Huge archive

Dear {{{{{{{{{{{{{{{{{{{Karen}}}}}}}}}}}}}}}}}}}}
First I must welcome to you to TPP. I really hope you enjoy your time with us.
Any time you have a question, please ask and I am someone here will be able to
answer you. TPP really is a good place for information, care and
understanding!! No one understands better than another CPer.
Your story really sounds a lot like mine. Only my weight is a bit more than
yours. I was always on the heavy side without being really fat. Large bone
structure - good ole German stock. It will very alot and have size 8 to 14s in
my closet.
You mentioned malabsorption, have you done the fecal fat test? If yes, what
where your results? Have they scheduled the ERCP yet? Yes that is a very scary
test!! I beleive it is what changed Acute Pancreatitis into Chronic
Pancreatitis. Have had pain every single day of my life since the day they did
it in August 2000. It was that November that I first found about the
malabsoprtion.
What other tests have you had? How did this saga start for you? You are in my
thoughts and prayers!! Please keep us posted on how you are doing!! I have to
cut this short as it is just about time for chat. If you have AOL, send a
message to ReeAnn and I will get you into the chat room.
Hope to hear from you soon!!
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

Hi Karen,
First, I would like to welcome you to TPP. I am sorry that we have to
meet under these circumstances, but we are very glad that you are
here with us. Any questions that you may have, feel free to ask them
and we will do our very best to get you the correct information. If
you don't mind, would you tell me about where you live? That would
help in finding the right links to send you to in your area.We have
reference doctors, but not a list persay at this time. Also, we have
many members that are suffering with this desease and they will come
on and help you.
Our Prayers are with you!!!
Hoping you have a restful night.
Denise~S.C.
Caregivers Moderator
http://www.thepancreatitisplace.org/

Best of Luck with your NoName test. I too have had a very hard time
getting a diagnosis. I've been sick for over a year tot he point
where i can't work and have malabsorption and weight issues. I've
been doing high carb and am sedentary as well. I've been able to
mostly not lose for a while but struggle to try and put on (I'm 5'10"
and only 110). My doc is also starting to talk about ERCP for lack
of knowing what else to do since every other test has come up
negative. That test scares me as well so let us know how it goes.
Best wishes to you! I hope this works out for you soon.
Sincerely,
Karen

Does anyone know where I can find some sort of listing or resource
with all of the leading experts on Chronic Pancreatitis?
Thanks a lot.
Sincerely,
Karen

Hi Gary
Nice to meet you! Thanks for the note.
It sounds like you have a fulltime job caring for the loved ones in
your life. God has blessed you with a comforting soul. Caring for
aging parents is tough and can be a real challange. It is so wierd
how the roles become reversed. I hope they are not stubborn and
allow you to care for them!
From earlier posts it sounds as if ReeAnn is going through some
difficult days right now. I will keep both of you in my prayers.
Rhonda

Hello {{{{{{{{{{{{{{{{{{{Everyone}}}}}}}}}}}}}}}}}}},
I had the big appointment with the GI this morning. Sorry I haven't posted
about it until now. Had to rest (take a nap) when when I got home. Then it was
time to cook dinner and I am finally getting back to the computer.
In one word the Barretts was 'inconclusive'. Yes it is there, but because of
it's location it is not cause for alarm YET. It needs to be watch, as in next
biopsy one year from now, to look for any changes or growth of the area. The
good news is the biopsies of the intestine were fine!! No problems there, thank
God!!
Another good thing that happened today, my GI actually shoke my hand!! First
time in almost a dozen visits that this has happened. Our communication with
each other has been steadily improving and finally I feel totally comfortable
putting my care in his hands.
But that still leaves me without a diagnosis though. Some of you might remember
me mentioning a "No Name" test my GI has been talking about doing for some time.
It is similar to a Secretin test, but not quite the same. Today I told him if it
will help get me a diagnosis, I wanted it done. Like many of us here, I am
still fighting to get that diagnosis.
Here's what I know about the test. It will be done either with an EDG or ERCP.
Fluid will be pulled directly from the pancreatic duct and have many assays run
on it. It requires the coordination of several different departments at the
hospital. I will also have to met with the doctor doing the assays prior to the
test. So now I am in a holding pattern until they get it all scheduled. Please
pray that this test will help give me a diagnosis.
Another thing we talked about today was my weight. Given how bad the
malasoprtion is, the doctor is perplexed as to why I am not wasting away. I
told him I had been doing a lot of thinking about it and thought it because of
the high carb/low fat diet and the seditary life style. He thought this was a
possible, logical explanation. Said he will know more after this No Name test.
So that is where I stand right. I am very scared of this test bringing on a
major attack. But it will be worth it if I can get a diagnosis. Will keep
everyone posted as to when it gets schdeuled etc.
Everyone please know that you all are in my thoughts and prayers every single
day. And if there is ever anything I can do to help, please ask. I am here for
each and every one of you.
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

Hi Melissa,
You are 100% correct, it's not that simple. That's why we have to
follow rule one "Be Assertive". I really do understand what you are
going through, been there & done that, as they say. We have to talk
about that one day. You are so witty and your sense of humor is so
clever. I just know you have a plan already in motion. If I could, I
would be there with my suitcases under my arm, more than happy to
take your place while you are recovering after your surgery. I can
just imagine what it is like in the morning getting the kids off to
school. LOL
Hi Rhonda,
My heart goes out to you. I have been a caregiver many times in my
life. My Grandmother, Father-in-law, and my late wife. I'm now the
caregiver of both Mon, Dad and ReeAnn, my Loving wife, who also plays
a major part in the care of my parents.
True, I will never know the kind of love you have nor the pain your
heart bars, but you do needed to let people share in support of your
daughter. This is not only beneficial to you, but for them as well.
I am happy to see you agree with me a little on the first step. It's
ok for you to do something special for yourself. It would be best
for you and your daughter as well.
There is nothing more touching then the love a mother has for her
child. Rhonda, you may not feel like you are a super hero, but in my
book you are girl.
My prayers and thoughts go out to all caregivers who's love ones have
suffer with this illness.
Gary Morris ~ Virginia
Caregivers Moderator
Customer Service Rep.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

I can no longer be in this group. The stress is unbearable and
causing me to to drink. I have been banned from one group because of
my beliefs. I see this family calm and one saying terrible things. I
will deal with this on my own. I have learned much here. I have made
friends and many friends that turned enemy. That is not the way I
deal with life. I am very happy to sit back in the beautiful country
and enjoy my life. We have been having beautiful weather, business is
good, and I am going to be a grandfather! I will survive with help
from my true friends. God Bless Chiggy

Reminder Reminder from the Calendar of ThePancreatitisPlace
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Wednesday February 25, 2004
7:00 pm - 9:00 pm
This event repeats every week.
The next reminder for this event will be sent in 22 hours, 58 minutes.
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ReeAnn@...

My TPP Brothers and Sisters
I may be a thousand miles away, or more~
But when I turn on my computer ~
It is if you're here at my front door !
Welcome my TPP brothers and sisters,
Today is a new day ~
Great blessing and great joy !
That we are truly united ~
Ever lifting up the Lord in prayer !!!!
Father bless my "special" friends ~
Ones with no faces, that I cannot see
But with the key pads , we can feel the love
And pray and intercede !
Keep us forever, remembering
That we are truly blessed~
I pray for each new cyber-friend ~
And for those who are lost !
Bring them into You Dear Lord ~
Set those free ~
And Thank You, my true Father ~
For each and every precious Child YOU see !!!

Hi LeeAnn,
Sorry to hear that Jason is sick again. I have never met you, but my
husband, Robert remembers him. I hope that everything will be ok for
him. I am a caregiver on the board and it sure helps me to get on the
board and talk with the other caregivers. Gary, our Caregiver
moderator helps out so much.
Jason is 11? What does he like ? Sports? Art? If you don't mind, tell
us a little about Jason.
Our prayers are with you and Jason and your whole family.
Denise

Hi Rhonda,
So good to hear from you. It also does me good to be able to talk to
somebody else about everything that we go thru. When you wrote me the
part of people getting 'used to ' the loved ones getting sick, it
struck a nerve in me, cause I have told the family so many times,
just because Robert is better---that don't mean that he is over this
disease. It could be a good day that he is having. I didn't know
allot of this disease, and still don't know enough, but I have
learned some-just living with it, day by day is the best teacher. I
have saw Robert in the floor allot writhing in pain, and then to be
so tired, and sore from the pain. At first It really got to me cause
I wanted to do something but didn't know what to do, and it would
tear my heart out. Heck sometimes it still does, almost everytime!!!!
I am so so sorry that it is your baby girl that is sick, its gotta be
terribly bad on a moma. It would be so hard for me as a moma see
Sherry (daughter) go thru such pain. My prayers are very much with
you Rhonda. God never puts anything on us that we can't handle. He
gave you your angel and gave you the strength that you need to be
there and take care of her. I admire you.
Give you daughter a BIG hug from my family.
you ever need to talk-feel free to talk to me. I am here!!!!
God Bless and our prayers are with you and your family
Denise

Kimber,
I hate to hear you are having so much trouble. I pray that the
doctors and nurses treat you well and this attack passes soon.
Rhonda

Hi Kimber,
Sorry you are in so much pain. Hopefully you will get some much
needed relief very soon. Our thoughts and prayers are with you.
Robert and Denise

I just wanted to let everyone know that I am going to the ER as the pain
is just more than I can handle. It was bad during the day, then I tried
to eat some baby food around 8pm and then the pain went off the roof.
So, if you don't see posts from me for a few days, you know why. I'm
going to see if I can get access to a computer while I am there, but no
guarantees.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

AHHH my friend Gary if it were only that simple. Great advice tho.
Everytime I seem to melt down and reach out for help his family
condems me for not supporting him and for being a martyr. It is so
frustrating. Care to come take care of me when I have my surgery? LOL
Hugs
Melissa

I recieved this information today. I thought I would pass it along.
Thanks,
Robert
A Founding Member of TPP,

Gary and All

I just forwarded a post for Ron. He is having trouble with his
computer. He will post again as soon as he gets the problems worked o
Gary Morris

Hi Vicky,
Hoping this letter finds everthing with you fine. I am glad that
Robert sent you some info. He has been sick for such a long time.
About your parnter not being able to gain weight. I asked the doctor
one time about Robert---cause when his sugars are up, he can eat
everything in the house and still be hungry and can be losing
weight!!!!The doctor said that when the sugars are high---the
diabetes just destroys the nutrition. How high does his sugars get?
If it is uncontrollable, it is posible that he is has briddle
diabetes. Thats what Robert has. His will go from real high to low
and he says that is a real rush. It puts him on the couch.I have seen
it put him in the floor as well. not meaning to scare you, just
letting you know how this briddle desease is. It is something that I
had never dealt with until Robert, and I am still leaning. I am glad
that your partner has you. I don't mind talking to you at anytime.
Please feel free to post to me anytime. As for Robert's swelling---
its still bad, I don't think the doctors are so sure about it. they
took more test and we will find out next appt.
Our prayers are with you.
Denise

Hi To Our Caregivers
When things seem overwhelming don't try to be a Super Hero and
do everything yourself. When someone offers help be willing and
take it. Name specific things they can do for you or love one.
Accept help form friends and family that is offer.
Reach Out and ask another family member or close friend to help
you from time to time so you have time to yourself. They may not
know how to reach out and help unless you are able to let them
know your needs. Rule One be Assertive
Gary Morris ~ Virginia
Caregivers Moderator
Customer Service Rep.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

Hi Rhonda,
First of all I would like to say that I am glad that you are here on
TPP. This is the most wonderful place!!!!Anytime you need answers,
just come to the site and post the questions and someone will do
their best to answer them.
I do not have CP. I am a caregiver. My husband, Robert, (you will
meet him) He can answer so many questions. He has had CP for 15
years. I understand how hard it is for you to see your beautiful
little girl go thru this desease. Sometimes it is very hard for to
deal with and Robert is an adult. But this desease doesn't have a
spectic target!!!
Please feel free to come on and ask any questions that you may have,
or even just to vent. Alot of people really don't know what the
caregivers go thru. It is so hard to see your loved suffer. Sometimes
I will go in my room and just cry, but I have to be brave in front of
Robert.
We have a very good 'Caregiver Moderator' His name is Gary.
Also you said about the Versad. That is so very true. They tried that
on Robert one time and instead of calming him down, he wanted to get
up off the table and fuss with the doctor, so I can understand
that.We have been there also.
What does you little girl like ? Tell me a little bit about her and I
will write her a little note, if you don't mind. I have a daughter in
the 8th grade.
Our prayers are with you and your daughter and family!!!!
Denise

Hey Stuart I just saw where u unsubscribed. Want to outline for me why you
took such an action?

Brenda,
Thanks for the wekcome. I"m with you, so much to learn. Even more to
deal with. Take care.
Rhonda

Hi Vicky,
just wanted to let you know there will be Focus chat on diabetes
Thursday April 8, 7:00 pm esstern standard time hosted by Mellissa
Hope you can make it.
Gary

HI Vicky,
Thank you for writing to me. Sometimes you just need to talk to other
caregivers!!!! As for the question about the burnout----well first of
all Robert could elaborate more on that, but I can tell you my verson
of what has happened . Before he had the burnout, there were pain
pill bottles everywhere in our house----Robert could not eat due to
the pain and the meds just didn't seem to work on him, just made him
a little sleepy and when he was awake--a little goofy at times. He
really did not like taking them, but he was doing what the doctors
was telling him to do , so he thought that he was doing the right
thing. There were so many days/nights that went by without him eating
a single bite of food. I have seen him take up to 10 showers a night
just to try to ease the pain that was wrapping around his back and
stomach. I didn't know what he was going thru, cause I didn't have
the pain, but I did know that he was in some mega pain. So I just
tried to be as understand ing as I could.
After the burnout, he didn't need all the bottles of pain meds
anymore. And I started noticeing that he was eating again----almost
like a straved man at a buffet table!!!!It made me very happy to see
him eat. As you know Vicky---everything in life has a down side to
it.... Well this burnout is no exception,,,And I don't want to get
you upset, but the burnout lead to the diabetes getting much worse,
and that it is what is messing with Robert so bad right now, it is
very unctrolable, and that has led to the kidney failure and now the
swelling . But as far as the 'burnout' part of this ugly desease, I
am glad that my sweet Robert is not in pain every second of the day.
I thank the good lord for that----cause it just tears me up to see
him in such pain.
I really don't know if I answered your question, but it just feels
good to talk to another caregiver.If you have any othere questions ,
please feel free to ask me anything. Oh, I have a question, Does your
partner have very brittle diabetes now?
Thank you again for your letter and always know that you are in my
prayers.
take care, Denise

Dear Reann,
I live about 5 miles outside of Bangor. I love it
here. I've left the area many times and always come
back. Guess this is my home.
Thanks,
Donna Goodine
Hermon, Maine

Hi,
I was wondering if anyone had heard how Shana is I think she was a
friend of ReeAnne and Karen's, She was having a really bad time and
she was in the hospital from hell if I rememeber rightly.
I hope she is doing ok if anyone talks to here.
I hope you are well.
Take care
Vicky (UK)

I have had a very hard time with my cp over the last several weeks.
My amalyase had been very high(10,000) and lypase very very low(16).
The doc several times has wanted to put me in the hospital but I am
not in a postion where I can at this point. I am also a very bad
diabetic with bs that are over 400 90% of the time, and at times they
do not register. I take 120 units of 70/30 and regular insulin
sliding scale. taking about 20 units ever day. They say I am insulin
resistant. I also take 2 oral agents. I am in a fix right now and can
not do anything about it till my situation changes. My question is My
back and my face are severely broke out to the point they are turning
into sores an look awful. They itch like crazy. Does anyone else have
this problem? I am not sure if it is my diabetes or the high
amalyase. Last month was
the doc say and still wanting me in hospital. The pain is horrifick.
If I did not have good pain meds I know I would be there for sure. I
have many days that I can not hold anything down so do not even try
to eat just drink tea, and water and that is hard to keep down. And
Blood Pressure does any have low Blood pressure.. like 40/0, 60/20...
I have feltlike complete crap. When I get up I get very dizzy. Forget
bending over. I will pass smooth out. The doc says it is my pancreas
causing the low blood pressure. But the complete crap feeling has
been getting better until these past few days and it comes and goes.
Your friend and sister,
Loretta in Oklahoma

it's jan......... and i have low BP 70/42 and the lowest it gets 63/241
now that's dangerous. Alot of the low pressure is because of the pain med's
and that's why they watch the BP so carefully. 107 is high pain. i get
dizzy too but it's from the med's i take... they warn of dizziness. all of
them. I hopeyou have better days ahead. love, ja n xox

Ron,
Welcome to TPP!!!I am so very saddened that you have this desease.
You have came to the right place to get the answers that you need. I
am a caregiver to my husband. He will get on and talk to you and
maybe answer the questions that you have. Also it would be nice if
you would get your wife to come on board and post her thoughts as
well. We have a very nice caregiver moderator (Gary) that can help
her out too. Also everybody else that are caregivers can get
together and help each other. I would like to meet her. Our thoughts
and prayers are with you. Hoping you have a peaceful night.
Denise

Hi Gary,
I too am very saddened by what has happened this past week. I just
wanted to let you know how much I needed to read your email. When I
came on the board , it was because , sometimes I really need to talk
to others that are caregivers and will understand what the
careguvers go thru. There is no other site that I know of that I can
go to and get the care and understanding like I do here. People that
live around us just dont know about pancreatitis and what Robert and
all goes through with, so they do not understand. I am so very
grateful to TPP.
I am also very grateful to ReeAnn, sometimes when I am so down and
sad. She will cheer me up and tell the right things to do to make my
day not so bad. I do know that ReeAnn and Robert wants TPP to
grow and be the kind of place where people that are sick and people
who take care of them can come to and get the love and care that we
so despertly need.
So to see that people want to hurt TPP (my home) hurts me deeply.
There are people who have already left (and they know who they are )
they gave me love and support and I really appreciate it. I just
know that ReeAnn and Robert has not lied and is doing their best to
help us.I know that because as You know Robert is my husband and
soulmate and he only has TPP at heart and I have gotten to know Ree
and she has it at heart also---so you see they would never hurt TPP
or anybody that is gone.
So, all that said. yes I think we need to forgoet all the negative
things that only hurt and move on with our life and be HAPPY.
Love Denise Hammett

Bruce,
I have never met you. I am Robert's wife (duh-my email name ).
I am glad that you are with us. I NEED this group more than anyone
could ever know. There are things that come up with this sickness
and I need questions answered as to how I can help Robert, so I come
to TPP and get the help I need, plus alot of prayer and care.
I beleive that we are a good proup of people and will prosper.
Look forward to seeing you again.
Denise
caregiver

If there is turmoil behind the scene, then it is my belief that it
has nothing to do with me personally and, therefore, see NO reason
to "jump ship" or abondon those who are sincerely trying to help
others. For those who do not share my beliefs, I wish you best of
luck in your future.
Bruce
Member TPP
Opinions expressed are solely my opinion.

I am so very sadden for what has happen this past week, I have seen all the
hard work ReeAnn and others have been putting into TPP these past few months and
to get hit with all the lies and misinformation and hate mail was just uncalled
for. ReeAnn, in time the hold truth will come out and people will understand,
but it's time to put this behind us and carry on with the task at hand - TPP
Business. TPP will survive this and hopefully I will be able to present my goals
soon to the membership and start working on them. I am so very proud of you on
how you have not taken part in the mud slinging on the board. We have kept our
same kind and caring format for our members and put all our resource together to
combat this ugly illness. Ree keep up the great work and I with you all the
way!!
Gary Morris ~ Virginia
Caregivers Moderator
Customer Service Rep.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

Hello {{{{{{{{{{{{{Ron}}}}}}}}}}}}}}
First I want to welcome you to TPP. I am so sorry that you had the need to find
us, but gald you did. Unfortantly Denise is no longer with us, but I am sure
everyone here will do the best they can to help you.
Are you scheduled to have an MRCP? This is really not a bad test to go through.
It is actually an MRI, but only they look at the digestive system. Though often
times it will come back normal and not pickup on existing problems. It is best
for looking for things like cysts and not good for any ductal disorders.
I too take Vicoden, but it does not help very much with the pain. Sounds like
the phenegran is not working for you either... For nausea I use the generic of
Compazine and have found that works much better for me. You might want to talk
to your doctor about it....
Once again welcome!! Nice to see a navy man here... My late husband was in the
Navy for 13 years and buried at seas 7.5 yrs ago. Will keep you in my prayers.
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

Reminder Reminder from the Calendar of ThePancreatitisPlace
Hosted Chat - ReeAnn
Sunday February 22, 2004
8:00 pm - 10:00 pm
This event repeats every week.
The next reminder for this event will be sent in 23 hours, 4 minutes.
Event Location: AOL's TPP Chat room
Notes:
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DeniseHallock@...
MsReeAnnBetts@...

Hi,
My name is Ron and I am 45. I recently was diagnosed with
pancreatitis a few month ago. I was introduced to this site by your
web site by ReeAnn and Denise. I take vicoden and phenegran, but it
doesn't seem to be doing anything. I am very new to this. I do not
have pain all the time but I have nausea every minute of every day
for a year now and I am just being diagnosed. I was wondering if
anyone knew what a MRCP Test was and what it entails and how long it
takes. I need all the info I can get. Can you please help
Ron

Dear {{{{{{{{{{{{{{{{{Louie}}}}}}}}}}}}}}}}
Thanks for posting about the pain pump. Last time I was at the pain clinic they
mentioned that as a possibility of getting me a pain pump. I go back to see
them on the 26th or 28th for a psych review and I guess we will take it from
there. My new PCP order the review. I changed PCPs after not getting my pain
treated by either the Pain clinic or my old PCP. What a terrible situation that
was. I went into the pain clinic and told them I wanted it in writing that they
were not going to treat my pain and then they relented and wrote a prescription.
They sure didn't want me taking something like that to the local newspaper.....
Anyway, now I have to get through the psych review and my next appointment with
the PCP.. think that is on the 4th. Right now I am more worried about my
appointment next Tuesday with the GI. Still very worried about that Barretts
and wonder why no one has told me before this.... Suppoively have not had
problems with Reflux since the surgery... So it must have been there all along.
Thanks again for the information Louie!!
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

Dear ReeAnn,
Well said. TPP is here for all. It will remain that way despite the
way the group has been done. It will overcome this, no doubt. Once
the new has worn off of mud slinging we will once again rise to the
forefront. Help is on the way soon for our members. For the members
who do not wish to remain, Best of luck to you!!!
Thanks,
Robert
A Founding Member of TPP,

Dear Donna,
I suspect that your problem is that the remaining pancreas you have
left is just as bad as the part you have had removed. I was informed
of this the next day after my whipple. The pain should settled down
to bearable soon. I did however have to remain on pain meds until I
finally burned out. Looking back now, I wish that I could have had
more time and ease into brittle diabetes more slowly. I urge you to
keep a journal and keep your docor updated. I will be here for if
you should need me, as will TPP. If you have specific questions we
try to do our best to answer them. Pleas forgive me in the delay. I
have have been having health problems with the spin-offs of having
burned out. I have continued to have swelling problems. I refuse to
take any water pill, it is just to risky at this time.
May God Bless,
A Founding Member of TPP,

Dear {{{{{{{{{{{{{{{{Donna}}}}}}}}}}}}}}}
I am sorry I can not answers your questions on the Whipple. Robert really is
the best person to do that. But I did want to write to you anyway. Where
about is Hermon Maine?
Twice in my life I had the pleasure of living in Maine. First time was in the
Sanford area and the second time in Portland. Maine is home to me in my heart
even though I was born and raised in the midwest. I loved being near the ocean
and mountains. I loved all the quaint little towns. But most of all I loved
the people of Maine. I have traveled and lived all over this country, but in no
other place do the people compared to Down Mainers.
Everyone I ever met there opened thier hearts and homes to me. Did everything
possible to make me feel welcomed. Very honest, opened and genuinely caring
people. The best!! I hope one day to visit again with Gary and if we ever
leave Virginia, that is where I want to go.
Lots of Love from an adopted Down Mainer.
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

Hi Laura,
I too have a implanted pain pump. I have now had one in for six years now.
I on my second one. The first one lasted me 4 1/2years, before I started
having trouble with the battery. They replaced it in Sept of 2002 and said
the newer one have a longer life span of 5-7 years. I had both of mind done
at Ohio State Medical Center Pain Center, in Columbus, OH. Last May (03)<
the had the replaced the medicine in mine since I wasn't getting any relief
from the morphine anymore. They changed it to Diludid. I just had to have
it refilled here locally in Wheeling, WV last Friday and found of that there
is a shortage of morphine 50mg strength, which is the strength they usually
use in the implanted pain pumps. It seems that the company that usually
makes the morphine for the pain pump has been sold to another company and
they is now a shortage of the 50mg strength and they expect it to last to
July. My nurse said that the 25mg strength has a very large supply, but the
bad part of using it is the pump will have to be refilled all lot more
often, which is very good on you. She said that everyone else was on the
morphine except me, and she is glad I on Dulidid, since I won't have the
problem getting the right strength I need. She just found this out from the
hospital pharmacy that morning before I got there. I through I would
mention this to you since you are on morphine in yours and maybe you haven't
been told of the morphine shortage yet. I just wanted to let you to know
so you can make the people who refill your pump of this shortage. I don't
how often you need yours refilled. Hopefully it's not very often. I don't
want to alarm you, but I through you needed to know about this, so you can
mention it to your pain pump refill folks. I also need to take medicine for
break through pain and I take 10 fast acting kind and 30 mg Morphine long
acting kind .
This combination of Dulidid in the pain pump and the morphine for break
through pain seems to help me all lot.
I was on percocet for a long time, when they first start the dulidid and it
wasn't helping anymore, so then they changed it to morphine which works well
for me.
Take Care,
Louie(a Lady) in WV
Take Care,
Louie(a Lady) in WV

Hello To All,
My name is Loretta Bromlow. I live in Oklahoma. I am 34 years of age. I have
had chronic pancreatitis for 2 years. It has been very severe now for the
last bit. It has made me a very brittle diabetic, in which I was not till after
I
had my second attack.
I do not post a lot because most the time I am at loss for word. I am a
moderator here at TPP.
As with Ellen, Jeannie, and I am sure many others this past week has made me
very sad in my heart, and soul. I am like many other I love to read the
posting of the members, I have cried, laughed, smile, been saddened experiencing
so
many different types of emotions. It is so weird that I have become to know
everyone though their words of how they are doing, what they are going through,
and sharing of their experiences in which I totally relate. So, many times I
have had a question then, read a post and it get answered...
I don't understand how when we are wanting the same to love, offer help,
prayer, share, care and most of all find a way to live with our disease thought
those who have treaded the waters before we have, or share our waters before
other have had to tread them. I know many times I have talk with ReeAnn and
Denise and they both have a love for you members and they both have a good heart
in wanting to help in anyway they can for those living with this illness. I
hate that this last week of difference of oppion between them has spit up their
sisterhood, and friendship. So much has taken place in one week, I am still at
a mass of confusion.
ReeAnn my dear friend and sister. I am so very sorry all this has taken place
and I know your heart is heavy, and hurt. The wise old saying is time heals
and though that we become more compassionate and understanding and gain new
strengths. TPP will continue on.... And grow and you and all us members will
continue in our battle for a new and better tomorrow. I love you my friend.
Denise my friend. I am very sorry for all this that has taken place and I
also know your heart is heavy and sad as well. I wish you the very best in
Chronic Pancreas Pain Support. It will grow and continue with members present
and
new. You will receive the support needed to see it though from your fellow
friends.
I have to say I look forward to reading the post from both sides as I am sure
I will have the same emotions that I have had reading post in the past. I
wish everyone in both groups good health and to be pain free. I hope everyone
finds understanding for both ReeAnn and Denise. Both of them have set a course
in
life to make us members better understood and bring us together so we may
find each other to lean on and create friendships that otherwise would not have
been. I love everyone.......
Loretta in Oklahoma

Hi all:
Just wanted to let you know that Mark Armstrong has started another
pancreatitis forum in addition to Tops. Th is forum has nothing ot

Thanks for the information, Jeannine. I appreciate it. Tammy

I light of what I've been reading here, on the other site and in
personal email, I have decided to leave the group.
Shame on many of you for such poor behavior.

What did you mean in your post about damage done to the file??? and who
are the "management team" of TPP in case we need to talk to someone? How
come none of this is being explained... just brushed under the rug..so to
say? pls let me know... We as members haave the right to now whaa'ts going
on and who are the moderators or what are you calling the "management" team?
love, jan xox

Dear Jan,
I know every one has questions right now. Please be patient just a
little longer and all your questions will be answered. Don't want you
or anyone thinking we are ignoring this situation. Everyone will
have answers soon.......
All your questions will be answered shortly.

Dear ReeAnn,
Here are some links to Barrett's Esophagus.
Sorry about the way you have been treated over the last few days. I
hope this helps you futher understand the spin-offs of pancreatitis.
If they are unclickable, please copy and paste them into your browser
You are in my thoughts and prayers,
Robert
A Founding Member of TPP,

To my TPP Family,
I have been doing an audit of damage done by TPP Management. Below
are the findings of deletes and edits. The edits were done to link
the sites to dead ends. I will not tolerate damage to TPP. We are
trying to repair the damage asap. This damage not only hurts TPP but
our family members. The safeguards put in place after the last
deletes saved our site from sure destruction. Actions have been
taken. Be assured TPP will continue into the future.
Thank you,
Robert and
The Management Team of "The Pancreatitis Place",

I applied for SS long before I got my CP diagnosis.That's because, as
in so many cases, none of the doctors knew what was wrong with me.
My reasons for requesting SS were excruciating pain, nausea, vomiting,
and diarrhea for which I was in and out of hospitals and on loads
of medications that altered my ability to function.
I constantly sent copies of my medical records, reports and charts to
the SSA. Included was a letter from the GI doctor who was treating me
at the time that I applied. AndI had to pay him a hefty fee for that
document. Please note that it was he who advised me to apply.
I wound up having to go before a judge to fight for my benefits.
And each and every one of those documents was on a table in his
chambers at the hearing. They were in the hands of a court appointed
physician who was there to "interpret" them for the judge.
Throughout all of the process, I was fat. I'm still fat. But no one
at the SSA ever used that as a reason for denial.
Sadly, my size has made too many doctors refuse to believe my
diagnosis when I finally got it three years after becoming ill.
There are still many who are under the impression that
we must be wasting away and in need of a feeding tube.
And they're simply wrong!!

I'm sorry to hear about your horrible experience! Ohhhhh it must have been
just a night mare! Well.. at least you don't have full blown pancreatitis!
That's really good! But what is this other thing? Barrett
s (sp) do you know anything about it or have they suspcted it all along
.... do you think? Did you tell those idiots tha t you were awake during the
procedure... afterwards??? I would have strangled them all! I found out in
my hospital that the medical professionals (??????) are getting away from
sedating patients during different procedures!!!! Why? i asked.. That's
totally barbaric! No answer..... from the nurses. Well.. hopefully this
barrett's (?) thing was just a bad dream you had. i hope so..... things are
slow here....... Gary did a good job keeping up...! love, jan xox

Ree Ann et al:
We recently learned that my husband,Ed, has a small amount of
Barrett's Esophagus. It is a condition in which intestinal tissue
replaces esophageal tissue that has been eroded by acid reflux.
Happily, we've just learned that the chances of it becoming
precancerous and/or cancerous are much less than was thought
just a few years ago.
Our GI specialist advised us that even patients with Barretts in 50%
of their esophagus are living long healthy lives.
Ed is doing very well on The Purple Pill.

WHAT A NIGHTMARE!!
Hello {{{{{{{{{{{{{{{{Everyone}}}}}}}}}}}}}}}}}}}}}},
I have been though countless EDGs in the last 4 years. Dozens at least because
before the pancreatitis was suspected, I had severe reflux/GERD - bad enough to
ulcerate my whole esophagus. This is why I had the fundo surgery in April of
2000. Because I was afraid of it turning into the precancerous condition called
Barrett's.
I have never had a problem with EDGs Even had one just a month ago with no
problems. But today it was a nightmare. First they stuck me three times before
they got the IV going. Have 3 HUGE bruises on my right arm. I tried to tell
them my veins shatter very easily.... Then was about 45 mintues late getting
into the procedure room.
So the finally get started and I was out only a moment or two!!! Basicly awake
druing the WHOLE PROCEDURE!! Couldn't tell them with that tube down my
throat... All I keep thinking was "Please Lord let this be over!!" I was awake
during all 4 biopsies!! Finally it was over and I think I was in shock when I
got to the recovery room. I just wanted out of there as fast as I could....
The worse part about it, when they did the biopsy of the esophagus (wasn't in
the orders) I over heard the docs say it was Barretts! I don't know how many of
you are familar with Barrett's, it really is another scary disease. If I
remember correctly it turns cancerous in about 20% of the cases. I will have to
have EDGs every 6-12 months for the rest of my life!! After today, never want
to go through another one!!
What a horrid day!! Sorry about venting like this, was just a terrible day.
Also been dealing with the Denise/Pat situation and that hasn't helped matters
either.
I have tried to shelter members as much as possible from this situation as it
results from a lot of hatred directed at me. UnfortunateIy the situation has
esculated to a point where this can no longer be done. I will have an official
statement from all of TPP management posted within the next 24 hours regarding
the Denise/Pat situation.
Meanwhile, praying everyone has a pain free of a night as possible.
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

Tammy,
yes, you can use chronic pain with the chronic pancreatitis and if you
have any other health problems, list them as well. That's what I did and
I eventually got my approval (I had to appeal and then request a trial
hearing, but then the judge approved it).
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Hi everyone
Some of you may have known my mom was told she had Cancer this
past summer. The fast and slow growing kind. Because Cancer has
taken so many in my family members Mom decided to just give up. Well
Mom and Ree had a long heart to heart about this and told mom she
wanted her Mother-in-law around for a very long time. So when the
Doctor came back in Mom change her mind and decided to fright. So to
make a long story short we where told yesterday Mom is now Cancer
FREE ReeAnn and I are taken Mom and Dad out this Saturday to
celebrate.
Gary
PS. The best part of all I will now hear all summer long for years to
come "Gary did you do what I ask or Gary have you done what I told
you ". Will be music to my ears and my answer will always be
"Yes Mom I did".
I thank God everyday that I still have my folks

Marissa,
If I was you, I would see another Gastroenterologist, bring all your records and
get another opinion. Maybe your doc was just spacey and didn't have your records
in front of him when he talked to you. But hey, a 2nd opinion doesn't hurt.
Just my opinion.
Jerry/NC

ohhhhhhhhh im happy for you sweetie.. What a blessing... and the best gift
from God! It's understandable your emotions are going crazy.... all pregnant
women go thoruogh this... it's ok. Just take one day at a time.... you can
do this... lady.... afffter all... not every woman can have the gift of a
child. so............ you areee blessed. love , jan xox

Everything I've read about social security and chronic pancreatitis
seems to say the governing board (for lack of a better phrase) uses
weight to determine eligibility. Is that right? Is there any other
way to get ss with chronic pancreatitis? Tammy

Wow. Thank you so much. I really appreciate it. Tammy

Hi Tammy,
I truly understand how you feel Tammy. Been there, done that,
and still there girl. This is a very scary feeling indeed. I to am
the only breadwinner in my household and I have my mom and dad living
here as well.
Tammy all I can say for now is go in and do the very best you can
at your Job. That's all any one can expect of you Try not to let
this get you down so much. Easy to say I know, but remember "it's a
stare of mine". Their are several things you can do to protect your
job and I will start working on the information tonight and e-mail it
to you no later this weekend In the mean time take care of yourself
and please try not to worry so much. Things have a way working out
for the best.
Gary

Hey Marisa. I swear sometimes doctors work with blinders on. A couple
of weeks ago, I went to the doctor and told him the pain and nausea
were worse and he panicked. He then ordered a cat scan/pancreatic
protocol to look for tumors. I sometimes get VERY confused. I take
enzymes too, but those just help with the diarrhea. Tammy

Hello All
Well, I have some really great news and some really frustrating news. The
good news is that I am going to have a baby! I am so excited as we have been
trying now for about 9 months. This is my first pregnancy and I am a little
nervous about my meds but the high risk ob says we will manage. The only thing
I
had to stop immediately was the Elavil. My pain meds I only take as needed
anyway. I haven't had a great need for them lately. Lets hope it stays that
way.
OK for the really frustrating news. So I call my GI to tell him about the
pregnancy and that the CT we had scheduled (to look at a pseudocyst) for March
would obviously have to be canceled. I also had some questions about pregnancy
and pancreatitis. I asked him since I have had part of the tail of my
pancreas removed if I was more likely to become diabetic during the pregnancy.
Then
I think he said (I know I should have clarified but I am so emotional and I
just couldn't deal with it at the moment) "IF there was an underlying problem
of chronic pancreatitis I would be worried." I was shocked this is coming from
the man who on October 28, 2002 told me that it was CP. I am so frustrated.
But the weirdest thing is that he does not question my pain. He thought it
was a really good idea that I see the high risk ob and that if I had increased
pain during the pregnancy that he would be willing to work with the ob to get
me comfortable. So why does he have me on Pancrease Enzymes? I am so
confused. Maybe I misunderstood him but I don't think so. I think he thinks
the pain
is likely from my pancreas but maybe he doesn't think it is cp. Then what
other pancreas pain could I be having? I want to call him back but every time I
think about I cry uncontrollably. I thought I had found out what was wrong
with me and now I am back to square one? Actually I do know what is wrong with
me and I thought I had found someone who knew also. The only good thing is he
is willing to help with the pain, but what pain is he treating? I am totally
in shock and confused. I am going to tell me high risk ob what happened and
maybe have him call me GI. I just am to emotional to do it. I also thought
about writing a letter and faxing it to him. Any ideas?
As always thanks for letting me vent!
Sending lots of happy thoughts your way.....
Marisa~San Diego, CA

Karen,
Congratulations to you form having a doctor that cares so much.
This is such a blessing, most of our doctors do care for their
patients, but they are so busy the simply can't go the extra mile
like this doctor is doing.
Treasure this doctor, you can't price this type of committment, your
truly blessed indeed.
Good luck in the future Karen, I always enjoyed your posts and
contributions, hopefully i will do so again in the future some where!!
Pat

Hey everyone,
Just wanted to let everyone know ReeAnn back home now getting some
much needed rest, as I still do not understand ever thing about this
illness. I'll let her give you the details later tonight when she is
feeling better. The Nurse told ReeAnn not to make any major decision
today. Gee does that mean I am in charge of the household? So where
do I begin? What mess can I make What toys can I buy, got to run
folks time is a wasting away ReeAnn will be back up to par soon so I
got to take advantage of this time while I can
Bless all and have a pain free day
Gary

Glad to see you're home, Pat. I spent last night in
the ER myself. It was no fun. For some reason my
pancreas is spasming. I can feel it fluttering, and
the pain and nausea are pretty bad. Anyway, hope you
feel better soon, or at least as good as you can. Tammy

Thank you Linda for these fine and most welcome words of comfort and
prayer.
I do hope we can enjoy eachs other's company again somewhere in the
future???
Pat

Hi Rhonda. Welcome to the group. I just joined within
the last month, and the people are wonderful here --
very supportive. I'm sorry to hear your daughter has
to live with this disease, but that's great she has
some normalcy. Welcome again, Tammy

Good morning!
My name is Rhonda Chitwood and my 11 year old daughter Amanda has
suffered recurrent acute pancreatitis attacks since age 6. We live
in Tulsa, OK where Amanda is in the 6th grade. Amanda has a little
brother, Alex who is 8.
Amanda was first diagnosed in the spring of 1998, however, I can
think of several earlier attacks that were never diagnosed
correctly. I thought she had some horrible stomach virus. She was
vomiting and in so much pain she was crying out in pain. Luckily,
the ER doctor ran this test and discovered her enzyme levels were
extremely elevated. I knew things were serious when they called her
pediatrician in at midnight to talk with us. Just a year earlier she
had been diagnosed with H Phylori and had been treated with
antibiotics. At first I thought the two were somehow related, but
the H Phylori has never returned and I have always been told there us
no correlation between Pancreatitis and H Phlori. Since the doctors
were unable to find a reason for her to have pancreatitis, we were
told that it probably would never reoccur. Nine attacks later, we
have finally realized this isn't going away. But we are very
fortunate because in between attacks she leads a normal life and gets
to enjoy a normal childhood.
Amanda seems to have attacks every 6 months that require
hospitalization. For her, after 5-8 days or rest and IV fluids, she
is back to normal (which we are very thankful for, we all realize
there are others who suffer with the pain daily). Her most recent
attack was by far the worst ever and really has her Dad and I
scared. She started have severe stomach pain and nausea, however,
her enzyme levels did not elevate as they have in past attacks.
However, the pain was very real and a ct scan showed that her
pancreas was inflamed. She was admitted to the hospital here in
Tulsa and we decided to treat as normal. After a week of IV fluids
and rest, the pain had not subsided and her liver enzymes started to
elevate. Dr. Rothbaum thought it would be best to move her to St
Louis for her recovery and to do an ERCP to see what was going on.
We had always talked about doing the ERCP, but never thought it would
tell us enough to offset the side effects. The ERCP gave us the
confirmation that Amanda's pancreas wasn't built quiet normal. The
main duct is very very small and a secondary duct seems to be doing
the work. She also had scar tissue buildup from her previous
attacks. The doctors said that stinting is not an option for
Amanda.
Of course, hours after the ERCP Amanda's pancreas went into a major
attack. Unless a doctor can give me a mighty good reason, I will
never allow Amanda to have another ERCP. The pain was horrible and
we had trouble getting pain meds because the nurses had to wait until
the medications from the procedure wore off. That was a very long
and trying day, but I have to commend the nurses at the hospital who
were so caring and understanding. It took Amanda a full month to
recover in St Louis. By this time, we had to start a PICC line to
start getting Amanda more nutrition. Amanda had an allergic reaction
to the Versed they used to try and relax her to start the PICC line.
Instead of relaxing her, it had the opposite affect and she
panicked. Another long day. Over the next weeks, the pain slowly
subsided enough to allow us to come home. She continued with pain
meds and IV nutrition for 3 weeks at home.
That was 3 months ago and she is feeling great today (YEAH!!)
Because of this last attack, I have realized that Amanda is probably
looking at a lifelong problem. I am so afraid this will turn into a
chronic issue and/or a cancerous issue. I am also afraid of the
problems she will have when she becomes an adult. So many nurses and
doctors associate this disease with alcohol and make assumptions.
This is such a frustrating disease because there is no fix. I get so
mad talking to co workers and others who don't understand. They say
things like "well, what are you doing to get this fixed?" or "There
has to be something they can do". People don't understand there
aren't many options with this disease.
That is my daughter's story. My entire family is glad to find this
site!!

hi Jac....yes they are wonderful here...everyone keeps me going...actually
getting a computer at home soon...(with tax return $$ yeah!!)..so i can get on
the night time chat on Top 5 Plus...cant wait.. for a week and half i have been
sick and vomitting but the pain manage doc says that the procedure he did (the
nerve block)(burning the nerve 2 weeks ago) didnt help my day to day pain , but
it did help my flare ups (episodes) i havent had any ER pains. only the naus and
vom...didnt havent figured out what's worse...has any one else had the same
outcome ??
take care...thanxs brenda
Jac <beattie55@...
Hello!! Brenda, how are you feeling??? It was good to see that the
group have been sending you post, i hope you find it helpfull. At
least you will not feel alone anymore, you have all of us.I had a
few good day`s last week, but now is a differant story, my gland`s
are all swollen again, and i feel yuk!! to say the least.Your in the
right place girl, we will help tp keep you going,and be there for
you come what may. Hope you are feeling abit better today, wishing
you well, Jac. xox
www.thepancreatitisplace.org

you are exactly right about it all..i appreciate response..because there is so
much that i know and have learned about hp...but dont want to scare my friends
and relatives...but my mother is actually the worse she wants to know exactly
what's going to happen to me..but then she gets depress....me being a parent i
do understand why..
thank you again...and have a pain free day..brenda
brunerlh <lhbruner@...
Hi and welcome, Brenda. One of the hardest things about this disease
is trying to explain what this disease is, how it's going to affect
our daily lives, and why we're always in pain and sick a lot of the
time to our families and friends. If you say too much you can scare
them, but if you don't say enough they may not believe that you
really are that sick. I think that we want to protect the people we
love. It's hard enough for us to go through the pain. Maybe it's
harder for them to watch what we're going through. I hope that you
can find a median. After a while, I think we all just want to forget
that we're hurting and just exist. Good luck, you're not alone.
You'll always be able to vent, ask questions, or just spend a few
minutes across the net with people who know exactly what you're
going through. From Linda from Atlanta
www.thepancreatitisplace.org

I live in FLorida and went to the Mayo Clinic in Jacksonville, they are
excellant doctors and employees there, but i did go through this one procedure
where they numbed the nerve...it was suppose to help me be pain free for 6
months unfortunately..it was only 2 days...i have hp....for 3 yrs now went there
in December 2003... i have had so many procedures done from different
doctors...finding any doctor to give me a pain free life...i wish you all the
luck and please let me know on ur follow up..take care
Karen Weston <karenw@...
told me that she is not happy with just accepting that I have chronic
pancreatitis and that I have to live the rest of my life being in the hospital
every 1-2 months and living on narcotic pain meds. She wants me to have a full
workup at Mayo Clinic. Her nurse will contact Mayo and give them the info they
need and then Mayo will contact me and we'll set up a time for me to go. With
Nikki's college graduation on May 8th and her wedding on May 29th, I don't
expect to be able to go to Mayo Clinic until sometime after the first of June.
I don't have any idea which Mayo clinic she is planning to send me to. I live
in north Alabama, so I think the closest one is in Florida, but I'm not sure.
Karen

www.thepancreatitisplace.org

Lisa...an EGD is an upper endoscopy. I think the "offical"
terminology is EsophagoGastroDuodenoscopy" ! <smiles
A lighted scope is put down your throat (you are anesthetized to a
point of "not caring", but still a bit awake so you can move
around.) The back of your throat is sprayed to calm your gag reflex
and you help the doc by swallowing the scope...I did not have a
terrible experience, though I have heard that some do. I think
perhaps those people didn't get adequate anesthesia....I had a lower
endoscopy the same day. I was awake enough to be able to watch the
screen and found it all very interesting....but then again I am in
the medical field.
Hugs, Jeannine

I hope things go well and you don't suffer like most do aafterwards. I
hope you have a good stash of pain meds.... youll need them... believe
me.... i've been there, too. I'l be thinking about you....... mayybe Gary
could let us kknow how things are going with you???? thanks, love, jan
xox

ReeAnn,
Good luck with the test, I don't really know what this test involves, I hope it
is not like an ERCP though. Those things always kill me!
Lisa
Simi Valley, CA

I had an appt with my rheumy today. She told me that she is not happy with just
accepting that I have chronic pancreatitis and that I have to live the rest of
my life being in the hospital every 1-2 months and living on narcotic pain meds.
She wants me to have a full workup at Mayo Clinic. Her nurse will contact Mayo
and give them the info they need and then Mayo will contact me and we'll set up
a time for me to go. With Nikki's college graduation on May 8th and her wedding
on May 29th, I don't expect to be able to go to Mayo Clinic until sometime after
the first of June.
I don't have any idea which Mayo clinic she is planning to send me to. I live
in north Alabama, so I think the closest one is in Florida, but I'm not sure.
Karen

Hello {{{{{{{{{{{{{{Everyone}}}}}}}}}}}}}}}}}}
Has been a rough few days for me lately. Have not been sleeping well either.
Sure that has contribed to the pain and nausea. For 5 nights in a row I didn't
get more than 2 hrs sleep. Finally got some last night and am hoping to get
more tonight. Have to go through the EDG in the morning.
The reason for this EDG is to get biopsies of my small intestine. Doc still
looking for reasons besides the pancreatitis. Don't think they will find
anything, but it does put off that nasty test of pulling fluid directly from the
pancreatic duct.... Would like that one put off as long as possible!!
Anyway, will send a post as soon as I am home from the hospital tomorrow.
Meanwhile wishing everyone as pain free of a night as possible!! You all are in
my thoughts and prayers!!
ReeAnn M. Betts-Morris - VA
Owner, ThePancreatitisPlace
434-409-7162

The standard medical release form that we all sign prior to ndergoing
an ERCP lists the possibility of pancreatitis.
In my case, each and every one of those procedures; and there were
four of them in rapid succession, caused more damage and suffering
that I swore I'd never allow anyone to perform one in me again.
Thankfully, I have GI doctors who agree with me.

Hi,my name is Ruthie i am still looking for someone that has had the
islet transplant,i would really like to talk to anyone that can tell
me anything,i am really scared.
Thanks,Ruthie

Hoping that you will come through your latest attack, Patrick.
You're in my prayers. I know that you'll fight hard to get better so
that you can take a little trip to see Maura. God bless and keep
you. From Linda from Atlanta

Lisa,
if you here from Pat or his wife, please let them know that I am sending
my best wishes that Pat will get over this attack fairly soon and that
his pain goes way way down.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Where is everyone? It has been so quiet! I hope everyone is doing
well and not in the hospital hotel!
Lisa
Simi Valley, CA

Sorry all
I got booted off of aol and lost the chat
Pam in Santa Clarita

I just wanted to pop in and say I have stillnot heard anything from
Pat or his family. I am hoping this means he is being well taken
care of. If I do not hear by tonight I willbe making that long
distance international call to check on him. Please everyone just
keep praying for him!
Lisa
Simi Valley, CA

Hi,
You and your family are in my hearts and prayers I wish you a speedy
recovery and pray that your pain is taken away. Love to you Lily
and Gareth and the rest of you family. I hope to hear from you soon.
Take care
Vicky (UK)

02/18/04
Joann,
I am so glad that there is someone near to me to talk to. I have a
morphine pump that Toledo Hosp. put in, by Dr. James. Our insurance has changed,
my husband works for Jeep, so now I go to the ST.V'S pain clinic. I actually
like it better there. They are so nice and understanding of your illness. I also
have a excellent Surgeon, Dr Patrick White. He has done surgery on me as well as
my 22 yr old son who has H.P. He soon will be doing the pancreatic by-pass on my
15 yr. old son who also has it.
I had mine done in 1983, the first in Toledo, 7 hrs. of surgery and a
month in the hospital. My sons took only 4hrs. and he was out in a week. They
found out if they do this surgery on us, the sooner the better because it causes
less pancreatic attacks and less damage. Mine was pretty well damaged when they
did my surgery.
I hoping that my children will not have to have a pain pump and be on so
much medication that your in a fog the rest of your life.
I was on Oxycontin so long that it now has paralyzed my intestines, so
there's another problem along with the migraines , fibromylsia, and other small
things. Oh I forgot the BIGGIE, DEPRESSION. Sometimes I don't think I can take
it any more, but then I look at my family and that changes your mind a bit.
If ever you need to talk, I'll be here and I will pray for you at church.
Sincerely A Friend,
Laura Kerste
jojo43566@... wrote:
Laura, I am also from Toledo, Ohio and I have just started going to the pain
clinic at St. Lukes Hospital after going to pain clinic at St Charles and the
fibromyalgia clinic at Toledo Hospital. I so far have found St. Lukes to be
a lot more aggressive on pain management not just giving me exercises and
occupational therapy. Those are useful but not if you are in terrible pain.
Dr.
Fowler is who I am seeing and I am seeing a psychologist that seems to have a
plan for me not just a broad plan for anyone with pancreatitis you want you
can email me directly and we could talk about it. I know all about family
denial. joanne

www.thepancreatitisplace.org

Hello, Barbara. I'm relatively new to the group, but your post
caught my attention. You mentioned that you are going to have
another ERCP? Since finding out that the ERCPs that I had to repair
a collapsed bile duct caused my pancreatitis, I am almost afraid to
have any more. I found that every time that you have an ERCP, more
scar tissue occurs and it can cause acute pancreatitis leading to
chronic pancreatitis. Isn't it amazing how procedures that are
supposed to help you can end up causing even worse problems? I
really hope that you feel better. Every day is a struggle, but we do
persevere. I admire the way that the people in this group support
each other. Looking forward to getting to know you better. From
Linda from Atlanta

Hi and welcome, Brenda. One of the hardest things about this disease
is trying to explain what this disease is, how it's going to affect
our daily lives, and why we're always in pain and sick a lot of the
time to our families and friends. If you say too much you can scare
them, but if you don't say enough they may not believe that you
really are that sick. I think that we want to protect the people we
love. It's hard enough for us to go through the pain. Maybe it's
harder for them to watch what we're going through. I hope that you
can find a median. After a while, I think we all just want to forget
that we're hurting and just exist. Good luck, you're not alone.
You'll always be able to vent, ask questions, or just spend a few
minutes across the net with people who know exactly what you're
going through. From Linda from Atlanta

Reminder Reminder from the Calendar of ThePancreatitisPlace
Hosted Chat
Wednesday February 18, 2004
7:00 pm - 9:00 pm
This event repeats every week.
The next reminder for this event will be sent in 23 hours, 3 minutes.
Event Location: AOL's TPP Chatroom
Notes:
This is a hosted chat in AOLs TPP Chat room. You need AOL or free AIM (www.aim.com) to access this chat. Email or send us a message for the link to the room.
ReeAnn@...

I haven't been in this very long, but I'm sending good thoughts Pat's
way. Take it easy, Pat. Tammy

Hi guys,
I haven't been posting much the last 2 days, I have been very busy
and not feeling well. I needed to get on her today and let everyone
know that Pat has notified me that he is ER bound! He was there last
night and they would not admit him becasue his A&L werenot elevated.
Needless to say he is back there now and I believe if I understand
correctly, thay are to admit him right away on his dr's order! He is
very bad off! His pain is way beyond anything he has suffered
before! I am so very scared for him! Please everyone, please start
praying feircly for him. I am very worried about him! I will let
everyone know how he is when I hear anything.
Lisa
Simi Valley, CA

Oh well, I don't have broadband, just dial up service, so mine might be

Also,
another way to check this is to keep a sent file an periodically check
your outgoing messages and see they are actually readable.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Pat,
no problem. I know Insulin used to be made from cow's and pig's at one
time, but I don't know how they got it out of the animals, so I don't
know if it was ever made from Mare's urine. Yeah, when I was first
diagnosed a diabetic, they didn't even have blood glucose monitors. We
had to use these awful test tubes with urine and these pills that
reacted to it. Then the color it turned would determine how high your
blood sugar was. I was diagnose diabetic in 1981.
I hope the cream the doctor gave you works well. Foot care is very
essential to a diabetic as gangrene can, literally, start overnight.
Such a sad thing to happen to that poor woman. I'm so glad that
diabetic care has gotten so much better and continues to get better all
the time. Hopefully, some day they will have a cure for that too.
Glad I could pass some usefully information along.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Denise,
I hope youare able to read this. I am very sorry that you are feeling so bad
that you felt you must leave us. I wish you could stay and let us give youthe
support that you so desperatley need right now. Please let us know if we can
help you in any way because you have helped so many of us. I hope you get this
message and know we all care about you.
I am wishing you the best
Lisa

HI all,
I hope everyone had a wonderful valentines day, you were all on my mind
and I'm sorry I wasn't online to wish you all a happy one. I did, but
it was somewhat belated. My brother came over this weekend and hand
delivered a dozen red roses to me and took me and my mother out to
dinner, which I was actually able to eat some of. He's such a sweetie.
Kimber
--
Kimber Allen
Vallejo, CA
hominid2@...
Note: All advice given is personal opinion, not equal to that of a licensed
physician or health care professional.

Sorry to hear about the depression. Maybe you should
talk to your doctor about it. Are you taking an
medication for depression? Maybe that would help
alleviate the symptoms.
I know the other drugs -- phenergan and percocet --
sometimes make me feel depressed and tired all the
time. But, there isn't a whole lot I can do about
that. I'm the same way, though, I cry all the time. I
try not to cry at work because I don't want my
co-workers to see me.
That's great you can work from home. That helps a lot,
I'll bet.
Take Care. Good to talk to you. Tammy

Laura, I am also from Toledo, Ohio and I have just started going to the pain
clinic at St. Lukes Hospital after going to pain clinic at St Charles and the
fibromyalgia clinic at Toledo Hospital. I so far have found St. Lukes to be
a lot more aggressive on pain management not just giving me exercises and
occupational therapy. Those are useful but not if you are in terrible pain.
Dr.
Fowler is who I am seeing and I am seeing a psychologist that seems to have a
plan for me not just a broad plan for anyone with pancreatitis you want you
can email me directly and we could talk about it. I know all about family
denial. joanne

hi laura, i greatly appreciate the information....i also have 2 sons 6 and 4yrs
old..praying and hoping they will not have to go through what..i never expect
would happen to me..had a some type of block that burned the nerve...last
monday...hadnt had a flare up yet...but actually feeling worse and worse
inside...w/ nausea , vomitting and pain. The doctors dont want to
help....anyways me babbling on again...take care and thanx u again..bren
Laura Kerste <laura_kerste@...
This is Laura From Toledo, Ohio. I am in kind of the same boat your in, only
my family knows that it's going to get worse instead of better. I have it , two
brothers ,two sons, and lots of cousins,nephews and so on.
My one brother that has it has a daughter who shows signs of H.P., but he
refuses to go and get the blood test to see if she has the bad gene that we do.
I think he's so scared that she is going to have it, but the sooner he finds out
, the better her outlook is.
We have a hospital here in Toledo, called MCO, it's a learning hospital,but
I've heard they have a excellent Pancreatic clinic with some of the best DR'S.
Unfortunately, we have insurance that does not cover that hospital. Mine is
getting so bad that they put in a morphine pump and I'm on Oxycodine for break
through pain as well as several other meds, and I ended up in the hosp. in NOV.
and in FEB..
Seems like everyday there is something new. Sometimes I feel that I just
cannot handle it anymore. Then I talk to my Phys, church,or any body that can
help me deal with it. It's HARD on EVERYONE in a family that has HP.
Good Luck and I hope you find the info. your looking for and that your
loved ones can see it in it's TRUE SELF.
Sincerely,
Laura Kerste, Toledo, Ohio
laura_kerste@...
"Patrick (Pat please)" <pcassotoo@...
Hello Brenda,
Your not alone with this one, many of the members of this site, and
lots of other sites too, report how their families are in denial or
more likely don't fully underrstand this illness.
If you think about it, very few doctors know anything about either so
your family members are in good company.
One thing to try is to get them to visit some of the hospitals that
have special departments there to deal with Pancreatitis.
Somewhere like Johns Hopkins Memorial or the Mayo clinic.
All you need to do is use GOOGLE to search for say "hospitals
specialising in Pancreatitis and hundreds of sites will be listed,
sometimes Thousands are listed instead.
With all those sites to choose from, there must be othersites with
good information your family can easily understand.
Often if family come here or to other sites like this, they are
scared to ask because most of the members are suffers and already
understand their disease, some don't and that's no problem either.
Or if you have a printer Linda, the Mayo Clinic has versions youcan
print out automatically using the minimum amount of paper and ink.
try it Linda at least.
Pat

Hi Brenda,
This is Laura From Toledo, Ohio. I am in kind of the same boat your in, only
my family knows that it's going to get worse instead of better. I have it , two
brothers ,two sons, and lots of cousins,nephews and so on.
My one brother that has it has a daughter who shows signs of H.P., but he
refuses to go and get the blood test to see if she has the bad gene that we do.
I think he's so scared that she is going to have it, but the sooner he finds out
, the better her outlook is.
We have a hospital here in Toledo, called MCO, it's a learning hospital,but
I've heard they have a excellent Pancreatic clinic with some of the best DR'S.
Unfortunately, we have insurance that does not cover that hospital. Mine is
getting so bad that they put in a morphine pump and I'm on Oxycodine for break
through pain as well as several other meds, and I ended up in the hosp. in NOV.
and in FEB..
Seems like everyday there is something new. Sometimes I feel that I just
cannot handle it anymore. Then I talk to my Phys, church,or any body that can
help me deal with it. It's HARD on EVERYONE in a family that has HP.
Good Luck and I hope you find the info. your looking for and that your
loved ones can see it in it's TRUE SELF.
Sincerely,
Laura Kerste, Toledo, Ohio
laura_kerste@...
"Patrick (Pat please)" <pcassotoo@...
Hello Brenda,
Your not alone with this one, many of the members of this site, and
lots of other sites too, report how their families are in denial or
more likely don't fully underrstand this illness.
If you think about it, very few doctors know anything about either so
your family members are in good company.
One thing to try is to get them to visit some of the hospitals that
have special departments there to deal with Pancreatitis.
Somewhere like Johns Hopkins Memorial or the Mayo clinic.
All you need to do is use GOOGLE to search for say "hospitals
specialising in Pancreatitis and hundreds of sites will be listed,
sometimes Thousands are listed instead.
With all those sites to choose from, there must be othersites with
good information your family can easily understand.
Often if family come here or to other sites like this, they are
scared to ask because most of the members are suffers and already
understand their disease, some don't and that's no problem either.
Or if you have a printer Linda, the Mayo Clinic has versions youcan
print out automatically using the minimum amount of paper and ink.
try it Linda at least.
Pat

Thank you so much Patrick...i actually went to the Mayo Clinic...no hope for
pain relief there....but i will check into the John Hopkins Memorial..thanxs for
taking time to respond..hoping for a pain free day.
take care, bren