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Hello gang...
I had my pre-op testing done today. It involved a whole other physical
by someone I've never seen before. It seemed like such a waste of time. I had
to go through the whole 2 year history of this pancreas/ gall bladder thing.
You would think I've seen enough MD's in that time to have a book full of
information. The best part was when the person doing the physical said they
might have to cancel the surgery because I reinjured my back and am in so
much pain from that. I told her "no way, I've waited long enough to find
something wrong." I know that laying flat on my back for 1 1/2 hours will be
awful for my back but will I really notice with the pain meds I'll get?
Besides, my back has hurt to some degree for 2 years now. Just more stress to
add to an already stressful situation....
Someone asked about headaches a little while back. I am also a
migraine sufferer so it is hard to say if a headache goes along with a flare
up. I do know that if I take pain meds I sometimes end up with a whopping
headache. Kind of wierd, huh?
I think that it mostly happens when I am tired to begin with and the pain
meds make me more tired which brings on the headache. It usually happens when
I am working. It is very frustrating to say the least.
My mind has been on Shirley a lot this week, especially today. I am
hoping that everything went well for her. It is hard not being able to get an
update on her.
I have to run for now...take care my "family", you are all in my
thoughts...
Elizabeth

Hi Carole , Karen and all,
Well I went to the surgeon and he says that my gallbadder needs to come
out..he thinks that this is my problem and that it is why my counts have
never came back to normal he seems to think that if it comes out that I will
be alright and not have any problems I am hoping he is right but for some
reason I don't believe it..my brother had his out and still had pancreatis
problems but hey it is a little hope better then I have had in a long time..
I don't know the date of the surgery yet but it is going to be the week of
the 18th he says he should be able to do it laproscopic and that I will only
be out of work for 2 weeks so that is kinda cool too, and if it just takes
some of this pain away I will be happy with that too... He also said that if
I still have problems after wards he may have to go back in and sew open a
duct I forget what he was talking about but he said he will just take the
gallbadder out first and see what happens .. so thanks for the prayers all
it really must have helped you are all wonderful and I thank god everyday for
you all and for my loved ones I am one lucky girl... thanks again
Wishing you all a
pain free day Anna from Michigan

Dear Patricia,
So sorry you're not feeling well. That vomiting is just awful, and you
have my empathy! Like I said in my last mesg., sometimes you will feel worse
than I do, despite what our past history is like. The reason I had the
Whipple last month was because despite the improved flow of Pancreatic
juices, from the Puestow procedure, the head of my pancreas was completely
blocked over by scar tissue, and the head had to be removed to keep stones
from forming which they were, resulting in further attacks, hospital stays,
and the necessity to remove them via the ERCP route. The doctor had a hard
time removing these stones, and they were worse than a non-stone attack.
Kind of like having a blockage in the billary tree, with lot's of excess
pressure, reminded me of kidney stones, but even worse, so I'm hoping that
when fully recovered from this surgery, I'll get along much better. Have you
had Pancreatic stones before? I hope not! I wish for you to get over this
bad spell, and soon be back here typing away. I enjoy reading your posts! We
really do have a "family," of folks here, and that's a blessing.
Your Pancreas Pal,
Henry

Dear Patricia,
My training, and stock in trade was journalism, as a sports
editor/writer, mostly desk editor on the city desk. I also dabbled in
features, book reviews, ect. I sympathize with you on missing one's career,
it seems a shame to have all of the training, and eagerness, to work in a
chosen field, and then not to be able to carry out what one loves, but God
will provide.
Hen

Dear Patricia,
Yes! you are right on it! My old college roomate was from Quuebec, as
soon as you said it, I remembered it. You have been to a lot of the U.S.,
AND China, cool, that's a place I'd love to see, how'd you get there? I've
lived most of my life in beautiful, quiet, S.C., except for Colege in North
Carolina, and one year in Sweden, as an exchange student. I love to travel,
and see new places, but as we know Chronic Panc. makes traveling somewhat of
a risky proposition. I don't want to end up in a hospital in a strange place
where I might have trouble communicating with the doctors, scary thought.
Henry

I think this is great for both of you. Congratulations and Good Luck
Terri L.

In a message dated 12/05/2000 9:01:33 PM Eastern Standard Time,
jang2@... writes:
<< Fortunately, this has changed. An old friend/boyfriend is in the
process of moving in with me. When we were an "item" before, it was
too soon for me after losing my husband to a heart attack. We still
remained friends these last few years and now I think we are both
ready to start planning a future (such as it may be.....) together.
Hi ReeAnn! Best of luck to you both!!! I am glad to hear that you now have
someone to go through this with you. Your post hit home with me because I
ended up being alone after I got out of the hospital from my BIG attack last
year until I was reunited with an man that I had dated on and off over the
past 17 years. I had met him when he was 29 and I was only 17 and we never
seemed to totally meet in the middle, but I had always known that I truley
loved him and thought of him often over those years. His mother had found
out that I had been sick and told him and then he contacted me to see how I
was.........and the rest is history. We were married in March of this year.
So, it must be fate that brought you and your old flame together again
too!!!! Funny how that works, isn't it?
Anyway, glad to hear the good news.............YOU GO GIRL!!! Ha Ha Ha Ha
Hugs,
Julie

TerriL. I am glad they put you on Norco, from Darvocet to Norco ? Wow!! big
difference. Although, Norco is less powerful than Percocet, I prefer it as
(at least for me) it doesn't have the same analgesic effect.
Christine, L-A is basically an amino acid . I thought I had explained that in
an earlier post. Sorry if I didn't.
Karyn, That book sounds great! I especially liked the transposition of
phrasing...
"we are spiritual beings going through a human experience" rather than " we
are human beings going through a spititual experience". That alone would keep
me and any individual with some substance up all night discussing the merits
and philosophy of each statement. I personally agree with the first
statement but, it would be interesting. I will definately get the book.
Thanks.
Aloha and God bless us all. Rich

Dear Christine,
You hang in there, and I hope you'll be eating full liquids, and a low
fat diet before too long, and be off of that TPN. I know TPN is a drag, but
I'm actually thankful for it, because at times it's literally kept many of
us from starving to death! I prefer using my new J-tube to feed myself with
over TPN, because with the Diabetes, it makes it easier to keep things in
hand that way.
Eating is such an intregal part of people's lives, that it really throws
us off balance when we can't enjoy the tastes, and pleasure of good food, so
I'm in total empathy with you there. Once when I was in the hospital for a
long stay, it had been eight weeks or so, and my mind was wanting food,
well, you know in a large hospital, they goof up sometimes, especially when
someone removes your TPN sign from your door, and dietary brought me a
delicious looking p[late of food including one of my favorites, bannana
pudding, I swear tears came to my eyes at the sight knowing I couldn't cheat
even if I wanted to, I'd just make myself sicker, so I called and had the
nurse quickly remove it. Anyway, the reason I'm boring you with that old
story is to tell you that I understand, and I'm with you in spirit on this
topic! It's sometimes one of the hardest parts of Pancreatitis, the yearning
to eat normally, and the denial of delicious food.

In a message dated 12/7/00 12:08:55 PM Eastern Standard Time,
ingallslhitmx4@... writes:

? I can sometimes go for weeks without pain
and then for no apparent reason the pain is back.

Hi Teresa,
That's exactly the way I do. I'm certainly not complaining about having
pain-free days but it makes no sense but I don't think anything about
Pancreatitis makes any sense to me. I know there are a lot of our
Pancreatitis friends who would love to have pain-free days and my heart hurts
for them. I'm having a CT Scan tomorrow so I'll know more about the
Pseudocyst when I get the results. I wish they would tell me it has shrunk
instead of growing. When I do have attacks, Darvocet seems to work for me.
I also take Pepcid, Mylanta after I eat and Phazyme for gas. It seems, with
this Pseudocyst, gas will build up in my left side and be very painful. I
found the Phazyme to help. I swell when the gas builds up and feel like a
balloon and, of course, the pain. What kind of herbs are you taking? I'd
rather take something natural if it helps. Did the doctor give you the
Prozac ! for depression? If so, which came first...the Pancreatitis or the
depression? I get very depressed whenever I'm having the constant pain but
when I'm not in pain, my mental state is back to normal....I don't know how
long that will last with this disease. I'll keep you in my prayers. Hope
your child doesn't have the flu. Let me know how you are doing.
Hugs & Prayers
Carole

Hi there,
Okay...I got out my disability book. In order to get disability you must be
unable to do any kind of work for which you are suited and your disability
is expected to last for at least a year or to result in death.Your benefits
can begin during the 6th full month of disability.Once you are on disability
you can attempt to return back to work under a trial period of 9 months
where you can make as much money as you can with out affecting your
benefits. If your work is then considered substantial,($500/month or
more)benefits continue for 3 more months and then stop. If you make under
$500/ month usually your benefits continue. You can get all the details from
the Social Security Administration. 1-800-772-1213. Hope this helps.
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 12/07/2000 3:40:44 PM Pacific Standard Time,
sunflower6668@... writes:
I took this as an anti-d. i cant imagine it helping pain. just my opinion.
christie

In a message dated 12/07/2000 3:31:32 PM Pacific Standard Time,
sunflower6668@... writes:
OOPs, i missed this post, can u repeat it?? what book is that?
thanks,
christie

Thank you for the info. I have had a very bad day today lots of pain and
nausea. Could not keep any food down at all. Hope tomorrow is a better day.

Hey girl,
Boy you are luck they are letting you do it slow. When Mayo Clinic pulled my
port-a-cath and stopped the TPN it was quick. I was doing clear liquids all
along and some crackers and they just stopped it!! I went on TPN and 3 weeks
after I got there ,they stopped it. No weaning or nothing. This should be
much easier on your body than what they did to me.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Dear Karyn,
Thank you for sharing those beautiful thoughts! You have a real flair
for wirting, and getting to the heart of the matter. I would be interested
in reading "Close To The Bone." The book sounds like something many of us
would benefit from reading. Should I send you a check for whatever the costs
are, and then send the book back when finished, or what? You just let me
know, and I'll be happy to do it. Bless you for being our, "mamma," in this
extended, "family."
Your Pancreatitis, Friend,
Henry

Rich,
I'm sorry if this question makes you repeat things, but I have been off for
awhile and its hard to catch up. Do you have any websites that talk about
this L-Arginine? I did a search, but all I got was people who sell it. Is it
an herbal thing or some type of vitamin? I'd like to find out as much as I
can and maybe show it to my doc to see if I should try it.
Thanks,
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Christine,
Well maybe you can even the score a little bit soon. When I start on clear
liquids after being NPO, I usually start with popsicles.Some start with ice.
Then move on to jello, juice and then finally broth. I always have the
hardest time with broth. Just a suggestion...maybe it will help.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hi Carole, and Karen
well the test came back with ammoralities so I am seeing the a surgeon
tomorrow, so hopefully I will get some answers from him my doctor called me
today and said he made the appt. for tomorrow I was suppose to work but he
said he wanted me there and with the pain I am having today I am willing to
go.. little scared and a little hopefully if this will take some of my pain
away I will be happy...
Wishing you all a pain free day
Anna from Michigan

Dear Patricia,
Well, we all have the same disease, some longer, and more complex than
others, but none of what you've been through sounds like any walk in the
park. We are all here with Chronic Pancreatitis, and support one another,
through the bad times, and celebrate the good times. It doesn't matter
whether I've been through more than you, or vice' verca, just that we all
care for each other. A time may come when I'm doing much better than you,
and I'll send you lot's of encouragement! :)
To answer your questions about those procedures, a spincterotomy is
where during an ERCP, the doctor cuts open the spinter muscle surrounding
the pancreatic duct. This opens it up when pressure is too high, and
relieves internal pressure in the pancreas. A Puestow, is basically, an
operation where the surgeon opens up the underside of the middle section of
pancreas by making a surgical cut, my surgeon compared it to opening a
Flounder. Then the surgeon reconnectes this new Pancreatic opening to a
section of small intestine, helping keep a good Pancreatic flow open.
Henry :)
============================================================

In a message dated 12/7/00 3:13:00 PM Eastern Standard Time, KarynWms@...
writes:

This is such a wonderful feel good thing to say. It is exactly the same with
my own family, friends, and church ministers and parishioners. When it is
time to lift someone to God in prayer, I find myself, almost weekly,
writing
some member of the Network on the prayer request card

Hi Karyn,
I do the same at my church. In fact, this past Sunday, Shirley was on top of
my list. You should feel very proud that you are responsible for this
wonderful group. I know I can speak for all of us when I say, "Thank You",
Karyn! Hope you are having a good day and hope you know how much we
appreciate you. As Martha Stewart would say, "It's a good thing". :) You are
in my thoughts and prayers.
Hugs & Prayers,
Carole

--- Karyn,
I am going to get that book! It sounds like it is just the thing I
have been waiting to reach out and grab. I mean, there is something
in this illness that I am supposed to see, but it stays right out of
arm's reach. Maybe that will bring it in close enough for me to grab
on to! Thanks,
Christine

I have had 2 ercps and wont have another unless it
Patricia,
I am with you. I have had two ercp's, and they will have to do some
pretty serious talking before I go through another! They were the
worst medical procedures I have ever had...........
Be well,
Christine

Rich,
You're the only other person I've ever heard that takes the Norco also. So
far I think this has been the strongest drug they have given me for pain. I
can't take it during the day and work though. I tried and would just about
fall asleep at my desk. I'm also taking other medications for spasms, muscle
relaxers, enzymes, anti-immflamatory and others....hard to remember them all
sometimes. I can understand why you would need them every 2-4 hours with your
back problems too. Man that's a lot of pain.
Your description of your day there sounds wonderful. Wish I lived close to
beautiful views of the water.
Hope you have a pain free day today.
Terri L.

Rich,
Could you tell me a little more what the L-Arginine does. I'm interested.
Does it help to digest the foods better? Does it help with constipation?
Thanks,
Terri L.

Elizabeth,
That's good to hear that ICU is just a possibility. That seems like it would
be pretty scary...eventhough I've seen it from the other side as a unit
clerk. So many things can happen there with the variety of patients they
have in there. I'm sure you'll be fine. Are you having a lap-chole? When I
had mine out they hadn't developed the lap-chole yet so I was opened up all
the way. That seems like ancient history now with all they do.
I'm feeling a little better than I was about a week ago. I was almost to the
point of calling the doctor...and then I started to feel better. My doctor
called last night and told me that the MRCP was okay except,they didnot do
it like Dr Cotton wanted it done,so they still don't know if the duct is
functioning properly. My doc here is going to call DrCotton and see what he
has to say.
Make sure and tell us when your surgery is so we can pray for you OK?
Blessings,
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Christine,
Congratulations on being able to start on a clear diet. Take it slow and I
hope the nausea passes soon and you can go to more tasteful foods. Good luck.
Terri L.

In a message dated 12/4/00 9:03:39 PM US Eastern Standard Time,
howmtp@... writes:
<< I too tell my mamma about people on this board, and it's the same here,
she talks about ya'll to me as if we were neighbors. My mamma will make me
some low-fat chicken soup, since I live too far for you to make me some, but
I appreciate the thought! :-) She knows how important this "family," is to
me. What a wonderful thing it is having this technology to have a group like
ours that feels like "family," even though we never see one another in
person! Twenty years ago we couldn't have had this, it's a blessing. Your
Pancreatitis Friend, Henry
This is such a wonderful feel good thing to say. It is exactly the same with
my own family, friends, and church ministers and parishioners. When it is
time to lift someone to God in prayer, I find myself, almost weekly, writing
some member of the Network on the prayer request card. None of my family
members live in the near vicinity, except my daughter, who, herself, is in a
life-transforming situation. And, even though, there are posters and there
are listeners, it feels very comforting to know that I am one of my large
family of 164 members. I love and care about all of you very much.
I know how hard it must be for new members to begin to feel a part of. I
can't tell you all how much I appreciate your efforts to reach out and touch
them with your care and concern. I, also, want the new comers to know that
some times this doesn't happen quick enough, but this Network has very
special people, who are ever so grateful to embrace you and open up their
hearts and souls.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 12/4/00 9:03:39 PM US Eastern Standard Time,
howmtp@... writes:
<<I'll tell you, I agree with you about dear Shirley, I'm about as nervous
for her surgery as I was for my own! I can't wait 'till we hear some good
news, but as you said, it will take a little while before that happens,
meanwhile we'll have to keep her in our prayer time. I really believe in the
power of prayer. When I was recovering in the hospital, when I would have a
bad day, and feel so alone, and afraid, just thinking of all of you here
praying for me, was very comforting. God will provide. Your Pancreatitis
Friend, Henry
The beauty in what you have said truly touches me. This disease does drives
us close to the bone. Actually, there is a wonderful book called, "Close to
the Bone" written by Jean Shinoda Bolen, M.D.Published by Scribner, New York,
NY, this books explores what it means when serious illness brings one "Close
to the Bone"; close to the soul's needs. The author weaves myth, experience,
and story, which at once illuminates the experience of the seriously ill
patient and shows that facing one's own mortality, can be a life
transforming, and even a lifesaving, process. She serves as a guide in this
life-threatening but ultimately life-affirming journey, helping us to find
our way out of the underworld of this disease and back into our lives,
forever changed.
She states that times of crisis are opportunities for accelerated lessons in
what it is to be human. Assuming that we are spiritual beings on a human
path, rather than human beings on a spiritual path, then the most difficult
times in our lives also teach us and tests us and often pull us back onto a
soul track or a heart path ---often, when we thought we were lost. It is a
time when we may discover or remember once again that this is a human journey
is much easier when we love one another, see the divinity in each other, and
know that we are not alone. She concludes her writing telling us this book is
like a prayer, meant to help and heal, to make you less afraid, to encourage
you to trust the wisdom of what is inside this book. It is a soul to soul
communication, and guardian angels may very well accompany intentions such as
these.
Although it seems to be a large book of 212 pages, I read it in two sittings.
It is hard to put it down, once you have begun reading. It is such a profound
reading experience that I would be willing to send this book to anyone who
feels ready to take that right next step; to stop living in the problem, and
begin living in the solution. You can in turn send it to another interested
reader in the Network. I am eager for us to share our thoughts and feelings
once you have read this book.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

Hi Carole, Sorry it's taken so long to write back, their are some days when
I don't get a chance to get on my computer. I never know from one hour to
the next how I'm going to feel? I can sometimes go for weeks without pain
and then for no apparent reason the pain is back.
I take Percocet and Methadone for pain and I also take Prozac and
Nortriptyline at bedtime. I feel very lucky compared to alot of others with
cronic pancriatits. Most of the time I'm able to eat what I want, but on bad
days I try and stay away from food completly and drink just green tea. My
last attack was about 2 years ago, and lasted almost a year, during this time
I was taking 7-8 percocets a day and I was still in pain 24/7. I was getting
despirate and decided to go see an acupuncturist, I really think she helped
me, because about a month into it I started feeling better. I beleive it was
the herbs she was giving me, because the more herbs I took the better I
started feeling. It's hard to say, I might have started feeling better
without it, but who knows? It also took over a year to finally find a Dr. who
would give me the pain meds I needed without a fight. Well that's probabl! y
enough for now, I have a kid home from school today with a sore throat and
achey all over, I hope it's just a bug and not the Flu.
Thanks for writing!
Teresa

Here you go Pancho!

The guy you went to school with probably came from Quebec although we have a
lot of french people in Ontario which is where I am Toronto is the city. My
husband is french from Quebec . H e moved to Ontario when he was 8 at that
time he spoke no English . I met him when he was 19 and I was 15..I speak a
little french our son lives in Quebec now and he speaks it fluently. MY
trips to the states have been to California, Florida,Chicago my husbands
brother lives there , Pensilvania.,Atlantic City and of course New York . I
have also been to China 4 years ago.

I forgot to ask yoy Henry what career were you in? Do you not work at all
now? I havent been able to work for the past 7 years due to health problems.
I miss it as I am sure you do.

My God Henry your story makes mine look like a walk in the park. How have
you survived? I have had 2 ercps and wont have another unless it is the only
thing that would cure me. Which as we know there is no cure. What is a
spinterotomies? What is a Puestow procedure? I understand what the
whipple is and stent placements.

Hi Henry,
Yeah! Clear liquids. They won the first round though. Within ten
minutes my back hurt and within one and a half hours I took zofran
for the nausea. Next I will try juice or something else. No such
luck. TPN stays until I get past the nausea, etc. The nurse
yesterday said I am stuck with it until I am on a regular diet! I
had no idea it would be so long and drawn out. But I guess with the
nausea they really can't go any faster, huh? Oh well, this too shall
pass...........I have to keep rememebering that.
Hope you have a nausea free day,
Be well,
Christine

Dear Christine,
Hey! So glad to hear you sharing your good news about your starting
clear liquids! Good for you! I hope this is the start of an upturn in your
condition. You are so brave, and determined in the way you face the
debilitating aspects of this disease. Did I understand correctly that this
means that you are getting off of the TPN? If so, CONGRATULATIONS!
Keep up the good work. You know everyone here is behind you all the way!
Your Pancreatitis Pal,
Henry

Hi Elizabeth,
Well, clear liquids 1, Christine 0. They won the first round.
Within ten minutes my back hurt (as usual). Within 1 1/2 hours I
took zofran for the nausea. Ah well, guess we gotta start
somewhere. I guess I will try some juice next time. Every time I
say something about pain meds, they say okay and then don't do
anything about it. I told her last time I had darvocet and couldn't
take it cuz of course I can't eat and oxycontin which I don't take
unless I am curled up in pain. She just went on. When I call the
doc today I will ask. I know according to my history that as soon as
I am eating (whether it is liquid or anything else) on a regular
basis that the pain will be right behind. This is so frustrating!
Thanks for asking. Are you getting less anxious? I am still praying
for you and hope God gives you peace in your spirit so the rest will
come easier. Have a good day.
Be well,
Christine

Dear Patricia,
So sorry for the mixup! i did figure out what you meant when I recieved
the rest of your message, and I sent you another message acknowledging my
error, and went on to answer your question about my case. I got very
nauseated, and had to cut it short, and go vomit, but I do hope that you
recieved it. I will resend it just in case it didn't go through. O.K.?
My roomate my last two years of undergraduate college was from Canada,
although I've forgotten which exact Province he lived in. We got along
great, and he helped me with my algebra, and trig courses, and I was a tutor
for students studying English as a second language, as he spoke French. So
we complimented each other nicely academically, he was a math/biology major,
and I was a communications/journalism-English major. I wish I could remeber
where he lived. I'll have to get my old annuals out of storage. I did even
spend one Christmas with his family, and I remember it was absolutely
beautiful there. The only other time I've been to Canada was as an
eight-year-old child. i can't remeber that as well, of course, but it was
neat because I got to see Niagra Falls from both sides, (Canada's is so
much cleaner!), and see my first big rock concert with my babysitter. It was
an Elvis Presley show of all things! Wish I had taken pictures, very
inteeresting memory though. Tickets were so cheap back then my folks gave my
babysitter twenty dollars for BOTH of us for our tickets! I saw the Stones
play in Michigan years later with some friends, and they were just great!
The tickets were sixty bucks a pop though!
Where do you live in Canada? Do you speak French, or are you in an
English speaking Province? have you been to the States much? isn't it cool
how the internet can take us vicariously, virtually anywhere, and we can
meet folks from around the globe?
Please tell me more about your case, and what all you've been through
with this awful disease. I'm always interested in people's stories, even
though it is sad that you've had to go through an unpleasant experience.
There are so many folks here that I can't always keep up with all of ya'll's
stories, I try to keep it all straight in my medicated mind. :-)
Well, I look forward to our next correspondence. Take good care of
yourself, and I wish you better days ahead.
Your New Pancreatitis Pal,
Henry

Henry you must have misunderstood me I said I had no problem getting
addequite pain medication. I take demerol for pain and gravol for nausea. I
am Canadian so the drugs may have different names where you are. Of course
there are days when even pain killers dont help a lot.

Dear Patricia,
Sorry, I got on my soap box about inadequate pain control from reading
the first part of your message. I'm so glad that's not a problem for you,
and don't worry about addiction. You'd know if you were addicted, and
craving pain meds., for reasons other than pain. We live with enough pain
that we have to take something stronger than over the counter to have a good
quality of life, as you so well said it.
You asked about my story, well, I was diagnosed with Chronic
Pancreatitis in 1992, due to Pancreas divism, I wasn't a drinker, at age 29,
after about a year of mysterious symptoms. The next six years were slow,
painful, and frustrating. I was in the hospital as much as out, and
eventually had to pack in a career that I enjoyed very much, and still would
like to resume. I'm too young to retire! Most of my therapy during this time
was 27 ERCPs, with 17 stent placement, various sphinterotomies, and so
forth. Mostly, it was a time of frustration, and learning to accept my life
with a chronic illness at a relatively young age, but there are lot's of
younger folks. I slowly learned to accept my limitations, and live with
them. In 1997, I was diagnosed with type one diabetes, due to the
deterioration of my islet cells in the pancreas, and began insulin therapy
which continues today. in Dec. of 1998, my G.I said there was too much scar
tissue. for me to get anymore from ERCP therapy, and refered me to a great
G.I. Surgeon. I had a Puestow procedure, as my first Panc. surgery. Then a
lesser abssess procedure in 99, and this past Nov. 2nd. I had the Whipple
Surgery, a resection of the head of my pancreas and removal of some stomach
and small intestine, and the installation of my jejunal tube, for feeding.
That's my story in a nutshell. Well, i'm sorry, but I'm feeling nauseated,
so must go now, and take some Reglan, and Phenergan, and try not to vomit
anymore today. It's something I try hard to avoid - will write more
later.... Want to hear your stori.............
Your Pancreatits Friend,
Henry
p

Dear Patricia, (hope I got the name right now!)
Hi! Thank's for writing back again! :-) I'm glad that you have a solid
relationship with a good family doctor. So many doctors can get scared off
by Pancreatitis, it's such a complicated chronic illness. I'm fortunate to
have had a good G.I., and an excellent G.I. Surgeon. As you alluded too,
some doctors, particularly residents, I can live without. Having difficulty
with diagnosis is one thing, but rude doctors are intolerable.
You are having difficulty with getting adequate pain med, pain control?
I'm sorry. I've been down that road myself, and it is a huge issue, where
doctors, thank's to the FDA, and some unscrupulous lawyers, and substance
abusers, have made the adequate control of pain through the prescription of
narcotics, a difficult thing. In my opinion, with a particularly painful
disease such as Pancreatitis, there really is no truly good reason for
inadequate management of bad pain. Poor pain control doesn't help healing,
and can leave a patient with a feeling of desperation, and/or hoplessness.
Being in bad pain is hard on us all. Our blood pressure runs high, anxiety
is up, fever can result, and just a feeling of being out of control. With
modern methods of pain management, there is normally no need to worry about
drug addiction, and that comes from the head doctor of MUSC's Pain Managment
Department. There is a big difference between drug addiction, and drug
dependence, while in a pain crises. Personally, I've had the best pain
control while on a PCA pump, but others prefer a shot every three, or four
hours. What works best for you, and why are they not providing you pain
meds?
Your Pancreatitis Pal,
Henry

I have been really lucky with my family Doctor he has been a rock through all
the twists and turns of my illness. Some of the others I could have lived
without. Why wont they give you pain meds I

for some reason my coomputer sent the mail before i was finished i guess i
type to slow for it. I Was saying I DONT have any problem getting the pain
meds I need my Doctor says that when people take narcotic pain pills for
real pain one does not become addicted. He also cut an article out of the
paper for me that discusses this fully. It said that it is always a constant
problem worying about the addiction but needing the medication to have a
quality of live. So I take whats need and live life the best I can. I make
my self a lot of lot fat soups with lots of vegetables and a little meat or
chicken and I live on it when the pain is bad so I can keep my strengh up.
It has been nice speaking to you henry . Whats your story

Christine,,
Glad to hear you get lig. and yes it is a start just take it slow and
easy....
Hoping you have a pain free day
Your pancreatis pal Anna From Michigan

In a message dated 12/6/00 5:32:47 PM Eastern Standard Time,
sunflower6668@... writes:
<< The bad part is
that they didn't give me anything for pain.
Dear Christine,
Why didn't they give you anything for pain? Have you needed pain
meds? How are the clear liquids going? I hope you are doing OK with them!!
Elizabeth

Hi ReeAnn,
I am so glad to hear of your good news. A friend of mine has just
struck up a friendship with an old flame, and is it ever fun to watch
her! :-) anyway, I will be saying a prayer for you regarding the
gyn and colonoscopy. Take care.
be well,
christine

Hi all,
The first thing I did when I heard my news is get online so I can
tell my "family".. I get to start clear liquids! I cannot believe
how excited I am. I know I have to take it slow since I am still
dealing with the nausea, but at least it's a start. I just drank a
couple sips of broth and the pain is instantly in my upper
back..............ah well, I guess I gotta start somewhere. I have
to call tomorrow to ask about pain meds since they didn't give me
anything. Thanks all of you for your support and caring. This would
be an even uglier disease without all of you.
Be well,
Christine

Hi Patricia,
Wow. what an ordeal. I bet that was a hard one to back out of. I
am glad you are here. I am sorry that you have had such a time of it
though. I have a lot of allergies too. Right now I am on tpn but
got the good news that I can start clear liquids. The bad part is
that they didn't give me anything for pain. That kinda makes me
nervous considering.........I will call tomorrow. Anyway, back to
you. Do you have good docs? A good support system? Keep in touch
and let us know how it is going.
Be well,
Christine

Hi Patricia,
Hello and welcome to the site. You will find lots of advice and
caring people here. There are some nurses to answer questions, and
the rest of just give you lots of support and *hugs*
Again, welcome. Hope to hear from you regularly.
Be well,
Christine

Hello Patricia,
I too am one who got caught up in the case of mistaken identities...
Welcome to both you and Mary!!
Lots of Hugs
ReeAnn

Thank you, Mary, for your letter. I have given notice to the Japanese sake
club that I will no longer be joining them. The stories I have read so far
have given me plenty of motivation to keep away from alcohol.
I am trying to catch up with the group by reading about 30 of the
past messages a day. But there are 10,000 of them! The thirty I read this
morning gave me information about depression and hair loss that comes with
pancreatitis. I've noticed that, too, but attributed it to old age,
generation gap with students, etc.
Healthy day and blessings, Dave

Elizabeth,
I must have missed something. Why are you going to be in ICU?
<< I'm an RN in the ICU. This will be the first time that I'm admitted to
the
same building that I work in. The funny thing is that I'm more nervous
about
who will see me in that state that anything else right now :)
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 12/5/00 12:45:10 PM Eastern Standard Time,
KarynWms@... writes:
<< I needed to say the "what if's" with a positive outcome
Dear Karyn,
You are so right. How easy it is in every aspect of life to focus on
the negatives instead of the positives. I just have to keep reminding myself
to look at the bright side.
Thanks for the 'positive' advice, I needed it.
Elizabeth

Dear Patricia,
Wow! You have been through a lot. I've never heard of a case quite like
yours. That's amazing! I'm sorry that you have this terrible Chronic
Pancreatitis, but so glad that you're still alive to tell about it! What a
scare you had five years ago. Well, I will write more tommorrow, as I'm just
too nauseated to keep going now, sorry, but will see you here tommorrow.
Would love to hear more about your case. Thank you for replying. I'm so
sorry that I got your name confused, with Mary. The pain meds I'm on mess up
my short term memory a lot too. Take care of yourself, gotta run!
Your New Pancreatitis Pal,
Henry

Hi my name is Patricia I have had chronic pancreatits for 5 years now. It
was first diagnosed as pancreatic cancer and I had surgery to clear my bile
ducts of the mass on my pancreas.. I didnt die in the 4 to 6 months they
gave me so they have since changed the diagnosis to chronic pancreatitis. I
never was a drinker and I do not have a family history nor gall bladder
disease so there is no known reason for me to have this. My doctor calls me
a rare case.I think thats a polite way of saying weird. I have found out
quiet a bit about this disease through the Pancreatitis Network in England
there email address is www.pancreatitis.org.uk They have some good
booklets that they will send you. I myself have found if I stay low fat in my
food choices and take vitamins each day that I can at least have some
semblance of life. I take demerol for pain and gravol for nausea. I am
CANADIAN so the drugs may have different names where you are from. iF you
have any questions I would be happy to share what I have learned with you.

In a message dated 12/5/00 4:26:42 AM Eastern Standard Time,
mayer@... writes:

So, what is your advice now? From your letters, it seems fatty foods
should
also be avoided?

Hi, just a quick word, I would suggest a typical Japanese diet, but avoid
fried foods. Heavy on the rice, veggies, fish, light on chicken and pork and
beef. Green tea was good for me and I drink it every day.
Best to the land of the Rising Sun

--- In pancreatitis@egroups.com, "ReeAnn M. Betts"

been facing this all alone. The pain and thinking this is the best it
is ever going to get really played havoc on my emotions. I was so
depressed.
process of moving in with me. When we were an "item" before, it was
too soon for me after losing my husband to a heart attack. We still
remained friends these last few years and now I think we are both
ready to start planning a future (such as it may be.....) together.
ReeAnn, always a pleasure to hear good news. You're absolutely
correct, any burden is easier to bear with someone to help pull the
load. I hope everything goes smoothly for you & your beau.
Friendship is a terrific base to a romantic future.
jang

Hi Diane,
Bless your heart...Sorry, I guess I just assumed you had just gotten back
from your trip. At my age, I really know better than to assume anything! :)
Glad you are feeling better and I will keep you in my prayers. Wishing you a
pain-free day!
Hugs & Prayers
Carole

Hi Mary,
It seems we have a few Marys on this board now. I just read your post to
Henry about working with special needs children. That has to be a very
rewarding job and I'm sure the children must love you. I think it's
wonderful to have caring people like you to help with our special needs
children. It takes "special" people like you to do this job.
Hope you have a pain-free day.
Hugs & Prayers
Carole

I'm sorry Patricia, I was trying to rectify a situation where a new member
has felt excluded from our group, and it gets confusing with so many new
folks joining. I've been called different names than my own before myself.
Henry

Dear Mary,
Welcome to the group! Sorry you have Chronic Pancreatitis. It's no fun,
but somehow with our doctors, families, and this wonderful "second family,"
of folks with Chronic Pancreatitis, and their caregivers, we muddle through.
Keep posting, and you'll make all sorts of new friends, who are caring
people, who understand what you're living with.
Your New Pancreatits Pal,
Henry

soon for results.)
Hi jang,
Thanks for asking. The MRCP itself went okay, but when it came to the
contrast,they had a hard time finding a vein. I should have guseed that
would happen. I'm glad it didn't take as long as CT Scans used to take...I
really don't like being in that tube. I tried to keep my eyes closed the
whole time..but I did peek a few times. If it was just a little bit bigger
it might be better. I can't imagine how larger people can get through
them,they would fill it up so much more.
Anyway, I'll let everybody know when I get the results. I would bet it
didn't show anything though. Most test don't except for ERCP's and EUS's.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

Hey Carole,
I guessed I forgot to mention....I didn't go on my trip. I was feeling too
sick and nauseous. My family was pretty understanding about it this time...I
was surprised. I spent about a week down and out with my heating pad on all
the time. My kitty loved it though,she'd lay on my belly on top of the
heating pad. The pressure of her weight helped too...until she got up. Just
as I got ready to call the doctor the next day things started calming down.
Ain't that typical?? Anyway, that's why I was not on the puter,not because
of the trip.
Diane
Truly,truly I say to you,unless one is born again,he cannot see the kingdom
of God(John3:3)

hi patricia,
i have recieved a few posts that were obviously meant for you. i am
new here too. just posted for the first time yesterday. just found
out about the chronic pancreatitis last week and when i was searching
info on it i came across this site. it seems to be a wonderful thing.
the
people are so nice and i think the support of those who are going
through the same thing will be very valuable in the future.
my panc. comes from a lifetime of drinking. i had acute panc. 3 times
in the last ten years. thought i was going to die for sure each time
but even that wasn't enough to stop me from resuming drinking after i
had felt better for a while. guess i can be really stupid at times.
so this is finally it. no more drinking again. ever!!
have you had the chronic panc. long?? if this is new to you, as it is
to me, you must be quite scared and looking for a lot of answers.
i think this place will help us with that, too.
maybe we can sure what we learn as we go along.
i will keep you in my prayers.
mary

hi dave,
the first thing you better do is quite that sake drinking club!!!!
if it weren't for alcohol i wouldn't be here.
good luck to you
mary

hi henry,
thanks so much for writing to me. however, i did get mails from two
women yesterday. i didn't post that i had no responses so it must
have been a mistake or maybe someone else.
i'm very sorry to hear that your panreatitis had progressed so far.
i work with special needs children and two of them have g-tubes so i
do know that they are very easy to take care of and do provide all the
nutrition you need. these go right into the stomach rather than the
jejunum like yours.
are you still able to eat small amounts of food? i think it would be
hard to give up eating completely - just for the taste. when the two
boys came to me they had not had any food by mouth for years but they
can so i set aside a special time every day for them to have "tastes".
they really enjoy it, although one of them has a little trouble
because he is just learning to close his mouth when i put something in
it. a lot of his food runs down his chin and all over the bib. but
he still enjoys it. especially pudding and yogurt!!
how long have you had the diabetes? do you have to take insulin or
can you get by with p.o. meds?
so much surgery! good lord. that must be so hard on you. now that i
have settled the fact with myself about no more drinking i plan to try
to give up smoking so i will be in better shape if i have to have
surgury, which i probably will since i have a gall stone. i think
that will be even harder than giving upthe drinking and modifying my
diet.
thank you again for taking the time to answer my post. i really
appreciate it. i hope you will write me again. i will keep you in my
prayers.
mary

Hi Jang,
I have a copy of the video saved with your name on it! ;-) I'll
still be collecting orders until next Monday, December 11. If
anyone else would like one that hasn't notified me yet, just
let me know. E-mail me at tull@...
or send a check/money order for $20 to:
Karyn Williams/Pancreatitis Support Network
6936 West 71st Street
Indianapolis, IN 46278-1609
Any kind of major change like that is always stressful, and we all
know how stress can affect our bodies, and especially those that
suffer from any kind of chronic illness, etc. But I think she came
through it fairly well, and is starting to feel comfortable/settle in.
I did most of the packing/un-packing, so now she has to call me
whenever she can't find something! ;-)

In a message dated 12/05/2000 12:46:38 PM Pacific Standard Time,
ReeAnnEgroups@... writes:
Hi ReeAnn, wow, is your plate full or what??? i meant ur medical history, my
heart goes out to you to even remember all that stuff! I am 30 miles north
of 'downtown Houston, place called The Woodlands, just up I-45 on the way to
Dallas. I am a supporter only, and listen and learn from you guys and pass
the info to my friend who was just diagnosed and operated on. he is 34.
alcohol abuse. life is different now for him, and he has no family by him,
so i'm like his best friend and i live 3000 miles away. i may not post much,
but i absorb like a sponge.
Christie in tx

Hello Christie,
Where in Texas are you? I am in Fort Worth and work at Harris Methodist
hospital(downtown). I know Texas is a big place... but still nice to know
there is someone from this group also here.

In a message dated 12/4/00 11:23:56 AM US Eastern Standard Time,
tolly2@... writes:
<< I am very glad to find this site. I have had acute Pancreatitis 3 times
in the last 10 years. The last time I was on a much anticipated vacation in
Maine and by day 3 got to spend the whole rest of the time in the hospital.
I felt sick on the first day and was extremely ill by the second day. had
to wake my brother up in the middle of the night to go get an ambulance.
you would think a person would learn from this type of experience. but, i
can be very stubborn so after a month or so of feeling better i figured
"what could a couple of beers hurt?" well, for me anyway, one always leads
to another and before long I was back to drinking on a regular basis.
A few weeks ago I began to feel sick again. I just knew it was my pancreas
and was waiting for the acute pain to start. It didn't. Instead, I just
stayed moderately sick -- epigastric discomfort, some back pain, nausea,
couldn't eat, etc. I'm sure you understand. I went to the dr. after 2 weeks
of this and was diagnosed with chronic Pancreatitis. What a surprise! It's
like I was begging for it.
Dear, dear Mary, I know some of how you must feel. I am 43 and went into the
ER Aug. 4, 1999 with those exact pains. I am a nurse. When patients come into
the ER and say they have chest pains like an elephant sitting on there chest
and they have a sense of impending doom, we know how serious it is. Well,
that how I felt when I went into the hospital here in Indianapolis. I started
this group to help myself and other to have a safe place to vent and ask
questions. And I am happy you landed on this site. You are in the right place.
<<So now I don't know where to go or what to do. I'm hoping to make some
friends here to share with. Will try not to be so long winded next time. I
would like to know what to expect in the future and how much of a future I
have. I'm really scared. Mary
The most important thing that I think is to look for a pain management
specialist. There are doctor that only do this. If you find more than one,
ask them questions, find out if they treat many Pancreatitis patients. There
are many, many reasons that cause chronic Pancreatitis. They affect generally
two areas, one is the ducts, and the other is the pancreas itself. When you
drink alcohol, it attacks the pancreas and causes calcifications to form,
this means it causes the pancreatic juices to be released to digest your
food or drink. When it is alcohol, the alcohol wins and the result is that it
causes the pancreatic juices to begin digesting or eating itself. Where this
happens, calcifications or stones develop. Early in the disease process, some
of these stones will develop in the duct. There is a lot more to learn that I
can share with you. I am not a doctor so what I share is purely based on what
I have read or heard from other people.
Anyway, we are glad you are here.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 12/4/00 12:50:55 AM US Eastern Standard Time,
dhollis062@... writes:
<< I've been gone for about a week or so...anybody miss me??
Hi Diane and welcome back. We did miss you, thanks for letting us know what
was going on. I have been gone for a week or so and it seems like months
until I can get back on line.
<< The biggest thing this time was how much I slept. Just this past Friday
night I slept from 1am until 3:30 pm the next afternoon. I have learned that
that is called "pain exhaustion." When you go for a period of time without
good pain relief, and then it begins to improve, your body just sleeps. It
tries to make up for all the disrupted sleep that occurred due to the pain.
That is a weird phenonamen. It has happened to me. I am grateful I am not
working, because when it hits, it comes on quickly and there is no fighting
it.
<< I also got my TENS unit...although no one taught me how to use...and I
have to wait for an apt just to get a nurse to teach me about it. They wanted
me to just see if I could figure it out from the directions...I don't think
so!!!! . It is so difficult to get help from Vanderbilt..somebody need to
know how difficult this has been for me. Someone who cares that is. Love
y'all, Diane
That's ludicrous. I am a nurse and half the time I can't even understand the
directions. I am sure it is one of those cost saving ideas for
administration. But it definitely hurts patient care.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

In a message dated 12/3/00 10:45:25 PM US Eastern Standard Time,
lizbear68@... writes:
<< I'm an RN in the ICU. This will be the first time that I'm admitted to the
same building that I work in. The funny thing is that I'm more nervous about
who will see me in that state that anything else right now :)
Hi Elizabeth,
I understand that weird feeling f being a patient in the same hospital where
you work. It happened to me on more than one occasion. I share the fear of
embarrassment of how I will look to them. What helped get me through it was
to realize that they were just as nervous as I was. Once we all got that out
in the open, we all had a good laugh.
<<Even with everything I know about gall bladder surgery I am still nervous
about going under general anesthesia. In my heart I know everything will be
OK but my mind loves to play the 'what if' game. Elizabeth
Ah, yes, the ole' "what if" game. I have had to work very hard to get out of
that emotional roller coaster. I would say the "what if's" to every thing
bad, finally someone suggested that if I insisted on playing that game, then
I needed to say the "what if's" with a positive outcome. Like: What if I
tolerate the anesthesia so well, I won't have to spend so much time in the
Recovery Room. For me to go in my head is dangerous territory. It is the
land of "Stinkin Thinkin." I need to stay focused in my heart, close to God,
and friends with a positive outlook.
You will do fine.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

A big welcome to mayer@... and tolly2@...
You have become a member of a very large and growing network of others who
are living with Pancreatitis. The volume of mail generated by the members of
this group can be up to 150 a day. I would suggest that you choose to receive
your mail as a daily digest. That way you can open up a little mail at a
time, and the volume of mail will not fill your mailbox.
You have found a site that I am sure will help you in many ways. Please email
if you are confused with all that the Pancreatitis Support Network has to
offer you. As a member you will be receiving many email posts from those
suffering with and living with this disease. You will hear stories with many
similarities as your own. Please never feel that you aren't as sick as others
and that you don't have much to offer. We all benefit from what everyone
shares. Ask as many questions as you like. You will, more than likely receive
as many different answers as those who respond.
We are not doctors and what we share is from our heart; it is our own
experience, strength, and hope. Our goals is to improve the quality of our
lives; to become survivors of this disease, not the victims.
If I can be of any help please feel free to email me privately at any time.
It will ensure that I receive your post and respond. Sometimes I don't feel
well enough and get behind on responding to all the posts like I would like
to.
However, the question, issue, or concern, is probably one that someone else
has but maybe reluctant to ask.
Please spend time browsing through the home site. The URL to the main page is:
http://www.egroups.com/group/pancreatitis
Visit the site frequently. There are frequently current polls being
conducted, I encourage you to participate in them. It can be a way to get to
know one another better, as well as provide insight towards research of this
disease. There is a substantial and growing list of resources and links to
provide you with additional information. There is a member profile which you
can fill out; this is entirely optional. We have a large component of AOL
subscribers who communicate via IM, however, there is a chat room within this
home site, as well.
There are three ways to receive e-mail posts:
1) Receive individual emails (This may be many as the group is active)
2) Receive daily digest (This will deliver all the e-mail posts into one
group which you receive daily)
3) Do not receive any posts directly via e-mail (This way you can go to the
main site and read the posts directly off the messages on the home site)
You may respond and send a post regardless to which method you have chosen.
So, with that, I again say welcome, and we are glad that you have been
directed to and found this site.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

I am dropping my email service so please remove me from your mail list. i am
going to a new provider once I have my new email I will re jion
thanks
David J. Simmons

Hi Mary,
Like Henry, I'm very sorry you haven't had a response to your messages. I
believe we have a few Mary's on this board...maybe that has something to do
with it. Please keep posting and you will get replies. This group usually
replies to all new members with a warm "welcome". Now that all the members
know you didn't get a reply, I'm sure you'll be getting a lot of replies.
Mary, we are glad to have you with us but very sorry you have Chronic
Pancreatitis. Please don't give up on us...keep sending your posts. Looking
forward to chatting with you again. I'll keep you in my prayers.
Hugs & Prayers
Carole

Hello Carole,
Thanks for responding to my post. Glad to know there is someone out there
who knows exactly what I am going through. It has been very frightening for
me becuase until a week or so ago, I been facing this all alone. The pain
and thinking this is the best it is ever going to get really played havoc on
my emotions. I was so depressed. I would go to work and come home and
barely have energy enough to take care of my dogs and fish, let alone do
anything around the house. And this really bothered me too because I am of
those people who like a clean, neat house. It has been anything but that
lately....
Fortunately, this has changed. An old friend/boyfriend is in the process of
moving in with me. When we were an "item" before, it was too soon for me
after losing my husband to a heart attack. We still remained friends these
last few years and now I think we are both ready to start planning a future
(such as it may be.....) together. I have been honest with him about all
the aspects of this disease, telling him it certainly wont be a bed of roses
(quite to the contrary, I might have to wake him up in the middle of the
night to changed the sheets...) and he is still the happiest I have seen him
in years.
I know that is a little off subject, but not entirely. The people who care
for us are very special people and they deserve recognization. There is so
much they have to deal with in helping us cope.....
I will keep you posted of any new developments as they arise. I hope you
will do the same. And I am hoping today is a "good" day for you.
Lots of Hugs
ReeAnn

I am also happy to find this group. After reading just a few letters I feel
I am among courageours and supportive people. During the annual physical
checkup, the doctors recommended another blood test. That led to a CT and
then what they called a "Dynamic CT" with dye for the pancreas. The result,
I found out last month, is that I have chronic pancreatitis. About all the
doctor told me was to avoid alcohol.
I am male, 62, and have been here in Japan since 1973. I've had various
stomach attacks over the years but didn't pay much attention to them. Since
about 1990 I've had gall stones. For the past six years I've been part of a
Japanese sake drinking club.
So, what is your advice now? From your letters, it seems fatty foods should
also be avoided? What are some things to watch out for? The doctors here
don't like to talk to patients directly so much, but are there some
questions that should be asked? (Generally the doctors will tell family
members if they ask directly.)
I admire you all for facing grim facts and doing the best in spite of them.
I hope I can do as well.
Take care, Dave

==============================================================
Dear Mary,
I am truly sorry that this has happened, somehow, you seem to have
slipped through the crack. Please know that this is very unusual that you
posted several times with no response! I am contacting our group leader,
Karyn Williams, to make her aware of this unfortunate mistake. This has
always been the most friendly website to me, and so many others. It's not
normal for you to not recieve any responses, and I want to help. Please post
back to me, and we can chat, and I'd like to share stories, and learn more
about your Pancreatic condition. Anyway I can help rectify this error, I
will do my upmost.
First as a way of introduction, my name is Henry Williamson, I live way
down south in Charleston, S.C. I am 38-years-old, and have been diagnosed
with Chronic Pancreatits, caused by Pancreas Divism since 1992. I've had 27
ERCPs, with various stents, sphincterotomies, and so forth. I've had three
surgeries on my Pancreas, the most recent being th Whipple procedure about
four weeks ago. I developed type one, insuling dependent Diabetes in the
Summeer of 1997, as a result of the insult to my islet cells in my Pancreas
over time. I'm currently on TPN feeding, but anxious to get off, because now
I have a J-tube, (Jejunal), in my belly, which thankfully allows me to push
in liquid nutrition straight through into my small intestine, thus avoiding
the stomach, and Pancreas! Neat, I think! I'm greatful to have an excellent
surgeon, who treats me very well, and is so supportive. I've been with this
group since September of 2000, and I feel that it is almost like an extended
family, even though we don't see one another, everyone here is so kind, and
supportive. That's why I especially want to help you get connected. I hope
Karyn will get my message, and get the ball rolling for you here, if she's
not sick, or in the hospital again, she's a very neat, and nice lady, always
doing for others despite her own health problems. And she's an R.N. with
this disease! She knows it from both sides of the hospital bed!
Well, Mary once again welcome to the gang here, and just hang in there,
and send some more post if you like, and mention that you've been waiting
for a reply. Then the response should be a lot of nice folks here, writing
to you, worrying about you, and being supportive! :-)
Your New Pancreatitis Friend,
Henry

Dear Anna,
How did the HIDA scan go? With everything going on with me I am
wondering if you will be in the same boat....
Take care and let us know how it went...
Elizabeth

Dear Carole,
It was so nice to read your latest post to me. You are such a kind, caring person. I too tell my mamma about people on this board, and it's the same here, she talks about ya'll to me as if we were neighbors. She knows how important this "family," is to me. What a wonderful thing it is having this technology to have a group like ours that feels like "family," even though we never see one another in person! Twenty years ago we couldn't have had this, it's a blessing.
I'll tell you, I agree with you about dear Shirley, I'm about as nervous for her surgery as I was for my own! I can't wait 'till we hear some good news, but as you said, it will take a little while before that happens, meanwhile we'll have to keep her in our prayer time. I really believe in the power of prayer. When I was recovering in the hospital, when I would have a bad day, and feel so alone, and afraid, just thinking of all of you here praying for me, was very comforting. It was very nice of Diane to keep me in touch with ya'll through the nurse, and I'm glad that Shirley has her family with her, and they can get a message to us through her nurses. Her's is such a big operation that I'm worried, but I know she's in good hands. I do hope that they can take that port out that is causing her that swollen arm.
Thank you for telling me more about your family. It's so nice that you have a good, strong family, and those darling grandchildren. Please tell Madison, that I appreciate her thinking of me, that's so sweet, and that my mamma will make me some low-fat chicken soup, since I live too far for you to make me some, but I appreciate the thought! :-)
Christine is so right about our bodies being such complex machines. One little organ like the Pancreas goes haywirre, and our whole world is turned on its ear! In answer to your question about my health, it's slow going now. I can only eat clear liquids, and skim milk, or I have bad pain. I'm still nauseated, and weak, running a low grade fever much of the time. It just takes a while for the body to recover, I'm optimistic for improvement however slow it is. My doctor has increased my pain meds for now, until things settle down.
God will provide.
How are you feeling Carole? I hope that you're doing O.K., and not suffereing too much discomfort, or nausea, how's your eating? I pray for you too, my friend.
Your Pancreatits Friend,
Henry

Tull, I losy your email address but would very much like to order a video. Is
it too late. If its still possible to get a copy, please let me know & a check
will immediately be in the mail.
Hope Karyn's move went smoothly & she's feeling well.
jang

Dear Mary,
Welcome to our "family," of friendly, folks, and their loved ones, who are afflicted, affected by this bad disease. Sorry that you have this problem, I always hate to hear of anyone suffering with Pancreatitis, but I hope that by joining this site, you will find comfort, support, and people sharing, and caring their experiences. Keep on posting! Don't be shy, just jump on in, and you'll find yourself with a big group of folks who understand what you are going through.
Once again, welcome, and I hope that you enjoy sharing with all of your new friends!
Your New Pancreatitis Pal,
Henry
============================================================================

better than you expect. I'm not a terribly child-oriented person, so I knew I
would love the grandkids, but never expected the depth of feelings. Pow! You
look into that little face & that's it.
My first grandchild was born 1 month before Hurricane Andrew came roaring by.
We were all together during the storm. Everyone else fell asleep, but Courtney
spent that night in my arms. The bonding was even faster & stronger than with
my own children.
while. I am planning on going back after the first of the year full
time. We'll see how it goes. Right now the tpn is an issue, although I can
work around it. The constant pain is my biggest problem. How does one get
through it?
Good question. I use a Duragesic patch & work while it is in place. I have not
worked or driven aa car while using narcotics for the breakthrough pain. I
think the pain is more disabling than the drugs, but I'm afraid to work or drive
if I've had a recent dose of the short-acting narcotic. I'm afraid its like the
person who drinks a 6-pack & says he's not affected. I'm afraid the drugs might
slow down my thinking or responses without me realizing it. I've had a lot of
absences from work due to pain; we'll see how much longer the frequent absences
will be tolerated.
management.
A pain management center is really helpful. Try to find one that can give you
several options.
TENS unit = Transcutaneous electrical nerve stimulation.
I found this info at a pain management site on-line: "Evidence is accumulating
that TENS acts by increasing CSF levels of beta-endorphins, together with
activating of the "pain gate" by counter irritation."
In 1965, Dr. Ron Melzack and Dr Patrick Wall developed the gate control theory
of pain. This theory states that painful stimuli are carried by small diameter,
fast conducting fibers through "gates" in the spinal cord to the brain. The
theory lead to treatments that looked at closing the gate with other stimuli.
These treatments include acupuncture, TENS, and spinal cord stimulation."
Take a look at this site:
http://serendip.brynmawr.edu/bb/neuro/neuro99/web3/Kinser.html
often enough-I am finding out with this disease that you are absolutely
right-nothing makes any difference.
I think some things DO make a difference. I think taking enzymes, avoiding
fatty foods & alcohol help. Taking pain meds early in a flare-up also helps to
get the pain managable; waiting too long in an attack to take pain meds makes it
harder to overcome the stronger pain. I do agree though, nothing seems able to
prevent some degree of pain.
I hate to tell you, but in medicine, every drug has a drawback. Every drug or
treatment has a negative effect to weigh against a positive effect. Its all a
balancing act. Example: Say you have a headache, Take Tylenol & risk liver
injury. Take aspirin & risk bleeding ulcers. It seems that you always have to
consider if the hoped-for gain outweighs the possibe injury. Kind of makes you
wish for the bad old days when you didn't know anything & just relied on the
family doctor - NOT!
back of my head I am sure it will go away. ....well, I guess that doesn't hurt
anything, huh?
Queen of denile?? Lots of us trying for that title. As long as you do whatever
is possible to do to keep this disease under control, I can't see the harm in
denial & hope.
up in the hospital most of the time or do they treat in the
ER and send you home?
Since using the Duragesic patch, OXY IR for breakthrough pain, Stadol nasal
spray for REALLY severe unrelieved pain, I've only needed the ER once or twice a
year. If the pain breaks after a couple of doses of Demerol, I go home. If
not, I'll be in for a few days. I've been more fortunate than many in this
group to have avoided long hospital stays and major surgery.
Sorry to have taken so long to get back to you Christine. Hope you're having a
comfortable day with many good days ahead.
jang

hi carol,
thanks for the welcome, and especially the prayers. it's good to know
that there are people who understand and are there to talk to. i
don't know how bad my pancreatitis is at this point but guesss i will
be finding out soon enough. i go back to the dr. on thursday and will
ask him to refer me to a gi specialist then. in the meantime i am
just trying to get my head around this thing and believe that it is
really true.
have you had this desease for very long?? how has it been going for
you? do you have times when you feel good? what are your attacts
like and how often do you get them?? i don't mean to be intrusive,
please forgive me if it sounds that way. it's just that i would
really like to know what it is like for someone else. i think it
might help me to understand this whole thing better.
once again, thank you for making me feel welcome.
you will be in my prayers, also.
mary

In a message dated 12/3/00 9:45:54 PM US Eastern Standard Time,
chevytk85@... writes:
<< I read everyone's posts and I want to thank you all so much. When she
was telling me she needed to be alone, I didn't understand. By reading from
you all I understand now. She isn't pushing me away she is trying to deal
as
best she can. I just wanted to let you all know you helped me realize that
she needs time to herself and I will do all I can to give her that but I hope
she knows that I am definitely here when she needs me. Leon
Hi Leon,
Reading your posts lets me know how much this Network has reached out and
touched so many people's lives. There are many boyfriends, fiances, or
spouses reading and posting. What these person's posts do is give me more of
a perspective of how this disease has affected the caregivers. It seems that
my friend, Tull, has the same frustrations; he so desperately wants to make
me well again.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

but of course we did! When anyone is away, it is different. Hope
you are feeling better from the nausea as well as the pain. You
know, when you are in the middle of one or the other, it is hard to
know which is worse...........................
Be well,
Christine

Hi Mary,
We are glad you are here too. You will find everyone friendly and
helpful. And although we can't necessarily answer the future, we can
give you lots of support and hugs! So, welcome!
Be well,
Christine

Oh yes, that old game. I always tell people-this is one of my
favorite lines-the anticipation is always worse than the reality.
Well, that goes for a lot of things. I think your anxiety is one of
them. However, pancreatitis is definitely NOT one of them. The
reality of it is way worse than anything we could ever imagine. I am
doing somewhat better, thanks. I am back to work part time. I am
still struggling with the nausea and heartburn, but the pain is what
drives me crazy. The next time I see my doc, I am going to have to
ask her about pain management................that is all there is to
it. Good luck, dear, you are on my prayer list.
Be well,
Christine

In a message dated 12/2/00 10:23:46 PM US Eastern Standard Time,
ingallslhitmx4@... writes:
<< I really haven't said very much, I think I've posted once or twice?
Mostly I
just listen to everyone else talk about Pancreatitis and that helps me
because I don't know anyone else with this thing.
Hi Teresa,,
It is nice to hear from you and know that this Network has been helpful to
you. Sometimes I am not sure what benefit the listener gets. It is nice to be
reminded that that the Network is helping not only the people who post, but
also, those who are silent listeners.
<
Teresa, you actually have more in common, with a lot of the members than you
think. I suffer primarily with pain since I was diagnosed in Aug '99. I also
have severe bouts of nausea, but I have never had diarrhea. That is great
that you have gotten a hold of your pain. What are you currently taking for
pain? With the help of my pain management doctor, I also have control of my
pain. What worries me is that my pain management program is masking the pain
associated with progression of this disease.
<<My doctor thinks my Pancreatitis was caused by overindulgence in good ole
alcohol. I'm sure that's probably part of it but it seems to run in my
family also.
Teresa
Alcohol related Pancreatitis results in calcifications of the pancreas and
its ducts. The unknown cause of my Pancreatitis also causes calcification of
my pancreas and has destroyed my islets cells, resulting in insulin dependent
diabetes. Chronic Pancreatitis is unfortunately progressive and eventually
will cause damage to the spinal nerves, as mine has. Due to this, a total
Pancreatectomy would not relieve me of my chronic pain. I did have a Distal
Pancreatectomy in Sept. '99. That was for pain control, not for curative
results. Since that surgery Cat Scans have shown further calcifications.
Since my Pancreatitis is going to result in deterioration, I have turned my
attention towards achieving the highest quality of life that I can.
Thanks for sharing and posting.
Hugs, Karyn
KarynWms@...
Indianapolis
Local Support Group
1st and 3rd Tuesday Evening 7PM to 8PM
North United Methodist Church

--- Do you have
No divism here Henry. My pancreatic duct has a corkscrew twist in it
which is giving me the pancreatitis fits. I could deal with it all
except for the pain. That is what drives me crazy! Anyway, thanks
for the ideas for traveling with tpn. I will talk to the doc and see
what she says. Hey, I found your name on the PSN in the UK. I was
dinking around and found their group. Do you still post there?
Yeah, when the Bible says we are fearfully and wonderfully made, it
sure wasn't kidding, huh? How is that poor child doing, do you
know? Were they able to help him? The doc told me my double ureters
wouldn't affect anything unless I start to have problems later on. A
science teacher (of course :-) at work told me that it doesn't seem
like such a bad thing, except that I have double the possibility for
kidney stones :-} Ah well, if it weren't one thing, it would be
something else, eh?
Be well, Christine

Welcome Mary,
Glad to have you but very sorry to hear you have this awful disease. All
your symptoms are very typical of Pancreatitis. You have found a support
group who have members here who, even with their pain, try to help other
memb