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Becky,,
I will do that for you but go ahead and call her she needs to talk with
us who have this too so that she knows she isn't crazy about her feelings,
she told me she had wished I would have just came over and made her talk I am
glad that I just went I know it helped and I know she would love to hear from
you.. the number is 517-894-3369.. thanks for your prayers for me to .. you
are in my also and I hope you are feeling some what better.. what has been
going on ??
Wishing you all a
pain free day Anna from Michigan

Anna, I am in Hawaii and I reiterate my invitation to anyone coming here. I
will do my best to make any vacation the best I can for anyone in the group.
Tammy and Steve, Steve you have to be a saint! God bless you. I am praying
for both of you. As mentioned in this group, I say again if either of you
need anything or just to talk, or resources, or anything....please...let us
know.
Now it is my turn to ask...How many of you are on your own? Like I am. I have
no
family here and live on my own. A few good friends, but they don't understand
- they
just accept and leave me alone during the bad times. My choice, I've asked
them to
stay away as I am not very good company when I hurt so bad I just want to be
alone.
This group is the only outlet I have, where I can share and care. THANK YOU
ALL.
Aloha,Rich.

Anna,

Please, please, tell Tam she is in my thoughts and prayers. I hate being so far away and I am so thrilled you are there to be able to talk to her and help her! Ask her if I can call her at the hospital and let me know the #. We spoke before christmas but I was gone for 2 weeks and didn't get back to her. Give her a hug for me.
I'm sorry I haven't gotten back to you, but I have not been feeling well. I got your email re: your surgery. I hope you are better and the panic attacks do not continue. As always you are in my prayers!

Love, Becky

Dearest Shirley,
I have tears in my eyes after reading your story! I am so happy for you and
your success! You are one courageous woman! I had my church pray for you
(actually on November 17 - that is when I thought you were going in for
surgery at first) Please stay online and help us see your ongoing success.
It gives us hope.
love you,
Staci

Dear Sandy and Shirley,
Have you tried a drug called Trazadone? It's an older antidepressant.
They found that it made patients too drowsy, so now they use it a lot at The
Medical University of South Carolina for sleeplessness. It's worked for me
very well. Just a thought. Hope you find a good answer, it's terrible to
have insomnia, and then be sleepy during the day. I wish you the best.
Your Pancreas Pal,
Henry

I wish I had an answer to this sleeping problem. I don't. But I do have
suggestions. 1. Avoid stress, even the stress of a drama TV program for an
hour before your chosen bedtime 2. Take a shower or bath 3. Choose a specific
bedtime. 4. Realize that if you don't go to sleep it's not the end of the
world, you have done this many times before. 5. Convince yourself that it is
OK to sleep, all of you problems can be put onto a shelf and they will wait
until tomorrow. 6. Be sure you have had plenty of water during the day. It's
OK if you have to get up and go, you will. 7. Try some herbal tea at least 30
minutes before your bedtime, no caffeine (sp) some teas are for sleeping but
drink what feels good to you. 8. Clean sheets are nice. 9. Read a little,
something light or some IRS publication. 9a. Sometimes a little music with
the volume really - really low helps, some music you like very much. 10. A
little bedtime prayer can't hurt, remembering to give thanks for your
blessings. 11. Realize it is OK for you to sleep you really won't miss much.
12. Say good night to others even if they are not even there. 13. Plan a good
future, a good day tomorrow, a good garden next spring, plan to do something
that you do well and would be happy in doing. 14. And finally dream of a nice
thing, winning the LOTTO, being healthy, a really good baked potato,
something you would enjoy.
And if you still can't sleep, it's OK as I said you have been here before and
it is not the end of the world. You will have the chance to try again a
little later, maybe even tomorrow
Poncho

In a message dated 1/13/01 8:42:00 PM Central Standard Time, mrsteep1@...
writes:

the relationship between her and Steve and the kids is a joy to watch..
there
is so much love there.. any sorry for rambling but just wanted to share
with
you what is going on ..I will let you all know more as I do if Steve
doesn't
get on to tell you...

thanks anna for keeping us up to date. i wish i knew someone here that i
could visit and give some assistance to when i am feeling like it. i know
how important it is for human contact and to know that someone else cares
about us besides our immediate family. it's our way of knowing that we are
not alone in this 'ole world. i thank God every day for finding this site
and being able to communicate with all of you. debbie s. (ark)

Thanks to both Sandy and Rich, you both have made me feel better and it is
wonderful advise thanks...
Wishing you all a
pain free day Anna from Michigan

In a message dated 1/13/01 5:42:45 PM Central Standard Time, smraef@...
writes:

Debbie, how are you, Jennifer and her unborn baby doing? I'll keep you all
in my thoughts and prayers.
Sandy

thanks sandy - - jennifer is at home (she came home a couple of days before
christmas) and is on a walker - so she is a little limited. but she tries to
walk on her own as much as possible. baby is fine and we found out thursday
that it is definately a boy. i got to go in and see the ultra sound along
w/her mom and my mother and kris, my son. it was exciting. they taped it on
video while we were watching. baby is fine - only about 1 1/2 pounds right
now, will be putting on weight. we got to see his face, hand, legs etc; and
while we were watching he opened his mouth and then he had the hiccups. what
a trip!! things are so advanced now. kris and jennifer also got married on
new years day - so that was great. just immediate family was there. they
seems more relaxed and ready to face parenthood together.
hope you are doing well. your friend, debbie s. (ark)

Debs,
I have never heard of this surgery. What exactly is it? And how does 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 1/12/01 9:56:59 PM Central Standard Time,
lizbear68@... writes:

"Maybe it will just go away..." Oh my gosh, I sit here laughing because what
is my alternative?? What are these doctors thinking when they say things
like
this? I tell him I've had this pain for almost 2 years...and fill him in on
the story and he tells me maybe it will just go away????
Thanks for 'listening',
Elizabeth

HA! that is what my first gi was saying. but new one at med center has
never given me that in a sentence so far. but who knows - - it could work
for you with no problems - i pray that it does. debbie s. (ark)

In a message dated 1/12/01 6:21:56 PM Central Standard Time, mrsteep1@...
writes:

I think I will be fine this time I know I can do it with the
help of the pills and the strength I am going to take from all of you.. So
that is what is going on with you pancreatis chicken Anna from Michigan..
but
I know this is going to help somewhat so I can do this.. so wish me luck
all
I will keep you informed ...

bless your heart, anna! i think sometimes when i start crying and can't
stop that it is because of panic. take care of yourself and chill out a
little bit. i went on a little bit of a crying binge today! debbie s.
(ark)

In a message dated 01/13/2001 2:53:38 AM Central Standard Time,
ichardj@... writes:
<< I know this sounds
like garbage
but confidence in your mind and heart is more important than anything in a
hospital.
Believe in all your friends in the group, believe we love and care about
you
(although
I have never met anyone in the group). I feel closer to the people here than
most
everyone I know. We share a common bond.
Let go and let God.
Aloha,Rich
Rich, this is wonderful advise. The connection between our emotional health
and physical health is an important one. Letting go is a hard thing to do,
however allowing God to be in control brings comfort and peace.
I too feel closer to members of this group Rich! I am beginning to believe
that as a result of this disease bringing me to this group, I have developed
more compassion and understanding for others because of the group of people
here.
Anna, feeling fear and uncertainty are very common feelings in trying to deal
with this disease. Don't ever hesitate to share whatever feelings you have.
We're here!
Sandy

In a message dated 01/13/2001 2:53:38 AM Central Standard Time,
ichardj@... writes:
<< I know this sounds
like garbage
but confidence in your mind and heart is more important than anything in a
hospital.
Believe in all your friends in the group, believe we love and care about
you
(although
I have never met anyone in the group). I feel closer to the people here than
most
everyone I know. We share a common bond.
Let go and let God.
Aloha,Rich

In a message dated 01/13/2001 12:02:48 AM Central Standard Time,
LMNOCDBDIS@... writes:
<< Continue to believe and talk to God out loud, where you can hear yourself
as
you speak in an anguished voice. Hear yourself and your thoughts, tell
yourself that this too shall pass. Heal yourself from your heart and tell
yourself that the love you have for yourself is worth fighting for and you
will win no matter what it takes. Try to focus on something else instead of
the pain, find a way to meditate at least to try and cut off the edge of the
pain. I will pray for you and we will not abandon you when you need us the
most. I know that it seems that there is no way out, but there is because I
remember being in your place and now I am a little better where I can
function at least. Keep the Faith.
A Friend Carmen
Carmen, you expressed a wonderful way to cope with the terrible pain that
comes. Sometimes just coping long enough to get through the really difficult
times that we often have is all we can do. I like you and Tammy have been in
the same place, with pain so severe that I too felt like dying would bring
peace. I too use prayer to help, but to pray in the manner you describe
might be very beneficial for me. During the difficult times I cry in agony,
however I tend to not allow myself to really release the full intensity of
the pain or the feelings associated with the pain. Praying with the full
intensity of the feelings could be a wonderful way for me to truely release
the intensity that builds up inside me. I guess I have always been so
fearful that
expressing the intensity of the pain will scare others away. However, I
think if those around me know what to expect and are given permission to
express their pain in the same way, this could be very healing.
A friend in Christ,
Sandy

In a message dated 12/17/2000 12:11:29 PM Central Standard Time,
shana@... writes:
<< I will post again soon. Sometimes it feels like this is the only contact
I have with the outside world, and especially with people who understand!
Love you all, and hugs
Shana
Shana, I hope this finds you feeling better now. I'm trying to catch up on
all my old e-mails. We will always be here when you are confined for periods
of time. Just don't give up! Keep fighting with the doctors and trying to
find the doctors who understand the disease and are knowledgable about how to
treat all the many variations that are out there with this disease. If
nothing else vent your frustration anytime with those of us who definitely
understand how bad the medical field can be in dealing with this.
Sandy

Dear Linda

Thanks for your reply to my post. I am from Seattle, Wa. I was born here, but have lived all over the world.

I am 40 years old and am newly married to a beautiful woman named Lori Ann. We got married last June and I am very happy, except that I have been sick most of the time. My wife is vary understanding and has been a great help. I feel real bad because I have a hard time getting out and doing things because I always feel so rotten. I have been on disability for 4 years now and will be attending Seattle Pacific University starting this summer.

God has blessed me with so much in my life, and I try to keep a positive outlook on life, but it is hard sometimes. I hope you have a good weekend, and I will be praying for you.

"Walking in the Grace and Love of Jesus Christ my Lord."
Michael Karns

In a message dated 12/17/2000 9:11:41 AM Central Standard Time,
KarynWms@... writes:
<< My UP time is so limited, that I can barely get
my regular stuff done and still have the energy to spend time with all of
you
here. My aim lately is to achieve some semblance of a balanced and
harmonious
lifestyle. I find that within the posts of this Network. Thanks so much
being
here.
Hugs, Karyn
Karyn, it seems like forever since I heard from you. Hope all is going well
for you right now!!! It's so good to be back reading and posting. Thanks
for all you have done for so many.
Sandy

Overall Becky, I think I am doing very well considering. Since I finished my
masters program I did physically and emotionally crash for awhile. I guess
this is why I didn't push to get my monitor fixed very quickly. Just getting
back and forth to work and trying to be more available to my family took all
my reserved energy. I did think I'd have more energy by now, however, I am
not complaining. I just feel very blessed and lucky right now to tell you
the truth. I've been able to stay out of the hospital for awhile now and
overall discomfort from the pain and nausea has at least been managable. I
am at least able to stay home in bed when need be now too. I think I'm
finally learning how to take care of myself better now too.
How have you been doing? I really had missed the group as I feel like I got
an enormous amount of information and support from everyone. I think this
group really helped me more than any medical care I ever received. I've
learned more about the procedures and medications often used with this
disease more from everyone here than any explanation from any doctor.
Sandy

Christine, I really consider myself really lucky at this time and I am
trying to stay focused trying to keep the quality of my life the best it can
be under the circumstances. I am determined that I am going to deal with
this terrible disease the best way that I can. I know that I will have other
attacks that will take me down again and I am trying to prepare myself for
this so that when it happens I can possibly keep from becoming really
depressed. I've been researching how our mental health affects our physical
health when we have chronic illnesses. Remaining positive and preparing
yourself by learning all you can about the illness, how the illness may or
does progress, the available treatments, new research, and so forth appears
to be important. I just want whatever life I have to be quality life so that
this is what my family remembers the most. If all I can give them is a
positive way to view life then perhaps I've left them with something other
than dispair.
Christine, I am so glad you are able to get back to work like you want or
need to. What kind of work do you do? When I was at my worst I was off for
9 weeks straight and then it took me 3 weeks at part time to get back to
work. Just don't push yourself too hard and remember to try to take care of
yourself at all costs. This is hard to do when you have a family to try to
take care of as well. It has been a hard road for me and my family to learn
that I have to pace myself and when I can't do something at a certain time
then I'll just have to get to it when I am up to it. It has taken quite some
time to learn how to set my priorities a different way.
I too have a very stressful career. Right now I am a supervisor for Child
Protective Services. My career choice is as a social worker and all I've
done for the past 14 yrs. is Child Protective Services. I worked in drug and
alcohol abuse prior to that and even at a children's emergency shelter for a
year. In order to survive any kind of stressful job depends on how we deal
with those stresses. I use a variety of stress relief techniques which also
includes maintaining a positive outlook on life. I do try to find the
positive in even really bad situations. Sometimes this drives people crazy
though. I can't change the really bad situations, but I can change how I
think and feel about them. I know it sounds kind of crazy when dealing with
and seeing such terrible things. For me it is my survival. I really like
helping others and if my experiences can help someone then this is great. I
also feel that there is the possibility I can learn something from anyone
that I come in contact with.
I have 3 children, 2 girls and 1 boy, ages 15, 18, and 20. However, my 18
yr. old daughter and 20 yr. old son have significant others and still live at
home while they attend college. The significant others tend to spend about
90% of their off time at our house as well. I really don't mind because I am
really happy with the choices my children made. No I am not saying I am
ready for them to marry, but I do consider myself very blessed. All my
children are wonderful, even my 15 yr. old daughter that has really had some
problems of her own. Do you have children as well?
I do think that I have as good medical care as one can get now with the
HMO's. I am grateful though that I at least do have coverage with so many
uninsured people in our country. This disease would have destroyed us a long
time ago if I didn't have insurance.
I live in Arlington, TX. Where do you live Christine?
Sandy

lady.....
Dear Carole, How are you doing this weekend?
I promised to be quiet this weekend, but wanted to thank you. I sure
don't feel very strong these days! And I'm really grumpy today. Two
of my girls already ask me "why are you so grumpy?" I just told them
that I wasn't feeling too good. But the truth is I'm feeling really,
really bad. I'm having severe pains, nausea, vomiting, diahrrea, and
a fever. I hate to go to the ER because Dr. Lehman & my local GI doc
has told me my enzymes have burnt themselves out, so my levels are
always normal. My liver tests come back high, but not my pancreas.
So, I'm very hard to get along with today. The kids are staying
clear of me, and my husband has left for the day, his way of escape
from me and this awful illness.
I'm heading back to bed. I doubt if I'll get back on the puter again
this weekend. Its kinda warm out today (for Jan. in Ohio) so the
twins want to go out and ride their new scooters santa brought them.
So much for the bed idea! I guess the couch will have to do for now.
Thanks again.
Lots of Hugs, Linda (from Ohio)

In a message dated 1/12/01 11:53:05 PM Eastern Standard Time,
liamhoha20@... writes:

So, there it is. My story. Sorry it is so long. I hope you don't
get bored with it.

Hi Linda,
After reading the stories of so many members in this group, I keep thinking
I've heard everything but after reading yours, I'm amazed at what you've been
through and lived through it! You have to be one very strong lady! I'm glad
you shared your story with us and wish for you brighter days in the
future....you deserve it! I will keep you in my daily thoughts and prayers.
Hugs & Prayers
Carole

Elizabeth,
My doc's answer goes as follows' Well, it may not be very scientific,
but maybe it will just go away. Or how bout this one-well, we will
just hope for the best............................I am sure there are
lots of antecdotes out there. If we couldn't laugh about them, we
would surely cry.
Be well all,
Christine

--- In pancreatitis@egroups.com, loggiekw@a... wrote:
Dear Shirley,
Since I am in the grieving mode, consider this. Whenever something
has been a part of our lives for a long time, whether positive or
negative, and suddenly it is gone, it must be grieved over. I mean,
it is the death of the life you knew. Just a thought.
Be well,
Christine

Rich,
Thank you so much for you kind words and the peep talk you are wonderful
I know I can do this, with the love and support from my family and this group
I know it will be fine this time I have got my mind in a different frame this
time and I know I will be all right I will use the pills as a back up but I
think I have changed the frame of mind which I do believe will help also I
have faith in the doctor and in God that everything will be fine..
You are so sweet and I thank you for that. The support I get from the
group is wonderful and so appreciated.. Hope all is well with you .. you
didn't tell me how you were?
Wishing you all a
pain free day Anna from Michigan

Anna, youare not "chicken" you are concerned and understandibly fretfull.
Please try to calm down and relax, the Zanaz will help but believe me, it is
only an aid, believe
in your heart and trust in your Dr. and all will be well. I know this sounds
like garbage
but confidence in your mind and heart is more important than anything in a
hospital.
Believe in all your friends in the group, believe we love and care about you
(although
I have never met anyone in the group). I feel closer to the people here than
most
everyone I know. We share a common bond.
Let go and let God.
Aloha,Rich

In a message dated 1/12/01 11:02:57 PM Pacific Standard Time,
shirlf3542@... writes:
<< Dear Carmen, that is beautiful. I know that that came from the heart. I
have done that so many times. I lay in bed and plead and talk to our Lord
so
many times. Thank you, Love, Shirley
Shirley: I talked a little to our doc about your surgery. I think T is at
that point but I wonder if medicare will cover it ? What was the name of the
hospital ? our doc said he would write him a letter. I will be asking you
more questions in the future if its OK. Tam is back in the hospital, I
brought her in today, she needs to be there. She is down 31 pnds from not
holding food down the last 3 weeks. I hope you keep getting stronger every
day. I printed everthing you said about the surgery so far for tam to read.
Thank you .
Your friends Tam & Steve

In a message dated 1/13/01 1:02:55 AM Eastern Standard Time,
LMNOCDBDIS@... writes:

Dear Tammy, I too have felt your exact feelings. To see nothing beyond the
pain and suffering will overwhelm you. It will make you think of such
depressing thoughts and actions. To feel lost and alone and the thought of
simply existing like this would be to pray to God to either take this
illness
from my body or take me now from this pain.
I didn't want to die, but I would pray to die instead of continueing to
live
like this.
When I would lie in bed with such agony and pain I would talk out loud to
my
God. I would ask him to help me and give me the strength that I needed to
overcome this moment of hell. I would plead to please take this pain from
me
and this awful feeling of something words cannot explain. I questioned my
God ,Why? Why must I suffer? What must I learn from this awfulness inside
me?
Show me mercy dear lord and help me to overcome this illness and all that
it
brings with it. All I see is darkness and I pray to see the light.
Continue to believe and talk to God out loud, where you can hear yourself
as
you speak in an anguished voice. Hear yourself and your thoughts, tell
yourself that this too shall pass. Heal yourself from your heart and tell
yourself that the love you have for yourself is worth fighting for and you
will win no matter what it takes. Try to focus on something else instead
of
the pain, find a way to meditate at least to try and cut off the edge of
the
pain. I will pray for you and we will not abandon you when you need us the
most. I know that it seems that there is no way out, but there is because I
remember being in your place and now I am a little better where I can
function at least. Keep the Faith.
A Friend Carmen

Dear Carmen, that is beautiful. I know that that came from the heart. I
have done that so many times. I lay in bed and plead and talk to our Lord so
many times. Thank you, Love, Shirley

Hi Michael,
I just want to say welcome to the group I have been here since Aug. And I
am very thankful for the group you are right it is a blessing to have the
group here. I am a 36 year old that was told in May that I have chronic
pancreatis, which my brother also has and has had for 20 years so I knew
something's about it but the group has taught far more then the doctors. I
too haven't had the things that a lot of them but it is still taking over my
life, I have had 5 ERCP's 3 CT scans 3 ultra sounds 4 scopes x-rays and 4
hospital stays since May, and now they are taking my gallbladder out Wed and
tell me this is my main problem so hopefully they are right.. I am glad you
found the group and get what you need from it, it is sad that there are so
many of us but good that we find each other... Hope you are feeling better...
Wishing you all a
pain free day Anna from Michigan

Dear Tammy, I too have felt your exact feelings. To see nothing beyond the
pain and suffering will overwhelm you. It will make you think of such
depressing thoughts and actions. To feel lost and alone and the thought of
simply existing like this would be to pray to God to either take this illness
from my body or take me now from this pain.
I didn't want to die, but I would pray to die instead of continueing to live
like this.
When I would lie in bed with such agony and pain I would talk out loud to my
God. I would ask him to help me and give me the strength that I needed to
overcome this moment of hell. I would plead to please take this pain from me
and this awful feeling of something words cannot explain. I questioned my
God ,Why? Why must I suffer? What must I learn from this awfulness inside me?
Show me mercy dear lord and help me to overcome this illness and all that it
brings with it. All I see is darkness and I pray to see the light.
Continue to believe and talk to God out loud, where you can hear yourself as
you speak in an anguished voice. Hear yourself and your thoughts, tell
yourself that this too shall pass. Heal yourself from your heart and tell
yourself that the love you have for yourself is worth fighting for and you
will win no matter what it takes. Try to focus on something else instead of
the pain, find a way to meditate at least to try and cut off the edge of the
pain. I will pray for you and we will not abandon you when you need us the
most. I know that it seems that there is no way out, but there is because I
remember being in your place and now I am a little better where I can
function at least. Keep the Faith.
A Friend Carmen

Hi Michael, Welcome, and so sorry you have to put up with this awful
illness. I'm sorry you have been feeling bad for the last couple
weeks. Just hang in there. I know what you are going through. I
don't know whats wrong with me mentally hear lately.
Well, gotta go, I promise to keep quiet for the rest of the
weekend.....I'll never make it!!
Hang in there, and please continue to post, and its nice meeting you.
Lots of hugs, Linda (from Ohio)
P.S. Where are you from? Just wondering...........

Henry, thanks for your caring words. It does always makes me feel
better to let things out. Are you sure your up to this? It may take
you awhile..............
Heres my story, I'm 41 and at the age of 30 I had twin girls. You
see, I'm only 5 feet tall (Amy, my 13 y/o will dispute that, only
because she is taller than me now and tells me I'm actually shorter).
After their birth I had alot of belly problems. I had a hysterectomy
when they were 3 months old, my thyroid went bad at 5 months, I broke
my ankle & had to have surgury at 6 months (nothing to do with my
belly, but just wanted to let you see everything that went wrong.)
On their 1st birthday my white count was sky-high, so I had my
appendix removed, which was normal. At 1 1/2 they took my gall-
bladder, no stones, pretty much normal. And right before their 3rd
birthday my docs here sent me to Ohio State. 5 days before they
turned 3 I had my 2nd ERCP done, after "poking around about 7 mins" I
had a serious attack of pancreatitis. Had to be given a transfusion,
was bleeding inside my pancreas, was put on TPN, and developed a
pseud-cyst in the tail of my pancreas. Didn't leave the hospital for
6 weeks. And then for the next 2 years was in the hospital at Ohio
State at least once a month. I was having those terribly-awful nerve
blocks, celaix plexas (wow, really butchered those words, but you get
the picture) and my doc came from IU and called Dr. Lehman on a
Wednesday, and Dr. Lehman saw me on that same Friday. At that time
he wanted me to try the sandostatin injections. I did, didn't help.
That was Aug. 95 - in Oct. 95, I was scared to death, but I let Dr.
Lehman do another ERCP, his 1st on me, he did the cutting of both
ducts, leaving stents and I had a small flair-up and was left at IU
for 4 days, alone while my family was in Ohio. I did fairly well for
the next 5 years, had a few pretty severe attacks, but was only
hospitalized 3 times. Then, last December, it all fell apart.
Started having severe flair-ups, was hospitalized twice in Dec. 99,
went back to IU, and last Jan. Dr. Lehman did another ERCP, cutting
the ducts as far as he could, left in stents. I wasn't so lucky this
time, I have been doing awful. Last March, I started TPN at home,
and after just 3 weeks the groshong got infected, I had 2 blood
infections, and the infection settled outside my right lung, and they
had to do a chest tube - IN THE MIDDLE OF MY BACK!- And I also had my
first bout of pnemonia. I went in with a 104.6 fever, it didn't
break for 2 l/2 weeks. They had to give me 2 units of blood, but they
think it was because of the pouch of fluid outside my lung. I was
sent home after 3 weeks of IV antibiotics, they did move the groshong
from the right to the left side of my chest, and the day before they
sent me home I had a PICC line put in - After, 2 days, 6 hours and 2
radiologist later, they had a hard time getting it in. I did 3 more
weeks of IV antibiotics at home, then 6 more weeks of oral
antibiotics. I literally lost alot of my hair over the summer!! I
still was doing very bad, so in Sept. they put in another PICC line
and I was on TPN for 6 1/2 weeks. I gained over 20 lbs!! It was
stopped the week before Thanksgiving, and then two weeks before
Christmas I was back in the hospital for 8 days with a 104.3 fever,
pnemonia in my left lung, the base of my right lung is now collapsed
because the infection was so severe in it. Now, I have never smoked
in my life, and the lung specialist came in, and the first thing he
ask me was if I had been smoking in there (meaning the hospital
room). I was so mad!! And I also get really mad when I'm ask if I
am a heavy drinker. I have been known to drink, back in the day when
I was playing softball, but they was over 14 years ago, before I had
my 1st daughter. This is really sad, but now when I go to the ER
here in my mid-size home town, most of the doctors know me. I guess
thats a good thing? I'm not sure.
So, there it is. My story. Sorry it is so long. I hope you don't
get bored with it. And the thing that makes me the saddest about
this whole ordeal, I have been sick for the twins entire lives. And
I missed their 1st & 3rd birthdays. Of course, now they are 11,and
don't remember, but I sure do.
Henry, thanks for being my friend, and reading my story. It does
feel good to let it all out every once in awhile. And I promise to
keep quiet, at least the rest of the weekend, lol.
Lots of hugs, Linda (from Ohio)

My name is michael Karns, and I have been reading these post for a while now. It has helped me so much to know that I am not alone with this nasty disease. I have alot of respect for all of you on this loop, and how you have been helping each other in times of need. I have not been feeling very good for the last two weeks or so, and reading your letters has helped me to not feel sorry for myself.

I have had chronice Pancreatits since 1989, and I am trying to learn how to live with the pain and not let it rule my life. I do not have it as bad as some of you do and I try to be thankful for that.

I just want to say thank you and If I can be of any help just let me know. I want to give back a little of what I have recieved.

By The Grace and Love of God,

Michael

Dear Linda,
I read and appreciated your last two posts. As way oif introduction,
I'm Henry from the group and I've been here since last September. I'm 38,
and have had C. Panc, since I was 29. Mine was caused by pancreas divism.
Not alcholhol related, another assumption that irritates me about people's
reactions, and judgements to our disease. What was yours caused by if you
don't mind my asking? No judging here, it's bad however you got it.
I've had 27 ERCPs, gall bladder removal, Pancreatic stone removals, A
Puestow Panc. surgery and The Whipple this past November. I just got off of
TPN, after 13 months, and now help keep my weight up with the J-tube in my
belly when I can't eat, or am vomiting. I have pancreatitis caused insulin
dependent diabetes, type 2. This is the first time I've posted to you, so
WELCOME!!! Linda. Sorry that you have the Chronic Pancreatitis, but so glad
that you found this wonderful, growing, very friendly support group. I think
it's great that you can sit down at the computer and unload those nagging
troubles here. That's why this group is here to suport folks trying to get
through life with this disabling, often baffling, unpredictable disease.
Please don't feel that you are making people tired by unloading here. It's
good that you are getting your important feelings out. C. Panc., can be as
big a battle mentally as physically. I belong to a support group at my
hospital, and we have about 15 regular members, and others who attend
occasionally. We meet once every three months for three hours. People can
come as inpatients, but it's usually as out patients, and it's free. Anyway
I've heard a lot of folks describing their struggles with the disease and
like somebody posted here a while back it can afflict people as an
"invisible illness." In other words unlike other types of injuries, and
illnesses, pancreatic patients can often appear relatively healthy when they
are out in public, so people will say things like you don't look sick,
what's wrong with you, ect. They can't feel our pain, and sometimes that's
why i think pancreas patients can get short thrift waiting to be seen say
like in the E.R. when compared to someone with an open wound or a broken
limb, even if we are really more ill than they are. One night I went in
there in sever pain with all of the classic accute pancreas attack symptoms,
and the triage let a teenage girl with a sprained ankle in ahead of me even
though I had been there first and was writhing in pain. She cried, so I
guess she looked worse than I did? Who knows, but the point is that it's
good to talk here where people know what you are really going through
because they've been through it all too.
I thought that was funny about the hickey remark, because after my last
surgery, after they took out the triple lum central line I got that comment
as well as a lot of corney dracula jokes. Gosh I hope that punumonia clears
up soon! That can be so serious! I had a bought of it in the hospital a few
years ago that put me in intensive care for a while, it's no joke. Take good
care of yourself, and tell that sister to hire a nice babysitter, you need
to rest all that you can! That's perfectly resonable in my opinion. Well
anyway, I'm glad that you are here, and there are plenty of shoulders to cry
on when you need them Linda. Once again I'm glad that your here, and keep
posting friend!
Your New Pancreas Pal,
Henry

Hi Liz. Its nice to see you again!! How has things been going? So,
you had your gall bladder out huh? Sorry I missed
that...........been away for awhile.
Ya know, your story about your surgeon, I just sit here shaking my
head, uh, uh, uh......these guys just never cease to amaze me, but
not surprising at all.
Gotta go, my oldest, Amy, is babysitting and I'm waiting up for her.
I'm hoping she will get in soon. Had to take my vicodin & phenergan,
and its starting to hit me.
Take care, and Thanks for sharing
Lots of Hugs, Linda (from Ohio)

Hi everyone...
I just had to share a little bit of my surgeons words of wisdom that he
gave me the other day. I went for my last follow up for the gall bladder
removal. I told him how I was still having pain and he had me describe it and
he asked me all these questions...then he said...(now hold on to your hats
because your gonna love this!!!)
"Maybe it will just go away..." Oh my gosh, I sit here laughing because what
is my alternative?? What are these doctors thinking when they say things like
this? I tell him I've had this pain for almost 2 years...and fill him in on
the story and he tells me maybe it will just go away????
Thanks for 'listening',
Elizabeth

Hi everyone. I hope you are all well this eveing.
Just wanted to tell everyone thanks for the kind words. I'm not
feeling much better today. I woke up very nauseas for some reason,
went back to bed with a big bowl after I took the girls to school,
and slept until after 1:00. I'm running a fever tonight, but don't
know if it is my pancreas or the pnemonia. I really hate these
confusing signals my body is giving me. And then on top of
everything else, where the doctor put the central line in my neck
when I was in the hospital last month, everyone I see ask me if it is
a "hicky". I'm so embarrassed. And it really embarrass my 13 year
old. Ya see, my husband works 3rd shift, and after 21 years of
marriage and these illness, come on now!! lol I have had about a
thousand central lines, groshong's, PICC lines, but never in my
neck. This is the first time a radiologist put one in by ultasound.
I ask for my surgeon to do it, but he said he has done so many on me,
it would be safer if they did it that way.
Here I go again, I'm so sorry. You all are going to be sick and
tired of me crying and whining on your shoulders all the time.
Please forgive me. And I'll try to keep quite over the weekend. My
girls are out of school for a 3 day weekend, so hard telling when
I'll ever get back on again anyways. lol
Lots of Hugs, Linda (from Ohio)
P.S. Again, Thanks Alot.......................

Becky,
I am sure you have read my story by now I am sorry I didn't let you
all know sooner, but I am a little embarrassed too.. but I will do it
this time I have to I don't know if the surgeon will stick with me
another time...lol you know that saying 3 strikes and you are
out...lol How are you doing? I hope all is well you are such a
sweetheart for thinking of me.. thanks
your pancreatis pal Anna from Michigan

Hello everyone!
I just have a question i have and appointment next
week the 18th at the pain clinic in iowa. They are
going to do a celiac plexic block has anyone had one
of these done? and if so what does it entail? I am
very afraid no one has explained to me how they do it
or anything. I am very nervous.
Tull- Thanks for the advice on the miralax my doc
perscribed it and apologized he said he has another
patient on ms contin and they also use it i have no
had to use it yet but when i do i will tell you how it
works for me.
I will be gone all next week but i will have my
husband send a message and tell you all how things
went.
Keep me in your prayers on that day.
Thanks,
Crystal

In a message dated 1/11/01 11:54:46 PM Central Standard Time,
colind@... writes:

. They are not sure whats wrong with me . But I
have all the symptoms of pancreatitis along with the pain. But no
test or procedure will fix it

they can find nothing with me either...so a lot of us are in the same boat.
glad you at least have your pets during the day. i have a dog that i spend a
lot of time with. luckily i can call my mom who lives about 10 minutes away
if i get desperate to go somewhere or for company. although my new
daughter-in-law is living with us - she stays pretty much to herself
throughout the day. i'm not sure if she thinks she will bother me or what,
but i'll ask how she is doing and "ok" is all i get out of her.
wishes for tolerable days. debbie s. (ark)

Hi Linda,
I am so sorry about where you are right now. But take heart, you
won't stay there. The human spirit overcomes, and you will not be
overwhelmed with this emotion. The biggest thing to remember is that
emotions change-oh, how they change-and you will be better soon.
I am not by any means making light of where you are emotionally.
This disease sucks. But the alternative-laying down and giving up-I
know already, is not an option for you. I know you will be able to
handle things and come through. Maybe not with flying colors. Maybe
not even joyfully. But you see enough of the blessings you have to
not let it get the best of you.
So hold on tight. Better days are around the bend. Just remember,
today you just need to be still. you don't need to do anything, you
don't need to prove anything. And that is big, big stuff here in
America where we are so goal oriented.
I am here if you need to talk. My ex as well as my father were
alcoholics, so I know that aspect very well. Take care my new friend.
Christine

In a message dated 1/12/01 4:28:33 PM Eastern Standard Time, feuchts@...
writes:

Hi Shirley! It is so good to hear that you are doing so well! I've
been thinking about you and praying for you. Unfortunately, the card
I sent to you in Mn. came back to me. Bummer! May you continue to
have better days. I am thrilled to hear you ate a donut! Maybe next
time you can take a bite for me too!ha No you just enjoy.
Whatever happened with your arm that was so inflamed before you

left. Is it better?

The next time I eat a donut it will be for you. Ha My arm is no better only
calmed down since I am not using tpn. Both arms are painful now. I am
concerned that when the doctor takes the port out there might be a clot
attached to the port and it might break off and go where it shouldn' t go. I
am going to express this to the doctor who is going to remove the port and
try to have the dye shot in my veins in my chest and neck before he removes
it. Does anyone know anything about that type of x-ray? Is it very harmful?
Thanks, Shirley

Hi Anna,

How are you? Did your surgery go well? Am thinking of you and wondering how you are.....
Becky

Hi Shirley! It is so good to hear that you are doing so well! I've
been thinking about you and praying for you. Unfortunately, the card
I sent to you in Mn. came back to me. Bummer! May you continue to
have better days. I am thrilled to hear you ate a donut! Maybe next
time you can take a bite for me too!ha No you just enjoy.
Whatever happened with your arm that was so inflamed before you
left. Is it better?
It's good to have you back. Don't push yourself too hard! Take
care! love, dawn.

Thanks Shirley for sharing your story you are a very strong person and I
thank God all as turned out so well for you. You deserve to be cured with all
you have been through and as all of us have. I am so happy for you
Wishing you all a
pain free day Anna from Michigan

Linda ,
This is the place to do it if you need to it is all feelings we all have,
I hope that it helped to get it out.. I am hear to listen when ever you need
it ...
Wishing you all a
pain free day Anna from Michigan

Dear Linda,
Hey! My name is Henry and I've been on this board since last September.
I read your lament and I can sympathise. Many people facing a chronic
disease feel alternately up and down emotionally as they go through the
daily grind of life with Chronic Pancreatitis. I've had my highs and lows
myself. I've had this for eight and a half years but sometimes it seems so
much longer. Like you I try to keep a chin up attitude but sometimes when
I'm going through an unusually long bad spell like after a big surgery, or
long weeks of intractable pain I can get to feeling down also. I try to
remember that the bad times don't last forever, and pray for a better time.
I will keep you in my prayers that you may feel better physically and
emotionally soon. I'm sorry that you have to suffer with this depression on
top of your C. Panc. and I wish you the best!
Your Pancreatitis Friend,
Henry

Hi Friends, I know that some of you are interested in hearing my surgery
experience so here goes.
I was scheduled for surgery Dec. 8 at 7:00AM. My husband and daughter and I
had to be at the hospital at 5:30 in the morn. My husband's name is Jim and
my daughter's name is Michelle.
We were told that I would be in surgery for 10 hours. Part of that time for
the actual surgery and part of that time waiting for the islet to be
separated from the pancreas so they could be injected into the portal vein of
the liver.
After Dr. Sutherland finished the surgery he came to the waiting room and
told Jim and Michelle that I did just fine and I would be in my room in two
hours. They were so happy.
Two hours past then three and that's when Michelle told Jim that something
was wrong. He agreed and they went to the recovery room. They found me
there and didn't recognize me. I had gained so much weight. I was bleeding
out and the recovery room nurses and doctor were putting blood and ringers
into my body. I had gone from 146 pounds to over 170 pounds.
My husband told the recovery room doctor to get my surgeon back there right
away. The doctor complied and my surgeon Dr. Sutherland and a resident
doctor who assisted him during the surgery came back also. They were both in
their car and on there way home.
They took me back to the operating room and opened me up again and found that
I was bleeding from everywhere. They worked on me another four hours and
then sent me to the recovery room again.
After some time there I was sent to ICU and stayed there for four days. Then
finally I was given my own room.
Considering what I went thru I bounced back pretty fast. For me the nausea
was the worse. Everything changes when they remove the panc, spleen. main
vein in the spleen, billery tree, duodeum, and two other main veins. My
digestive system had to learn to work with the new plumbing.
The reason for the bleed out was the fault of the doctor here in Cin. A
month before surgery while on tpn I was having lots of pain and swelling in
my left arm due to a port in my chest. It was suspected by the doctor who is
a surgeon here in Cin that I might have a clot. So he put me on Coumadin and
heparin for a month up to the surgery date. My blood was so thin. If I only
knew what I know now I would have never let him put me on that drug. I
questioned him about it and he sort of made fun of me and said it would cause
no harm at all. He said it would not effect the surgery.
Dr. Harring, the islet doctor in MIN was able to get two hundred and
seventeen thousand islets from my pancreas. That is not a whole lot but I am
so please that they were able to get that many since I had been sick so long.
My islets were 40% below par. They ranged in healthy from 1-10, 8.5. Most
of the other people I know were able to get in the three hundred thousands.
Whitney a ten year old little girl was only able to get 100,000 islets and
she is not diabetic either and can eat anything she wants.
I am now able to eat what I want. I haven't had any nausea for three days.
I don't have that terrible pain that I have been carrying around in me for 15
years. I am out of the wheel chair and walking better than I have in years.
MY BLOOD SURGARS ARE GREAT. I would have the surgery again. One problem I
am having is emotional. I mentally have one foot in the chronic panc. world
and one in the no pancreatitis world. I just can't seem to accept it that I
don't have pancreatitis anymore. I have been sick so long and had worry fear
and dread for so long that it is hard to give up. When I go to bed at night
I have all of the scary thoughts that I used to have and I end up not being
able to sleep and sometimes start to cry. I shouldn't feel that way. I know
my body is still recovering and I am still adjusting to the shock my body
took by having surgery so I know that this will pass. As soon as I am well
enough to go out side or to the store I will realize then that this is OK it
is the new me. I am not an invalid anymore. I have been practically stuck
in the house for so many years that I can't see anything else. My daughter
says that it is obvious that I still have not accepted that I do not have
pancreatitis anymore and have not completely accepted that I am cured. I
have to pinch myself to really believe it.
That is my story. I hope each and every one of you will get well from this
horrid disease. I love you all and want to stay with you. I hope you will
allow me to do that. Thank you for listening to my story. Love, Shirley

I saw the dr yesterday and he decided to run amylase and lipase again which
were elevated. He also told me that my biopsy for celiac disease was negative
even thought one of the 3 antibodies for celiac was positive. So I have to
run those antibodies again too.
But my trypsin level was normal and he said that was good.
So I have elevated amylase and lipase and normal trypsin and a normal
abdominal CAT scan w/contrast. He also wants me to have a gall bladder
ultrasound. I just do not think I have gall bladder problems since no pain or
vomiting. He said no plans for an ERCP. I asked about pancreas function tests
and he said they are complicated. My chief symptom is bowel frequency, not
really diarrhea and all intestinal problems ruled out but some mild pains in
the lower and mid right side. I think it is the pancreas but he cannot
confirm. I wonder if the gall bladder could cause pancreas problems but no
stones showed on the CAT.
I appreciate if anyone can give me any information based on what I have
written.
thanks and i hope everyone is having a good day.

It's good to also read the personal replies, I guarantee that at some point
you will receive some new information that will help you.
Carmen

Debs, I just got back (yesterday), am so glad you are doing well. Thank you
for the Dr's names down there.. thank the good Lord I didn't require their
services. NZ is
just as beautifull as I remembered it and to show it off to my
children,nieces and nephews (all first trip there) was great. I hope you
continue do do well and enjoy
the long summer nights.Aloha
Tammy, God bless you. You are in my prayers. Please try to look for the
positive
in life - believe me I know how difficult it can be at times. Feel free to
talk at any time..If I can be of any help 24/7..no problem. Keep strong girl,
you are needed, wanted and loved.
Aloha, Rich

Dear Christine,
I am so sorry for your loss. I know that your mom will be greatly missed.
There are never any right words to say at a time like this. I want you to
know that even though your mom is gone to a better place with no more pain or
suffering of any kind, you must remember all the goods things and the good
times, and most of all I hope that you will come to a place where you know
that your mom is with you in spirit, so take all the things that your mom has
taught you through out the years and live your life to the fullest until you
and your mom meet again. I pray that in this time of sorrow that God be with
you and show you the light to a better place.
Carmen

Hiya Christine thanks for your reply. Chooks are what we refer to as
chickens in NZ . Just a short name is all. Right now they are
feasting on cabbage and lettuce out of my garden .
I find it soemtimes rather lonely being at home all day. At least the
animals keep me company. Its such a difference from working in an
office with 600 people.
Thing is at hoem you cant even choose to ignore soemone if you want
cos there s noone around lol. My persian cats are kinda kewl tho.
Torley is a red shaded shell cameo color and 6 kilos and amber is
little with black fur and amber eyes .
At present I need to get the motivation up to write an ACC
application which is to prove medical mishap on behalf of my initial
surgeon that removed my gallbladder as it is the only way I will
hopefully get some money.
The nerve cutting didnt work altho they were 70 percent sure it would.
It will work for most. They are not sure whats wrong with me . But I
have all the symptoms of pancreatitis along with the pain. But no
test or procedure will fix it
talk to you soon
Debs

Good Evening all......How is everything going for you all?
Christine's poem couldn't have come at a better time. I have been
feeling really, really sorry for myself lately. I'm usually not like
this, I just don't understand whats up with me. For years my
attitude towards this illness has been, "I'm going to win this
battle, no matter what!" But lately it seems like all I want to do
is lay around and feel sorry for myself. I don't know if it is
because I'm fighting the pancreatitis, and now pnemonia on top of
that. I don't know if its because now I'm in alot more pain, in the
lung area and the pancreas area. I hate this illness, I hate this
pain, I hate the nausea, vomiting and diharrea (sp?). Whatever, and
I mean whatever, I eat, within 10 to 15 mins. I'm running to the
bathroom. I hate the race to the potty!! I hate my marriage, my
husband in an alcholic (sp?) and he isn't any support at all. I hate
trying to put up a good front for my kids, they actually don't
realize how sick I am. I hate my mom telling me everyday to "shake
this sickness you think you have". I hate my sister calling me all
the time, when she KNOWS I'm so sick, to watch my nephew for her
while she spends time with her new boyfriend..now don't get me wrong,
I love the little guy to death, but if it weren't for my girls, I
really couldn't handle the two year old by myself. I just hate every
single bit of this illness, and I'm getting tired of fighting. I'm
just tired, and I hate being so tired all the time. What happens if
a person just stops fighting and gives up? I'm almost to that point.
The only reason I'm hanging on is because I just can't stand the
thought of my girls being left by themselves with a father that
drinks. Whatever happened to my good outlook towards this illness?
Whatever happened to my fight? Why am I feeling this way?
I'm so sorry about this crying on your shoulders tonight. It seems
like this is the only place I can let my true feelings go about how
I'm feeling with this illness. I sure don't have any kind of support
here at home with my family!!
Please forgive me for going on and on. Honestly, I'm usually not
like this, I just can't figure out whats going on right now.
Lots of Hugs, Linda (from Ohio)

In a message dated 1/11/01 5:01:44 PM Central Standard Time,
sunflower6668@... writes:

And I need to know that sometimes I just don't have to DO
anything!
Be well all,
Christine

that was good christine. sometimes that is the hard part - not trying to do
something on our own. debbie s. (ark)

Dear Debs,
Welcome to this friendly Pancreatitis support group. Sorry that you have
this terrible disease, but gad that you found us. There are lot's of nice
caring people here who will welcome you, and lend you moral support in
dealing with living with this.
Your New Pancreas Friend,
Henry

In a message dated 1/11/01 6:01:59 PM Eastern Standard Time,
sunflower6668@... writes:

Now I want to share it with each of you. For this is exactly where
we are.
Dear child, God does not say today, "be strong,"
He knows your strength is spent: He knows how long
The road has been, how weary you have grown
for He who walked the earthly roads alone,
each bogging lowland and each rugged hill
can understand, and so He says, "be still,
and know that I am God." The hour is late
and you must rest awhile, and you must wait
until life's empty reservoirs fill up
As slow rain fills an empty upturned cup,
Hold up your cup, dear child, for God to fill;
He only asks today that you be still
(Unknown)

Hi Christine,
Thanks for sharing that beautiful poem with all of us. Have you ever read
any poems by Helen Steiner Rice? I have three of her books.
How did things go at work today? Hope you were able to eat something without
the pain and nausea!
Hugs & Prayers
Carole

Hi all,
A friend of mine shared this poem with me when I got home from Omaha.
Now I want to share it with each of you. For this is exactly where
we are.
Dear child, God does not say today, "be strong,"
He knows your strength is spent: He knows how long
The road has been, how weary you have grown
for He who walked the earthly roads alone,
each bogging lowland and each rugged hill
can understand, and so He says, "be still,
and know that I am God." The hour is late
and you must rest awhile, and you must wait
until life's empty reservoirs fill up
As slow rain fills an empty upturned cup,
Hold up your cup, dear child, for God to fill;
He only asks today that you be still
(Unknown)
It fit me when I whined to her that I could not deal with anymore
between this disease and my mother's death. And I hope it fits you
too. I know I always define this disease as how much I am able to
DO. And I need to know that sometimes I just don't have to DO
anything!
Be well all,
Christine

Hi Debs,
Welcome! It is so hard feeling alone in this thing. It's bad enough
dealing with the disease without feeling all alone in the process.
So, I am glad you are here. Why didn't that procedure work for you?
It sounds like the answer to so many problems.
And by the way, what is a chook? :-)
Talk to you soon,
Christine

Hi Mike,
I think you are absolutely right. We need to encourage each other no
matter where we are. It's wonderful when someone has no pain or can
work or can eat. But it certainly does NOT mean that they have less
of a right to be here, or have less to contribute. Thanks for your
posts Mike. They are always compassionate and thought provoking.
Christine

In a message dated 1/10/01 9:53:56 PM Central Standard Time,
jang2@... writes:

Whoo-eee, girl!! You sound like the new, improved, undefeated
champion Shirley! Its great to hear how quickly you are making
progress. If you hit a bad stretch, remember how far you've come. I
hope the rest of the way will be smooth skating for you.
jang

ditto on that shirley! sounds like you are taking giant steps toward a full
recovery! keep us up to date on what is going on. debbie s. (ark)

My experience with this disease has (so far) been one acute attack,
with the subsequent removal of my gall bladder. The stones from the
gall bladder had blocked the port and backed everything up,
initiating the pancreatitis.
I have been most fortunate. I am feeling better than I have for two
months at this time, and my greatest challenge to date (since a
relatively painless and simple surgery) was pizza night at work. Our
facility provides our meals, since shifts are twelve hours and we are
not able to leave for meals. Institutional meals are not necessarily
pancreas friendly. In addition to pizza was a cake to honor one of
our members leaving to another career.
In ancient days I would have consumed mass quantities of these items.
I was able to guide myself to the foods I know are safe and wise, in
spite of the temptation. This was due to the memory of pain and the
inspiration of those on this list who suffer so much.
I must assume that there are others who are Pancreatitis Lite
attending to the list. I wanted to encourage you to post with
questions, observations and stories along with those who suffer the
depths of our disease. It is easy to feel that, because we suffer
little or not at all, that we are not one with those who suffer much.
Yet from just a few months on this list, I have seen that any of us
who are Pancreatitis Lite can find ourselves making the journey
deeper into this disease.
One area I think we can help one another is in learning how to eat,
and encouraging one another to care for ourselves in whatever stage
of the disease we live.
Mike Lockridge

Hi Sandy!

It's nice to see you posting again. How have you been?

Becky

Thanks for your reply Poncho and Linda
Linda the transthoracic splanchnicectomy does not involve open
surgery it is 3 small cuts on either side of your back done
laproscopically by usually a thoracic surgeon. It is not invasive
like pancreas surgery.It is a new procedure and is performed for
pancreatitis and pancreatic cancer. It has a high success rate and i
would recommend it. It didnt work for me as they thought it would but
should work for most.
It is the middle of summer here and the weather is nice and warm, so
I am able to get out into my garden. I live on a lifestyle block with
3 acres. We have a minature horse labrador 6 sheep and 4 chooks and 2
persian cats
talk to you soon
Debs

In a message dated 01/10/2001 3:26:28 PM Central Standard Time,
shirlf3542@... writes:
<< I hope you feel better soon and please ask anything you want.
Love, Shirley
Tammy, I too have been at an extremely low point in my life as a result of
this disease. I have not had the same procedures as many people have, but
I've experienced the same depression and sense of hopelessness. I too am
here any time that you need to talk.
Sandy

In a message dated 1/10/01 10:53:40 PM Eastern Standard Time,
jang2@... writes:

Whoo-eee, girl!! You sound like the new, improved, undefeated
champion Shirley! Its great to hear how quickly you are making
progress. If you hit a bad stretch, remember how far you've come. I
hope the rest of the way will be smooth skating for you.
jang

Thanks jang, I was thinking he same thing as you. I didn't take a nap today
thinking I would sleep better tonight and now here it is tonight and I can't
sleep. Isn't that always the way it is? You just can't plan your sleeping
at least I can't. I am so tired and that is the reason I am unable to sleep.
I hope tomorrow will not be a bad day because of not being able to sleep. My
back hurts also. Dog gone, I am worn out and can't do a thing about it.
Maybe I should take two Tylenol. Maybe that would help. I will try
solitaire for a while. Sometimes that makes me sleepy. Getting old and not
having hormone really robs us old birds of our sleep. Ha ha Love, Shirley

In a message dated 01/07/2001 1:16:49 PM Central Standard Time,
sunflower6668@... writes:
<< I am interested in everyone's history
and would like to get to know you better. Are you the one who was
here a year ago? Please let me know how it's going with you. I am
glad you are here.
Be well all,
Christine
Christine, I haven't been able to post due to computer programs since last
May. I posted quite a bit for awhile when I first learned of the site. I
learned so much and got so much support from the group that it has helped me
come to terms with this disease and what I can expect as it progresses.
I developed this disease after a long history of battling with high
triglycerids. I had some terribly inept doctors about 9 or 10 years ago now
that took me off my Lopid because it wasn't controlling my cholesterol
problem as well. Lopid was the only medication on the market at the time
that controlled triglycerids. They were pleased when my cholesterol went
down, however did not become alarmed when my triglycerid levels sky rocketed.
For about 1 1/2 years I was horribly sick and was experiencing these
horrible waves of acute pain that completely disabled me for days on end. I
was sent to a variety of specialist that could not tell me what was wrong or
even find a reason to "confirm" why I was experiencing these symptoms. I ran
on on-going fever and blood tests confirmed infection, however they could not
tell me where the infection was coming from. All the other blood workups
were coming back normal. After over a year of horribly extreme pain, I then
had an extended period of acute pain with no idea of what was wrong. I was
at my wits end and asked if there was anything that could be done to help
ease the pain. Would you believe the doctor was so cold that he
sarcastically said "you know you are going to be crossing that line when you
start taking narcotics." I had been so sick and hurt so bad for so long with
no hope in sight that when this acute attack hit I could barely move any
longer. All I could do when he said this was fall apart. After struggling
for a few minutes to even get up, I angrily told him to just forget it and
that I would just go home and die. He got upset with me because I was put
out with him. My sister-in-law who had to drive me to this after hours
clinic could not believe that he would not do anything to help me. I
sufferred for several more months and was just about to give up all hope when
I became so bad that I could no longer even move. All I could do was lay on
the doctors examining table for 8 hours because I couldn't get up any more.
The doctors "just couldn't decide" what to do with me. They couldn't
determine exactly what was wrong because the blood results were basically all
normal except for the one showing infection and anemia. By this time the
pain had spread from the top to the bottom of the abdomen and in the same
area through to the back. After crying nonstop for the hours I was in the
clinic they decided that maybe I had appendicitis. Would you believe they
would not even call an ambulance to take me to the hospital in Ft. Worth from
Arlington? My sister-in-law had to take me in her car. She was so horrified
that I was going to die before she could get me to the hospital because she
had seen how sick I had been and that this was even worse than she had ever
seen me.
Well, I got to the hospital and the surgeon decided to remove my appendix.
This was the first time I had even been given any pain medication!!!!! I
came out of surgery and remember my sister-in-law being told that my appendix
was normal, but he removed it anyway. He said he looked around while he was
in with the scope and didn't see a problem. He decided to admit me and run
some other tests to see if he could determine what the problem was. I was
finally given anti-nausea and pain medication, but I was so sick by this
point that I just wanted to die. The doctor finally did a CAT scan and they
identified an infection that had completely engulfed the back of the
abdominal cavity with the pancreas and liver enlarged and highly infected.
They still could not identify where the infection was coming from but did at
least finally start IV antibiotics. I left the hospital after a week on the
same medications I had been on in the hospital and was at home feeling like I
was still going to die. After another week another CAT scan and scope was
done. They finally identified the pancreas as being the source of the
infection. Well, then they started looking at why there was a problem with
my pancreas and that's when they discovered that my triglycerids were over
2500. Well, the triglycerids had been high for quite some time and they had
not paid any attention to this because my cholesterol was just a little over
normal on the new med's they put me on for my cholesterol. My cholesterol
has gone up in the 900's and they didn't want me stroking out or having a
heart attack. This was probably the only thing that they had appropriate
concern for. This was the first time I had heard anything about high
triglycerid levels causing pancreatitis.
Needless to say, within the month I had switched insurance providers and
doctors, believing that if I didn't do something to get different medical
providers I was going to die. It took me going to multiple doctors before I
could find a doctor who understood the connection between high tyiglycerids
and pancreatitis. During this time they were trying a variety of different
medication combinations to try to get my tyiglycerid levels down. During
this time I continued to have other acute attacks that put me back in the
hospital. They could not find any blockages or any other reasons for the
attacks and would often just stand around scratching their heads saying there
had to be something else. I too had to have my gall bladder out, however I
did not have any stones. My gall bladder became infected as a result of an
acute attack and after a week in the hospital on IV antibiotics did not clear
up. The surgeon did not want to take the gall bladder out if there were not
any stones, however my primary care doctor insisted that it come out.
Well, now that the pancreas is severely damaged from all the acute attacks I
have finally found a doctor who seems to understand the problems with the
pancreas and my fat blood problem. I am back on my Lopid for my triglycerids
and Lipitor for the cholesterol problem. I have a multitude of other health
problems because of how sick I had gotten. My last two blood work ups have
shown my cholesterol and triglycerid levels either in the normal range or
just slightly over 200. I have chronic pain that at time increases, however
I haven't had an acute attack that resulted in another hospitalization for 9
months now. I am now limited on what I can eat, but I am at least still able
to have some variety in my diet. I have to watch my sugar levels closely
because if I'm not careful it dips down too low. I haven't crossed over into
the diabetis diagnosis yet, however have been told this is inevitible.
I've been told that the damage is so severe to the pancreas that there is
really nothing else that can be done unless I get a blockage. Well, I'm
keeping my fingers crossed because for the most part now I am still able to
work full-time and stay fairly active in my children's lives. It is hoped
that if I can keep my levels low on these meds maybe I can decrease the acute
attacks. So far this is occurring. We are not sure about what will happen
in the future regarding just the normal aging process and the damage that has
already occurred. My focus right now is to just try to do everything I can
to keep my triglycerid level in control with my meds. I have a great deal of
anxiety if I'm late or miss a dose, scared that it will cause my levels to
shoot up and cause another attack. I know this is probably really
unrealistic, however when you experience the kind of pain you do with this
disease you don't always see things realistically.
I am really so much better now and have gotten some of my strength back, both
physically and emotionally. It's amazing how differently you can see the
world when you have a reserve of emotional and physical strength. I've now
been trying to prepare myself for the probability that I will have more acute
attacks and what my future is likely to involve in the hopes that this will
prepare me and my loved ones emotionally. I am hopeful that this will help
me get through the acute times where I can then focus on getting as well as I
can in between times.
Right now I am just enjoying what quality of life I have now. So many people
ask me how I can be so strong with everything that I am dealing with. All I
can say is the bad times are so bad that I just want to enjoy whatever I can
when the pain in managable or bearable. I have set limits on myself so that
I don't over extend myself and burn myself out and either bring on an attack
or make myself sick in some other way.
I've had to come to terms with the limitations I have and after being in this
group I feel I have so much to be grateful for. I have not progressed as far
as some in the group. I have also learned so much and have received so much
support and encouragement that I have gained a great deal of strength and
comfort. I appreciate everyone who is willing to share not only their
experiences but information they have learned as well as encouragement and
support to each other.
I have a strong belief in guardian angels and I believe Karyn was the first
guardian angel to touch my life because she started this group for us. Thank
you Karyn! :-) I also believe that everyone who touches someone else's life
in a positive way is a guardian angel sent by God to spread his love through
concern of others. Thanks to everyone in this group for what you do for each
other!
I know I can go on forever. Most of the time I try to keep it limited,
however there are times that my mind and hands just take over. I apologize
if this is a problem for anyone.
Sandy

want to eat and not worry about fats or panc attacks. I have no pain
in my pancreas. It is wonderful.
pill today. My meals are beginning to increase in size. I eat five
or six times a day very small meals.
Whoo-eee, girl!! You sound like the new, improved, undefeated
champion Shirley! Its great to hear how quickly you are making
progress. If you hit a bad stretch, remember how far you've come. I
hope the rest of the way will be smooth skating for you.
jang

Its nice to meet you. I'm sorry you are having so many problems, and
unfortuatly, it sounds all too familiar. Last Jan. I had my 4th ERCP
done at Indiana University, and the doc told me if it didn't help,
then he suggests the sugery you mentioned. Well, the ERCP didn't
help, but I don't know if I'm going to let anyone cut anywhere near
my pancreas. Did it help you? Is it painful operation? Do they cut
you all the way open, or do it with a scope. I know nothing about
this, and am just courous. My local GI doctor told me no one here
does this procedure, and I'd have to go back to IU. I had an appt.
to talk to the doc there on Friday, but postponed it, again. I guess
I'm just a little chicken.
Thanks for any answers you may have for me. And again, Welcome.
Lots of Hugs, Linda L. (from Ohio)

In a message dated 1/10/01 5:29:32 PM Eastern Standard Time,
feuerlotte@... writes:

. Right now I´m feeling so good
like I haven´t felt in two years time! When I eat something greasy or
too sweet (can´t have too much sugar either) now, my body tells me
that I did do wrong.

Hello Ilka,
I'm glad you are able to lead a normal life with this disease and hope you
continue to do so. I, too feel very fortunate that I have been able to
control my pain through nonfat diet...just wish that little "monster"
(Pseudocyst) would disappear! :) On my good days, I can drive to the mall or
take a nice long walk. Simple things I wish everyone in this group could do.
No matter how bad we think things are for us, we can always find someone who
is worse. You'll find this group the most loving, caring and supportive
people you could find anywhere in the world. I look forward to their posts
and worry about them whenever their condition is worse or they are having
surgery. It's strange to be so far away from everyone here but become such
good friends even though we've never met. I'm glad Christine speaks
German...I'm sure that made you really feel at home here! Take care of
yourself and enjoy every moment of the good days you are having...keep doing
whatever you are doing since it seems to be working for you!
Hugs & Prayers
Carole

In a message dated 1/10/01 7:06:46 PM Eastern Standard Time,
colind@... writes:

I look forward to talking with you all. Its a bit lonely here as I
know noone else with this in NZ
Debs

Hang in there Debs, sooner or later another one from your wonderful country
will show up on this board. We did have a guy from Hawaii who was planning a
trip to NZ posting here for a while. As far as your Panc. case, while we on
the board are aware, we also know everyone's case is a little different.
Sorry for the pain you have and the diet restrictions but those can be dealt
with as time goes by. Glad you posted, don't be a stranger, remember we are
mostly a bunch of brash Yanks so you may have to push yourself a bit to just
jump in. That's OK we want you to be here and feel comfortable.
Best wishes
Poncho

Have you tried the enzymes I mentioned? PANCREASE (pancrelipase
delayed-release capsules) made by McNEIL I have had success with them. Now
realize that I am not trying to diagnose your condition. We all have
Pancreatitis for varied reasons. I happen to have Idiopathic chronic
pancreatitis. (Idiopathic meaning "unknown causes") And these enzymes work
for me but perhaps your pancreatic problems are of a different nature. Ask
your M.D. about the enzymes, they may be your ticket to wellness, question
everything!
Nicole

Hi this is Debs from New Zealand. I am curuious as to how many of you
have had a not had a clear diagnosis of pancreatitis. In brief I have
had my gall bladder removed , this is when it first started, 9 ERCP's
8 ct scans. hida scan, bone scans blood tests, fecal fat tests,
feclal elastase tests, a lapratotomy,been in hospital 3 months a on a
jtube and pain pump,4 MRI MRCP, and lastly a transthoracic
splanchnicectomy wher ethey sever your splanchnic nerves to your
pancreas so you no longer feel pain. IT is a very new operation and
for 70 percent of people will work. Its done mainly in the UK.
I am on MST 70 mg a day , chronically fatigued, find eating orange
juice , rhubarb painful and fatty foods.
Apart from that due to the pain relief I cant tell you what else
affects me just that I fear stopping the MST as I feel the pain
underneath building up such that I feel soemone is turning a knife
through my insides.
They have never seen a case lik mine in New Zea;and and I continue to
see the top specilaist here. But they can not help me.
I havent posted really before. I am 37 and was hit with all this when
I was 35 . I was a project director for a telecommunications company
but have been medically retired put out to pasture at 35.
I look forward to talking with you all. Its a bit lonely here as I
know noone else with this in NZ
Debs

Just a note to excuse myself because I can´t answer any mails now
until monday. I´m going home over the weekend to my parents house and
there is no computer. So please don´t think I´m just a lazy
person..;-)
I wish you all the best and hopefully very little or at best no pain
at all for the weekend!!
Love, your German girl, Ilka

Hi Henry!
Hey you really wrote a lot!
So I´ll try not to forget half of what you said while I answer
you...;-)
Let´s start with my present location. I´m living in two places
actually. I´m studying in Essen which is in the north-west of Germany
at the River Ruhr. You should be able to find that. Big industrial
area. Not too pretty, though...
At the weekends I mostly drive about a 100 miles home to my parents
who live in Wetzlar (if you can´t find that look for Giessen, that´s
close) about 50 miles north of Frankfurt. That´s where I grew up.
I´m going there tomorrow morning. Bad part is that they don´t have a
computer so I can´t write e-mails till monday.
Don´t think I´m in too bad a condition. I´m just saying it in
comparison to what my condition used to be. I´m still running track
(no competitions anymore), I´ve got new Inlineskates and i have to
ride my bicycle to get to school. I´m working to get as close as
possible to what I used to be. But I´m feeling very well since I
started my diet. Had a wonderful day today.
I´m sorry to correct you but Whipple and DEPKR are not the same
surgeries. I know because before my surgery the question was if they
were gonna do the Whipple OR the DEPKR with me. But what makes me
wonder is your description of the Whipple. The way you describe it
certainly sounds like my DEPKR. The doctors explained the Whipple
quite different to me: To secure the drainage of the pancreatic duct
a piece of the small intestine gets cut out and then gets attached to
the side of the pancreas. But they don´t cut a piece of the pancreas
off. That´s strange. Gonna ask my professor next time I see him.
Yes, I first learned English at school. It´s required in high school.
I took it for nine years but of course learned most of my English
while I stayed in the States in the REAL life. I speak french, too,
and had to take latin. I love languages and am working on my
knowledge of Italian and Spanish because if you know German, English
and french, the rest comes without much work. It´s fun.
Hope you get to come to Europe again! I love switzerland, too. My
surgery was done there. And we always go there in the winter to ski.
Just this time we are going to north italy. Looking forward to that.
Why are you afraid that you won´t be taken care of medically when you
come over? We´ve got a wonderful health care-system here...and you´ve
got a friend in Germany who knows all the pancreas-specialists all
over Europe...No honestly, if you want to come over and need help-
I´m here! But I understand you. I want to come over to Indiana in
summer and I´m a little afraid for the same reasons. But I haven´t
seen my hostfamilies forever so I think I´ll just go.
Ouhh- already midnight. Gotta go to bed because tomorrow I have to be
quite awake for my trip home on the "Autobahn".
I´ll write to you Monday.
Love, Ilka

Dear Carol,
thanks for mailing!
No I certainly can not eat all that I want without pain. Since about
two month I´m on a very strict no-fat-diet. I use special butter and
special oil to cook and hardly eat anything except fruit, vegetable
and low fat milk products, old bread, turkey meat without fat. But
actually I´m not on this diet because of aleviating pain. Pain was
not the important point in this. Yes, I did get pain -but not very
strongly - when I ate stuff that was too fat for me. My problem was
the steadily growing weakness that had to be taken care of. And the
diet really is doing miracles with me. Right now I´m feeling so good
like I haven´t felt in two years time! When I eat something greasy or
too sweet (can´t have too much sugar either) now, my body tells me
that I did do wrong. But actually not through great pain but a weird
feeling around my pancreas, terrible noises in there and WEAKNESS!
So I stay away from it all. Doesn´t hurt me- I lost my entire
appetite after my surgery in 1999. -Yes, I´m on Enzymes. Regularly
with every meal, even with the smallest piece of fruit. But no
insuline.
Right now I don´t know my amylase and lipase level-numbers. They are
up high when I have an attack but immediately fall down to the normal
level when the attack is over. It´´s always like this with me.
I´ve got problems with my entire condition when the weather is rainy
and cloudy. My bloodpressure is very low then. All started after
surgery was done.
But you know when I read all these letters of the people in this
group I really feel blessed still. There are people who can´t eat
anything by themselves anymore and other ones are too weak to go out
for a walk and almost all of them suffer from terrible pain.
Yes, I´ve got problems that seem so big and important to ME but when
I look at all the things I DON`T have to suffer I´m ashamed of ever
having said a word because I certainly am able to lead a at least
fairly "normal" life with school, friends, party and lots of pain-
free fun. And I think it´s because I am ill that I am enjoying THAT
status quo much more than my healthy friends do.
Love, ILKA

Henry, thank you for your reply. When I see the dr I am going to ask him
many questions. I am going to write them down tonight. I have not been in
the hospital for this and my pain is not too bad and is located on the right
(side not front) just below the rib cage and goes down lower. It varies from
upper to lower but is always right side. Initially the dr thought large or
small intestine problems but colonoscopy and barium tests ruled out. Serious
symptoms are all digestive and it would seem advanced damage if I have these
symptoms but not showing on the CAT. I wonder if there is such a thing as
milder inflammation that would cause malfunction of pancreas without the
permanent damage.
Oh well, I guess more tests are in order. Thanks and I hope your day is a
good one.
tom

Dear Tom,
So sorry that you are having these C. P. problems. Is your pain level
high, and is it a constant pain, I forget, you did say that you have had
prior hospitalization for C.P.? As far as I know, different doctors use
different types of scans for differnt reasons. Whenever I've had a scan for
an immediate reson such as infection, or pre-op, they've used the Cat Scan.
They have invested a lot into the new faster Cat scan machines, and that's
what I've had the most of especially in the past two years, but I have had
all of the diagnostic tests that you mentioned. The pictures I saw fr