Online web

<<The most devastating for me.... I don't know if you will be able to
understand this ... one of my dogs, like abeloved child to my husband
and me, developed bone cancer. After consulting with canine oncologists
(yes, thereare such critters), we ended up having to do the most humane
thing & euthanize Rosie. I've been absolutely devastated with this.
Not really recovered from deep grieving yet.
I understand completely how you feel about your animals. I'm so sorry
for the loss of your dog. My cats, dogs and horse are my kids. I know
I'd be devastated if one of them got ill.
I'm sure you've probably seen this poem before, but in case you haven't
here's a copy of the Rainbow Bridge for you and Rosie:
The Rainbow Bridge
Just this side of heaven is a place called
Rainbow Bridge.
When an animal dies that has been especially
close to
someone here, that pet goes to Rainbow Bridge.
There are
meadows and hills for all our special friends
so they can run
and play together. There is plenty of food,
water, and sunshine
and our friends are warm and
comfortable.
All the animals who have been ill and old
are restored to
health and vigor; those who were hurt or maimed
are made whole
and strong again, just as we remember
them in our
dreams of days and times gone by. The animals are
happy and
content, except for one small thing; they each
miss someone
very special to them, who had to be left
behind. They all run
and play together, but the day comes when one
suddenly stops
and looks into the distance. His bright eyes
are intent; his
eager body begins to quiver.
Suddenly, he begins to run from the group,
flying over the
green grass, his legs carrying him faster and
faster. You have
been spotted, and when you and your
special friend
finally meet, you cling together in joyous
reunion, never
to be parted again. The happy kisses rain upon
your face; your
hands again caress the beloved head, and you
look once
more into the trusting eyes of your
pet, so long
gone from your life but never absent from
your heart.
Then you cross Rainbow Bridge
together...
-- Anonymous --

Dear Karyn,
In this case, Adrienne was abreviating the word, Alumni, as in a former
patient of Dr. Adams, and Dr. Cotton, we both have had surgery at the hands
of the brilliant, Dr. David Adams, at The MUSC, in Charleston S.C.
Your Pancreas Pal,
Henry
============================================================================

Melanie,
My goodness...what an ordeal. Did you get teaching before your procedure
where they told you of the possible side effects of this new medicine? If
they didn't, then I would think they are at fault for not letting you have
what they call "informed consent". You gave consent, but if they didn't tell
you all this stuff, it was not informed. I know you were looking forward to
having this surgery, but your doc is very smart to wait until you can pass a
stress test. Surgery is very stressful on the body and its for your safety
to make sure your body can handle it. I have been where you were having to
fight for pain meds, as we probably all have at one time or another. I
really need to talk with my doc about getting better pain control. Even the
Roxanol is not lasting 4 hours but only about 2 and a half or 3 at most. I'm
sure the depression I've been experiencing latealy doesn't help either. And
more nausea too. It's almost 5pm and I've only had mashed potatoes, a Slim
Fast drink and ginger snaps. I can't put into words how much I HATE THIS
DISEASE!!!! Sorry...we started talking about you and I ended up venting
again. I'm supposed to be getting ready for a trip to Illinois next week,
but I really don't feel up to it. The problem is, I can't decide if its the
disease or the depression. If its just the depression, I probably need to
go;but if its the disease kicking up again I probably shouldn't. I DON'T
KNOW WHAT TO DO !!!!!! Okay....I think I'm done now.
Hope you start to feeling better soon and the rehab goes smoothly.
Keep us up to date on how things are going,ok?
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hi Melanie,
Oh, you poor thing. I am so sorry you had so much trouble this
time. I hope that you are continuing to get better. When was your
surgery scheduled with Dr. Sutherland? Do you know how long you must
wait now? Take care my dear. You have had your share.
Be well,
Christine

In a message dated 11/25/00 2:53:30 PM Central Standard Time,
shirlf3542@... writes:
<< Hi all, my sister called me today and told me that she was changing her
mind
and was not going to MN with me while I have my surgery. I have to be there
DEC 3 and she was going to arrive DEC 7 with her boyfriend since I have the
surgery on the 8. She has a cold and she said that she thought the trip
would be too hard on her. I told her that she wouldn't be leaving
Cincinnati, for two more weeks. She said she might still have the cold then
and would I please call the hotel in MN and cancel her reservations. I said
OK. I am disappointed that she did that to me. She had me make the
reservations a month ago. She said that she wanted to be there to help me
and to help my daughter get thru the surgery. I know that I have to forgive
her and not let it fester in my heart. I will pray about it and let it go
but this is not the first time something like this has happened. I wish she
would not have good intentions in the first place if she is going to back
out
and disappoint me as the date gets closer. My husband said that he knew all
along that she would do this to me. She has a new boyfriend and when she
told me to make reservations for them she was excited to go so she could be
with him for a week. Now they are a couple and she doesn't have to hook him
in so the trip is not necessary for her. I know that this letter is very
mean and I am sorry. I will forgive her in my heart and put it behind me
but
it hurts. I am used to acting as though nothing happened and I will do it
again. Families can be so strange. I don't understand the coldness and
self-centeredness in my family. Shirley
Shirley,
I am so sorry your sister has disappointed you once again. It sounds like
she has done this to you many times before. There is nothing you can do to
change her, so you just have to accept that this is how she is. Sorry I have
no words of wisdom for you. However, you just made me appreciate my sister a
little more! She has been there for me so many times through my illness and
surgeries. She is older than me (she's 45 and I'm 39) and she has a 4 year
old little boy to take care but she is still always there for me. I don't
know how many times over the past few years she has been the one to drive me
to the hospital or doctor's office for surgery or a procedure. She just
recently drove me to my daughter's college for a special sorority function
for my daughter because I had just had shoulder surgery and was afraid to
drive that far. I know it was a hassle for her because she had to make
arrangements for her little one to be picked up from preschool and then her
husband had to take off work to be with him. However, she only kept
reassuring me that she was glad to be able to be there for me. On the other
hand, a couple of years ago, her little boy was very sick. He had to go to
the hospital in Atlanta (4 hours away). I took off work and went with her
and her husband because I knew she would need me to keep her sane. (She was
so scared for her little one that it didn't take much for her to go a little
crazy!) Anyway, I was so thankful to be there for her. It didn't matter
that it was an inconvenience and an expense for me. I think my sister may
feel that way about helping me. It makes you feel good to be there for
someone you love. It is sad that your sister is too selfish to get to have
that wonderful feeling of being there for a loved one. I am glad your
husband and daughter get to be there to help you.
Take care,
Karen

Hi Debbie,
I too find that when I stay still in bed or on the couch, I do okay.
But the minute I am up for even a short amount of time, I start
hurting like crazy. Just do what you can and leave the rest. I am
still in the learning process, because I want to do too much. But I
am learning to do only what I can.....Hope you are having a good day.
Be well,
Christine

Hi all, my sister called me today and told me that she was changing her mind
and was not going to MN with me while I have my surgery. I have to be there
DEC 3 and she was going to arrive DEC 7 with her boyfriend since I have the
surgery on the 8. She has a cold and she said that she thought the trip
would be too hard on her. I told her that she wouldn't be leaving
Cincinnati, for two more weeks. She said she might still have the cold then
and would I please call the hotel in MN and cancel her reservations. I said
OK. I am disappointed that she did that to me. She had me make the
reservations a month ago. She said that she wanted to be there to help me
and to help my daughter get thru the surgery. I know that I have to forgive
her and not let it fester in my heart. I will pray about it and let it go
but this is not the first time something like this has happened. I wish she
would not have good intentions in the first place if she is going to back out
and disappoint me as the date gets closer. My husband said that he knew all
along that she would do this to me. She has a new boyfriend and when she
told me to make reservations for them she was excited to go so she could be
with him for a week. Now they are a couple and she doesn't have to hook him
in so the trip is not necessary for her. I know that this letter is very
mean and I am sorry. I will forgive her in my heart and put it behind me but
it hurts. I am used to acting as though nothing happened and I will do it
again. Families can be so strange. I don't understand the coldness and
self-centeredness in my family. Shirley

In a message dated 11/22/00 1:35:28 AM US Eastern Standard Time,
adrienne@... writes:
<< I am interested in getting some Pancreatitis patients together in Kansas
City. Is that something that I can so myself, or would we need to work out
the logistics?
Adrienne
Hi Adrienne,
I am pleased that you want to start a local chapter of the Pancreatitis
Support Network. It is slow getting started. The work is worth it, though. I
will be glad to help you.
The first things to do is to talk to your doctors at the Hospital that you go
to. Tell them about the support group you want to start. Their support will
benefit you a great deal.
I am still trying to find a way to fund the printing of the Pancreatitis
Support Network brochure. It will look similar to the one for the symposium,
but more specific about the Network. Additionally, I need funds to print more
business cards.
The number one marketing tool are the brochure and business cards. My plans
are to make the brochures generic enough that each individual chapter can use
them. The brochures will cost ~ $600.00
The business card plate is already made. It won't take much to be tailored
for the contact person for each local chapter. The business cards will cost
~$50.00
I know that the funds will be raised and we will see this happen. The most
important thing is that you believe it in your heart. In your prayers just
pray that His will, not ours, be done.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/22/00 12:42:08 AM US Eastern Standard Time,
dhollis062@... writes:
<<. My main problem is pain and possibly the pancreatic duct closing off
again.
That's why I belive that I'm not sick enough to consider such a drastic
surgery. I'm stuck right now, and don't want to make any drastic moves
without Dr Cotton agreeing with me. He is the only specialist that is willing
to help me right now and I can't risk that Diane
Hi Diane,
I agree completely. It is so important to have a relationship with a
Pancreatic surgeon or GI docotr that is based on trust. This idisease varies,
literally, in each individual. There are so many different opinions on the
care and treatment, and the timing of those, with this disease. I know for
myself that I have to have someone I can trust. I would like to meet Dr.
Cotton. I will contact him and see if there would be one way for him to
accept an invitation to be a speaker at the 2001 symposium. That would be
cool.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/22/00 1:22:17 AM US Eastern Standard Time,
adrienne@... writes:
<< Adrienne (former Dr. Adams/Dr. Cotton alum)
Hi Adrienne,
I was wondering what "alum" is?
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/21/00 7:19:25 AM US Eastern Standard Time,
LMNOCDBDIS@... writes:
<< There are those people that will look at us like we're lying or that we
want a pity party or whatever else...To those people I say stop being
ignorant and get the facts, before saying anything, and for us that have to
look at their fake smiles and hear there stupid whispers. Ignore them
they're not even worth explaining anything to. Through all this I think
being in this group we'll find some real terrific friends. Sorry this letter
so long. Carmen
Hi Carmen,
You are right to realize that it is time to quit fretting about people who
don't get it. To live with Pancreatitis, to be a survivor, requires us to
muster up every bit of energy we have just to make it through a day. I don't
have much left over to waste. It is such a wonderful feeling to know that
there are 150+ people whose lives are affected by this disease that are only
a keyboard and mouse away. It is amazing how close I have become with so many
of you, and we have not even met in person. That is so special. :-)
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

hello to all . hope every one is doing ok . once again i have a question .
my niece is in the hospital again . my sister asked the doc about a
transplant but the doc said there was no way one can be done . the doc said
the reason for this was they did not know if is was the blood or the
pancreatits causeing the promblem . my question is isn't there a way for
them to found out . i thought there should be. my niece beckey is in
childerns 's in pittsburgh . if any one has any input please let me know .
thank you sue

appt) and the seizure meds don't seem to be helping much. Since seeing DR Cotton
I have increased my Viokase form 4 with meals to 6 and that seems to help some.
Not enough for me to go without my beakthru meds though. The pain doc wants to
do a nerve block under CT if I don't get any better with seizure meds and TENS.
I have just been hit really hard with depression and just am not sure what to
do!!! I want to just stay in bed with my kitty and snuggle with her. As soon as
I get up and start moving around...the pain gets worse.
Hi Diane. Sorry you're having so much pain. Have you tried the duragesic
patches? It seems like an invasive procedure like a nerve block should come
AFTER trying everything noninvasive.
Its understandable why you don't want to get up & move around. Its as though
your body is telling you to lie back & rest. I've gone through similar phases.
Usually, for me, if activity is forced, pain increases. I do best by giving in,
lying still for however long it takes. Everyone is different though, you might
do better getting up & out. Have you told your doctor about the depression?
The doc may be able to help with that.
As for going away with your family........ tough call. Its not easy saying "no"
to well-meaning friends, family. I think though, you should talk to your doctor
about depression, then, if its not depression causing your desire to "take to
your bed", stick to what your body is telling you. If you agree to go on the
family trip & are sick, no one will be glad you came. Its hard to know what to
do; you have my sympathy on making that decision. Good luck & let us hear how
you are doing.
Hoping for better days.........
jang

first but then I got terrible headaches,nausea and an uncontrolable stomach - I
stuck it out for 21/2 days and that was plenty. I took it off. Has anyone had
this reaction? I am told that
one is suposed to work thru these symptoms and they will go away. Is this
correct?
Hi Rich. I've not had any of those problems, but headache, nausea, vomiting are
listed as common adverse reactions to Duragesic. I think if I were you, I'd
talk to the doctor before going back to the patch. Maybe there is an
alternative the doc can suggest. Good luck.
jang

adequate pain control without too many narcotic side affects. I take it they are
some type of Narcotic pain relief without the bad side affects. Did you just ask
your doctor about them and he/she agreed to prescribe them?
without too many side affects.
Your
Henry, I got my patches through a pain control doctor. Like you, I found that
trying to take pain medicine on as as-needed basis wasn't working. I never
caught up with the pain without taking lots of drugs & feeling totally snowed
under. The Duragesis patch gives a steady infusion of a narcotic pain med.
Still get breakthrough pain that needs a fast-acvting narcotoic, but not as
often. Usually you start with the 25 mg patch & work up until finding a
strength patch that gives pain relief without sedation. It wouldn't hurt to ask
your doctor about the patches. After all, the most the doc can do is say "no" &
the answer is "no" if you don't ask.
Good luck. Hoping for pain-free days.....
jang

Hi again, Debbie. I had forgotten you live in Cooper City. I was there 11/13;
that's where the cancer specialists that I took my dog Roswe to have their
offices!
jang

away.... regards, Debbie G. S. Florida
Hi Debbie. Sorry so much time has gone by without my answering you. Just the
usual rollercoaster of life's twists & turns, but especially crazy this past
month or so. Besides my usual health problems, there have been many changes
where I work (part time).
The most devastating for me.... I don't know if you will be able to understand
this ... one of my dogs, like a beloved child to my husband and me, developed
bone cancer. After consulting with canine oncologists (yes, there are such
critters), we ended up having to do the most humane thing & euthanize Rosie.
I've been absolutely devastated with this. Not really recovered from deep
grieving yet.
Anyway, Debbie, I would love to get together with you. I'll be out of town for
a week or so in early Dec. With the holidays coming up & all that that entails,
maybe we can get together either Dec. or Jan.?
Please forgive my not responding to you sooner. Do you think we could meet
anytime soon?
Hoping you are having a pain-free holiday season,
jang

Meliane,

Dang girl you have went through alot lately, I was wondering what was
up with you since I hadn't seen you post, I am so sorry it was so bad, I am
glad that you are on the road to recovery but it sounds to me that you are
fighting things that you shouldn't have to , I hope the lawyer can help you,
it sounds like you have a case to me, things like this happen and they wonder
why we don't trust the doctors..you are in my thoughts and prayers I hope
things get better real soon, keep me in formed..I hope you were able to enjoy
you turkey day with loved ones..
again glad to see you back missed you
your pancreatis pal Anna from Michigan

Hello All!
Just a note to let you all know how I am progressing since my episode
in the hospital. I have recently had a set back. I was hospitalized
on Nov 15th for severe acid reflux. My lipase and emylase were
normal.
They kept me on iv's and pain meds for 4 days and decided to do a
endoscope. The anthesiologist instead of giving me versed like they
always have done wanted to put me completely asleep with a new
medication and put a lung tube in, just in case the acid reflux
spilled over into my lungs. I told him I did not want him to do it
this way and called my GI doc over to me and asked him why he wanted
to put me completely under. My doc said the anthesiologist had the
say so on it and he could not go against him.
Well, I woke up from the procedure with about 8 doctors around me
yelling different orders and someone doing CPR on me. The
anthesiologist gave me too much of the new medication he used to put
me under and I had respitory failure and cardiac arrest. I was
straightlined for about 5 secs four times. I could not breath and
they had to insert a new airway because they had already removed the
one they originally used. I ended up in ICU for 4 days and then was
transfered to a cardiac hospital and was there for another 4 days.
Luckily, they did a cardiac cath and I have no permanent damage to my
heart but my right lung has a infussion on it that is healing.
This has put me back a couple of months for my surgery in Minnesota.
I have to build my strenght back and am still taking Lasix to remove
the fluid around my heart and lungs. I am seeing a lawyer next week
to see if I have any legal recourse. I came out of the hospital 10
times sicker than before I went in. I am starting rehabilitation to
regain strenght next week also. Dr. Sutherland will not do the
surgery on me until I go thru the rehab and pass a stress test for my
heart. So now I am set back and feel as though I am scared to have
anyone do anything to me that involves putting me under.
Anyways, I was looking so forward to having the islet surgery,it is
very promising and now I have a further wait. The worst of this
whole experience was dealing with getting my mind to function. It
took a little over a week to be able to dial the phone to call
someone. My mind just could not function. I tried to post a few
times and the words would just be scrambled in my head. But thank
God I am regaining the function of my brain back. It was real scary
there for a while not knowing if I would have permanent brain damage
or not. My doc said it may take some time and I am thankful that it
was a short time. I lost 8 days in the hospital that I can't
remember anything about. I also before I had the endoscope done had
2 nasty incidents with Rn's who did not want to give me my medication
for pain. My GI doctor really reamed one of them out. I was ordered
oxycontine 2,20mg tablets every 8 hours for pain and demerol 50mg
with 25mg phenergan every 2 hours for breakthru pain. These 2 nurses
could not understand that order. They refused to give me the demerol
and said I had to wait 8 hours for it. I am so tired of fighting
this disease and the medical profession. Well anyways I am back and
home and I think I will have to be on deaths bed before I ever go to
ER again!..The endoscope showed I had acid reflux so bad that my
doctor said my insides were blistered and looked like I was burned.
They sent me home on Caltrate which is a real old medication for
stomach acid and it works better than anything I have used yet. It's
liquid and it coats your insides real well before you eat. Anyways
thanks for allowing me to vent and I hope everyone had a pain free
Turkey Day and all is well!....Melanie

jang,
Actually I have been to a pain center and he suggested a TENS and
anti-seizure meds. I do not have the TENS unit yet(almost 2 months after the
appt) and the seizure meds don't seem to be helping much. Since seeing DR
Cotton I have increased my Viokase form 4 with meals to 6 and that seems to
help some. Not enough for me to go without my beakthru meds though. The pain
doc wants to do a nerve block under CT if I don't get any better with
seizure meds and TENS. I have just been hit really hard with depression and
just am not sure what to do!!! I want to just stay in bed with my kitty and
snuggle with her. As soon as I get up and start moving around...the pain
gets worse.
And now my family wants me to go with them to Illinois for a week to visit
family and friends. I just don't know that I am up to it.HELP!!!
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 11/24/00 6:48:46 AM Pacific Standard Time,
peppep15@... writes:
<< Does anyone know where I can find
some comprehensive information on pancreatitis on the web, including diet,
foods to avoid, treatment?
Hi, I went to WebMD.com and from there i went to the pancretitis info pages.
I thought it was very helpful. lots of sites to go to. i have a question
about fats also. how do u gain ur weight back if u cant eat fats and can
barely eat ever after u loose so much because of this disease. does anyone
have suggestions on putting weight back on?
thanks, christie in tx

Hi everyone, glad to join this list. I just found out that I have mild
pancreatitis. I have been feeling very hungry, and am taking digestive
enzymes. Is there any difference in the different brands of enzyme
supplements? Are certain brands or combination of enzymes better? Will I
feel less hungry on enzymes?
I have also been taking flax seed oil as a nutritional supplement. Flax
seed oil contains mainly omega 3 and omega 6. I read that fish oils (omega
3 mainly) can bring triglycerides down. I also know that with
pancreatitis, I should stay away from fats. Is it okay for me to take flax
seed oil or fish oils or are they considered fats?
These are just some initial questions. Does anyone know where I can find
some comprehensive information on pancreatitis on the web, including diet,
foods to avoid, treatment? This is very new to me and I look forward to
learning from all of you.
Thanks!
Alicia

In a message dated 11/23/00 12:16:54 PM Eastern Standard Time,
liamhoha20@... writes:
<<
Hello everyone....
I hope you are all doing as well as possible. As for myself, I'm
really not looking forward to this wonderful feast. I know I'm going
to worry my mom by not eating much, and I hate to do that to her.
The home care nurse came a week ago Tuesday and stopped the TPN and
took out my PICC line, I didn't even know she was going to come!!
Just stopped the TPN all at once!! I had gained over 20 lbs on it,
and I have already lost 8 lbs. Yeah for me!! I was in the ER this
Tuesday because of dehydration and severely, extreme pain. I know
most of you can relate. They gave me nubain, phenergan and then came
back in and gave me stadol. I did get a good nights sleep!! But, I
have been feeling awful, and I just hate this!!
Just wanted to pop in. Have a wonderful day, as you can.
Your friend,
Linda (from Ohio)
Hi Linda, sorry you are feeling so bad. I do the same thing as you when they
stop my tpn. I start loosing weight fast. It seems to me they could have
lowered the calories or let you take your tpn every other night but not take
you off completely. When I feel I am getting too fat I start skipping nights
of tpn. I just do it myself. I hope you feel better soon and that you are
able to eat something. Linda I from Cincinnati, Ohio Shirley

Christie, I could not even imagine what you go through having vertigo.Does it
come and go?Are you always throwing up?
Just curious?
Carmen

howmtp@... has sent you an Egreetings.com(r) card!
To view your card, simply click the following Web address
any time over the next three weeks:
http://www.egreetings.com/v/sphCxsmmQF
Need some help? See below!
*********************************
Perhaps your E-mail program doesn't recognize the Web address as an active
link. No problem! You can copy and paste the Web address into your Web
browser.
Here are instructions on how to copy and paste:
a. With your mouse, highlight the *entire* Web address above
b. Select the EDIT menu and choose COPY
c. Go to your Web browser and *click inside* the window where
you normally type a Web address to visit
d. Select the EDIT menu and choose PASTE
e. Now hit ENTER on your keyboard to take you to the Web address
It's that easy! :-)
If you would like further assistance, we're happy to help - please send
E-mail to solutions@...

Anna,
You sound like a wonderful careing person. I hate that my lady has this
nasty disease and yes it is difficult to deal with sometimes I don't know if
everyone realises it but when my lady is in pain I am in pain. I wish all
the time I could take it away from her and I believe all your loved ones feel
the same way I do. You are right Anna we are both lucky to have each other.
I need her to know that I will be here for her for eternity. God Bless you
and yours Anna.
Try to have a pain free Holiday all.
Leon

Karyn,
My check is in the mail... lol "no pun intended"
Wishing you all a pain free holliday weekend.
Leon

Hello everyone....
I hope you are all doing as well as possible. As for myself, I'm
really not looking forward to this wonderful feast. I know I'm going
to worry my mom by not eating much, and I hate to do that to her.
The home care nurse came a week ago Tuesday and stopped the TPN and
took out my PICC line, I didn't even know she was going to come!!
Just stopped the TPN all at once!! I had gained over 20 lbs on it,
and I have already lost 8 lbs. Yeah for me!! I was in the ER this
Tuesday because of dehydration and severely, extreme pain. I know
most of you can relate. They gave me nubain, phenergan and then came
back in and gave me stadol. I did get a good nights sleep!! But, I
have been feeling awful, and I just hate this!!
Just wanted to pop in. Have a wonderful day, as you can.
Your friend,
Linda (from Ohio)

Karen,
Sure sounds like you have a keeper to me. I only hope and pray that my
lady won't ever have to ask that question. :)
Wishing you all a pain free day.
Leon

Hi friends. Its been a month that I've been on methadone for my chronic
pancreatitis pain*** and i'm quite pleased to tell you that it's been like a
miracle drug! Handles my pain great-lasts like 8 or more hours,doesn't have
as pronounced narcotic effects(or constipation!!) as other ''class II'' pain
meds(drowsiness, feeling 'dopey',etc.) out there for this condition.[my pres.
dosage is leveled off at 10-30mg. every 6 to 8 hrs. =120mg@day]I'm eating
normally again, putting on weight,working out. I'm getting my life back
thanks to this stuff, it's just amazing! Dirt cheap too...I paid $64 for 360
pills at Walgreens! I'm surprised more Dr.s don't know about it's analgesic
properties yet.I'd definetly suggest it to anyone with intractable pain...it
really is incredibly effective for me, I hope some of you may read this and
find it may be available to you, a! nd get some better pain control perhaps-we
needn't suffer with this!!!***((by the way, i was previously taking percocet,
then oxycontin (about 80mg a day or more)for this, with unsatisfactory
results ))I hope you're all having pain-free days,if not weeks! Stay healthy
everyone- PEACE
David Lowell
Las Vegas NV

In a message dated 11/22/00 4:53:39 PM Eastern Standard Time,
jang2@... writes:
<<
Shirley, I feel so bad to hear of how you are feeling. I hope you will have
a good Thanksgiving, as comfortable as possible. We'll all hope for your
insurance company to quickly send an approval so you won't have to carry that
additional worry. I hope all will go well for you. Your husband sounds like
a real treasure. With all the problems members of this group face, we who
are fortunate enough to have a good support system, need to remember to be
extra thankful.
Hoping for better days ahead............
jang
Thanks Jang, I do have a good husband. I wouldn't be able to handle my
health if it were not for him. Shirley

approved for the islet cell transplant. So I only have one week to learn if I
am approved or not. My husband and I are making our plans as though we have
been accepted.
Monday morning for test. I will have test Mon thru Thursday and then on Friday
I will have the surgery.
have diarrhea all the time, and pancreas pain.
Shirley, I feel so bad to hear of how you are feeling. I hope you will have a
good Thanksgiving, as comfortable as possible. We'll all hope for your
insurance company to quickly send an approval so you won't have to carry that
additional worry. I hope all will go well for you. Your husband sounds like a
real treasure. With all the problems members of this group face, we who are
fortunate enough to have a good support system, need to remember to be extra
thankful.
Hoping for better days ahead............
jang

Hi everyone,
OK, I'm about ready to have the copies of the video of Pancreatitis
Symposium made. The final tape is just over 5.5 hours long. I've
done some experimenting with various recording options, and it looks
like we can get a good quality copy in "EP (Extra Long Play)" mode,
which will let us get the whole thing on a single VHS 120 video
cassette tape. As it tunrs out, the real key to getting a good
quality copy is to use a high quality blank video tape, and use "real
time" duplication. I've found a couple places here in town that will
make such copies.
As I mentioned, a few of the speakers tended to "wander around" (away
from the microphone) a little bit, so you may need to turn up the
volume slightly in a few places. Also, as Adrienne mentioned, the
sessions were pretty interactive, and sometimes it's difficult to hear
the question from the audience. But most of the time the speaker
repeated the question, and in those instances where they didn't, you
can still understand what the question was from the answer given.
We will be able to get the copies made and mail them out to anyone who
would like one for $20 each, including packaging/shipping. We will
also include a set of the handouts from the Symposium with each tape.
We will be collecting the orders for the next couple of weeks or so.
If you would like a copy, send a check or money order for $20 to:
Karyn Williams/Pancreatitis Support Network
6936 West 71st Street
Indianapolis, IN 46278
We'll have the copies made once we know how many we need, and get them
mailed out - just in time for Christmas! :-)
Disclaimer: The actual cost of the video tape copying, set of
handouts, packaging, and shipping is about $16.50 each. The remaining
$3.50 from each tape will go towards helping Karyn recoup some of her
out-of-pocket expenses for putting on the Symposium (printing
brochures, postage, etc). Anything left over after that will be put
towards next year's events.
In order to reduce "clutter" about this on the list, if you have any
other questions about the video tape, e-mail me directly at
tull@...
Thanksgiving blessings to all,
--Tull

available what they call "bio-clusive covers" that you can put on over the
patches to keep them on more securely, and help prevent them from curling up
around the edges, etc. These are basically just like "teg-a-derm" (sp?) wound
dressing coverings. Janssen will send them to you free of charge. Call their
toll free number at
the patches (thankfully, not with the medicine itself!). Once we started using
these "bio-clusive covers" over the patches, we
discovered we could trim off most of the adhesive "edges" around the
patches, and secure them just with the bio-clusive covers alone. This
keeps them on much more securely/reliably, and doesn't irritate her
skin so much.
Thank you, Tull. I've just called Janssen & they were delightful, helpful,
kind.... to talk to.
Have a great Thanksgiving,
jang

Hello karen,
I sent in my story to Solvay Pharm . Well today they called me and wants to
interview me. Just wanted to thank you for posting the letter for us to have
the oppurtunity to write in our story's.
I throughly enjoy being a part of this group. Everyone is so nice and
helpfull,giving support when needed, no one judges you if your having a bad
day, Comforting when needed.
Thanks to all ,
Wishing all pain free day!
Debbie G. - Florida

Hi Kevin. I'm not a drinker, but had to respond to your note. I don't know why
you are questioning the ability of your doctor, but a focus on diet is primary.
Eating a low fat diet, taking pancreatic enzymes, and.... sorry to say...
avoiding alcohol, are the foundation for treating pancreatitis. It is a shock
when you find yourself faced with a disease that will change your whole
lifestyle. I hope you have a good support system to help you through the days
ahead. Would AA be a possibility for you? Good luck. Please feel free to ask
any questions. Wish I could be more helpful.
jang

Hi jang, all
I think Karyn posted something about this recently, but in case you
missed that one, Janssen (pharmaceutical company that makes the
Duragesic patches) makes available what they call "bio-clusive covers"
that you can put on over the patches to keep them on more securely,
and help prevent them from curling up around the edges, etc. These
are basically just like "teg-a-derm" (sp?) wound dressing coverings.
Janssen will send them to you free of charge. Call their toll free
number at
1-800-526-7736 .
Karyn was having a problem with her skin reacting to the adhesive they
use on the patches (thankfully, not with the medicine itself!). Once
we started using these "bio-clusive covers" over the patches, we
discovered we could trim off most of the adhesive "edges" around the
patches, and secure them just with the bio-clusive covers alone. This
keeps them on much more securely/reliably, and doesn't irritate her
skin so much.
So that's one more thing we have to be thankful for this Thanksgiving!
Blessings to all,
--Tull

main problem is pain and possibly the pancreatic duct closing off again. That's
why I belive that I'm not sick enough to consider such a drastic surgery.
tried yet. If I could only get the doctor to be willing to try them. I jsut fel
like I'm stuck right now, and don't want to make any drastic moves without Dr
Cotton agreeing with me. He is the only specialist that is willing to help me
right now and I can't risk that.
Hi Diane. I think I'm in kind of a similar situation. I've tried a TENS unit,
accupuncture, Sandostatin, relaxation techniques, low-fat, alcohol free diet of
course, pancreatic enzymes - all without relief.
So far, the only thing that gives relief has been narcotics. I'm using a
Duragesic patch and OXY IR for breakthrough pain. Would going to a pain control
doctor be an option for you?
jang

Hi Rich. I've been using the Duragesic patches since July & agree that it cuts
down on the amount of drugs needed for breakthrough pain. I've been really
happy with the patches except for the problem of getting the patch to stick
without part of it peeling away. There is no sedation noticable with the patch.
Happy comfortable Thanksgiving to all.......
jang

Carmen, did you have any problems getting the patches to stay on?
I've been using the patches, but am having trouble keeping the edges from
revelling up. Any solutions? Thanks in advance.
jang

In a message dated 11/22/00 12:31:45 AM Central Standard Time,
adrienne@... writes:

All of you wo missed it, be sure to get the video. There was so much
information given there. (not repetitive at all, Leon!) These
doctors took great care to make sure what they were presenting was
understood. I spoke to two of them afterward, and they happily made
time to talk with me. They were genuinely concerned about my
condition and tried their best to make suggestions. That alone was
worth the trip for me (even if I DID have to bring my TPN!)

that sounds great adrienne - i've already put in my request for a tape if
they are able to copy some. wish i could have been there.
debbie s. (ark)

In a message dated 11/22/00 12:01:59 AM Central Standard Time,
dhollis062@... writes:

I'm thinking
that I will spend Thanksgiving alone at home to try to get ready for another
trip and get all the Christmas presents ready for those folks up north.
How do you all handle the holidays when you know that trying to do it all
will be too costly on your body, yet you want to be a part of it all?? I
have such a hard time trying to explain why I can't do it all...and saying I
need to do what's best for me right now is never a satisfactory answer for
anyone (even me I think).
Looking forward to hearing your input.
Diane

my holiday is going to be hectic to say the least. my son and his fiancee'
have decided to get married. they got the license yesterday. wanted to do it
when a lot of her family would be here for the holiday and her uncle was
going to marry them......however, now he may not be coming because of an
illness in their family so i am going to try and see if it can happen friday
w/my mom's pastor, if all that falls apart. i have a grandbaby due in april
and they have been waiting until kris' insurance was in force etc;. will be
a very informal ceremony. jennifer said she just wants to get it over with at
this point. they said they can have a renewal of vows & friends etc; on an
anniversary or something later. (i hope they will do that - i always
regreted not having everyone there when i got married). anyway - - i just
hope that i can cope w/pain meds & not be too much of a zombie i! n the
process! ha. i definately won't be alone for the holiday.
debbie s. (ark)

Hi guys..i've been reading some of the posts, quite intently and must
say that i am very very scared...my symptoms are very minor at this
point..pain is minimal..i would just call it a bad stitch that goes
thru my back..but i am still able to funcion just about normally and
can work everyday and go to the gym.
I hope that my early diagnosis will make a world of difference. I'm
seeing a GI here in NJ and question his ability..for now we are
focusing on diet...one thing that i have not read anything about
here..is alcohal. My pancreatitis, i'm sure, is a direct result of
years of abuse. Even faced with this, i am having a problem
stopping...so i suppose its safe to say i have two diseases. Reading
some the seriousness that many of you have gone thru, and that i hope
to avoid has been a real eye opener.... has anyone else had a problem
with alcohol and stopping...
Take care everyone.
Nervously,
Kevin

Karen,
Thank you for your kind words, it always helps when people know where
I am coming from, and thank god you do have that friend I am lucky too, the
ones who know me well know that I might look good but I look nothing like I
did before this disease, I have to just say to heck with the ones that are so
uncaring and unfeeling...I read your post about the sugar .. you are in my
prayers that it is just a fulk..It just never seems to end with this disease..
wishing you a pain free day
Anna from michigan

In a message dated 11/21/00 2:23:27 PM Central Standard Time,
mrsteep1@... writes:
<< Karyn,
I thank god for you and starting this group and you are wonderful
and
do a great job with this.. so even thou you aren't in nursing you are our
nurse and we apperiate you with all our hearts...
Thanks Karen
your pal Anna
Amen to that. Karyn you are an angel.
the other Karen (with an e) :)

In a message dated 11/21/00 3:17:42 PM Central Standard Time,
sunflower6668@... writes:
<< Karen,
I guess we just have to focus on the people who DO care about us and
understand that just because we "LOOK" okay doesn't necessarily mean
much. This girl at work that says every day that I look good doesn't
understand how close she is to getting an earful. I mean, enough is
enough. Do you have someone who truly understands? I hope so, I
mean other than all of us of course :-)
Be well,
Christine
Christine,
Yes, I am so blessed with loved ones who do understand. Several of the
people at work including my bosses are great. My bosses wife is near death
from breast cancer so he understands illness very well unfortunately. My
mom, hubby, sister, daughter, and best friend have been so helpful to me
through this.
Sometimes I think the dumb people may think they are making you feel better
by telling you that you look good or by telling you that your health may
improve just as quickly as it failed (God, don't I wish). Who knows, but I
tell you it has made me think a little more before I speak.
Karen

In a message dated 11/21/00 2:34:47 PM Central Standard Time,
mrsteep1@... writes:
<< Carmen,
Never to long dear, and you are right there are ones that just aren't
worth it, I had a bad day yesterday and couldn't go into work but felt
better
last night and so I went to work today .. and a few said to me how can you
look like this today if you were so sick yesterday, and thank goodness a
good
friend of mine was there and said, you don't have any idea what it is like
so
don't go judging, and I said right, I don't wish this disease on anyone but
if you could feel my stomach at this point now and then have it be 10 times
worse I would like to see if you could work.. they make me so mad sometimes,
luckly I have a great boss who knows that I wouldn't just call in for
nothing, I have worked there 18 years and haven't been off or called in
until
I got pancreatis, these people who judge me of course are the ones who go
out
parting and then call in the next day because they are hung over.. so I
don't
worry about them at all they are not worth my time or effort...
And I too am very thankful for the friends that I have made here with this
group, and for you Carmen I am glad you found the group
your pancreatis pal Anna From Michigan
Anna,
your post made me so mad!!! How dare those stupid people at work say that to
you? Thank God for your good bosses and friends who at least try to
understand how sick you truly are. My best friend has been a God send. She
tells me, "Karen, I have known you for close to 30 years and I can tell you,
you are not healthy right now. I know you are suffering and I wish there was
something I could do to help you." Oh, how those words do help. Just
knowing that someone who loves me understands that this is not how I want my
life to be, but that at this point, I have no choice and that I am honestly
doing the very best I can do for now.
Karen

Morning All,
This morning I woke from a sound sleep so incredibly thirsty I could not
stand it. I thought, "Oh shit". That was how my friend who is a diabetic
first started. I don't know if I told you but my family doc had told me to
keep a very close watch on my blood sugar. He said to check a fasting level
at least once a week. He said high triclycerides can sometimes be a
precursor to diabetes and it normally takes about 5 years for them to catch
the diabetes after tri's go up unless monitoring sugar closely. He said
hight tri's can sometimes mean your body is not using insulin properly but
it's not quite bad enough yet to catch diabetes easily. I told him I
monitored it for a couple of weeks back in Sep (my mom's a diabetic and is
always after me to check). My highest fasting BS was 111 and he said
anything that is fasting and over 110 is borderline and anything over 124
fasting is diabetic according to new standards. anyway, I took it this
morning and it was 117. I started crying as soon as I saw it. I know that's
still not 124 but that's the highest fasting level I've had and it's getting
ever so close to the magic number. I don't want to add diabetes to my
already long list of trouble! Maybe it was just a fluke but I guess I will
keep a watch for the next few weeks and see what happens.
Damn it, why did my family doc have to finally decide that I might really be
sick after all and tell me to watch my sugar closely? I think I could handle
this better a few months down the road!
Wishing everyone a low pain day. (pain free may simply be too much to wish
for : )
Karen

Hi Karyn-
You mentioned to the two in Florida that two or more people would
constitute a Florida Chapter.
I am interested in getting some pancreatitis patients together in
Kansas City. Is that something that I can so myself, or would we
need to work out the logistics?
Thanks,
Adrienne (at the symposuim, 5'3", blonde, from KC, Missouri)

Dear Adrienne,
What a nice surprise to hear from you! :) I've wondered about some folks
like you, Julie, and Andre', who I've missed since returning from MUSC. I'm
glad to hear from you, and I do hope that everything is going O.K. for you.
The Whipple went well, the hard work is always the recovery. This one
was/is of course much more work than the Puestow that Dr. Adams did two
years ago. What he found was a mass of stretched out scar tissue with what
he decribed as, "Two pin holes where the divism ducts were located, with
significant damage, and necrotic tissue." Anyway, I'm happy to be home, and
know that I won't ever have any more Pancreatic stones! :) My main problem
now is maintaining an adequate diet/appetite. My stomach still doesn't empty
properly, but the Reglan I'm taking is helping some with that.
Are you coming back to see Drs. Adams or Cotton anytime soon? They
certainly are two fine people. Dr. Adams makes me feel like I'm his brother,
or son, he is so caring about his patients, and takes the time to listen, it
really helps. Well, I hope that now that I've heard from you and Julie,
Andre' will pop up here soon, I worry about people when I don't hear from
them for a while. I'm a worrier. I hope you'll be well friend! Thank's for
writing and please write back when you can.
Your Pancreas Friend from Charleston,
Henry
============================================================================

Hi all! I wanted to let everyone know what a wonderful job Karyn did
on this years Pancreatitis Symposium! I have had pancreatitis for 5
years and have seen a LOT of doctors, but this blew me away. I
learned so much from every presenter there. It was very interactive,
allowing anyone who had a question to ask it. (and receive an answer!)
Karyn, you are truly an inspiration to me. I know you struggle with
pain on a minute by minute basis. Yet what you accomplished with
this symposium was incredible. And reading your posts since I have
been back home - your strength, wisdom and compassion truly amaze
me. I am blessed to be surrounded by such great people.
All of you wo missed it, be sure to get the video. There was so much
information given there. (not repetitive at all, Leon!) These
doctors took great care to make sure what they were presenting was
understood. I spoke to two of them afterward, and they happily made
time to talk with me. They were genuinely concerned about my
condition and tried their best to make suggestions. That alone was
worth the trip for me (even if I DID have to bring my TPN!)
Thanks again, Karyn.
Wishing you peace in your hearts,
Adrienne

Hi Henry-
I havent posted in awhile, but you have been on my mind lots! It has
taken me soooo long just to read the posts. I don't know how some of
you keep up so well, and look so good! he he he
It sounds like you are doing as well as can be expected with a major
resectioning surgery like the whipple. How is Dr. Adams doing these
days? Glad you are back at home and doing ok. :)
Adrienne (former Dr. Adams/Dr. Cotton alum)

Hi all,
I'm just curious how getting ready for the holidays is going for everyone.
Since I just got back from SC. It seems Thanksgiving has just arrived so
fast. And then next week my mom, sister and I are scheduled to travel to
Illinois for a week to spend with family and friends. I find myself having
to choose which to do and which will be less costly on my body. I'm thinking
that I will spend Thanksgiving alone at home to try to get ready for another
trip and get all the Christmas presents ready for those folks up north.
How do you all handle the holidays when you know that trying to do it all
will be too costly on your body, yet you want to be a part of it all?? I
have such a hard time trying to explain why I can't do it all...and saying I
need to do what's best for me right now is never a satisfactory answer for
anyone (even me I think).
Looking forward to hearing your input.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Karyn,
No, my pancreatitis is not calcifying, and I am not currently a diabetic. My
main problem is pain and possibly the pancreatic duct closing off again.
That's why I belive that I'm not sick enough to consider such a drastic
surgery. From what I understand if I was going to have the surgery, I could
harvest my own islet cells. But I would bet that ther are many other options
for pain control that I have not tried yet. If I could only get the doctor
to be willing to try them. I jsut fel like I'm stuck right now, and don't
want to make any drastic moves without Dr Cotton agreeing with me. He is the
only specialist that is willing to help me right now and I can't risk that.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

not to stop trying different things to help the symtoms while
this illness is present. With all the medicines out their none seem
to work 100%. Try herbals it couldn't hurt. Most of all keep the
Faith.
Carmen,
That's a good thought to keep trying things...but don't you get frustrated
when one after another doesn't work? My doc put me on Prozac...so maybe that
will help my coping with this. My counselor today said that all this time my
body has been trying to cope and deal with this...and now it just can't
anymore. So we'll see how those help. But I still think I would do better if
I had better pain control. Pain is SOOOOO disruptive...we can't think it
away like some doctors say we need to do.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Dear Shirley,
Hey friend! How is the situation going with getting all of your approval
for everything? Are you feeling O.K.? I hope you will have everything in
place, and be in good shape to get through the surgery. Remember you have a
lot of folks here pulling for you!
Your Friend,
Henry

Hey Dot!
I have to second Karen's recommendation to give Dr. Sigman a try before
heading all the way to Ohio. Sigman is very good. He's done three
ercps on me and I've never had any bad side effects (at all) from them.
Dr. Sigman really listens to you, too.
Kelly
Message: 13
Date: Tue, 21 Nov 2000 13:41:29 EST
From: loggiekw@...
Subject: Re: to Dot and Krystal
Dot,
My name is Karen and I have just started seeing a new doctor in
birmingham,
AL. His name is Dr. Kenneth Sigman. He was recommended to me by Kelly
thrasher on the network. His phone number is 205-271-8000. I don't have
chronic pancreatitis (or at least don't think I do). However, I had
acute
pancreatitis back in January and have not been the same since. I've
seen two
GIs in Huntsville, AL. They both did ERCPs and proclaimed me fixed and
then
basically ignored my continuing problems. I have only had one visit
with Dr.
Sigman and then he did an ERCP this past FRiday. It was by far the
easiest
time I've had with an ERCP. He also told me that since I had had such
pain
and nausea after the first two ERCPs, he would keep me overnight
regardless.
My second refused to keep me in the hospital even though I was throwing
up
and in excruciating pain. Dr. Sigman truly listened to me and seems to
very
agressive about at least making things better for me. You might want to
give
him a try. I'm not sure where in
LA you'll be coming from but Alabama is sure closer than Ohio.
Just a thought.
Karen

Christie,,,
Thank you and I hope you do feel better so that you can spend time
with your family...you are in my thoughts and prayers
Anna

In a message dated 11/21/2000 12:38:11 PM Pacific Standard Time,
mrsteep1@... writes:
<< and a few said to me how can you
look like this today if you were so sick yesterday,
pooey on them....u know the truth and thats all that matter. I dont have
panc. but i have bad vertigo. i been spinning now for 3 weeks and was
supposed to drive to new orleans today. well, of course i could not cuz i
cant quit spinning. to look at me ud never know why i am sitting still and
not moving, but inside of me..lordy...take this away is all i say. so i do
understand your feelings. im glad u feel better.
ur friend still in tx hoping to be able to drive 6 hours tommorow morning to
spend turkey day with family., christie

Anna,
I am with you. I too have had people ask because they think they have
it too.......what does it feel like at the beginning they ask? well,
just try overwhelming pain. And that is it. The pain is what I
remember. The daily pain is different though. We just have to keep
in mind that it takes all kinds to make the world go round, eh?
Be well,
Christine

Karen,
I guess we just have to focus on the people who DO care about us and
understand that just because we "LOOK" okay doesn't necessarily mean
much. This girl at work that says every day that I look good doesn't
understand how close she is to getting an earful. I mean, enough is
enough. Do you have someone who truly understands? I hope so, I
mean other than all of us of course :-)
Be well,
Christine

Carmen,
Never to long dear, and you are right there are ones that just aren't
worth it, I had a bad day yesterday and couldn't go into work but felt better
last night and so I went to work today .. and a few said to me how can you
look like this today if you were so sick yesterday, and thank goodness a good
friend of mine was there and said, you don't have any idea what it is like so
don't go judging, and I said right, I don't wish this disease on anyone but
if you could feel my stomach at this point now and then have it be 10 times
worse I would like to see if you could work.. they make me so mad sometimes,
luckly I have a great boss who knows that I wouldn't just call in for
nothing, I have worked there 18 years and haven't been off or called in until
I got pancreatis, these people who judge me of course are the ones who go out
parting and then call in the next day because they are hung over.. so I ! don't
worry about them at all they are not worth my time or effort...
And I too am very thankful for the friends that I have made here with this
group, and for you Carmen I am glad you found the group
your pancreatis pal Anna From Michigan

Dear Leon,
It does come to realationships that both people in that are the lucky
ones and it sounds to me that you both are lucky to have found each other, I
know I cherish mine and don't know what I would do without him he is my rock
when I need it, even when I make it hard on him and try to push him away he
stays there and keeps me smiling.. so be thankful that you have each other
and cherish the love and days you have together...
your Pal Anna

Karen,
What a funny story and yes you do have a keeper, as I was just tell
Leon in a earlier post some of us are very lucky with our loved ones and I
feel that everyday, and also very thankful for this group I don't know what I
would do with out you all...
wishing you a pain free day
your pal Anna

Dot,
My name is Karen and I have just started seeing a new doctor in birmingham,
AL. His name is Dr. Kenneth Sigman. He was recommended to me by Kelly
thrasher on the network. His phone number is 205-271-8000. I don't have
chronic pancreatitis (or at least don't think I do). However, I had acute
pancreatitis back in January and have not been the same since. I've seen two
GIs in Huntsville, AL. They both did ERCPs and proclaimed me fixed and then
basically ignored my continuing problems. I have only had one visit with Dr.
Sigman and then he did an ERCP this past FRiday. It was by far the easiest
time I've had with an ERCP. He also told me that since I had had such pain
and nausea after the first two ERCPs, he would keep me overnight regardless.
My second refused to keep me in the hospital even though I was throwing up
and in excruciating pain. Dr. Sigman truly listened to me and seems to very
agressive about at least making things better for me. You might want to give
him a try. I'm not sure where in
LA you'll be coming from but Alabama is sure closer than Ohio.
Just a thought.
Karen

i haven't noticed andre on line in a while. has anyone heard from him??
debbie s. (arkansas)

Rich,
the patches are great. I used them for quite sometime.
when i was using the patch my pain meds taken by
mouth were reduced by mgs. The best thing about it
is when you start another attack , the pain doesn't hit
you by surprise it slows it 's attack, for me as soon as the
time frame for the patch was up I felt it , I had a painful
attack. the time frame works just be prepared and have
your other patch put on minutes before taking the other
one off. I hope everything works out for you.
Have a comfortable day.
Carmen

Anna,
I know what you mean. It's like I will be fine one minute
and the next thing you know i'm rolling around in the
bed writhing in pain. When i look sick , I'm very very sick
and everyone is used to seeing me make-up free, hair
pulled back because i don't have the strength to do
any of this. when i feel good, i do the whole nine yards-
make-up,perfume they say i clean up well. I'll bet thats
how it is with you. their are those people that will look
at us like we're lying or that we want a pity party or
whatever else...To those people i say stop being ignorant
and get the facts, before saying anything,, and for us
that have to look at their fake smiles and hear there
stupid whispers. ignore them they're not even worth
explaining anything to. Through all this i think being in
this group we'll find some real terrific friends.
sorry this letter so long.
carmen

In a message dated 11/20/00 8:39:42 PM US Eastern Standard Time,
dhollis062@... writes:
<<
Hi Diane, and all,
The last time I looked at this site, it was dead. It seems as though it has
been resuscitated. How exciting. I will contact them and see how we can share
our resources and be part of a bigger picture. Here is their URL:
<A HREF="http://www.pancreasfoundation.org/index.html"
National Pancreas Foundation - Homepage</A
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/20/00 11:32:24 PM Central Standard Time,
shirlf3542@... writes:
<< He sounds good to me. Come on Karen and give him a break and keep him.
Shirley
are you really sure I'm the one givng him a break? After all, he's already
put up with me for over 10 years! :) Of course, I have to put up with his
wacky ex - so maybe I'm the one with the raw deal. Unfortunately, I'm the
one she always wants to talk to because she says she can talk to me easier
than him! Oh, well, most of the time I jjust feel sorry for her and am glad
I don't live her life.
Karen

In a message dated 11/20/00 7:55:45 PM US Eastern Standard Time,
petonnia@... writes:
<< A group of Doctors Started up a National Pancreas Foundation. Not sure
where.
But if you search the Web you can look it up. Good luck! Debbie G.
Hi Debbie,
I have been to that site and it appears to be dead. I have written to them
and received no response. If you have located someone there, let me know.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/20/00 10:05:54 PM US Eastern Standard Time,
shirlf3542@... writes:
<< still have not been approved and I am getting concerned. I hate the
hassle ins. co. put us thru. I hope you are feeling better today and
tonight. Shirley
Hi Shirley,
Are you talking about the approval from your insurance company? I can imagine
your anxiety, it's getting right near the wire.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/20/00 7:39:54 PM US Eastern Standard Time,
dhollis062@... writes:
<< Dr Cotton said the only surgery that would help would be complete
Pancreatectomy...too serious of a surgery for where I'm at right now. I'm
thinking of asking the pain doc when I see him next if he would consider
giving me an internal pain pump. We'll see, I guess! Diane
Hi Diane, and all,
I had a distal Pancreatectomy. The intent was to salvage the head as long as
I could in hopes that we could keep as many islet cells alive as long as
possible. On the last CT scan the remainder of my pancreas had calcified like
the tail had, I have considered having the calcified head removed, but was
told it wouldn't make any difference in my quality of life.
I am curious if you have calcifying Pancreatitis and what was the purpose of
having a total Pancreatectomy. If they would do that, would you have a
cadaver islet transplant since you would be open anyway?
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/20/00 5:22:50 PM US Eastern Standard Time,
chevytk85@... writes:
<< I have seen you mention about "Next" years symposium. Do you always
have this in Indiana? I ask this because I grew up in Whiteland. Just south
of Indy and know exactly where Meridian and 38th is. That was the site of
this years right? And it is only a 5 hour drive from where we live now.
Leon
Hi Leon, and all,
At the current time the Network is planning a symposium to be held in
Indianapolis. Many of the Pharmaceutical companies have been seeking a venue
towards the Midwest. This has proven a great asset for funding. At this time
I am trying to solidify the 2001 functions. I have to submit the funding
proposal by February to ensure an adequate financial budget to offer high
quality programs.
It looks as though the Symposium will be near the first Saturday in November
and will be in Indianapolis. The Support Network has been invited to sponsor
a high profile pancreatic speaker for a half day lecture / luncheon as well.
This will be held at the Indiana University Hospital new conference center. I
will know more about this later. The target date is sometime in the first
quater of 2001.
The final goal of the Network is to hold a weekend caregiver / care receiver
retreat at a lodge outside of Indianapolis. This would offer a full weekend
of workshops, sharing laughter and tears, fellowship and fun. It will be a
healing not to be missed.
As soon as I finish the budget proposal, I will be seeking committee members.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

where from??? i am from LaPlace, LA very south.
christie
Christie,

I am going to be in La, from December 21 to Jan 2nd. In Alexandria. My husbands famil is there.

Becky

In a message dated 11/20/00 5:01:24 PM US Eastern Standard Time, Becky writes:
<< I always hoped I would get married and have children and stay home and be
a Mom. Well, I am married and stay home without the kids because of this
disease. Oh how I miss working!!!! Becky (Indiana)
The thing I hear most from people who have been recently diagnosed is that
life as they once knew it will never be the same again. I have to continually
be God conscious when taking that next right step, because, for me, it is not
a path that I had anticipated taking. When I miss the path that I had
originally planned on taking, those things that you spoke of, Becky, I have
to remind myself that God did not bring me this far to drop me. This is such
a good topic because it is a question I lift to God in my morning prayer and
meditation. I always end this period of contemplation with "Thy will, not
mine, be done."
With that, I have been amazed to where my life has taken me. I have been
giving my Pancreatitis Support Network business cards to doctor's offices,
hospitals, and tacking them up on bulletin boards at grocery stores, et. It
seems as though I am serving as a vehicle to reach those persons whose lives
are affected by this disease who do not have a computer. Now that must be
lonely. The phone calls aren't difficult, as I just open my heart and listen.
I remember when I first realized that I would never be able to return to
nursing again, a profession that I loved; it was who I was. I understand the
longing There is such a collective of experiences and talents within this
Network. If we found ourselves congregated I don't believe we would have to
contract out for any labor.
There I go again......just philosophical musings.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 11/21/00 12:08:18 AM Eastern Standard Time,
loggiekw@... writes:
<< Have I got a keeper or what?
Karen
He sounds good to me. Come on Karen and give him a break and keep him.
Shirley

In a message dated 11/20/00 7:56:13 AM Central Standard Time,
mrsteep1@... writes:
<< Karen,
And you know that all that matters is the ones who love and care for
you,,,all the others don't matter..like I said they just want to be nosey so
keep that chin up...you pal Anna
thanks Anna - what would I do without you guys?
Tonight I talked to my hubbie about something that had been bothering me.
His ex is a real psycho. At age 19, she read the birth control pack and saw
it could cause stroke and that evening they were in the ER with her insisting
she'd had a stroke. Docs did every test and they were all normal. Told him
she needed to see a shrink.
She was on phenobarb during pregnancy because she was "psycho" (according to
my hubby) This was only one of hundreds of trips to the ER for strokes, heart
attacks, blood clots, you name it. Even my 16 year old step daughter says,
"all you have to do is tell Mamma that you have a stomach ache and within 15
minutes she'll insist she is dying with stomach pain". God knows I hate to
even suggest that someone's pain is not real, but if anyone's is not - hers
is a good case.
Anyway, I have been worrying that since they can't really pinpoint some of my
problems, my hubby might start to think I am like his ex. The last person in
the entire world I'd want to be like is her. She's worthless - 4 husbands -
3 kids by 3 dads - pregnant with each one out of wedlock - her work history
is a handful of jobs which lasted no longer than one month each.
I told my husband my fears and he came and hugged me and told me that I was
absolutely nothing like his ex. He said "did you end up in the ER saying you
were having a stroke after reading the BC pack?'" I said, "no, but the docs
refused to refill my BC pills after 3 mos the one time I was on them. BP was
sky high and they told me I'd end up having a stroke if I stayed on them."
He laughingly said, "OH, no , maybe you are like her!" I said, "I swear I
wanted to keep taking BC pills anyway, but they wouldn't let me - i never
thought i was having a stroke - at that time I was only 22 and thought I was
invincible." He said, "okay - i promise you hon - you are nothing like her -
don't ever think that again."
Have I got a keeper or what?
Karen

Hey there,
So your dad finally let you have Flower inside? And now she has a friend?
Your going to have a whole collection in there if you're not careful!!
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

in pain, feeling depressed, and hopeless. A tool that I use
how fortunate I am, is to make a gratitude list. When
Karyn,
Thanks so much for your perspective, especially the part about when we are
ready. It makes such a difference to know that someone else has the
understanding. Though I am a women of faith in God, I am still prone to
being overwhelmed by this disease and all that comes with it. So many times
I hear the compassionate forms of "Snap out of it and have faith in God". I
am convinced that He understands being overwhelmed by circumstances we
cannot change. And most encouraging of all...His love for us never changes.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

I would like to know about that too.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Dear Karen,
about your aunt...I've had that happen with my family---even when I was on
TPN--and it is so hard to know what to say. They just don't get it!! Maybe
after a little bit of time, they won't make suggestions like that...but it
takes time.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hi Nicole,
A group of Doctors Started up a National Pancreas Foundation. Not sure where.
But if you search the Web you can look it up.
good luck!
debbie G.
cooper city , florida

Hi Debbie,
have a lot worse illnesses that would end my life quickly.
As I have thought many times before...that would be a relief because I would
be with my Lord and no longer in pain, being depressed, or sick in any way.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

him down here? You were here for a week, right? At least we got one good
visit in, although I was kind of fuzzy about it. What exactly did Dr. Cotton
say? Did he hold out any hope that having a surgeon consult on your case
might be an option just to see if surgery might be feesable? Hang in there
Diane! Remeber that this disease is unpredictable, and might burn out
someday, giving you some much needed relief.
Hi friend,
I saw him on the 13th and I stayed in Charleston until Friday after the
Partner's meeting. Dr Cotton said I should try one of the arthritis meds. He
did not want to do an ERCP because they make me too sick and anything they
have done like stents and such have not brought long term relief. He said
the only surgery that would help would be complete pancreatectomy...too
serious of a surgery for where I'm at right now. I am supposed to have an
MRCP up here to check out the ducts...but then I don't know what. I'm
thinking of asking the pain doc when I see him next if he would consider
giving me an internal pain pump. I have a friend who has one and she really
likes it.We'll see, I guess!
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 11/20/00 1:12:30 PM Eastern Standard Time,
tull@... writes:
<< and Lawrence K. Gates, M.D. at the
University of Kentucky.
This is my doctor, he sees only patients who have chronic pancreatitis. He
is wonderful.
Jennifer Street (NC)

Dear Carole,
Hey friend! In my case they are using Reglan to get my stomach used to
emptying normally again. Since a small portion of it was removed, it has
been slow to get the command to empty normally, and bile builds up causing
nausea, vomiting. I'm told that the Reglan also has its own anti nausea
component. How have you been? Got some snow? Well, that's nice, we don't get
too much here in Charleston since we are right on the coast. The last really
decent snowfall I recall was Christmas Eve, 1989, the year of Hugo. We had
about three feet, and it was especially pretty because it covered up so much
ugly hurricane debris. I got off of work early that night just in time to
see the first snow flakes, felt just like a kid! :) Has your snow melted
yet? It's supposed to be around freezing even here tonight. I am keeping a
little stray cat I found warm in my room upstairs with Flower. Well, thank's
fro writing Carole. I hope that you have a peaceful Thanksgiving.
Your Friend,
Henry

Hi Anna,
Thanks for the kind words, But what she doesn't understand is it is I
that is the lucky one. Keep smiling, and try to have a pain free day
Leon

In a message dated 11/20/00 12:12:46 PM US Eastern Standard Time,
DOTDOTONE@... writes:
<< i have had this for 3 1/2 years now i have had 4 surgeries 27 times in
the hospital 6 ERCP's and too many ultrasounds and all kinds of other tests
that i feel like
a gennypig. luv ya Krystal
Hi Krystal,
You are a brave and courageous person to have gone through so much. You may
have told someone this before, but what kind of surgery have you had? Four
is so much. So far, my surgeon has only taken me to the OR once.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
Every Tuesday Evening 7PM to 8PM
North United Methodist Church

OK Shirley, I'll save one with your name on it! :-)
Cheers,
--Tull

In a message dated 11/20/00 11:54:06 AM Eastern Standard Time,
tull@... writes:
<<
Once we get those details ironed out, I'll post the ordering
information to the Network.
Thanks for your interest.
Cheers,
--Tull
HI Tull, if I am in MN having my surgery when the ordering takes place for
the video please remember that I want to order a tape or tapes. Thank you,
Shirley

Hi all,
While looking for info about Dr. Ulrich (Cincinnati) for Krystal and
Dot, I came across this reference to the "MMPSG". Thought this
information might be of interest to folks near some of these research
centers who are looking for doctors who "know something" about
pancreatitis. Here's a snip from their website:
http://www.mmpsg.org/
" Basis and History of Our Group:
Traditionally, clinical pancreatic research has been
conducted by investigators at single institutions. The types of
clinical studies performed in that setting and their subsequent
impact
on clinical management of patients with acute pancreatitis, chronic
pancreatitis, cystic fibrosis, and pancreatic cancer has been
constrained by the limited number of patients with these disorders at
single institutions.
The Midwest Multicenter Pancreatic StudyGroup (MMPSG) was formed in
1994 in order to facilitate large, prospective, randomized,
controlled, multicenter trials that should impact positively on the
clinical management of patients with these disorders. Initial members
included David C. Whitcomb, M.D., Ph.D. at the University of
Pittsburgh, Charles D. Ulrich II, M.D. and Stephen P. Martin, M.D. at
the University of Cincinnati, and Lawrence K. Gates, M.D. at the
University of Kentucky. This collaboration developed due to their
common interest in clinical and basic pancreatic research, the close
proximity of their institutions, and the relationships that had
develope