCP procedure. I'll attempt to give you a little
layman's ecplanation since I've become a "frequent flyer" of ERCPs having
had 27 done over the course of eight years. Some of us in my support group
whove had a lot of these jokingly refer to it as "swallowing the camera,"
since you do literally swallow a camera device in a tub a bit narrower than
a garden hose. What they do to you is ussually outpatient, though it can
cause an attack, and put you in the hospital. You don't eat or drink for 12
hours before you go in. Then they put you in a holding area, where you put
on a gown, they start an I.V. and you wait your turn depending on how busy
they are is how long you wait. When your turn comes, you are wheeled into
the ERCP room, which looks like a small operating room with a big table in
the middle, several t.v. monitors overhead, and various medical personnel
surrounding the head, and sides of the table. They apply heart monitor
tapes, and wires, then you assume a rather awkward position, on you belly,
with your head turned to the side facing where the dr. will be. Then they
begin adminstering various medications to relax you, and help put you into
what they term, a "twilight sleep." This enables them to communcate to you
if needed, but try to keep you as calm, and still as possible, they give you
a nose tube for oxygen, then they spray your throat with some foul tasting
stuff that numbs you throat so you can swallow the tube with a minimum of
discomfort. They repeatedly ask you if your feeling sleepy, then when all is
ready the dr. comes in and they put a mouthpiece in, and you begin
swallowing the big black tube. once it's down through your stomach in the
duodenum, next to the pancreatic duct, they begin looking around, and doing
whatever it is that the test was indicated for, ie: a stent placement,
sphinterotomy, Pancreatic stone removal, et al. You may feel some discomfort
during the procedure, or not. With the Verced, that they normally give you
you may experience amnesia after it's all over, which is nice. You may have
trouble waking up, if your system is sensitive to the meds they use.
Personally, after 27 of them, I have always had trouble falling asleep, and
ussually remember it all unfortunately, because I have a high tolerance for
meds. in general. It's all very much an individual type reaction. There are
risks involved, and these will all be explained to you when you sign your
consent for treatment form.
Well, that's a basic layperson's explanation. Like I said earlier try
the M.U.S.C. web site. for a better, more technically accurate explanation.
I just gave you a simple patient's eye view of this procedure, and it's
probably not exactly what you need, but I thought I'd try my best to answer
your question, and I do sincerely wish the best outcome for you Michael!
Your Pancreas Friend,
Henry

Hi Shirley,
Thanks Shirley. No, I don't think you get carried away. I totally
see where you are in all of this. My next question is this-I had a
sphincterotomy a week ago today. Now I am having blood in my stool.
It tested positive, so there is no question. The docs say it is from
the sphincterotomy, but I am wondering why it took a whole week to
bleed. I mean, cuts bleed immediately afterwards and then scab
over. Wouldn't that be the same internally? If any of you have any
insight on this, I would appreciate it very much.
Be well,
Christine

In a message dated 10/23/00 12:22:34 AM Eastern Daylight Time,
adrienne@... writes:
<< Thursday
night I had a little temper tantrum. I was just fed up! I was
really sobbing to my Mom and Dad, saying I wish I didn't play
softball that day... My Mom started to cry and then I felt horrible.
They are such wonderful people, really. I couldn't do this without
them. I am just bummed about not being able to do for myself like I
used to. And wondering if I will be able to again. Anyway, enough
rambling. I am keeping you in my prayers.
Hi Adrienne, you have every right in the world to get fed up and cry, and get
angry. This disease is enough to drive anyone crazy. I am sure your parents
understood that you needed to unload all the stress built up in you. If have
to let it out or it will get the best of you. Please take care, and thank
you more than you know for the prayers. Shirley

Hi Becky. It's good to hear you so optimistic. It's great that you found a doctor to really
listen & to act proactively. Good luck with your follow-ups.

jang

Thanks Jang...

I only wish I could share the relief I felt after I saw this Dr with Everyone else suffering the same as I. I hope your well!

Becky

That was great
Your friends Tam & Steve

In a message dated 10/22/00 9:08:24 PM Pacific Daylight Time,
briffle@... writes:
<< Hi Steve,
Is there a number I can call Tam?
Becky
Yes you can call rite to her room (517)894-3370 She would love to hear from
you Your friends Tam & Steve

In a message dated 10/22/00 8:56:35 PM Pacific Daylight Time,
adrienne@... writes:
<< I am praying things will get better for Tammy.
Take care,
Adrienne
I will take all the preyers we can get. THANK YOU!!!!!!!!!!!!!!!!!
Your friends Tam & Steve

Okay all,
Diane, Becky, thanks for your thoughts. I was all ready to get the
mainline PICC placed so I could go home, and WALAH! they found blood
in my stool today............Hurray, more tests. Well, maybe I'll
get to go home by next weekend. Hope you are all well.
be well all,
Christine

In a message dated 10/23/00 6:05:58 PM Eastern Daylight Time,
jang2@... writes:
<< causes heaps of paperwork. I hope all goes well for you.
jang
Best of Luck Shirley, and be sure to avoid that paperwork

that pops out often My husband is tired of me asking him if I will make it
through the surgery. Most of the time I think positive thoughts and then there
are those times I think how can I possibly make it with the way my body feels.
friend, Shirley
Hi Shirley. I certainly understand your feelings of dread, but remember, if the
doctor didn't think you were st