Online web

Another message I received... Can any one here help??
ReeAnn

Hi Henry,
Thanks for sharing some of your story. All of our stories are
different in how we obtained this horrible disease, but one things
for sure we have all shared the same aches and pains. I was first
diagnosed in 93 by an ER Dr. To make a long story short, it has been
one rollercoaster ride after another. I have had various ERCP's,
sphincterotomies, but only 1 stent. I decided the first one was too
dangerous and that I would never have another one. I too am not
crazy about taking pain meds. I have been advised repeatedly not to
wait so long before taking anything for pain. I just feel the
various meds I have tried have not given me the kind of relief I need
when I'm in pain. I have also done the TPN thing, most recently Jan.
2000 to May 2000. Anytime you feel the need to chat, just jump right
in and go for it. Someone is always there to give you a response.
GOD BLESS,
MARIE

In a message dated 9/12/00 8:41:21 PM Eastern Daylight Time, howmtp@...
writes:
<< I have the pancreatic divism, with no history of alcohol abuse.
Hi Henry, I can't remember if I told you that I have divisim also. I have
had 14 ercps and 7 stents and with each stent I become so much worse. Have
the stents made your pancreas worse? I can't write anymore tonight. I took
a pain pill and now have a buzz. Shirley

Hello everyone: Tam had some blood cultures come back today and she has 2
infections in her blood stream. They have to put in a central line tomorow
because they cant put the TPN, pain meds, and the antibiotics all in her
port. so now she will have a port on one side and a central line on the
other. The doc said they have to run the antibiotics for 2 weeks. She is
devestated. What else can posibly go wrong ? On a good note Bregan had her
first day of ballet today. She was excited. Well I hope you are all having a
good and peacefull night.
Your friends Tam & Steve

Shana <shana@...

Hello

My name is Shana. Im 22, and live in Halifax, Nova Scotia Canada.

I'm new to this list, but not to pancreatitis. My story is kinda long and complicated. I had abdominal pain and chronic vomiting that started in July 1997. For a long time my doctors told me it was psychological until February 1998, when I wound up in the ER and they checked my amylase and lipase. My amylase was up in the 300's and my lipase was over 5000. My transaminases were also elevated. An ERCP was done in April that showed stones and sludge in my ducts. They were removed, but my symptoms didn't improve and in June they removed my gallbladder, but it didn't help for long. I was in and out of hospital that whole year. Another ERCP showed I had formed a stone even though my gallbladder was gone, and they removed that and performed a sphincterotomy. It didn't help. Then in febuary/march of 1999 I was admitted for 6 weeks because of malnutrition (from daily vomiting), a weight loss of 70 pounds in 5 months, and because my amylase and lipase wouldn't go down.
Another ERCP showed that my ducts were only partially open. I was diagnosed with chronic pancreatitis by a GI and surgeon but my PCP still maintained the pain and vomiting were psychological, and would not treat it or send me to a pain clinic. I switched doctors, and received a bit better treatment, being put on enzymes and occasionally giving me a prescription for dilaudid when things got bad.

In March of this year I moved here to Halifax, which is a bigger city, where I finally got in to see a good GI and got into a pain clinic. My CT scans haven't shown any significant abnormalities, but the ERCP's do. Some doctors here still say I can't have ch. pancreatitis if my CT is normal, but the specialists have told me that the ERCP is the most sensitive test and will pick up abnormalities the CT SCAN can miss. I'va had at least 7 bouts of acute pancreatitis where my enzymes and everything went sky high, but it seems now when I get the attacks my enzymes no longer go up. I've read that happens after awhile with chronic pancreatitis, although not many doctors seem to know this! My doctors have told me that in addition to the damage to the pancreatic tissue, i also have damage to the nerves around the pancreas, which is what causes a good deal of the pain as well

I'm lucky enough to be being treated with hydromorph contin, a long acting form of dilaudid, with instant release dilaudid for breakthrough pain. I also take elavil, and was on a medication called neurontin, which is used for nerve pain, but it made me sicker than I was to begin with! The hydromorph contin keeps the pain under control for the most part, but so often I get a flare up that I can't control at home, and have to go to the ER. They used to give me IV fentanyl, however, one doctor has since labelled me a *drug seeker* so now I am usually turned away without anything, despite my known diagnosis of chronic pancreatitis. They say because my enzymes don't go up then I can't be having an acute attack. I've given up arguing. I'm actually in the middle of an investigation of one doctor who was extremely rude, and wrote a bunch of blatant lies in my chart. (little did he know I regularly ask my doctor for copies of my chart) What he and another doctor wrote has
affected the way I am treated, and it isn't fair, or ethical, because what they wrote is not true.

Despite all this I know I am very fortunate to be receiving adequete medications for my pain, especially where I am young. It seems to me that most young people who have chronic pain don't get the medications they need, simply because of doctors predjudices about young people being addicts.

I asked my pain doctor about celiac plexus blocks, but at this pain clinic they only do them for patients with pancreatic cancer. And from what I hear they don't work all that well, so I am currently doing reasearch on rhizotomies, which is where they cut selective nerves that supply the pancreas in spinal canal, thus disabling the pain. I don't know if its been used for pancreatitis, but I'm looking into it. Does anyone know of any other procedures? I hate having to be on narcotics, because I know that where I am so young, I am going to run into problems with tolerance.

The past 3 months or so I have been having more problems then usual. I have more frequent bouts of pain and vomiting. My pain is in the upper abdomen, goes through to my back and often up into my left shoulder. I last saw my GI in June, and am scheduled to see him again October 26th. He didn't think and ERCP was necessary back in June, but I think one should be done. Its been 18 months since my last one, and that one was abnormal, showing the ducts were only partially open. But they don't like doing them on me inless absolutly necessary, because I am one of the fortunate (NOT) ones who develop acute ERCP induced pancreatitis.

Well, i guess I have rambled on long enough. i am just so grateful to have found a group of people who understand what I am going through! I look forward to reading everyone's stories, and learning about how you all cope with this nasty disease.

Take Care

Shana
pancreatitis diagnosed 02/98
ICQ# 69084502
http://www.geocities.com/shanajs21/home.html

hello shana

i was diagnosed as having CP in the year 1989 after the ercp and was having pains for almost more than a year when i met a docter specialsing in pancreatitis he was a very intelligent doctor . he had carried out a survey /research as part of his thesis to get a degree in gasteroenterology.according to him out of nearly 500 patients followed by him who had CP almost in 25% of the cases the duct opens on its own or finds its way through the pancreas,in 25% cases the disease remains as it is,in 25% of the casesit worsens creating other problems like diabetes etc. the fate of the rest of 25% is not known. since 1989 i have had pains only when i consume fatty food specially red meat etc.recently i have developed diabetes also. i therefore feel that have faith in GOD every thing will be fine

yours

SURINDER PAL,INDIA

PANCREATITIS SUPPORT NETWORK
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that you are having such a hard time with your doctors. With my last
bout of pancreatits my enzymes did not go up either, so the reaction
of my gastro doctor was that it couldn't be pancreatits either. I
wish someday a doctor would actually listen to the patient. We know
what it is before we are told!! After my hospitalization I followed
up with a different MD in their group, who I had seen another time in
the past. He listens and agreed with me. You keep hanging in there,
and make them listen to you! Beth

In a message dated 9/12/00 9:03:16 AM Central Daylight Time,
ReeAnnEgroups@... writes:
<< started out taking Ambien about 4 weeks after my gall bladder/fundo
surgery in April. This helped for a while. Puts you right to sleep (with in
30 minutes) so make sure it is the last thing you do each day. I would take
mine at about 10pm and be asleep by 10:30. After a month or two of this, I
started waking up in the middle of night, around 2am and not being able to
go back to sleep. When this started happening every single night, I called
my PCP about it. He put me on elavil as well. Now I take both pills before
going to bed. And I still wake up a lot around 2am, but am able to go back
to sleep. This morning though I had to sit up for an hour before I returned
to bed. The thing that worries me is Ambien is suppose to be for short term
use... And I have already been on it for several months.
hi. took my fist dose of the ambien last night and i slept most of the day -
i just could not stay awake. i don't know if it relaxed me enough to try &
play catch up for all the rest i've missed or what. i'll see what happens
tomorrow.
thanks for the information, i'll have to see how it works on me. debbie

In a message dated 09/12/2000 7:02:30 PM Eastern Daylight Time,
shana@... writes:
<< Take Care
Shana
Hi Shana! Welcome aboard! It is definatley a rough ride. I am sorry to
hear that you are so young and suffering with this nasty disease. I am only
35 and have had pancreatitis since Dec of 99. Mine was caused by elevated
triglycerides of 4000. I am still in a constant battle trying to keep them
down and worry constantly about attacks.
Well, my eyeballs are about shot for the night so I will sign off for now but
will talk to you again soon.
Nice to meet you,
Hugs,
Julie

Hello

My name is Shana. Im 22, and live in Halifax, Nova Scotia Canada.

I'm new to this list, but not to pancreatitis. My story is kinda long and complicated. I had abdominal pain and chronic vomiting that started in July 1997. For a long time my doctors told me it was psychological until February 1998, when I wound up in the ER and they checked my amylase and lipase. My amylase was up in the 300's and my lipase was over 5000. My transaminases were also elevated. An ERCP was done in April that showed stones and sludge in my ducts. They were removed, but my symptoms didn't improve and in June they removed my gallbladder, but it didn't help for long. I was in and out of hospital that whole year. Another ERCP showed I had formed a stone even though my gallbladder was gone, and they removed that and performed a sphincterotomy. It didn't help. Then in febuary/march of 1999 I was admitted for 6 weeks because of malnutrition (from daily vomiting), a weight loss of 70 pounds in 5 months, and because my amylase and lipase wouldn't go down.
Another ERCP showed that my ducts were only partially open. I was diagnosed with chronic pancreatitis by a GI and surgeon but my PCP still maintained the pain and vomiting were psychological, and would not treat it or send me to a pain clinic. I switched doctors, and received a bit better treatment, being put on enzymes and occasionally giving me a prescription for dilaudid when things got bad.

In March of this year I moved here to Halifax, which is a bigger city, where I finally got in to see a good GI and got into a pain clinic. My CT scans haven't shown any significant abnormalities, but the ERCP's do. Some doctors here still say I can't have ch. pancreatitis if my CT is normal, but the specialists have told me that the ERCP is the most sensitive test and will pick up abnormalities the CT SCAN can miss. I'va had at least 7 bouts of acute pancreatitis where my enzymes and everything went sky high, but it seems now when I get the attacks my enzymes no longer go up. I've read that happens after awhile with chronic pancreatitis, although not many doctors seem to know this! My doctors have told me that in addition to the damage to the pancreatic tissue, i also have damage to the nerves around the pancreas, which is what causes a good deal of the pain as well

I'm lucky enough to be being treated with hydromorph contin, a long acting form of dilaudid, with instant release dilaudid for breakthrough pain. I also take elavil, and was on a medication called neurontin, which is used for nerve pain, but it made me sicker than I was to begin with! The hydromorph contin keeps the pain under control for the most part, but so often I get a flare up that I can't control at home, and have to go to the ER. They used to give me IV fentanyl, however, one doctor has since labelled me a *drug seeker* so now I am usually turned away without anything, despite my known diagnosis of chronic pancreatitis. They say because my enzymes don't go up then I can't be having an acute attack. I've given up arguing. I'm actually in the middle of an investigation of one doctor who was extremely rude, and wrote a bunch of blatant lies in my chart. (little did he know I regularly ask my doctor for copies of my chart) What he and another doctor wrote has
affected the way I am treated, and it isn't fair, or ethical, because what they wrote is not true.

Despite all this I know I am very fortunate to be receiving adequete medications for my pain, especially where I am young. It seems to me that most young people who have chronic pain don't get the medications they need, simply because of doctors predjudices about young people being addicts.

I asked my pain doctor about celiac plexus blocks, but at this pain clinic they only do them for patients with pancreatic cancer. And from what I hear they don't work all that well, so I am currently doing reasearch on rhizotomies, which is where they cut selective nerves that supply the pancreas in spinal canal, thus disabling the pain. I don't know if its been used for pancreatitis, but I'm looking into it. Does anyone know of any other procedures? I hate having to be on narcotics, because I know that where I am so young, I am going to run into problems with tolerance.

The past 3 months or so I have been having more problems then usual. I have more frequent bouts of pain and vomiting. My pain is in the upper abdomen, goes through to my back and often up into my left shoulder. I last saw my GI in June, and am scheduled to see him again October 26th. He didn't think and ERCP was necessary back in June, but I think one should be done. Its been 18 months since my last one, and that one was abnormal, showing the ducts were only partially open. But they don't like doing them on me inless absolutly necessary, because I am one of the fortunate (NOT) ones who develop acute ERCP induced pancreatitis.

Well, i guess I have rambled on long enough. i am just so grateful to have found a group of people who understand what I am going through! I look forward to reading everyone's stories, and learning about how you all cope with this nasty disease.

Take Care

Shana
pancreatitis diagnosed 02/98
ICQ# 69084502
http://www.geocities.com/shanajs21/home.html

I am really hoping that someone will come along on this list that has been to
an alternative med doctor.I know one women who found some relief with using
some oils and she had no problems for months.
Donna

Hi all,
Am just wondering about your experiences. I had the ercp, stent and
stent removal. I woke up real early Sunday with sharp stabbing pains
in my back and could hardly get off the couch that day. Now I am
back to not eating and constant pain. Anything you can enlighten me
with? Thanks,
Christine

Hi everyone,
I just had to jump in on this one. Ambien is an excellent sleeping
pill. When I first took it I woke up at 3 in the morning...thing was I still
had my clothes on, my light was on and the book I was reading was on the
floor. Just make sure that when you take it you are really ready for bed!
As far as pain meds, does anyone else get wired from them? I know that
at the end of the day when I am in the most pain I want nothing more than to
sleep. If I take the Tylenol with codeine or Lortabs I end up wide awake. It
is really weird. I feel like every sound in the house is magnified and I am
like...bug eyed. It is most bothersome when I have to get up to go to work
the next day. I can't sleep because of the pain but I also can't sleep
because of the pain pills. I wish my MD would give me a script for Ambien
again. I am afraid to ask because I don't think they understand. I would
rather take the Ambien and sleep than take pain pills and be awake half the
night.
Oh well, yet another problem in the course of my life....:(
Take care everyone,
Elizabeth

In a message dated 9/12/00 7:19:42 AM Central Daylight Time,
Juliespets@... writes:
<<
<< I was able to lower my triglyce and cholerstoral with garlic caps and
red yeast daily for two months
All the best
Donna
donna - i was taking garlic capsules for a long time. never could tell that
they lowered my triglyc. any, but garlic is supposed to be good for a lot of
things. debbie

"Does anyone have icq?"
Hi Crystal,

In a message dated 9/11/00 11:52:07 AM Central Daylight Time,
shirlf3542@... writes:
<< I spoke with a
women who had pancreatitis and she said she had the same symptoms and went
to
a neurologist. The neurologist said that she was suffering from
malnutrition
and he is giving her vitamin B injections to build up her body. He told her
that it would take 6 months to build her up. I will let you know what my
doctor has to say about my numb feet and hands. We can compare diagnosis.
Shirley
hmmm - interesting. my md visit was today. they took 5 vials of blood for
tests. he took me off lipitor and lopoid and put me on zocor. he took me off
the hormone patches (mine won't stay on worth a dang and i keep having to buy
more than i should), took me off elavil cause it wasn't helping me sleep that
much and put me on ambien (i think a lot of you take this). he gave me a
much larger prescription of ultram because i was taking them pretty often. i
had my whole list of questions and he went over everything w/me. he thinks my
terrible knee pain and some of the other things (weight gain etc;) might all
be tied to the lipitor. he is also going to check on putting my on a
diuretic that will work w/all the other meds and that won't deplete me of
pottasium. he will be getting back to me after he gets the blood test
results. i asked him if i was considered to be chronic pancreatitis and he
said "yes, intermittant chronic pancreatitis." and he wrote chronic
pancreatitis on my sheet that he completes for the office for the blood tests
etc;. i asked him if he had any other panc patients and he said he has two.
i was pleased with the visit. he listened!!
hope the oct. visit w/the new gi doctor goes as well!!
debbie

"took me off elavil cause it wasn't helping me sleep that
much and put me on ambien (i think a lot of you take this)"
Hi Debbie,
I started out taking Ambien about 4 weeks after my gall bladder/fundo
surgery in April. This helped for a while. Puts you right to sleep (with in
30 minutes) so make sure it is the last thing you do each day. I would take
mine at about 10pm and be asleep by 10:30. After a month or two of this, I
started waking up in the middle of night, around 2am and not being able to
go back to sleep. When this started happening every single night, I called
my PCP about it. He put me on elavil as well. Now I take both pills before
going to bed. And I still wake up a lot around 2am, but am able to go back
to sleep. This morning though I had to sit up for an hour before I returned
to bed. The thing that worries me is Ambien is suppose to be for short term
use... And I have already been on it for several months.
Good Luck with the new GI and new Meds!!
Lots of Hugs
ReeAnn

Poncho,
Actually ,I was referring to this... "Ya pays your
money and you gets your pick." Sorry for the confusion, I'm pretty new to
this computer stuff.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hi all,
WELCOME Henry!!!! So good to see you here,too.
Hey everyone, can I vent for a minute? I have been so frustrated with this
referral to the pain center. My doc tries to send what they request...but
its not good enough. Then when I try to get back in touch with my docs
nurse, the receptionist won't put me through! So not only do I have to go
through the nurse to get through to the doctor, I have to get through
reception to get to the nurse!!! So frustrating!! At this rate it will be
Christmas before I get into the pain center. It was already Oct 24th a week
ago so I'm afraid to ask now. The pain center will not bend their rules one
little bit...and in the mean time I try to get this pain under control. At
least my doc upped my Roxanol to 5-15mg every 4hrs as needed.
Poncho, don't worry about my last post to you. I forgot to paste what I had
copied from your response...and now I can't remember what is was!!!
Dian
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

--

numb. i have an apptmt tomorrow w/ family dr. and will be going over a bunch of
questions that i have with him. several people have told me that lipitor
(which i take for high blood pressure) can affect joint pain.
debbie
Debbie, did you mean to say you take Lipitor for high cholesterol/triglycerides?
That's the usual use.
It could be only coincidental, but I had edema (swelling) of ankles & feet with
intense knee & ankle pain, chest pain, shorness of breath after my dose of
Lipitor was increased from 10mg to 20mg. These symptoms cleared several weeks
after stopping the Lipitor.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

In a message dated 9/10/00 10:47:31 PM Central Daylight Time,
shirlf3542@... writes:
<< PS Is your appointment the end
of Oct. because this doctor is that booked up?
shirley - think so. they said that was the earliest i could get in. hope that
is a good sign! debbie

Tam and Steve,
It sounds like you are really trying to keep the kids occupied during
the rough times. I know what it's like to have small children when
you're ill. My children were 10 and 7 when I first became ill with
pancreatitis. It came to a point during my illness that my husband
and I sat them down and explained everything to them. There were
some rough moments, but they survived as well as I did. They are 17
and 14 now, but it is still difficult on them when I have to go to
the hospital. But the one thing that always gives me hope are the
children. GOD BLESS you both.
MARIE

Hi Marie, I am so sorry to hear you pain is so intense. Keep up the good
faith. I am glad to hear you are sleeping better. better things are yet to
come for all of us. Jim s

In a message dated 09/09/2000 4:45:49 PM Eastern Daylight Time,
shirlf3542@... writes:
<< Please let us know how you are.
ditto Mary Helen!!
Julie

In a message dated 9/9/00 8:52:27 PM Central Daylight Time,
shirlf3542@... writes:
<< hi, new member Dave here...ive had episodes of pancreatitis since
89...the last one was in June, where they discovered i was diabetic,
also...i now have chronic pain & nausea...i just got put on oxycontin
10 which is doing fairly well for me...how many of y'all are diabetic?
By the way, what meds are y'all taking?How are they working 4 u ?
hi dave. i'm not diabetic and so far no one has said that i have divissim.
attack three years ago and then 8 or 9 hospitalizations since sept 99.
several attacks since may that i have managed to stave off here at home.
medication - ultram (which i have to take several of when i feel pain),
elavil at night to help me sleep and phenergran for nausea & vomiting. i
take phenergran quite a bit. i try to eat small meals and had already been on
low fat diet because i have high blood pressure. high triglcerides which are
under control w/medication. i am off work on disability through my insurance
at my job (which i no longer have) and will be seeing my second gi dr. the
end of oct. here in ar at univ of ar medical sciences in little rock. all
previous tests showed nothing at all (cat scans, ercp, mrcp, petscan, upper
gi, lower gi, cholenscop (sp), ultrasound, etc; etc;). my hospital stays
have been four days at the least and 12 at the most at one time. since my
family dr. finally gave me pain & nausea meds i have been able to keep out of
the hospital. last stay was last week of april. hurrah!!!! i've had
problems lately with pain in my knees and my hands have been going numb. i
have an apptmt tomorrow w/ family dr. and will be going over a bunch of
questions that i have with him. several people have told me that lipitor
(which i take for high blood pressure) can affect joint pain.
i hope we can be of help to you - if only for support. debbie

In a message dated 09/09/2000 10:01:34 AM Eastern Daylight Time,
loggiekw@... writes:
<< I had the test to see if I had a kidney stone yesterday (IVP CT scan). It
didn't show a stone but did show calcification in the bladder. My family
doc
said I may have had a stone and passed it already. The pain has eased up a
lot but I am still having some.
I am back to square one again. This pain is definitely related to eating
and
drinking (even just water). Gosh, a kidney stone would have been so
easy!!!!!! Oh, well, guess you guys are stuck with me a while longer!
Thanks for your prayers and support.
Karen Weston
Hi Karen,
Sorry you didn't get an easy answer.....I guess there just is no such thing,
huh? I hope you are feeling better and actually, you are stuck with us! LOL
Hugs,
Julie

In a message dated 9/9/00 9:43:49 PM Pacific Daylight Time, dcp6364@...
writes:
<< Tam & Steve,
I have read your many posts. I know God has been with you and will
continue to take care of you both. Tam has been through so much, and
Steve you have been great staying right there beside her. I feel God
takes us through many trials and tribulations because He is testing
our faith. You both are in my prayers. Continue to stay strong and
positive, even during the bad times. Tam is very blessed to have you
Steve.
GOD BLESS,
MARIE
Marie: Thank you for the kind words. I brought her in friday and stayed with
her untill about 8:00 pm saturday. The kids wanted Daddy. My parents had the
kids and took them fishing for the first time out on grandpas boat. They both
caught some fish and loved going out on the boat. My mom said when they got
back in the car my little boy said this was a great day!!! I am glad they had
a good day they have been through a lot. Now today I went and got them and
brought them to see Tam. They want Mommy to come hame now and they dont quite
understand why she has to stay in the hospital. They say she is sick at home
too. Its hard. I love my Kids so much and wish they didnt have to see their
Mommy like that but they love her no matter what. I told Tam she is a better
Mother sick than most Mothers healthy. Well thanks again for the kind words
and I hope you are feeling well Your friends
Tam & Steve

Tam & Steve,
I have read your many posts. I know God has been with you and will
continue to take care of you both. Tam has been through so much, and
Steve you have been great staying right there beside her. I feel God
takes us through many trials and tribulations because He is testing
our faith. You both are in my prayers. Continue to stay strong and
positive, even during the bad times. Tam is very blessed to have you
Steve.
GOD BLESS,
MARIE

Hi Lorrie and Jim,
I too have been struck down twice within the last 2 weeks with that
same horrific pain. Two weeks ago I just called my Dr. for a
stronger pain med., which didn't help a whole lot. I just weathered
the pain, it never went away just let up. I awoke at 4 a.m. Friday
morning with it again, back in full force. I weathered it all day
and eventually ended up in the ER, which I hate, for some pain med.
It took 2 injections of Demerol to give me some relief. I slept all
night for the first time, I know in months. I have to say this is
the worse pain of them all.
MARIE

Poncho,
What did you mean by this?
Diane

hi, new member Dave here...ive had episodes of pancreatitis since
89...the last one was in June, where they discovered i was diabetic,
also...i now have chronic pain & nausea...i just got put on oxycontin
10 which is doing fairly well for me...how many of y'all are diabetic?
By the way, what meds are y'all taking?How are they working 4 u ?
Peace, & have a pain-free day!
~~Dave~~

In a message dated 9/9/00 7:38:51 PM Central Daylight Time, howmtp@...
writes:
<< Hi!
I'm Henry, and a new member here. I haven't been online very long, so
I'm not sure if I'm doing this correctly, but a friend in my pancreas
support group told me to just dive in and lots of friendly people would
correspond.
hello henry - you are correct - there will be many people here contacting you
and worrying about you etc;. this is a really good group of people. sorry
you have panc., but glad you have been added to our group.
debbie

Hi all,
Just wanted to let you all know that Karyn wound up back in the
hospital Friday afternoon. As most of you know, she has been
suffering from pretty severe edema (swelling in her lower extremeties
from massive fluid build-up) for a couple of months. Her doctor
prescribed lasix, and kept increasing the dose. She was up to 160
mg/day, and it was having absolutely NO effect. She called the
doctor
back on Monday morning, and this time he prescribed a 2nd diuretic
called zaroxalyn (sp?) to take in conjuction with the lasix. She
started taking that Monday, and it seemed to be working great - after
only a couple of days, the swelling in her legs had gone down
considerably, she was able to walk relatively comfortably, and she
dropped about 15 pounds in just a few days. By Thursday, however,
she
was beginning to complain about being extremely tired, lethargic, and
groggy. And her "jumpy/restless legs" syndrome seemed to be getting
worse, and also had traveled to her arms and hands as well. We
called
the doctor on Friday, but he was out of town, and his nurse said she
would get in touch with the on-call doctor. By Friday afternoon
Karyn's symptoms were getting worse, so I called the nurse back and
said I thought she needed to be seen right away, so she advised us to
go to the ER. They drew some blood work, and discovered that she had
a severe electrolyte imbalance - her CO2 was too high to measure, and
her potassium was critically low. They started her on IV potassium,
and also an oral potassium dose, but when they re-checked her labs
about 4 hours later, the potassium level had not changed at all. So
they decided to give her more IV potassium, and admitted her
"overnight for observation". As of this morning, Karyn was feeling
slightly better, but she's still pretty weak, and they are still
monitoring her pretty closely. They are continuing to give her
potassium, and checking her lab work. I imagine she will be in the
hospital at least one more night at this point. She asked me to let
you all know what is going on. Prayers and positive vibes are of
course most welcome!
Wishing you all a pain-free day.
--Tull

In a message dated 9/9/00 3:48:39 PM Eastern Daylight Time,
tull@... writes:
<<

I probably missed it earlier, but are restless (shakey) arms and legs a symptom
some of you have? I sometimes get the shakes so bad I can't hold a drink or
open a pill bottle. It's weird...
Kelly

I had the test to see if I had a kidney stone yesterday (IVP CT scan). It
didn't show a stone but did show calcification in the bladder. My family doc
said I may have had a stone and passed it already. The pain has eased up a
lot but I am still having some.
I am back to square one again. This pain is definitely related to eating and
drinking (even just water). Gosh, a kidney stone would have been so
easy!!!!!! Oh, well, guess you guys are stuck with me a while longer!
Thanks for your prayers and support.
Karen Weston

Hi all,
Somehow I knew after I posted last time that I would hear about it.
Sometimes someone has to point out to us how blessed we are. jang hit it on
the nose--"Your doctor must be unusually accessable & patient." Not only do
I have such a doctor, but I also have access to a nurse at MUSC who will
answer ANY questions I have. And if she doesn't know, she will research it
herself or ask one of the docs down there, until she has ofund an answer for
me. I truly am blessed...and I gues that's why I've thought many times of
moving to Charleston where MUSC is. Someday that may happen,but not now. I
apologize if I upset anyone, it just seemed some could get into trouble by
trying to get medical info in this way.
Diane

In a message dated 9/8/00 9:32:16 PM Eastern Daylight Time,
dhollis062@... writes:
<< it just seemed some could get into trouble by trying to get medical info
in this way.
Absolutely people can easily get into major trouble getting and giving
medical information of any kind. So one must always be aware and wary of any
medical advice, sometimes even from a nurse or a doctor. Your concern was and
is ligitiment and real. Ya pays your money and you gets your pick.

--

ribcage. We've been on the phone with all the hospitals in
Pittsburgh regarding the radiofrequency treatments...
looking at them from the bathroom window--it was such a
beautiful sight...seeing Erin laughing with him. I couldn't help myself--I
stayed at that window for about 10 minutes--I just wanted to keep that picture
in my head. Then tonight we took all 3 kids to the playground for a little
while--it was so nice to go as a family and to see Jim having fun with them. We
had a great day today!
The one good thing about having a nasty disease is that you learn to savor &
treasure these good days. You learn not to take for granted these good days
that other people never think twice about. Good luck with your appointment;
hope Jim will be a candidate for the radiofrequency treatments. Please keep us
informed.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

It's 4:30 a.m. on Friday and I just got back from the Athens ER. I started
hurting really bad around 6 p.m. By 1:15 a.m., it was not better, so I went
to the ER. They are almost positive I have a kidney stone! There was a lot
of blood in my urine and something else pointed to kidney stone (can't
remember what). Anyway, they will do a CT IVP tomorrow at Athens hospital.
Bud had told me he thought it might be a kidney stone when I had the bad
spell in early July, but I was just sure it was the pancreas/bile duct
causing the pain. Lately the pain has been much worse in my back than
stomach, but I still thought it was from the pancreas. Anyway, please say a
prayer for me that it is a kidney stone and they can take care of it. I
would love to be through with all this pain and sickness. It would also be
really nice if it has been a kidney stone causing all this swelling in my
stomach - I'd like to be able to fit in my clothes again!
I saw a doctor at a pain clinic today (well yesterday really). I have an
appt to have a nerve block done at 8:30 this morning. Obviously, I am going
to cancel that for now.
I'll let everyone know what Ifind out. Thank you so much for all your love,
prayers, and support. Please know that each and every one of you is in my
prayers always.
Karen Weston

In a message dated 9/7/00 10:23:31 PM Pacific Daylight Time,
shirlf3542@... writes:
<< I assume I am the only one up at 1:18 A.M. this morning. I had a bad time
today and now tonight I have the shaky legs and arms. Someone from the
group
mentioned it to me earlier. If you were the one would you please give me
the
site again? These restless legs and arms are painful. Thanks, Shirley
Shirly--No you are not the only one up Tam and I are up also. She cant sleep
either. We are going to put her in the hospital tomorow, she is getting very
dehidrated. That way they can run more tests rite there in the hospital and
maybe get to the bottom of this whole thing. She still cant control her body
functions. Tam & Steve

Hi everyone,
...not much changed regarding Jim's condition--pain constantly under
left ribcage. We've been on the phone with all the hospitals in
Pittsburgh regarding the radiofrequency treatments...some of them do
it but only for nerves in the neck and back---they don't do on the
celiac plexus. Cleveland Clinic does do this procedure--Jim has an
appt. with Dr. Howard Popp on 9-25 (unfortunately that was their
earliest appt). He would only be doing the evaluation that day and
we'd have to go back on a different day for any treatment--that
sucks. It will take us about 3 hours to get there. So, for now it's
one day at a time--or more like one minute at a time (I've seen his
pain suddenly worsen in minutes at times). Jim got out of bed for
the first time in a few days today. He was in the backyard playing
with Erin (she's 4 and justed started preschool) and the dogs. I was
upstairs looking at them from the bathroom window--it was such a
beautiful sight...seeing Erin laughing with him. I couldn't help
myself--I stayed at that window for about 10 minutes--I just wanted
to keep that picture in my head. Then tonight we took all 3 kids to
the playground for a little while--it was so nice to go as a family
and to see Jim having fun with them. We had a great day today! Just
wanted to share this all with you. Hope everyone is having a
comfortable evening!
Lorrie
PS Has anyone ever gone to Cleveland Clinic for pain management? If
so, would you please share your experience with us? Thanks!

I assume I am the only one up at 1:18 A.M. this morning. I had a bad time
today and now tonight I have the shaky legs and arms. Someone from the group
mentioned it to me earlier. If you were the one would you please give me the
site again? These restless legs and arms are painful. Thanks, Shirley

In a message dated 9/7/00 6:04:29 PM Eastern Daylight Time, jang2@...
writes:
<< but I wonder how it will go when he comes in to see patients while I'm
working.
Dear Jang,
It is funny that you are mentioning this...I saw my GI doc at work for
the first time since he basically blew me off. It was the most uncomfortable
thing. I got flushed and could feel my BP just rising! We never made eye
contact but he definitely knew I was there. I just hope that I don't have to
be admitted any time soon! They are the only GI group left (no other GI's at
the hospital and the only other one I stopped going to last summer) and he
would end up having to see me! Anyway, I know how it feels!
Elizabeth

--

first time since he basically blew me off. It was the most uncomfortable thing.
I got flushed and could feel my BP just rising! We never made eye
contact but he definitely knew I was there. I just hope that I don't have to be
admitted any time soon! They are the only GI group left (no other GI's at the
hospital and the only other one I stopped going to last summer) and he
Fortunately, this doctor is a family practice doc, not my GI. I'll let you know
how it goes.
He is the one that should be embarrassed, uncomfortable; not me. He's the one
that abandoned a patient. Now I've got to be able to keep reminding myself of
that & stand tall-
much easier said than done.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

Hi- I am interested in anyone who has had success with alternative
medicine and pancreatitis
Please email me privately
thank you DFNewman@...

--

Where the
organs look good and healthy, and there is no obvious reason for the problems.
He says I fall into the category of being a functional patient.
urine, but still seem to have fatty stools. The pain is "livable" with an
occassional Vicodin or Darvon.
So glad you are feeling better. It sounds like this doctor understands that
although he is not able to see exactly what is causing the problems, that there
is something wrong & he is working with you to help. Does the doctor think that
the fact that the sphincterotomy eased your pain means that perhaps you had a
problem with a too-narrow duct outlet?
my young adult daughters (twins who will be 22 on Xmas eve).. She has moved
back home as of 2 days ago. Finally left the pathological liar of a
right away helping around the house with all the things I just have not been
able to do. I have a clean house again thanks to her. But most
importantly, I have someone there who cares... been too long on a bumpy highway
with out that..
Sounds like you've had a terrific few days; hope they are just the first of
many.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

--

are sooo extreme and I am an example of that!!! Sounds like you were too!!
What did they put you on instead of Lipitor? Just curious, they put
Julie, my (ex)primary doctor sent me for lab work; when results for kidney and
liver function were normal, he had an office person call to tell me. He did not
come to the phone himself despite 4 phone calls I made asking for him to call
me. I made an appointment with a cardiologist who did an echocardiogram &
Holter monitor yesterday; I don't have the results yet. On the recommendation
of the cardiologist, I went to a dermatologist for the ulcers on my lips (she
agreed it was an allergic type reaction to Lipitor & found literature saying
Lipitor can cause sores in the stomach, mouth, lips.) When I talk to the
cardiologist, I'll ask what I can use for high triglycerides & cholesterol; I'll
let you know.
Obviously, I'll have to find a new primary doctor; the old one is worse than
useless. Funny thing is, I work in an ED & often work with this doctor. I have
not seen this primary doctor at work since this Lipitor thing, but I wonder how
it will go when he comes in to see patients while I'm working. I have told the
cardiologist & dermatologist, as well as my co-workers, exactly how
unprofessionally this primary doctor acted. I guess he feels that if the lab
work "only" shows high triglycerides & cholesterol, he shouldn't be concerned
about swelling of ankles, chest pain, shortness of breath, muscle & joint pain;
he never even told me to stop taking Lipitor, let alone prescribe something
else. Sorry for the long rant, but I'm still really aggravated with this
doctor. I REALLY feel bad for other people, who he is probably treating at
least as poorly as he is treating me, & who may be unaware that it is
unacceptable.
Again, I appologize for the long venting.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

In a message dated 9/5/2000 12:18:36 PM Eastern Daylight Time, Kwil126 writes:
<< <<

Hello Everyone,
Just thought I post an update after seeing my GI yesterday as a followup to
the ERCP and Sphinctometry. He all but said I have not an idiopathic
pancreas, but rather an idiopathic digestive system. Only he didn't used
the term idiopathic. Rather he explained it by saying some people have very
obvious "mechanical" reasons for their problems. That these are the best
kinds of patients because there are definite answers then. Then there are
others that cna be descibed as having "functional" problems. Where the
organs look good and healthy, and there is no obvious reason for the
problems. He says I fall into the category of being a functional patient.
And it is not just with my pancreas, but rather the whole digestive tract.
He has added Lotronex to my list of drugs, and Analpram HC cream for the
hemrroids. This is on top of the Celebrex (ostreoarthritic in both ankles),
Ambein (sleeping), Vicodin (pain), Elavil (sleeping/pain), Premarin
(hormones), and Prevacid (reflux), Atenolol and Hydrochlorothiazide (high
blood pressure). Have tried numerous other drugs in the past year for
various problems including Questran Powder, Propoxyphene/Darvon, Bactrim DS,
Metoclopramide, Albuterol inhaler, Predisone, Gauifensen, Doxycycline,
Tussionex, Biaxin, Arthotec and Propulsid (now off the market). Several
other I can't remember the names of off the top of my head. Think I need to
start buying stock in Walgreens.....
The sphinctometry did seem to help. I am no longer getting bilirubin in my
urine, but still seem to have fatty stools. The pain is "livable" with an
occassional Vicodin or Darvon. He wants to see me again in 2 months, still
giving my body time to adjust for all the changes it has been through. I
think he also wants to check for colon polyps again because of tenderness on
the lower left side of the abdomen - had 5 removed a year ago, about the
time this all started for me an if my stools are still fatty, he will have
me do the "paint can" 72 hr test.
What he was trying to say through all of this, is that I am facing test
after test trying to chase down the cause. fixing minor problems along the
way, and maybe never getting any real relief. So I still don't have a
definite diagnosis and maybe never will.... I ask if I could expect more
"attacks" and how often. A question he couldn't answer.. As far as where
we go from here.. try the medicine and see what happens after that.
I guess many of the people here have been through the same thing. So
frustrating not getting answers.... not knowing... For me, the fear of the
unknown has always been worse.. If I know what the
problem/situation/condition is, no matter how bad, at least it becomes
tangible and something can be done, if nothing else than educating myself
and making lifestyle changes.
On another note... I too have had recent changes in my relationship with
one my young adult daughters (twins who will be 22 on Xmas eve).. She has
moved back home as of 2 days ago. Finally left the pathological liar of a
boyfriend. It has been a tremendous relief for me!!!!!! And she has kicked
in right away helping around the house with all the things I just have not
been able to do. I have a clean house again thanks to her. But most
importantly, I have someone there who cares... been too long on a bumpy
highway with out that..
Lots of hugs
ReeAnn

Steve,

I have a Bible verse I remember daily!

" I can do all things through Christ who Strengthens me" I believe it is Phillipians 4:13

I am praying for you and Tam. Please give her a BIG hug for me and tell her to hang in there. She is being carried on many prayers right now! I only wish I could live closer to help you! You are a terrific husband!

God Bless you and your family!

Becky and Chris Ellington

In a message dated 9/6/00 11:29:29 PM Pacific Daylight Time, KarynWms@...
writes:
<< Hi Tam and Steve,
I can only imagine the anguish your family is going through. I wish I lived
just three hours a way. How old are your children? Is there any family "who
gets it" nearby.
Stay in touch.
Karyn
Karyn-- My daughter, Bregan is 5 1/2 and my son, Burke is 3. yes we are
getting some help from family. Last night I was up with Tam untill 4:00 am
and I did not make it to school this morning. I called my teacher and left a
message I hope she understands.
Tam & Steve

Did anybody ever try Actigal? I think it's a synthetic bile extract?

In a message dated 9/6/00 3:08:28 PM Pacific Daylight Time,
sunflower6668@... writes:
<< Dear Tam and Steve I am praying for you too. I live three hours away, but
if you need help on a weekend, I will be willing to come and give you
whatever help I can................... Christine
Hi Tam and Steve,
I can only imagine the anguish your family is going through. I wish I lived
just three hours a way. How old are your children? Is there any family "who
gets it" nearby.
Stay in touch.
Karyn

In a message dated 9/7/00 8:23:42 AM Central Daylight Time,
Juliespets@... writes:
<< I don't think anyone takes any of these answers as
"medical advice" but it some cases it may give them more info and questions
for their docs!!
Julie
that's right julie. and it helps me with making a list of things to ask my
doctor on the next visit. there are many things i would not even KNOW to ask
if it hadn't been for this site. noone is trying to take the place of the
medical professionals!
debbie

On thing I have a hard time understanding about this group, as many times as
I have read that this group is not a group of doctors who give medical
advice, there still continues to be most of the questions that should be
addressed to the doctor or perhaps the doctor's nurse. And people continue
to try to answer questions that should or can be answered by the person's
doctor.
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 9/5/00 2:55:53 PM Pacific Daylight Time,
sunflower6668@... writes:
<< I will try to be patient. I hurt more now than ever.........and the
discouragement is of course at the top of my list.........how do you people
who have it much worse manage to cope? I am about at the end of my rope.
Christine
Hi Christine,
I hear that you are hurting and frustrated. In my experience it seems as
though the doctors are so proud of these procedures that they expect us to
respond positively. When you are having your first or second ERCP we want so
badly to believe the doctors. that we will have positive results. I don't
know how to get the doctors to speak honestly that not all, very few of the
ERCPs done aren't successful. I think they really aren't aware. They do the
procedure and their isn't much followup by the GI. Who knows?
How do we cope? I require my relationship with God. I just have to hold on to
the belief that I am here for a reason, that there is a lesson to be learned,
or a lesson to be taught, and that somehow, someway, I will not have to
suffer any more. There are some days where one day at a time isn't enough. I
have to live one hour, one minute at a time. What helps me the most is to
another Pancreatitis survivor or anybody else. It gets my mind off my pain
and my disease. I definitely gather much strength and fortitude from the
members of this Network.
For that I am grateful.
Karyn

Dear Tam and Steve,
I am praying for you too. I live three hours away, but if you need
help on a weekend, I will be willing to come and give you whatever
help I can...................
Christine

--

Can you say determined to make a better life??
Good luck. Hope you & Tammy get some good news.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

In a message dated 9/6/00 8:08:14 AM Pacific Daylight Time, loggiekw@...
writes:
<<
My family doc sent me an e-mail in response to the one I sent him. I really
didn't expect to hear back from him. I'm not sure what I'm going to do
about
a family doc now.
This is the e-mail he sent me.
Karen,
I'm sorry I gave you the impression that I was irritated by your call.
After-hours calls are a fact of life in medicine. I'm not sure I can answer
most of the questions you are asking, but I will attempt to do so at your
next visit. I hope you are able get some useful information at your visit
today.
Dr. Boone
Karen,
That is incredible. Keep this doctor! Let us know what you are going to do?
It's a hard call to make.
Karyn

Hey Staci -
Just a quick note to let you know that I didn't start having any
symptoms from my Lupron shots until the second or third shot. Don't get
discouraged yet. Hopefully it will still help you.
Kelly
Quick update on me - Took a Lupron shot. Have my period so it has not
worked
yet. I do feel some pancreas tenderness now but hopefully can conquer
it.
I
hope the shots take the right effect soon.
Love ya,
Staci

I saw my rheumie yesterday. He said he really doesn't think my lupus is very
active right now. He said the type inflammation I have is not the type that
would be caused by lupus. He said lupus can cause pancreatitis but lupus
would not have an affect on the biliary tree. He said since they have found
that my bile duct and sphincter of oddi don't function properly, he doubts
that my pancreatitis or pain is caused by lupus. He did do numerous blood
test, urinalysis, and chest x-ray. Even my ribs on the right side are tender
and he did the chest x-ray to make sure there is no pleurisy. Anyway, he
said he could refer me to a gastro in b'ham if I want. He is supposed to
contact me by Friday with test results. I will decide what to do after that.
Yesterday was a pretty good day. I had only minimal pain. Today I am having
a good bit of pain. I am home from work. I am also exhausted. Feel I need
to sleep for 24 hours. I took a pain pill at 7 a.m and went back to sleep
for a couple of hours. I found out the pain med my doc called in is darvon -
just a mild pain med. I asked him for a mild pain med. It definitely takes
the edge off the pain, but allows me to still function while taking it.
My family doc sent me an e-mail in response to the one I sent him. I really
didn't expect to hear back from him. I'm not sure what I'm going to do about
a family doc now.
This is the e-mail he sent me.
Karen,
I'm sorry I gave you the impression that I was irritated by your call.
After-hours calls are a fact of life in medicine.
I'm not sure I can answer most of the questions you are asking, but I will
attempt to do so at your next visit.
I hope you are able get some useful information at your visit today.
Dr. Boone
I'm not sure what to do next about my stomach problems/pain. My mom keeps
wanting me to go to Mayo clinic. If the tests the rheumie did come back
okay, I think I may be ready to either go to the Mayo clinic or just go to a
pain management doc. Anyone have any advice?
Karen Weston

I talked with the doc and he is sending her to a surgoun tomorow to run some
tests. he is very concerned because of the swelling in her stomach. He is
concerned that it might be cancer. I did not tell Tam this because I dont
want her to get worried when we dont know for sure yet. Lord knows doctors
have been known to be wrong. well I will keep you updated. I have been very
busy lately taking care of Tam, the kids and I am trying the superman thing
out and am taking 13 credits at college. can you say STUPID!!!!!!!
Your freinds Tam & Steve

Thanks Karyn,
I will try to be patient. I hurt more now than ever.........and the
discouragement is of course at the top of my list.........how do you
people who have it much worse manage to cope? I am about at the end
of my rope.
Christine

Steve,

While I was on the phone with the PCP today I mentioned this to him. He said he doesn't know Tammy but he suggests that she call he doc ASAP.! Poncho was right she could dehydrate herself really quickly and end up back int he hospital! I am so concerned for her! Please give her a hug for me and take care of her!

Prayers are going up for you! Becky

To anyone Help Tam is having trouble. She cannot control her urine or bowel
functions. Does anyone know why this would happen. Last night she was
vomiting, urinating, and having a bowel movement at the same time and now she
cant control any of it. Please let me know if anyone has had this or if you
know why this is happening.
Your friends Tam & Steve

Hi Karen,
This is the generic for Darvon. Not one the strongest pain pills out there
but it has taken the edge off for me. Gets rid of some of the sharp,
piercing pain, but does not leave me pain free. I have been taking Darvon
on an as-needed basis for about a year now. I can't take any of the over
the counter drugs because of all the acid reflux I had before surgery.
My doc never called it in with a refill, but when ever I needed it, I was
just call Walgreens and they called the doc for me. Since the ERCP I had
3-4 weeks ago, the PCP has changed my pain med to Vicodin. A bit stronger,
but still not the strongest on the market. Still having some major pain
inspite of the sphinctometry (sp?). Tomorrow I go to the GI again....
Lots of Hugs
ReeAnn

Hi Andre,
I am a smoker too. One who has tried to quit without much success. The
last guy I dated (not counting the one time dates) was a non smoker and he
rode me so bad about it, I think it made me more determined not to do it for
him.
It was rather bad.. He is widowed too. He lost his wife to Hepatitis and
liver cancer. He blamed these problems on smoking... the only culprit...
Sure I know enough to know that smoking is not good for me (or anyone) but I
don't believe for a moment that it is the DIRECT cause of all my digestive
system being messed up literally from end to the other...
ReeAnn

Jang,
Thanks so much for the info...we've been on the phone nonstop! I'll ask
the doctor about the Stadol--that's something he's never tried.
Take care,
Lorrie

OK Andre - I have to tell you this - I am not a smoker. My dad was. But
sometimes when I am feeling nauseated, I feel like I need to smoke or at
least smell the smoke to rid me of the feeling. I know that is weird. Oh
well.
I hope you are pain free!
Staci

Dearest Shirley,
I'm sorry I'm so quiet. EVERYTHING is beginning for me now - Masters
Program, work (teaching) and a new Music Ministry. It's no wonder I and my
pancreas) get stressed with all of this!
Tell me more about your surgery. It does sound scary. But if it would give
you a better life - WOW. I want to pray for you. I have always felt a
connection with you.
Quick update on me - Took a Lupron shot. Have my period so it has not worked
yet. I do feel some pancreas tenderness now but hopefully can conquer it. I
hope the shots take the right effect soon.
Love ya,
Staci

pancreatitis. Also, I
thought about it before. But now that you have mentioned it....I
have smoked for years. And I have found that smoking helps when I am
having an attack. I do not know if it because I do not eat when I am
having an attack and smoking makes that more tolerable, or I am upset
at the thought of another attack and smoking sees me through that or
concentrating on smoking and breathing actually makes the attack
lessen...this was a good question! Beth

Hi all,
I think I am just blowing off steam. But if any of you have any
input, I am all ears. I just went last week for an ercp, if you
remember. Went fairly well. The pain in my back was gone
immediately, but I was nauseous and in pain afterwards. They did a
sphincterotomy and inserted a stent. They removed it on Friday, and
the VERY FIRST meal I ate caused the same pain as before. So, is
this just the way it is gonna be? Do I just learn to live with it?
I don't go for consultation til Sep 29 so I don't know much-like
what the pancreas looked like, why they had to put the stent in,
etc..........any of you have any similar experiences? Thanks,
Christine

In a message dated 9/4/00 5:52:17 AM Pacific Daylight Time,
jon_bonghi@... writes:
<< Does anybody know what it means when your liver enzymes are elevated?
Hi Jon,
The pancreas, along with a few other organs, produce amylase, lipase, and
protease. The are enzymes which are used to digest the food that is ingested
into our stomach. As the food travels into the duodenum, the pancreas
secretes these enzymes. In patients with gastrointestinal problems, there are
a multitude of problems which may occur. The primary one, which we all share
within this Network is Pancreatitis. In many patients the duct that drains
the juices which contain theses enzymes are blocked by stones or a stricture
in the duct. This cause the enzymes to be back up into the pancreas. This is
what is considered an "insult" to the pancreas. The primary job of the
enzymes is to digest the food ingested, since it cannot reach the food, it
begins to digest the pancreas. This stimulates the pancreas and it responds
by producing more enzymes. It begins a viscous cycle. This would cause you to
go the hospital with severe abdominal pain. If you are early in your disease,
the labs would indicate a high level of enzymes. Later in the disease process
the pancreas is too damaged to be able to produce enzymes anymore. Many
doctors think that you can't have Pancreatitis if you don't have elevated
enzymes. On the extreme contrary, you have a worse case of Pancreatitis.
Let me know if this makes sense.
Karyn

In a message dated 9/3/00 5:16:58 PM Pacific Daylight Time,
niczim77@... writes:
<<
Hi! It's Nic from Canada. I have found some relief using a prescribed
enzyme called Pancrease before I eat anything. It's brought me some relief
after having my gall bladder removed and 4 ERCPs and 2 sphincterotomies that
really did nothing. Hope this helps somebody Nic
Hi Nic,
I would love to come visit you. I have never been to Canada. I heard it was
lovely!
Anyway, back to the issue at hand, (LOL), The enzyme you are referring to, if
it is the same Pancrease, is available in the local health food stores. The
only reason I take Creon is that it is a prescription and insurance pays for
it. I have tried the Pancreas int eh health food stores and it works the
same, if not better than Creon or Viokase.
Karyn

In a message dated 9/3/00 1:35:08 PM Pacific Daylight Time,
rastif2020@... writes:
<<
Karyn, I forgot to ask how long I would remain in the hospital. I am glad
for
you it was 3-4 days. I am hoping it will remain the same for me. last time
when they opened me up for the pseudocyst cleaning it took 2 more weeks. 3-4
is very encouraging thanks. Jim s
Jim,
It was amazing how fast they move you in and out. They seemed to remove one
tube a day. The key is to get up and walk and that is so hard. I had trouble
figuring out the PCA pain pump. I would sleep and wake up in really bad
pain, then I was chasing the pain instead of managing it.
Karyn

Does anybody know what it means when your liver enzymes are elevated?

In a message dated 9/2/00 6:41:48 AM Pacific Daylight Time,
acastenell@... writes:
<< n a message dated 9/2/2000 12:44:15 AM Eastern Daylight Time,
KarynWms@... writes:
<< Supposedly with Pancreatitis there is a
high incidence of mitral valve prolaspe.
Karyn,
You've got to be kidding! Now, something else for me to worry about.
Andre'
It's just amazing. I'll let you know.
Karyn

In a message dated 9/2/00 12:08:29 PM Pacific Daylight Time,
shirlf3542@... writes:
<< I have mitral valve prolaspe. Shirley
Hi Shirley,
Tell me more about that. I can't believe how common it is. Well, you know,
just like Pancreatitis is common, among us folks anyway.
Was yours diagnosed after the Pancreatitis?
Karyn

In a message dated 9/1/00 5:33:01 PM Pacific Daylight Time, loggiekw@...
writes:
<< I hung up the phone and bawled like a baby. I felt like a child who had
been
chastised. I know it sounds silly, but it hurt my feelings so bad. I felt
like he was mad at me for interrupting his day. I have been this doctor's
patient for over 10 years. I have always felt like I could go to him with
anything. He and his family even go to my church.
<<He did at least call in pain med - 15 pills with a refill even. Even
though my feelings are hurt, at least my stomach pain will be better. Karen
Hi Karen,
I am glad that you remained persistent with getting what you needed. I know
that I am so hesitant to call a doctor Friday @ 5pm. It is not a good time,
but life doesn't always have a regular schedule. either.
I am glad that you will have a pain free weekend. Relax.
Karyn

In a message dated 9/1/00 1:36:41 PM Pacific Daylight Time,
Juliespets@... writes:
<< I have scheduled my surgery to repair my trachea site for October 9th.
Wish me luck!! Hate the thought of having my throat cut open again but the
end result will be well worth it (I hope) Hugs, Julie
Hi Julie,
I missed something. Do you have a trach? Or are you having a revision of the
incision line and scar tissue? Why did / do you have a trach?
Karyn

In a message dated 09/02/2000 11:47:37 AM Eastern Daylight Time,
rastif2020@... writes:
<< he did say once the vein is gone
the stomache will return to normal. he refered to the surgery as a
relatively
easy surgery. i guess he can say that he will be on the other end. i am
hoping this may give me back some of my life. i go to SHANDS on the 19th of
this month and the surgery will be on the 20th. please keep me in your
prayers. Jim s
Jim,
Wouldn't that be wonderful! Yes, you will be in my prayers.
Mary Helen

...But you shouldn't sit around in pain all week long and then
call my office at 4 p.m. on a Friday. That is not at all fair." I told him
that first of all it was 3:30, not 4 when I called and that I had thought
the stomach dr might do something for me.
Karen,
He does have a point.And correcting him on the time was probably not a good
response. I have waited until later in the week to call the doc to see if
the pain improves,but I always try to call before Friday. And when since it
is a pre-holiday Friday, you were lucky to get him at all.
Diane

Debbie,

Mary Helen,
Zofran is very expensive(although not as bad as another nausea med someone
mentioned recently--over $1000 a month). The last I knew it was about $850 a
month. It had hardly any side effects and lasted almost the whole 8 hours.
Now I can only get it if I'm throwing up uncontrollably and my doc sends me
to the ER. My doc even tried to get the company to give him samples so I
could get it---they would not do it. So now I end up with compazine or
vistaril--phenergan makes me more nauseous when I take it po. IM or IV is
the only way it seems to help. Strange, huh?
Diane

In a message dated 9/2/00 8:22:22 AM Pacific Daylight Time, loggiekw@...
writes:
<<
I am going to get over my druggy fear and I am going to begin asking for
pain
med. Maybe for now, the only thing that can be done is pain management. I
am going to quit being ashamed of needing something more than over the
counter meds for pain. I know that I am NOT a druggy and so do my friends
and family. Who cares what the doctors think? Actually, I really do care
what they think, more than I should. But I am going to put taking care of
me
first!!!!
Thanks for all the love and support. I couldn't make it through without you
guys.
Love to all,
Karen
Hi Karen,
I support 100%. You have to do whatever you have to do to take care of your
self.
Karyn

In a message dated 9/1/00 8:52:05 PM Pacific Daylight Time,
LenhartROCKO@... writes:
<< Hi all They have a coverage for medicare that is called gap insurance, it
is
a supplemental insuance you can purchase. But guess what ? it only covers
$1,200 a year and guess how much it cost for a year of coverage -- $1,200
is
that stupid or what. you cant win.
Tam & Steve
That is the stupidist thing I have ever heard of.????????
Karyn

--
On Sat, 2 Sep 2000 14:54:23 shirlf3542
feel. I think it upsets us so very much because we are in so much need of them
to help us.
I've just had an unpleasant encounter with my primary doctor. He is a man I've
worked with for 10 or 12 years & have seen as his patient for about 4 years. I
went to him with a sudden onset of swollen legs, chest pain, dizziness,
shortness of breath. He sent me for lab work & only communicates by having his
office people relay phone messages to me. Its been almost impossible to get him
to come to the phone himself. I spoke to him when I ran into him at work & told
him exactly how I felt about his using this buffer system so he wouldn't have to
waste his valuable time speaking with his patients himself. I'm not sure where
it will go from there.
I don't think we get upset simply because we are so dependent on the doctors.
For myself, its also the disappointment in the doctor's character. I had
thought he was a caring person, as well as a good clinician. It hurts to find a
lack of caring in someone that I thought better of. I can't help but feel that
if he treats me like this, how is he with new patients that he hardly knows.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

--

back with only the tail of the pancreas is not draining properly. and since this
is where all the
draining good. they will remove the spleen and it is the splenetic vein that has
thrombosed giving me gastric varacies. he did say once the vein is gone the
stomache will return to normal. he refered to the surgery as a relatively easy
surgery. i guess he can say that he will be on the other end. i am hoping this
may give me back some of my life. i go to SHANDS on the 19th of this month and
the surgery will be on the 20th. please keep me in your
Jim, I hope this will be the start of the return to a normal life for you.
Great way to start the holiday weekend!
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

--

flip flop. I am very worried and I think it is that fear that contributes to my
anxiety.
My lab values are pretty much normal also & my cardiologist is also ruling out
mitral valve prolapse. He doesn't hear any murmers & doubts that he will find
anything. He was concerned that something in the pancreatitis disease process
may predispose to a poor reaction to Lipitor. Did you ever take this med? If
so, when & for how long?
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

Sorry Andre' I'm not a smoker. *S*

In a message dated 9/1/00 1:28:40 PM Pacific Daylight Time, jang2@...
writes:
<< Karyn, I'm also scheduled for an echocardiogram (on Wed) for my swollen
ankles & feet. Are you taking Lipitor? I think my edema, shortness of
breath, chest pain, lightheadedness, mouth blisters are a reaction to
Lipitor. The cardiologist & dermatologist think so too. Who knows what my
primary doctor thinks; Please let me know when you get the results back.
Jang
Every single one of my lab values are normal. I have now resorted to wearing
flip flop. I am very worried and I think it is that fear that contributes to
my anxiety.
I'll let you know about the echo. Supposedly with Pancreatitis there is a
high incidence of mitral valve prolaspe.
Karyn

I was just curious as to how many in our group smoke (Cigars, cigarettes,
pipe ...). As a smoker I find that it relieves attacks before they get full
blown. I have been told that it isn't necessary for me to smoke, it's just
the deep breathing that I do whenever I inhale the smoke. I tried to do this
without a cigarette a few times to see if it would work in my case, but it
never came close to stopping me from having an attack. However, cigarettes
in my case do seem to work.
Does any one else find this to be true? I know smoking is bad for your
health, but it does seem to help me get through my crises periods better. By
the way, started smoking prior to my knowing about my pancreatitis. Also, I
am not condoning smoking to anyone. It may or may not work for me but it is
still a bad, filthy habit that one day will mean the end of me (if my
pancreas doesn't do me in first).
Just curious since it's never been brought up. We always speak about
drinking and pancreatitis (I don't and never have drank alcohol in my life)
but never mentioned anything else (vise-wise) like smoking.
Andre'

In a message dated 8/31/00 9:56:36 PM Pacific Daylight Time, KarynWms@...
writes:
<< I think that insurance companies, Medicaid, and Medicare should allow a
patient to receive a medication when the doctor can testify that it s the
only thing that works. I know that some are more lenient than others.
I will keep praying for you.
Karyn
Hi all They have a coverage for medicare that is called gap insurance, it is
a supplemental insuance you can purchase. But guess what ? it only covers
$1,200 a year and guess how much it cost for a year of coverage -- $1,200 is
that stupid or what. you cant win.
Tam & Steve

There is supposed to be a medication just like zofran that is much cheaper.
I get violently ill after being put to sleep and only zofran helps. An
anesthesiologist told me about the other medication. I have no idea what the
name is but maybe talking to a pharmacist you could get the name. This was
about 2 years ago that I was told about it.
Karen

In a message dated 09/01/2000 4:02:42 PM Eastern Daylight Time,
poncho9191@... writes:
<< FYI I have tried both the "supplement," mine was in a capsule
form, and the raw like from the grocery store and I think I have had better
success with the raw stuff. If it's too spicy try a smaller piece.
Thanks. I will.
Mary Helen

In a message dated 9/1/00 4:57:08 PM Eastern Daylight Time,
acastenell@... writes:
<< <<
Instructions for Life in the new millennium from the Dalai Lama:
I don't know if the old Dalai really wrote this but it is still great stuff

--
On Fri, 1 Sep 2000 10:23:20 lizbear68 wrote:
Back when this all started for me, my GI doc started telling me that he wanted
me to just go to a pain specialist and leave it at that. He said that few people
do surgery on the
leaves people worse off than they were. I left this GI doc because I felt like
he was giving up too easily and that I needed more answers. Now, a year later,
and after hearing so many stories, I'm wondering if he was right.
Elizabeth, when I was first diagnosed, my GI doc also said to take whatever meds
were needed for pain, that nothing could be done to cure pancreatitis. I felt I
couldn't just treat the symptoms without trying to tret the cause. I saw many
doctors all over the country; had sphincterotomies & stents. Never agreed to
major surgery.
At this point, I am happy to settle for controlling pain & nausea (if they CAN
be controlled). I don't regret trying to find "the silver bullet" though; I
KNOW I did everything possible. You have to do whatever will give you some
piece of mind.
Hope everyone has a safe, comfortable holiday weekend.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

In a message dated 9/1/2000 4:38:18 PM Eastern Daylight Time, ajc@...
writes:
<<
Instructions for Life in the new millennium from the Dalai Lama:
1. Take into account that great love and great achievements involve
great risk.
2. When you lose, don't lose the lesson.
3. Follow the three R's: Respect for self; Respect for others; and
Responsibility for all your actions.
4. Remember that not getting what you want is sometimes a wonderful
stroke of luck.
5. Learn the rules so you know how to break them properly.
6. Don't let a little dispute injure a great friendship.
7. When you realize you've made a mistake, take immediate steps to
correct it.
8. Spend some time alone every day.
9. Open your arms to change, but don't let go of your values.
10. Remember that silence is sometimes the best answer.
11. Live a good, honorable life. Then when you get older and think back,
you'll be able to enjoy it a second time.
12. A loving atmosphere in your home is the foundation for your life.
13. In disagreements with loved ones, deal only with the current
situation. Don't bring up the past.
14. Share your knowledge. It's a way to achieve immortality.
15. Be gentle with the earth.
16. Once a year, go someplace you've never been before.
17. Remember that the best relationship is one in which your love for
each other exceeds your need for each other.
18. Judge your success by what you had to give up in order to get it.
19. Approach love and cooking with reckless abandon.

--

Karyn, I'm also scheduled for an echocardiogram (on Wed) for my swollen ankles &
feet. Are you taking Lipitor? I think my edema, shortness of breath, chest
pain, light-headedness, mouth blisters are a reaction to Lipitor. The
cardiologist & dermatologist think so too. Who knows what my primary doctor
thinks; he doesn't return phone calls. (I should say soon-to-be ex-doctor)
Please let me know when you get the results back.
jang
--== Sent via Deja.com http://www.deja.com/ ==--
Before you buy.

In a message dated 9/1/00 3:17:23 PM Eastern Daylight Time,
MaryHelen4@... writes:
<< Poncho - Odd you should ask that. Just last night one of my friends said
to
try Ginger for nausea. I bought the supplement and took one last night.
Hardly slept at all, but don't know if it was from that or just the usual.
I'm sure going to give it a try.
Mary Helen
Mary Helen, FYI I have tried both the "supplement," mine was in a capsule
form, and the raw like from the grocery store and I think I have had better
success with the raw stuff. If it's too spic