My blog

Dear Anna,
I'm not going to be on the computer later so I just wanted to let you
know that I will be thinking of you!! You are in my prayers. I know that
everything will go much more smoothly than last time. Let us know how you are
doing.
Elizabeth

In a message dated 1/9/01 11:29:33 AM Central Standard Time,
briffle@... writes:

Karen.....
I for one do not want you to unsubscribe! I need you!!!! I have an
appoinment February 5th with a new Rhuemy Dr.
My GI says he is still sure that this Pancreatitus is from a connective
tissue disease. I am desperatly trying to find something relative to
match it with. My GI says he can not believe my ANA is negetive and he
is having me retested.
He is certain I have Chronic Fatigue.
I have been feeling better lately.....but when I am down, I am like
you, NO energy to speak of!
So I don't want you to leave as I need your advice and help. I am
signed up with a lupus group but they are not real active or helpful!
Thanks Karen.....
Becky

Becky,
You are so sweet to say you need me. It is a good thing to feel needed -
especially when you feel like you aren't much use anymore! I hope you find
something out from the rheumy appt. It is possible to have lupus and have a
negative ANA. It is also possible to have a negative ANA one day and then
highly positive the next. According to my rheumie - the level of the ANA is
not always indicative of the level of the disease. You can have a very low
ANA and be in a full blown horrible lupus flare. If your ANA has only been
checked once, then I'd definitely insist that they check it again. My
rheumie is still insisting that all my health problems are unrelated. I have
lupus, had acute panc, have blood in my urine, recurrent UTIs, pitting edema
in my legs, and so on - he insists that these are all separate problems -
totally unrelated to one another! Bullshit! Excuse my l! anguage but I don't
buy it. Lupus and most other autoimmune disorders can affect almost anything
in your body - I don't buy that the things I have going on are all unrelated.
However, my rheumie is being very supportive of my applying for disability
so I will stay with him for now.
Hang in there, Becky - the normal length of time for diagnosis of lupus or
other related disorders is about 3-5 years! Keep pushing for answers.
Wishing everyone a pain free day.
Karen

I have thought of unsubscribing from the panc group since I definitely
don't
have chronic panc at this time. However, I still care and worry about
of you
and don't want to lose touch. So, if you guys will still have me, I'll
just
remain a mostly silent member and keep you all in my prayers.
Right now, my biggest problem seems to be my lupus. As long as I get
tons of
rest I don't feel so bad, but working is increasingly difficult.
Yesterday
was particularly bad - I even had to rest after my shower for an hour
before
I could finally do something with my hair and a little makeup (which
only
takes me 10 minutes) I finally turned in all the paperwork for my
disability
retirement at work. I've been told it may be six months before I hear
anything on it.
Hope this finds everyone having a good day.
Karen
Karen.....
I for one do not want you to unsubscribe! I need you!!!! I have an
appoinment February 5th with a new Rhuemy Dr.
My GI says he is still sure that this Pancreatitus is from a connective
tissue disease. I am desperatly trying to find something relative to
match it with. My GI says he can not believe my ANA is negetive and he
is having me retested.
He is certain I have Chronic Fatigue.
I have been feeling better lately.....but when I am down, I am like
you, NO energy to speak of!
So I don't want you to leave as I need your advice and help. I am
signed up with a lupus group but they are not real active or helpful!
Thanks Karen.....
Becky

In a message dated 1/8/01 11:26:28 PM Central Standard Time,
CJWatts88@... writes:

Karen, how do the
doctors tell definitely if you have Chronic Pancreatitis?

Carole,
My newest GI did an ERCP in November. He said the pancreas looked healthy
and he couldn't even tell I'd had acute panc (he said sometimes even just one
attack can leave scar tissue). When I asked him, he told me I definitely do
not have chronic panc at this time because the panc looks fine. I then said,
"It's probably highly unlikely that I'll ever have another acute attack then,
right?" He replied, "No, I can't say that - since your triglycerides are
high you could have another acute attack at any time - that's why we must get
them down - even if it means medication for life." What the GI found in my
case is that my entire stomach wall is inflamed most likely because of gastic
bile reflux. He said the gastric bile reflux is a complication of having the
gallbladder removed. He explained that the bile is gushing from the ducts
and then splashing back into the stomach instead of staying in ! the
intestines. He has me on ulcer meds (Carafate) and med to move things
through my stomach faster (Reglan) so the bile doesn't have as much time to
cause damage. If the meds don't work, the only option is to re-route and
remove part of my stomach. I think the meds are working for now because my
stomach is much better. I only wish the same could be true for all of you.
I have thought of unsubscribing from the panc group since I definitely don't
have chronic panc at this time. However, I still care and worry about of you
and don't want to lose touch. So, if you guys will still have me, I'll just
remain a mostly silent member and keep you all in my prayers.
Right now, my biggest problem seems to be my lupus. As long as I get tons of
rest I don't feel so bad, but working is increasingly difficult. Yesterday
was particularly bad - I even had to rest after my shower for an hour before
I could finally do something with my hair and a little makeup (which only
takes me 10 minutes) I finally turned in all the paperwork for my disability
retirement at work. I've been told it may be six months before I hear
anything on it.
Hope this finds everyone having a good day.
Karen

In a message dated 10/22/2000 8:38:20 PM Pacific Daylight Time,
adrienne@... writes:
Subj: [pancreatitis] Re: Methadone for pain
Date: 10/22/2000 8:38:20 PM Pacific Daylight Time
From: adrienne@... (Adrienne Blue)
Reply-to: pancreatitis@egroups.com
To: pancreatitis@egroups.com
Hi David-
I am taking Methadone 15 mg 3x a day. It was increased the last time
I went into the hospital (July 22 - Aug 19) from 10 mg 3x a day. I
think it works very well for me. I use Vicodin for breakthrough
pain, averaging about 6 a day.
I used oxycontin before switching to methadone. I was sleeping all
the time and just could not get out of bed. My GI switched me to
methadone because it levels out the baseline for pain. It eliminates
many of the highs and lows associated with many other narcotic
drugs. The vicodic (hydrocodone) is used only after meals or when I
have what I call mini-attacks. Until I started getting malnourished
again, I could function fairly well. It does not impair my thinking,
which I like.
Be careful not to self-regulate this medication (or any other for
that matter!). You have GOT to follow the dosage prescribed by your
doc. When it is time to go to another medication or off alltogether,
you will have to wein off slowly. Not because of addiction, but
failing to do so could cause a pancreas attack. I know from
experience. :)
Hope this helps.
Hi adrienne, sorry such a long reply time..i've here,there everywhere
lately...My current dosage prescribed now is up to 140mg. a day...(10mg.
tab)=1-3, 3-4 times a day with 1-2 added PRN...it seem to have leveled off
there...it's been about three months that i've been on it and i'm staring to
get my life back...workin out and all that good stuff..btw, i became diabetic
as well as onset of chronic pain last June. I was diagnosed a chronic
almost 4 years ago, and was one of the fortunate few pain free/ chronic panc.
patients ( they say like 1 in 10 of us are pain free)...
It was nice while it lasted, so now i've had to learn to live on
narcotics..there's nothing else that can be done, as I'm sure you know. At
least this methadone doesn't suck you in like those damn oxycontins, MS,
dilaudid...I've heard the fentanyl patch has good results as well.
Anyway..like I said, sorry for not replying sooner...this email was under a
stack of misc. stuff on my puter...
Give me a holler some time, let me know how you're doin,k?
Peace & painfree days & nites to you !!!
yours truly,
Dave Lowell ~\m/~

Gut Morgan ILKA Velcomming to this groups board
Best wishes Poncho

Dear Christine,
My advice is...go for the test. It isn't as bad as having an ERCP and
it may give you answers. I know how you feel about not wanting to waste the
doctors time. I've been there many times. On the other hand, you won't know
what the EUS shows (or doesn't show) until you have it. Not showing anything
may be a help, too!
I am glad to hear that you are tolerating a little something. Maybe it
is a very small step forward??
That is my two cents for now...I hope it helps. Take care of you...
Elizabeth

Hi Ilka.

Welcome to our group! What school did you attend in Indiana. I live in Northern Indiana.
It is nice to meet you!

Becky

Hey guys,
Happy 2001 !!! Hope it's a better year for us all. btw, is there any way
to reduce all the emails that i seem to get from the group...i think some
people are hitting 'reply all' or something, instead of responding to
pancreatitis group members individually...there's like 800 letters in my
box...I know i aint THAT popular!!! Most of them seem to be personal replies
that dont need to be shared with every single member..., i dunno. Anyhow,
Peace, good health and of course painfree days and nites.
Yours,
BravDave \m/ \m/

Hi all,
I have a really dumb question and I really truly do not know which
direction to go with it.
Most of you know my history. So here goes. I have been feeling
somewhat better the last couple of days. I mean, sometimes I can eat
a popsicle with very little pain. I can drink a few ounces of water
as well. Sometimes I hurt a little bit more, but it is not
intolerable.
My question is this: I am due to go in for an endoscopic ultrasound
to determine if I truly do have chronic pancreatitis as opposed to
acute bouts. Should I cancel it and assume that I am getting
better? Or should I go through with it and assume that I am having a
few good days ( I have been doing this since March of 2000). I mean,
I don't want to travel that distance and waste the doctor's time as
well as mine if I am getting better. But on the other hand, I really
need to know if it is chronic yet or if I have a reprieve for the
time being.
I don't mean to sound dense, but I am really struggling with this
question. The last time I went through something similar I almost
cancelled a sinus surgery because I had started feeling better. I
didn't though, and the doctor said he had NEVER seen an infection as
bad as that. So you can see where I would start second guessing
myself.
Help!
Christine

Hi!
It's so nice to have you here on board. You will find many answers
to your questions and lots of love and support. I am sorry that you
have to live with this disease. Where are you with it at the
moment? Are you in constant pain? Are you able to eat anything?
Und wenn du ein Bisschen deutsch sprechen will, moechte ich auch
ueben! :-) Mein deutsch ist gar nicht fliessend, aber ich will
immer ueben wenn ich kann. Wo in Deutschland wohnst du?
Again, welcome and best of wishes to you in your journey with this
disease. How much longer do you have to study and what will you do
afterwards?
Be well,
Christine

Hello everybody!
Since yesterday I´m a new member of your group. I´ve tried to mail
you something yesterday but obviously it didn´t work...
So I´ll introduce myself briefly. My name is Ilka Rödder. I´m 23
years old (female, since my name might not be too much around in the
US) and I live in Germany. I´m studying music and English. Since 1998
I´m diagnozed with chronic pancreatitis. From that time on I´ve had 9
ERCP´s (endoscopic-retrograde-cholangio-pancreaticographies) and a
DEPKR (duodenum-preserving-pancreatic-head-resection)-Surgery in
march 99 which was done in Bern/Switzerland and worked out very well.
It´s in the family. My dad suffers from pancreatitis, my uncle does,
my grandpa died of it and so did his dad.
I got your adress from my hostmother who lives in Indiana. I´ve spent
a high-school-year in Indiana in 1994/95 right before my problems
with pancreatitis started.
So I hope we´ll get to talk a little. I found it really neat to have
a homepage where there are people that have to deal with the same
problems I have. So maybe we can help each other.
Love, ILKA

Dear Person with Chronic Panc.,
I have had about seven of these Cat scans with contrast over the past
eight years, and they were for verious reasons. They seemed to be the most
helpful before having surgery so the surgeon could get an idea of what he
was going to encounter once he opened me up. For example, he used the CT.
scan before my Puestow surgery to see if my ducts were dilated enough to
skip doing a full blown Whipple, or the easier Puestow. The last time I had
one was last October while hospitalized with another Panc. attack when he
decided to do the Whipple operation to see the deterioration in the Panc
divism ducts. He could see by this that the ducts were almost completely
scarred over, and this was useful information to have before surgery. Of
course I've had over 2 dozen ERCPs, but they don't do me any good anymore,
so the Ct. Scan was easier on me, since they can't ever give me enough meds,
to put me completely out, and thus, I dread those ERCPs. I hope this info is
of some use or help to you and good luck in your treatment my Pancreatitis
friend!
Sincerely,
Henry

In a message dated 1/8/01 12:16:48 PM Eastern Standard Time, KarynWms@...
writes:

Hello to all,
I have not been able to post much for the last 3-4 weeks. The word is that
you all have kept the group solidified, serving the mission statement for
the
Network. That is to show love and support to each of the members, sharing
your experience, strength, and hope. The holidays are hard for most people.
They are particularly difficult for those who are living with Pancreatitis.
I have reviewed the posts and am so happy to know that so many new people
have found a place where they can share their feelings, fears, and ask
questions. Although we are not doctors, there are many healthcare
professionals who can help you understand some of the technical questions
you
may have.
I just wanted to tell everyone that it feels good to be on an upswing after
feeling bad for the last few weeks.
I do have so many ideas for this online support the Network provides. My
mind
rarely quits thinking about how to expand this Network to those who
continue
to feel the loneliness of this disease. I am working on three or four
seminars for this year. Based on the positive response from both the
members
of the Network and the speakers, the 2nd Annual Symposium will be held
again.
Hugs, Karyn

Hi Karyn, sorry that you haven't been feeling well the past few weeks but I
am happy to read that you are on an upswing. I hope you stay on the upswing.

When and why are we getting advertisements on our postings. Did I miss
something while I was in the hospital? Shirley

Dear Tammy,
This is Karyn, the moderator for this very caring group. Please know
that we hear your pain, the fear, and the exhaustion. Every word that
you have written must have been difficult to share. It describes that
empty void that this disease has created. I know that void very well.
No one can say that they completely know the depth of your pain. I
have only been living with this disease since 8/4/99. But every day
is a battle. This disease attacks us phisically, mentally,
emotionally, and spiritually. I know that when I feel spiritually
grounded, I am in a better space to look this disease in the eye and
continue to work a program of action to take care of myself
physically. And that is so hard. For every individual within this
large international network of Pancreatitis survivors, there are
probably the same number who have a routine that makes living one day
at a time easier.
That was a brave thing to do in writing this post. It is taking
action. It is often the first step in combatting the depression this
disease causes.
Love,
Karyn

Hello to all,
I have not been able to post much for the last 3-4 weeks. The word is that
you all have kept the group solidified, serving the mission statement for the
Network. That is to show love and support to each of the members, sharing
your experience, strength, and hope. The holidays are hard for most people.
They are particularly difficult for those who are living with Pancreatitis.
I have reviewed the posts and am so happy to know that so many new people
have found a place where they can share their feelings, fears, and ask
questions. Although we are not doctors, there are many healthcare
professionals who can help you understand some of the technical questions you
may have.
I just wanted to tell everyone that it feels good to be on an upswing after
feeling bad for the last few weeks.
I do have so many ideas for this online support the Network provides. My mind
rarely quits thinking about how to expand this Network to those who continue
to feel the loneliness of this disease. I am working on three or four
seminars for this year. Based on the positive response from both the members
of the Network and the speakers, the 2nd Annual Symposium will be held again.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

most cat scan are useless ercp is the best in the long run with ercp they can
see with their own eyes and can tell if any ducks have stones or not or if
something is blocking the ducks most doctors don,t know what to do so they
run these test just to make the paitent feel good 95% of doctors will tell
you sooner or later they don,t know what else to do if you are lucky enough
you will find a doctor that will control the pain thanks cecil

Hi, can anyone please tell me about their experiences with abdominal
CAT scans with contrast in the diagnosis of CP and the value of these
CAT scans in evaluating the severity and stage of CP. thanks to all.

Thanks Steve and hang in there my friend I know it is hard watching someone
you love give up, there has to be some better days .. keep your chin up and
know you ae in my and everyones thoughts and prayers and that God is watching
over you and your family
hugs and kisses
Wishing you all a
pain free day Anna from Michigan

First let me say thank-you to everyone for their constant love and support
for my family and myself. I wish that I was as strong as I used to be, I
wish that I had the strength to get out of bed and fight this awful illness.
I just read a post from Carmen and most of what she wrote is dead on, except
the answer to a question. How do I get out of this? I am so dead inside ,
their is nothing left in me to even make an atte-mpt at fighting this. The
very thought of it is overwhelming to me, let me rephrase that everything is
overwhelming to me. I have let everyone who knows me down, most of all my
children. I wanted my daughters chritmas vacation to be spent doing anything
together as a family. But instead Mommy spent most of the two weeks in bed
sick- vomitting, even talking made me throw up. I've been to therpy.
anti-depressants the whole nine yards, But none of it seems to matter when I
wake up to the same shit everyday of my life. I'm fully aware of the fact
that I'm hurting everyone around me but like I said I am so dead inside.
Therapy is not going to make me stronger, It's not going to make me hold down
even liquids. I'm catholic I do believe In god, I have not been to church in
almost two years but I pray to God all day long. I don't pray for a cure I
pray for strength, I also pray that my children don't inherit this from me.
I'm in a very distraught and angry state of mind right know, I'm completely
exhausted. I think about death everyday of my life -not suicide, But how this
ILLNESS Is gonna kill me. Whether I get another infection In my medi-port or
a seizure from medication, I just feel I will die young from this illness or
a complication to it. I can't eat, sleep,drink or go to the bathroom without
difficulty, I live on pain meds, I spend more time in the hospital then I do
at home. I feel like this illness Is progressing day by day . This illness
has got the best of me it has sucked the strength and the life right out of
me. My husband and family want to know why? I don't know why, I just know I'm
dead inside and out. I would like to know does anyone else feel defeated? Is
anyone just givig up like me? Am I crazy? Is It taboo to talk the way I am?
AND MOST OF ALL, CAN ANYONE TELL ME HOW TO GET OUT OF THIS? These are my
questions.
I do apoligize If I've offended or upset anyone, But this Is a support group.
Thank-you for your undying support friends-
Tammy

Christine and Cecil, please know that I am praying for both of you and your
familles during this time of your loss. Maybe the two of you can comfort
each other in some way. Take care of yourselves and I will continue to pray
for you both.
In my thoughts,
Terri L.

In a message dated 1/6/01 10:13:27 AM Pacific Standard Time, mrsteep1@...
writes:
<< Steve could you please send my your address I would like to send a
card with a note in it and hope that she reads it.. I could sure use
her right now too.. I miss her and our talks... thanks steve sorry
but if anything I can do let me know...Love Anna
Anna our address is 6566 Rosemont dr. Saginaw, MI 48603 THAN YOU!!
Your friends TAm & Steve

Dear Henry,
Yes, I enjoyed our chat as well. I always look forward to hearing
from you. Again, thanks for the kind words about my mother. It's
funny how the little things set me off. But by God's grace, I will
see it through. I have some wonderful brothers and we will see it
through. When we get through the hard part, we can celebrate her
life.
My ultrasound is a week from Monday in Indianapolis. Dr. Sherman
said it could be done in Ann Arbor if I wanted. He said, "I THINK
that they are capable of this procedure." Needless to say, we are
driving the extra miles to Indy. He trained all the people in Ann
Arbor and knew of them when we talked. He is awesome. That is the
name of the medicine for the pancreas. I keep forgetting it. But he
said it would work well. I hope something does.
I am so glad you are doing better with the feeding tube sans TPN. It
can only get better from here, right?
How is the job? Staying busy? I hope you are loving it and not
stressing yourself out too much over it!
Take care my friend.
Be well,
Christine

In a message dated 1/6/01 9:49:03 PM Central Standard Time, JannaMF@...
writes:

I am tired of chicken and tuna...i am tired of being
treated different...i am tired of being sick...i am tired of the
pain..I hope to share a lot with you people and learn a lot from your
eexperiences...i also hope to someday indulge in a supersize hot
fudge sundae with brownies and not get deathly ill from it..

so sorry to hear that you are having problems again. thank goodness i love
chicken and tuna - but you know a big 'ole steak would be good every now and
then! ha. do they know what your panc. is from?? let us hear from you.
debbie s. (ark)

Dear Christine,
Hello my friend. I enjoyed chatting with you on the Instant Messenger last night! Thank you for rininging me up. I am so terribly sorry to learn of the sudden loss of your dear mother. I'm glad that you could be there with her when it happenned. Words fail me at a tragic time like this, but let me say to you that may God bless you and your family, and give you the strength to endure your tragic loss. I wish there was something more I could say, but like I mentioned, words sometimes fail at these times. God Bless you, and the memory of the years that you shared with your mother.
When is your endoscopic ultrasound? The medcine that your doctor is prescribing for you sounds like a hormone shot that I get once every few months. It's called, Sandostatin, and it does help the pancreas slow down, and be less likely to go into an attack. I hope this works for you. The first time I had it i had an attack within 24 hrs., however since then it has been more helpful along with the usual dietary discretion, and enzymes, plus the lightened load with TPN, and now my J-tube. The J-tube does help more thatn the TPN, with the diabetic troubles that I've had the past three years. You remain in my thoughts and prayers for a successful outcome, and a better time in the future my friend!
Your Pancreatitis Pal,
Henry

In a message dated 1/6/01 9:13:50 PM Central Standard Time, smraef@...
writes:

Debbie, I was so sorry to hear that your family has had such a difficult
time. I hope all is going better now and all are well again.

HI! we are all doing fine now. jennifer is still on a walker and she and my
son kris were married on Jan. 1. i've had good days and bad - up and down
like a merry go round. glad you are through with your school work. glad to
hear from you again. debbie s. (ark)

Hi Jana,
First let me say I love your name. Secondly, welcome back again. I
am relatively new to this group, as I have only dealt with
pancreatitis since March of 2000. But it has been a continual battle
and I am on tpn right now. I am hoping to be weaned off of it soon.
I hope so in one way and in another way I am nervous because when I
eat I hurt. But I guess I don't want to be on this forever either
:-) So we will see how it goes. I hope this finds you doing a
little bit better. What are the docs saying? That for me is the
hard part. My docs don't give me a lot of answers. They just say we
need to hope for the best. Ah well, I guess there are worse fates in
life. Sometimes it doesn't seem like it, but I know it CAN be
worse. Where do you live? Do you have good docs? Take care of
yourself Jana and if there is anything I can do, just holler!
Be well,
Christine

In a message dated 1/7/01 9:55:09 AM Eastern Standard Time, jang2@...
writes:
done. That process is really draging out. Still waiting on the
results of my HIDA scan. Oh how I hate waiting for test results!

Hi Mona, I haven't had the opportunity to talk with you yet. I sure hope
your breast biopsy is soon and everything is fine. It sounds as though you
have more than one stress on you right now. I will be thinking of you and
please let us know how it all turns out. I will be praying for you Mona.
Love, Shirley

Hi you two,
I have been away for two weeks, and wanted to touch base with you and
welcome you to the group. Mona, I believe I talked to you on another
group at one time (not as friendly as this one :-) You live near Ann
Arbor right? Or work there? At the University? What do you do?
Refresh me on your condition, as I have been out of the loop for a
while. Anyway, it's good to have you here.
Sandy,
Please fill me in on you too. I am interested in everyone's history
and would like to get to know you better. Are you the one who was
here a year ago? Please let me know how it's going with you. I am
glad you are here.
Be well all,
Christine

In a message dated 1/6/01 8:00:03 PM Eastern Standard Time,
sunflower6668@... writes:

My dear friend Henry,
Thanks so much for your wonderful words of encouragement. I have
just now started to plow through some of the posts I have missed over
the last two weeks. I noticed this one and had to answer.
We went to Omaha and had a wonderful Christmas with my family. We
were all there except one brother. Grandkids were there. It was so
nice. And I ate some of my mom's special meal. And am I ever glad I
did. For she passed away unexpectedly four days later. She had
fluid on her lungs. The paramedics lost her and had to resescitate
in the ambulance. They found out that she went too long without
oxygen and she went into a coma from which she never woke up. After
a ct scan showed massive brain damage (she would have been a
vegetable), we five children decided to pull the life support. She
was gone within ten minutes. It was the single most horrifying
experience of my life. And I am sure that the shock hasn't even hit
yet. We just got back home yesterday real early in the morn. So,
that is my story. God protected me during this ordeal. The pain
wasn't unbearable.
Dr. Sherman wants to do an endoscopic ultrasound to find out if I
have chronic pancreatitis or not (U of M says I do). After that he
says he can give me a nerve block and some very strong meds that
basically shut down the pancreas from putting out any enzymes at
all. So we will see what the outcome of that is. I go back to U of
M later this month too and I am sure she will start weaning me off of
the tpn. Right now I am in too much of a fog to even decipher or
care what is going on. Last night-in my own bed in my own home-I
woke up in the middle of the night and I did not know where I was.
And of course every night and every morn I have pictures of my
mother's house and the funeral and all of that right before my eyes.
I just want to wake up from this nightmare.
Excuse me for rambling. I am definitely out of the loop at this
point. I will check back with you later. I hope that things have
settled down for you. It doesn't seem fair does it? I mean, we go
through all of these procedures and surgeries and hope it gets
better. And it seems as if the solutions are part of the problem.
Take care of yourself my friend.
Christine
Dear Christine, I am so sorry that your Mom passed away. I know too well
how traumatizing that can be. I lost my dear mother when I was 24 years
old. That was the worse day of my life. When I was just recently in
surgery I almost died and my daughter was so upset she flipped out. I
think she was on the verge of a nervous breakdown. For three days she was
in a daze and on the third day she vomited and finally started to return to
her self again. Of course I was finally getting out of danger also.
Christine, I am trying to say that I am so so sorry and I feel that I am
not doing a very good job of it. Please know my heart breaks for you. I
don't know your religion but I feel that your mother is in a wonderful
place. When people would say that to me I didn't want to hear it because I
wanted her here with me. I still miss her and it has been so many years.
I will always miss her. Take care of yourself Christine and know that your
mother is with you everyday. Love, Shirley

It was all
Hi Elizabeth,
Just thought I would put in my two cents. I was diagnosed with
sphincter of oddi dysfunction after an ercp in which they measured
pressure and did a sphincterotomy. Does that help?
I hope you are feeling well after your surgery.
Christine

Sandy,
Hi there my name is Anna and I am newer to the group and I just
wanted to welcome you back, I too feel this group is a god-send and
am very grateful, I have made some great friends and found much
support here sometimes it is just easier to talk with people that
know just what you are going through, my family is very supportive I
don't know what I would do without my parents but it is nice to have
this group to come to and help me with things I have learned so much
from the group that doctors hadn't told me , I had a hida scan ran
because of this group the doctors hadn't run one or even said a thing
to me but when I brought it up that is when they ran it and now Wed I
have my gallbladder out and they think this is the reason my counts
have been up since May, I hope they are right I can't stand this pain
every day and for the last week I have been sick again, sorry for go
on and on but I just wanted to welcome you back and tell you that you
have yet another friend here with the group. Hope you are feeling
well if you don't mind telling me a little about your disease and how
you found out and stuff since I wasn't here when you first posted ..
thanks and hoping you have some good days.
your pancreatis pal Anna from Michigan

me sleep at night and now I think I could sleep 20 hours a day. Does
anyone have any tips on dealing with this? Is fatigue a symptom of
pancreatitis?
Hi Mona. Overwhelming fatigue is a problem for me too. However, I
have had multiple sclerosis for 18 years in addition to the chronic
pancreatitis for the past 9 or 10 years. I'm not sure which
disease causes the fatigue for me, or if both conditions contribute to
it. I take a drug called Cylert (pemoline) for the fatigue. It helps
but doesn't give complete relief of fatigue. Sometimes
antidepressants can also cause fatigue, but lots of doctors feel that
taking an antidepressant at bedtime helps you to sleep better and will
let you wake up feeling more rested.
***************************************************
done. That process is really draging out. Still waiting on the
results of my HIDA scan. Oh how I hate waiting for test results!
I agree. Waiting is the hardest part of the process. Anything is
easier to deal with than not knowing. Good luck. Please let us know
how you are doing.
jang

My dear friend Henry,
Thanks so much for your wonderful words of encouragement. I have
just now started to plow through some of the posts I have missed over
the last two weeks. I noticed this one and had to answer.
We went to Omaha and had a wonderful Christmas with my family. We
were all there except one brother. Grandkids were there. It was so
nice. And I ate some of my mom's special meal. And am I ever glad I
did. For she passed away unexpectedly four days later. She had
fluid on her lungs. The paramedics lost her and had to resescitate
in the ambulance. They found out that she went too long without
oxygen and she went into a coma from which she never woke up. After
a ct scan showed massive brain damage (she would have been a
vegetable), we five children decided to pull the life support. She
was gone within ten minutes. It was the single most horrifying
experience of my life. And I am sure that the shock hasn't even hit
yet. We just got back home yesterday real early in the morn. So,
that is my story. God protected me during this ordeal. The pain
wasn't unbearable.
Dr. Sherman wants to do an endoscopic ultrasound to find out if I
have chronic pancreatitis or not (U of M says I do). After that he
says he can give me a nerve block and some very strong meds that
basically shut down the pancreas from putting out any enzymes at
all. So we will see what the outcome of that is. I go back to U of
M later this month too and I am sure she will start weaning me off of
the tpn. Right now I am in too much of a fog to even decipher or
care what is going on. Last night-in my own bed in my own home-I
woke up in the middle of the night and I did not know where I was.
And of course every night and every morn I have pictures of my
mother's house and the funeral and all of that right before my eyes.
I just want to wake up from this nightmare.
Excuse me for rambling. I am definitely out of the loop at this
point. I will check back with you later. I hope that things have
settled down for you. It doesn't seem fair does it? I mean, we go
through all of these procedures and surgeries and hope it gets
better. And it seems as if the solutions are part of the problem.
Take care of yourself my friend.
Christine

I say I am new again because last year I did introduce myself to this
board and then forgot about it....well a year later I have come back
to read all messages that share the same feelings I do...It all
started in November when after a year of feeling awesome and eating
normal I was attacked once again...the pain was horrible and into the
hospital I went for a week...I hate the hospital...I was out of
school for the next week and decided to go back right before
Thanksgiving...the holiday passed and guess what happen the next
week...December 3....I went back into the hospital in the most
excruciating pain I have ever experienced...I actually laid in my bed
praying that I would die...I then got pretty drugged up and had tubes
inserted down my throat and into my privates cause ..well you know i
was in to much pain to get up and go to the bathroom...well I was
ther for another week and cried for most of it..I am only 22 years
old and I cried cause I thought I was too young to be dealing with
this..anyways its been about a month and I am not allowed to eat fats
or carbs...only protein and vegetable but no fruit other than an
apple a day...I am tired of chicken and tuna...i am tired of being
treated different...i am tired of being sick...i am tired of the
pain..I hope to share a lot with you people and learn a lot from your
eexperiences...i also hope to someday indulge in a supersize hot
fudge sundae with brownies and not get deathly ill from it..
with love, jana

can on those days.
Debbie,
I know that sounds like a good thing to do...but its not. Of course I
can'tfind the info I have on it now. We can get into this bad cycle when we
push as hard as we can on good days, and then spend days trying to recover.
there's a name for that, but I can't remember it. Henry might know what I'm
talking about.
Those days are more costly on our bodies than if we just go about our
regular stuff and try to schedule our errands etc. Belieive me....I've lived
it.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Mona,
I hear you!!! The last few weeks I've been going to bed at midnight and
sleeping until 3-5pm. I'm kitty sitting this week ,and one of the days I
slept until 5pm. It was after dark,and I can't drive after dark because my
meds affect my vision worse at night. I didn't get over to check on the cat.
When I got there today, she had no food. I felt so bad~ I figure if I can
sleep that much, my body must need it to try and struggle with this disease.
Is there someone who can check on the kids when you're struggling with this
fatigue? Sometimes its scary for me because I live alone~~if something goes
wrong, no one will ever know. Hang in there!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Welcome home Shirley!
It's so nice to have you back among us! You've been thouroghly missed! It's
so good your home, take if slow and easy, and I can't wait till you are well
enough to come back and write more to us!
Congratualtions on a job Well Done,
Henry

Shirley,
Welcome home and back to the boards. I hope you are feeling better
today. Just remember to give yourself some time to recover. I will
add you to my prayer list.
Mona

Steve could you please send my your address I would like to send a
card with a note in it and hope that she reads it.. I could sure use
her right now too.. I miss her and our talks... thanks steve sorry
but if anything I can do let me know...Love Anna

ReAnn,
Thanks for your advise, My lady has indeed seen all the posts about the
Gall Bladder surgery and now I believe she is better prepared. Thanks to
everyone for all the wonderful advise.
I am praying for you all each and every day.
Your Friend Leon

In a message dated 1/5/01 11:50:00 PM Central Standard Time,
LenhartROCKO@... writes:

Anna; Tam told me today that if her family or friends call or come over she
does not want to talk to them. One of our friends came over today to bring
some food and Tam would not let her come up to see her. I don't know what
to
do any more. Today I went and got 1000 cc's of IV fluids and ran it through
her at home because she is so dehydrated her eyes are sunk in her head. I
asked what I could do to help her and she said nothing she just has gave
up.
I will keep you up dated.
Your friends Tam & Steve

Steve,
I have not been actively posting in the panc group lately because my stomach
and panc seem to have settled down, but I am still keeping up with the posts
and still pray for each one on the the board. I am very concerned about
Tammy. Have you talked to her doctor about inpatient psychiatric care? I
know Tammy is incredibly sick and has reason to be depressed, but she also
has many reasons to live. Please call your doctor immediately and talk to
him about what can be done for Tammy mentally. She has sunk into a deep
depression and there is often no climbing out without serious intervention.
Please keep us informed and take care of yourself and the babies.
Karen

Shirley!!!!
I am sooo glad you are back, not that you are in pain but you are back. I had
my church pray for you. I have wanted to write but I did not know where to
send it! I finished my 2nd year at grad school. Only one more to go!! My
pancreas is .... better? mostly when I drink smoothies and puddings. Meat
is out of the question for me now. Oh well.
I'll still be praying for you.
Love you, Staci

In a message dated 1/5/01 7:08:23 AM Pacific Standard Time,
MaryHelen4@... writes:
<< Steve, I'm so sorry you and Tammy are having such a rough, terrible time.
I
haven't posted much in the past few months, but read the postings every day.
I've been following you both and keeping you in my prayers.
When you get depressed enough, it seems nothing will help pull you out of
that hole. Have you thought of an antidepressant? It sure has helped the
husband of a chronically ill, bedridden friend of mine. He just wanted to
die and pleaded with everyone who came to visit to help him get out of his
misery. He is still bedridden, but now he is joking and laughing and
cutting
up, just like his old self.
I'll be keeping you both in my prayers. And if I can do anything to help,
please email me personally.
Mary Helen
MaryHellen: They have given her a few different antidepressants and she is
on one now. they dont even seem to work. Thanks for the suggestion though.
Your friends Tam & Steve

In a message dated 1/5/01 3:02:30 AM Pacific Standard Time, mrsteep1@...
writes:
<< Steve
Hi there I am so sorry to hear about Tammy I have called a couple of
times and didn't get through, I wish there was something I could do
if you think me visiting might help you can give me directions and I
will come over, I have lost touch with her and I feel terrible, the
past few days have been bad ones for me but I know that see her
always picks me up too, so just let me know I would love to visit, my
surgery is Wed. but would love to come over before that.. but like I
said all I know is that you live in Saginaw so I would need a few
directions.. you are in my thoughts and prayers.. let me know or if
you just want to talk give me a call ... you got my no.
your friend always Anna
Anna; Tam told me today that if her family or friends call or come over she
does not want to talk to them. One of our friends came over today to bring
some food and Tam would not let her come up to see her. I don't know what to
do any more. Today I went and got 1000 cc's of IV fluids and ran it through
her at home because she is so dehydrated her eyes are sunk in her head. I
asked what I could do to help her and she said nothing she just has gave up.
I will keep you up dated.
Your friends Tam & Steve

From: LynneAR@...
Subject: Re: Steve.....
HI,
NORMAN COUSINS, AN AUTHOR AND FAMOUS, CURED HIMSELF OF A SERIOUS DISEASE IN
THE FOLLOWING WAY. HE THEN WROTE A BOOK ABOUT,IT YOU MIGHT WANT TO GET. A
BOOKSTORE WILL KNOW THE NAME OF THE BOOK I HAVE FORGOTTEN THE NAME BUT NOT
THE LESSON.
GET ALL THE VIDEOS OF COMEDIANS AND COMEDIC THEMESE LIKE BUD ABOUT AND LOU
COSTELLO OR EVEN CHAPLIN'S OLD MOVIES.
THEN INSIS THAT SHE WACH THEM WITH YOU, SHE WILL NOT LAUGH RIGHT AWAY , IT
TOOK COUSINS WO OR THREE WEEKS TO BEGIN LAUGHING.
I HAVE DONE THIS SINCE I HAVE THIS DISEASE AND ONCE I GET MYSELF LAUGHING
OUTLOUD I BEGIN FEELING BETTER. MAKE THIS A RITUAL, IT HASN'T CURED MY
PANCREATITIS BUT IT HAS DIONE WONDERFUL WORK ON DEPRESSION
LYNNEAR
The book's title is ANATOMY OF AN ILLNESS, published by Bantam. He claims
that one good belly laugh was worth two hours of pain killer for him. At
least as Lynnear says, it may help with the depression. I like the Marx
Brothers because with Groucho, Chico, and Harpo, each with a different brand
of humor, something is bound to tickle the funny bone.
You have all been in my prayers. Blessings for a good 2001. Dave

-Christine, I am so sorry for you lost you are in my thoughts and
prayers hope you are doing ok...
your pancreatis pal Anna
-- In pancreatitis@egroups.com, "Sun Flower" <sunflower6668@a...

Hi all,
Well, what started out as a four day holiday trip turned into a two
week long nightmare. We had a wonderful Christmas with my family.
Everyone was there except one brother. My mother passed away
unexpectedly on the 29th. It was horrible. So I will catch up with
the posts as I can. I hope everyone is doing well. Talk to you all
soon.
Christine

--- In pancreatitis@egroups.com, crystal pratt <pratt4_2001@y...
Hi Crystal, all
Karyn hasn't been able to spend much time on the computer lately, but
I'm sure she would want to tell you about her success with MiraLax,
which is a prescription laxative that her pain management doctor
prescribes for her. It comes in a powder form that dissolves
extremely well in liquids, and has worked extremely well for her.
She
takes it on an "as needed" basis, which varies from week to week.
I'm
guessing she winds up using it 1 or 2 times a week on average. I'm
including some info about it that I found on the Web. Ask your
doctor
about it.
Cheers,
--Tull

Steve
Hi there I am so sorry to hear about Tammy I have called a couple of
times and didn't get through, I wish there was something I could do
if you think me visiting might help you can give me directions and I
will come over, I have lost touch with her and I feel terrible, the
past few days have been bad ones for me but I know that see her
always picks me up too, so just let me know I would love to visit, my
surgery is Wed. but would love to come over before that.. but like I
said all I know is that you live in Saginaw so I would need a few
directions.. you are in my thoughts and prayers.. let me know or if
you just want to talk give me a call ... you got my no.
your friend always Anna

-Mona,
I am sorry took me so long to reply I just relized that I am not
getting all the mail to my email address and checked the board, I am
having the surgery here in Bay City at Bay Medical, see I work there
and in order for our insurance to pick it up if they can do it here I
have to have it done here I do fell good about the surgeon thou he is
a good doctor and very good at what he does. thanks for you kindness
it is so sweet of you.. I didn't realize you were so close to me.. we
are kinda neihbors.. How are you doing? I have to go back to the U of
M in Feb. to see Dr Elta do you go there? who is your doctor? sorry
for the 20 questions just like to know all about you.. thanks again
Mona you are a sweetie..
Your pal Anna

I am so glad you wrote this. I want so much to be able to say
something to help, but I have never been in such a position as to try
to aid a mate with such severe depression. My wife has some
depression due to certain factors in our lives, but nothing this
severe nor from a cause so powerful as chronic pain on the level of
pancreatitis. She suffers from a growing arthritic condition, and
bears that well. Other factors contribute to depressive episodes.
Her sense of humor is her greatest asset, and I think what keeps her
going. I, too, use humor in my career, as a tool to manage people who
are generally angry and lacking in maturity. I would have liked to
suggest a humor-based therapy, but lacking the experience of
contending with a trouble of this severity, I feared to be offering
advise without the proper background and wisdom. I am pleased that
someone with such experience advises such.
How do I offer encouragement to someone beaten down by a battle I
cannot even imagine? As is so often the case, I have little more to
offer than prayer, and on your behalf I do pray for strength and
wisdom. And perhaps for someone to come along side you who can help
bear your burdens. May you be granted strength equal to your trials.
Mike Lockridge

Diane-
I have not posted in a long while, due to my master's program. I have a few
weeks off, so I'll post as much as I can. Old peoples' food to me is Jell-O,
pudding cottage cheese, creamed soups. These are what I am living on these
days, but mostly smoothies. I go to Subway or Juice It up and get a smoothie
with protein (The proteins will help with your sugars. It makes the sugars
go in more slowly and therefore not bottom out so fast.) and vitamins in it.
Today, I got out my own blender as it seems that I won't be eating what I fix
for my family much anymore, and I can save money and make my own smoothies.
Sometimes at night though, I get the munchies and go for it with chips. In
the morning, I am usually sorry.
My new doctor, after having pain on the right side for 20 (!) years,
discussed looking at my gallbladder to see if it is not the culprit for my
chronic pain.......
Mona- I too am always tired. I think it comes with the pancreatic territory,
as I am sure, sugars go up and down all the time. I hear you sister! I
always want a nap!
Well, to all my pancreas pals out there - keep your chin up! Remember you
can still make a difference in the lives of others! Be yourselves, imperfect
as we may be, but let your light shine and you can touch a heart today! I
will say a prayer for you tonight.
Love, Staci

HI,
NORMAN COUSINS, AN AUTHOR AND FAMOUS, CURED HIMSELF OF A SERIOUS DISEASE IN
THE FOLLOWING WAY. HE THEN WROTE A BOOK ABOUT,IT YOU MIGHT WANT TO GET. A
BOOKSTORE WILL KNOW THE NAME OF THE BOOK I HAVE FORGOTTEN THE NAME BUT NOT
THE LESSON.
GET ALL THE VIDEOS OF COMEDIANS AND COMEDIC THEMESE LIKE BUD ABOUT AND LOU
COSTELLO OR EVEN CHAPLIN'S OLD MOVIES.
THEN INSIS THAT SHE WACH THEM WITH YOU, SHE WILL NOT LAUGH RIGHT AWAY , IT
TOOK COUSINS WO OR THREE WEEKS TO BEGIN LAUGHING.
I HAVE DONE THIS SINCE I HAVE THIS DISEASE AND ONCE I GET MYSELF LAUGHING
OUTLOUD I BEGIN FEELING BETTER. MAKE THIS A RITUAL, IT HASN'T CURED MY
PANCREATITIS BUT IT HAS DIONE WONDERFUL WORK ON DEPRESSION
LYNNEAR

I dont know. she dosnt talk to her sisters or her friends anymore. I can ask
her. When I tell her to get up because she might feel a little better,
meaning at least shes not laying in bed thinking about it, she bites my head
off. I quit talking to her I cant handle it anymore. I start a new semester
monday and I have know idea wht I'm going to do about the kids. I'm not
talking to my parrents rite now either. Our life is a big mess. When I say I
dont know what to do any more I really mean it. I will ask Tam about talking
to you and I will get back to you THANKS!!!!!!!
Your friends Tam & Steve

Tam is not doing very well she is in a deep depression and I just dont know
what to do any more. Anything I suggest to her she says "no it wont work" she
lays in bed all day and doesnt talk to any one. she wont answer the phone,
she wont help with the kids she just wont do anything. she rarly even takes a
shower. I was in the bedroom today and she flicks threw the channels till she
finds something sad then as soon as it end she flicks till she finds
something else sad. What the hell do I do ? I'm sorry for rambling but I'm
running out of ideas.

Hi Steve,

I am sorry i haven't gotten back to you, but you have been in my thoughts and prayers. Tammy called me the night before we were leaving for vacation and said she wanted to talk. She was going to call me back and didn't. I have been gone for two weeks and she has been on my mind. Will she still talk to me? If she will I will call her.'

I know you are so frustrated and I am sure this is not easy for you. You are so supportive and such a good father. I know she loves you and the kids and I am sure she is at her wits end with this disease. Please hang in there.....she needs you so much!

I am praying for you like mad! Please ask her if I can call and maybe we can talk a little. I will help where I can. Do you have any sugestions?

Becky

In a message dated 1/4/01 7:55:24 PM Pacific Standard Time, Tll619@...
writes:
<< I just don't know if the Celiac will help
with the back pain. Any response from anyone on that????
Hi Teri its Steve. Tam had a celiac block done a few months ago and it did
not do a thing. It numbed her one side for a day and she went rite back to
where she was.
Tam is not doing very well she is in a deep depression and I just dont know
what to do any more. Anything I suggest to her she says "no it wont work" she
lays in bed all day and doesnt talk to any one. she wont answer the phone,
she wont help with the kids she just wont do anything. she rarly even takes a
shower. I was in the bedroom today and she flicks threw the channels till she
finds something sad then as soon as it end she flicks till she finds
something else sad. What the hell do I do ? I'm sorry for rambling but I'm
running out of ideas.
Your friends Tam & Steve

Shirley:
I am so glad you are home. Hope you are feeling better soon you are always in
our prayers.

In a message dated 12/30/00 6:56:28 PM Pacific Standard Time,
cst1973352@... writes:
<< I know what most of you all go through with and the
pain that is associated with it we have dealt with this for 21years so i
know
a little about pancreatitis . if i can be of any help to any one please ask
thank all cecil m street
Cecil, I'm so sorry for the loss of your wonderful Jennifer. Please know that
my thoughts and prayers are with you and your family. I'm sure Jennifer is
looking down and knowing that just by writing to us you will give us strength
to face today.
Please, know that we are here for you if you need to talk.
Terri L.

I am not feeling well and I am in a lot of pain. I can only eat a couple of
bites so it is rough going right now. I will probably have to go back on the
feeding tube Monday. I dread that since it makes me so sick to my stomach.
I will probably try it at a slow rate.
I won't be writing very much for a while but I will try to read your
postings.
Thank you all so very much for all the cards, kind words, thoughts and
especially prayers. I love you all and missed you terribly. I want to tell
you all about my experience as soon as I feel well enough.
Thanks so much Jim for calling and informing the group about my progress.
That was so thoughtful of you. Love, Shirley

Hi Shirley,
"Welcome back, Shirley...we all missed you. I know you are having a pretty
rough time right now so take it easy and we will understand if you don't post
right now. You need your rest to completely recover from your surgery and
sitting at the PC won't help you heal. I will keep you in my prayers and
soon you will feel much better. I see you're online and I started to send
you an IM but I'm sure you don't feel like chatting right now...we'll do that
later when you are feeling better.
Again, I'm glad you are back and your surgery is behind you! We all love
you!!!
Hugs & Prayers
Carole

Hi Karyn,
I was just reading back over some old posts so that I could get to
know everyone a little better and saw that you were writing a book.
Are you still working on it? I just wanted to let you know that I do
some medical writing (well, mainly editing but would like to do some
writing!)and wanted to offer help if you need someone else to review
or whatever. I work for a pharmaceutical company and do writing and
editing there.
I never posted on the board here about the pancreatitis symposium, but
I enjoyed it and received a lot of useful information. I have about 5
doctors appointments this month so I hope to discuss some of the
information I learned. Thanks so much for all your work here.
Mona (the one at the symposium who cried a lot!)

THEY REALLY HELPED ME. THEN WHEN I BECAME SABILIZED I STOPPED AKING THEM. I
RESUME TAKING THEM WHEN I HAVE AN AACK
GOOD LUCK
LYNNEAR

Hello Al......

I'm back from my christmas vacation. I had a great time amd am reading all my mail and catching up!
So hang with me until I sort through everything!

Hope you are all well........Becky

I found out about two months that I have chronic pancreatitis. My
doctor has put me on enzymes. I would like someone to let me know
their experiences with the enzymes, and if they really help.
Sincerely, GLO

Hello everyone!
I hope everyone had wonderful christmas's and a happy
new year.
I am having a horrible time with constipation I have
taken peri colace 4 of them and milk of magnesia
tonight and still have not gone if anyone knows of
anything that might help please tell me soon i am in
so mych pain i can't eat and have been vomiting.
Good luck with your surgery anna. Will u post your
adress so i can send you a card?
I hope you get feeling better debbie. Get rest.
Mona- I think you asked about fatigue maybe you might
have the doc check your iran when i get anemic i get
really weak and tired and i also take a multi vitamin.
I don't know i am just guessing.
I hope everyone is doing great.
Crystal

Hi Everyone,
This isn't related to Pancreatitis but we need our PC's virus free to
correspond so I wanted all my friends here to have knowledge of this virus.
Carole

In a message dated 1/3/01 1:00:54 AM Central Standard Time, mrsteep1@...
writes:

it would have been terrible if she would have
lost the baby after everything else but it sounds like they are starting
the
year off well now... hope things are well with you how are you feeling?

Anna - i haven't done too well the past few days. i managed to get through
the wedding etc; and then that night i was just "dead". this morning i was
throwing up. but better tonight. still feel nauseated, but it will be better
tomorrow, i'm sure. love those "feel good" days - i go as fast and hard as i
can on those days.
hope you are feeling good tonight. debbie s. (ark)

Mona,
Hi this is Anna I am not sure if we have talked before but you hit home,
I know the feeling very well, I did start some vitiamins and that helpped
some, I hope it is from the pancreatis cuz that is what I blame it on,, I
know that the anti depressants can slow you down are you on them? I am and
the doctor told me that it is part of it, most days I have to push myself to
do things if I lay down I go to sleep except when it comes to the night time
and then the pain kicks in and I am awake.. I hope that I was of some
help..let us know what your Hida scan showed I will tell you that it only
takes 3 days for your doctor to get the results so if it has been over that
then call.. you have every right.. take care you are in my prayers
Wishing you all a
pain free day Anna from Michigan

Anna,
I think I saw your post where your surgery is January 10. Are you
having it done at U of M? I live in Canton and work in Ann Arbor. I
will be thinking of you. Let me know if you want a visitor or
anything. I can e-mail you my phone number if you want.
I will be praying for you that day.
Mona

This might be of interest to any struggling with gastroparesis.
jang

Ohhh the fatigue. I can deal with the pain and the nausea seems to be
controlled with Aciphex. But the fatigue. This is the second day I
have been unable to feed my 2 yo and 5 yo lunch. I let them eat candy
while I layed on the couch! This from a person who rarely lets them
eat candy. I can't believe 4 months ago I was trying to find
something to make me sleep at night and now I think I could sleep 20
hours a day. Does anyone have any tips on dealing with this? Is
fatigue a symptom of pancreatitis? On another note, I just found out
I will have to have a breast biopsy done. That process is really
draging out. Still waiting on the results of my HIDA scan. Oh how I
hate waiting for test results!
I hope everyone has a good 2001.
Mona

Hi Staci,
I'm not sure we've talked before, but I'm Diane. I like your comments about
surviving on "old people's food and smoothies". Exactly what is old people's
food? Are you able to get enough nutrition in your smoothies to keep
functioning? What do you put in yours? Ensure, Boost Slim-Fast,fruit? Please
share some recipes with me. I'd like to try that. Basically no matter what I
eat I have pain. I'm trying to find some good alternatives (besides sleeping
all day and not eating at all). My blood sugar bottoms out on me far too
often. You mentioned your pain is on your right side. Have you had your
gallbladder out? That's where my pain first started and it was resolved for
a bit after they took my gallbladder out. If your interested in more of my
story, it can be found at www.wf.net/~bbagwell/diane.htm
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God. (John 3:3)

Debbie,
Congrats on the new daughter inlaw.. I am so glad to hear that the
mother and baby are doing well, it would have been terrible if she would have
lost the baby after everything else but it sounds like they are starting the
year off well now... hope things are well with you how are you feeling?
Wishing you all a
pain free day Anna from Michigan

Karyn ,
I hope you are feeling better soon you are missed very much.. you and all
are in my prayers...
Wishing you all a
pain free day Anna from Michigan

My son married yesterday, New Years Day. Kris and Jennifer thought they
would start the year out right. She got to come home a couple of days before
Christmas from the hospital and is using a walker. Thank all of you for your
prayers and concern in her hospitalization after the auto accident. They are
living with my husband and I and if you remember, they are expecting their
first child in April. All is well with mother and baby - she is just very
tired today. Debbie S. (ark)

In a message dated 1/2/01 5:20:02 PM Central Standard Time, KarynWms@...
writes:

I am trying to catch up by reading all of your posts. I am sure that I'll be
up to writing and answering soon.

glad you are feeling well enough to read all your emails! debbie s. (ark)

To all my dear Network members,
I have not been able to get to the computer for almost three weeks. I have
spent almost two weeks feeling poorly. I guess I was beginning to get
somewhat too comfortable feeling that my disease was under control. These
past few weeks I have had that classic pancreatic pain that just doesn't
give up. It is so hard to do anything else when I hurt like that.
I am so pleased to see how many new members have joined the Network. Tull has
been checking in every day or two. Others have sent me notes, as well. I
can't tell you how wonderful it is to know that the group has flourished with
efforts made to make new members and old feel cared for, loved, and
important. We really need each other for that.
I am trying to catch up by reading all of your posts. I am sure that I'll be
up to writing and answering soon.
Until then, keep up the good work.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

Dear Anna,
You are still in my prayers. Things will go much better this time! I
saw a post of yours on another board (I'm not sure which one). It was all
about sphincter of oddi dysfunction. How were you diagnosed? Did you have a
sphincterotomy? I am curious because I am wondering if that is where my
problem lies... Fill me in if you have a moment. Thanks,
Elizabeth

Dear Patricia,
So sorry to learn that you will have to have surgery to remove your
gallbladder. I hope that they will do it with the scope instead of the
conventional way. I had mine done that way and was back in action pretty
fast. Only spent one night in the hospital several years ago. Compared to
the Pancreatic surgeries this was so much easier. I hope that will be the
case for you my friend. Any surgery is serious, but with this laproscope it
is so much easier! How have you been otherwise? Give me an update when you
are up to it. When is your surgery? Do you have a date set yet? I'm doing
O.K. for me. Hope the board will get busy again now that the holiday season
is over. It's been so quiet.
Your Pancreatitis Pal,
Henry

Dearest friends,
I made it through my second year of my masters program and Christmas as a
new church director. Looking back, Last year I was hospitalized at least 4
times with pancreatitis. And have spent most of my year eating smoothies and
old peoples' food. Every time I break from this diet, I have problems again.
UGH! However, I am 2/3 of my way through my program.
Some of you know that I have been taking Lupron shots - They really help with
the monthly attacks of panc. but not the stress induced attacks. I am with a
new doctor, who has referred me yet to another digestive doctor - who knows.
Anyway, this doctor mentioned that pancreatic pain is on the left side and I
have always had pain on my right. Hmmm! This after 20 years of pain.
Anyone have any ideas?
I am very concerned about Shirley. Obviously by the posts, she had her
operation. I would really like to support her by sending her a card. How
could I do this? Does anyone have an address? She is a lovely woman who
supports many of us with her encouragement, and I would like to encourage her
now. Anyone with info. please write or email me at bandscoz@...
Thanks! And may the New Year bring you all much less pain and much hope for a
cure.
God bless you all,
Love,
Staci

Dear Cecil,
I am so sorry to hear of the loss of your special friend. I can't beging to
know what that might feel like, but like all the others have said, you are
in our prayers.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God. (John 3:3)

Dear Cecil

I just wanted to send my condolences for the loss of your wife. I know the pain of losing someone too soon, and especially the pain of losing them around the holidays. I lost my mom last dec 6th to ovarian cancer. She was only 54. I was only 21.

I know there is nothing I can possibly say that will help with the enormous amount of pain you are feeling. But know I am thinking of you.

HI jang,
Its been awhile since I've been on .
Its would be really great to meet with you sometime.
I'm finally working as a temp to perm with an insurance co here in plantation.
Please lets try and find a time that we could meet.
#2 pancreas pal
debbie g.(S.FLorida)

Hello to All,
I just wanted to take this time to wish each of you a very "Happy New Year."
Let's pray that 2001 will bring us safer treatments, more knowledge to the
medical field on Chronic Pancreatitis, better options for pain management and
most of all...days without pain! I will be toasting the new year in tonight
at home with my "Diet Rite"....no alcohol please! :)

"Happy New Year"

Hugs & Prayers For "2001"
Carole

In a message dated 12/30/00 8:56:44 PM Central Standard Time,
cst1973352@... writes:

Too All Members : My nane is cecil street my wife Jennifer was one of you
and .withmy broken heart i had a great loss this past tuesday dec 26 she
passed away while in the hospital at durham north carolinia

Cecil, i am so sorry for your loss - from whatever cause. my prayers will be
with you to help take the pain away from losing your loved one. it is a
feeling that will never completely disappear, but that will soften with time.
and in its place many happy memories will remain. in christian love, debbie
s. (ark)
if you ever need someone to talk to - i am here.

Cecil, so very sorry to learn of your loss.
jang

Dear Cecil:
I'm so sorry to hear about the loss of your wife. Please know that you are
in my thoughts and prayers. If I can help in some small way, please let me
know. You have my deepest sympathy...God bless you and help you through this
difficult time.
Hugs & Prayers
Carole

Hello all,
I want to take this time to wish you all a very happy New Year,,I
know we all pray this is the year that they fine a cure for our
disease.. I got the new date for my surgery which will be the 10th of
Jan. so keep me in your prayers please and put a litte note on it to
give me the strenght to get through this, it all still very scary to
me but I know it has to make me feel a little better.. I hope you all
were able to have a good christmas and enjoy it some what. I got a
ditigal camera so I have been playing with that and taking lots of
pictures of the puppy and her dad.. well again I hope you all are
able to have a good Christmas.
wishing you all a pain free day.
Your pancreatis pal Anna from Michigan

Dear Mike,
I like to see a part of the message that the person is referring to when
they respond to my messages. It gets rather cumbersome to have the entire
message included, especially the longer ones. Although sometimes it helps to
get caught up. I guess somewhere in between is best.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God. (John 3:3)

It is great that they are administering a pain scale in the USA . I
wish that they had that in New Zealand where I am. No one seems to
understand real pain unless thay have experienced it. I thought I was
going to die in hopsital when they couldnt insert an IV to give me
pain relief. When they finally got around after 16 hours to give me
pain relief it was enought to kill 5 or 6 normal people. I screamed
that I was going to die and went and sat on the toilet screaming .
Then 4 anesthetists came running and started giving me morphine which
didnt touch the pain. meanwhile my mum who sat with me for 3 months
in hospital was swearing at the management and specialists. I think
that helped. as after she did that they put in a central line and did
an Arteriogram.
This was just one of my many episodes whilst I was on a fentanyl pain
pump.Another time when I had my lapraotomy they inserted an epidural
in the wrong place and my blood pressure was 50/ 30 due to pain. I
kept asking them to kill me, the pain wa sso bad before they finally
xrayed me and inserted it in the right place. One nurse told me to
stop crying as I dont have pain. I told her never to come back . She
must have got told off being on the pain team and all and was very
worried. I shall never forget them .
Debs

Is there any way you can get a PC UNIT, I was in the hospital for 4 months,
they had me hooked up to the PC unit with demeral, I could press the button
every 6 minutes, when the dermeral wasn't working anymore they put me on
morphine, when that wasn't working they put me on Delata(liquid heroin). I
was on this crap for 24-7.
It helped with the pain plus other meds.
Carmen

Hi Debbie,
Glad to hear your future daughter-in-law and your grandchild is doing okay
and finally home. Sorry to hear you had a bad time during the Holidays.
I feel for all of you with the ice storm you are having there but glad to
hear you do have a fireplace to help keep warm. We're expecting bad weather
(ice) some time today and I know how it is whenever the power goes off...hope
you have lots of candles. We don't have a fireplace but we do have a
generator we can hook up if we need it. Like you, I love snow but not ice.
I'm hoping the ice storm will miss us and I hope the weather will clear for
you soon. Hope you are feeling better...you are in my thoughts and prayers.
Hugs & Prayers
Carole

--- In pancreatitis@egroups.com, dhollis062@e... wrote in response to:
It's about time that they employed a standard for pain management
because it varies so from dr. to dr. I just wondered if you had heard
this news. It sounds like a move in the right direction to me!
Hi everyone. The drive to consider pain as one of the "vital signs" &
to have a consistent means of measuring the intensity of pain is not
really new. This is something that the commission that accredits
hospitals has been promoting for at least a year.
Comlaints about the lack of treatment for pain (as well as complaints
about other issues) can be sent to the Joint Commision for the
Accredidation of Hospitals. The web site is:
http://www.jcaho.org/
There is lots of info at this site. The opening screen at this site
has a sidebar on the left with an area to click on for info about
filing complaints.
jang

several different services giving us access to each other. I was just
wondering if there were any preferences as to how we do our posting?
I see that it is possible, for where I sit, to include the message
to which I am responding in the message I am sending. It appears I can
have my response follow or preceed the message to which I am
responding. I think I can edit the content of the message to which I
am responding, as well. It looks like others do that a bit in
responding to longer messages, even reponding inside the text of the
original message.
Do people prefer the original message to appear with the response?
Hi Mike. I also like to see the pertinent parts of the
original posting to which the follow-up is directed. I usually put
the pertinent part of the original posting in front, with my response
following. By editing the original posting, we can keep the responses
more compacted. I think lots of us are newbies in the computer game &
are still experimenting in how to do most anything.
Hoping for better days.........
jang

I would think that if this is a new policy and important to
administrators, making a stink through the administrative channels is
the best route to go. From what I have learned the higher up you can
send your complaint the better, for the thunder from above is much
worse than the rumble from below.
I would also think that this will vary from hospital to hospital. It
seems that non-medical administrators have found their way into some
facilities, thus making them more "customer" oriented. Professional
administators of large corporations are not so likely to bend to the
God-like authority of doctors. The number of insurance bucks you have
attached to your conditions will, for good or ill, add to your voice.
Then again, I am simply speaking from my experiences with government
administrations more than hospitals and insurance companies. People
who are not shy about being noisy can sometimes make an impact. My
personal experience is that it is like being a flea attacking a big,
lazy dog. Hard to get any action, and when you do it is hard to say
whether or not it was worth the effort.
The unfortunate thing about pain is that it is personal and
immediate. You might make a stink and get some satisfaction in six
months or six years, but pain is now. There is no way (legally) to
deliver to decision makers a sample of the pain you might be
experiencing at the moment. If you could, I believe that action would
be rapid and appropriate.
Still, any move in the right direction is to be encouraged.
Michael Lockridge

In a message dated 12/27/00 10:27:42 PM Eastern Standard Time,
djssekis@... writes:

but i hate the ice! debbie (ark)

H

ang on there Debbie, Spring is just around the corner
Just keep the spirit up and you will be OK
Poncho

i hope everyone had a good christmas. ours was a little hectic, but i can't
complain. jennifer, my future daughter in law, came home from the hospital
after two weeks there after an auto accident. she had several fractures in
her pelvis, but is using a walker and doing very well. future grandchild is
"a ok" also. that was a blessing and i appreciate all that prayed for her
recovery. i got real sick last wed., but managed to stay at home. a brother
in law that had not been around me during my illness was very concerned and
told his wife that i "looked terrible." she said she told him "well, she
FEELS terrible!" we are in the midst of an ice storm here in arkansas.
400,000 people across the state are without power this evening. my mom was
out yesterday and today and ours was out yesterday.! but we are lucky in that
we have a gas fireplace that we can kick on to keep the deep freeze chill out
of the house. the lights have been blinking and my son came in just a few
minutes ago from a run to one of the few grocery stores open (they went to
two towns before finding one) so that we could have bread and milk and he
said they saw some transformers blow up and lights go out across part of
little rock. my husband works for the electric co. so he has been working a
lot of hours. hopefully ours temperatures will rise later this week. snow
is beautiful and lovely - but i hate the ice! de