Huge archive

Hello,
Welcome to TPP. This is a place where we all share our heart felt stories,
concerns, and asking questions about this disease in hopes that we will be able
to comfort and lean on one another. Finding answers to our questions, as well
as understanding, making our lives easier to live with this harsh disease. We
welcome any, and all questions through post and attending chat on Wednesday,
and Sunday. I am grateful to the many folks that I have met, and the support
that I have found here. So, Please tell us a little about yourself and how
pancreatitis has affected you and your life.
Welcome to The Pancreatitis Place. If any of us can help, or offer support
please let us know.
Loretta in Oklahoma

Hi all,
I've been offline for the past three days. I had a bad day Wednesday,
and Tuesday I had an errand I had to run after sleeping late and then
yesterday I had a monster bad day (but not pain wise). I've been trying
to get my medical records sent to Metlife for my Long Term Disability
Insurance and have been having the worst time. My medical insurance is
Kaiser. First, Kaiser said they never got the request for my records. I
had called the Business office. Instead of passing me on to the
department who handles medical records requests, the lady decided to
research it herself. It took two weeks for her to get my medical
records. Then she said that their office didn't handled LTD medical
record requests, and that the Medical Secretaries did and she sent them
my file. I called Medical Secretaries and they said they don't handle
LTD medical records request either and that they had never gotten my
medical records file. They said Medical Legal Correspondence department
handled LTD requests. So I called them anda they said they never got my
request and that they didn't have my file either. So I called Metlife
and had them fax a request for the records with my authorization form I
had signed. I also called the Business Office and told them that they
had better find my file since they were the last ones to see it. They
said they would talk with Medical Secretaries as they had sent it to
them an they'd call me back.
Metlife sent the fax, but Kaiser said they never got it. I confirmed the
fax number with both Metlife and Kaiser. It was correct. So I had
Metlife fax the letter to them again on Wednesday. Kaiser never got it.
So I had Metlife fax the letter and authorization letter to me on
Thursday so that I could hand deliver it to Kaiser. I got the fax.
Meanwhile, I still hadn't heard anything from the Business Office.- the
last time I had heard from them was 2 weeks ago when I asked them to
find my file. So, yesterday I wwent to Kaiser and hand delived the
letter and authorization form to Medical legal. They said they had
gotten the fax from Wednesday and they were only waiting for my file,
which was listed as still being with the Business Office. So I walked
over to the Business Office to find out what was going on. I spoke with
the manager of the employee I had previously been working with and she
tried to pass me off with the "I'll call you later with what I find
out". I spent 15 minutes on the phone telling her I wasn't going to deal
with her calling me back as I had been told that for the past several
weeks and I was no longer willing to wait for a phone call that I would
never get, and then I threatend to come to her office ans search for my
records myself. At that point, she searched their office, and the files
weren't there, so she call Medical Secretaries and had them search their
office and found out that they had passed it on to the Medical Legal
Correspondence office. To make sure the files were their, they sent a
clerk to physicall check that the files were there. Yep, the files were
their, the people I had spoken with first just hadn't been willing to
physically check for the files when I had talked to her. So, finally
they had located my files and they were where they belong (and had been
there all along for who knows how many days/weeks). They promised to
send my record out by the end of the day. I'll be calling on Monday to
confirm this. By this time, it was Noon and I went to take the bus
back home (I don't have car and my doctor's office is 1 1/2 hours from
my home by public transportation). I then had a cab take me to an ATM to
get some additional funds since it would have taken forever if I had
done that by bus and end up getting stop by people who were repaving the
street and couldn't switch lanes to go by another route because we were
boxed in by other cars. We were stuck there for quite some time. I
finally got to the ATM (it would have taken less time to go by bus the
pavers took so long to let us pass) and then had the cab drive me to a
place to get a sandwish for lunch and then drive me home. By this time
it was 3:00pm. I was so tired that I took a nap after eating and didn't
wake up till 4:00am today. Grr what a bad day it was. Sorry for the
venting, but I jst had to since it had been such a bad day! Not to
mention that the stress didn't help my pain any.
Hope you have all had much better days than I did yesterday.
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.

Hello All,
As much as I try, I can only seem to get here about once a week. The
kids have me so busy that I am really starting to understand the
term "Mom's Taxi". Between batons and girl scouting, and the little
one will add teeball to that in the spring, life is crazy! I still
do get to read the posts about once a week.
I am not sure who wrote about the 3rd ERCP, but here goes. As most
of you know I am the #1 cheerleader for my husband Joe who suffers
from this terrible disease. He has had a total of 12 ERCP's since
2001. Many, many stents later, he is actually stent free right now.
He has gone for up to a year with having them put in and removed. I
do believe that the duct can close that quickly, because I have seen
it happen first hand with Joe. Last year part of what started his 8
month CP attack, was exactly that. He had a stent put in, in August
of 2002, and the removed in theend of Sept. With in 3-4 weeks the
bile duct had once again closed, due to a narrowing at the end near
the stomach. Once the Dr's found that his blood tests where off the
chart, they went back in and placed another stent. He went through
having them replaced from then until this past Sept. We are told
that his bile duct is resembling normal now, what ever that means for
him. We know that it is something that can happen again at any time,
and he has a liver function panel done every month now. That is the
best way for his Dr's to find out if a blockage is starting, for some
reason, it always shows there first. I would not take a chance on
waiting as I have seen 1st hand what a liver blockage can do. Joe
has seen the worse of it, with jaundice and vomiting, at one point I
was told that if he had not had the ERCP done, he would not be here
today. I have to say that if you trust the DR, then go with what he
says, if not find one that you do trust. Please let me know what
happens.
Shannon, I hope to make it down that way sometime in the Spring, I
love being in Maggie Valley. My grandparents use to live in Canton,
and I would spend the summers with them when I was little. It always
feels like I am coming home when we get there. I still have alot of
family in Canton and the surrounding areas. I can't wait to get back
there. So maybe I will see you in the spring.
To everyone one else, you are in my prayers every night, and I think
of you often. I am off to bed, I have a busy day tomorrow, the girls
are in a holiday parade with thier scout troop. I do have to say
that the one thing I keep thinking of is this time last year, when
Joe was in the hospital and I was not sure if he was going to make it
or if we would have a Christmas. I am so blessed to have my family
together at this time! We have come along way, and I have to say
that the only reason I made it through all of that, was I had all of
you here to lean on. I could never express what that meant, and
means to me!
I am wishing everyone a very Happy Thanksgiving!
L,
Jenn

Ree Ann... by mom has that....... and it's very painful for her and she
won't take her nexium like she should to help things go down easier. She
eats fast, too. I keep telling her to slow it down eating. For some
reason... eating rice and lettuce really aggrevate the situation and will
surely make her throw up! She's had the dilation 5 times now and
getting ready to have another. She calls it........... stretching her
throat! i know if she took her nexium llike she should... her problens
would be a lot btter. right now she takes about 11 differeent pills a
day for various problems and is forgetfull to take even those
with a 7 day a week helper ! She's stubborn and won't listen to
those aroun her tthat love her! If you have any more info on thisl.
please let me know. i sure would appreciate it. love, ja n xoxoxox

Hello Again Everyone,
I received the following from another group I belong too and I thought I would
share the information:
Subject: Amazing Medical Stories
The Global Health Network along with LMNO Productions (The Learning
Channel) is interested in talking to you about featuring someone on
their "Amazing Medical Stories" program.
LMNO Productions, in Encino, California, is beginning production on
the third season of the popular Learning Channel series ³Amazing
Medical
Stories.² The series will premier in 2004.
³Amazing Medical Stories² is a reality series that follows the lives
of people with rare and surprising medical afflictions and documents
the remarkable medical treatments that are used to cure them.
The type of stories we are most interested in telling are those in
which the medical condition or injuries are severe and the medical
treatment is complex and sophisticated. In other words, the more
amazing, the better. We are especially looking for stories where the
medical treatment or rehabilitation is still in progress.
In addition, it is helpful to the telling of our stories if there is
video of the surgery or medical procedures. In the absence of such
footage, and in the case of a great story, we can use x-rays, photos
or other medical imagery.
³Amazing Medical Stories² is an inspiring celebration of the winning
combination of science and human inventiveness over illness and
disease featuring the amazing work of the physicians and others who
treat these people.
³Amazing Medical Stories² is produced by LMNO Productions for The
Learning Channel. Eric Schotz and Bill Paolantonio are executive
producers. Bob Niemack and Ruth Rivin are co-executive producers.
If you are interested in participating in the show please send me an
email message with your story and contact information.
David Hughes
Founder
Global Health Network
http://www.GlobalHealthNetwork.org
E-mail: dhhughes@...
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

Hello Everyone,
First I would like to welcome Lesia to ThePancreatitisPlace. You will not find
a better group of people anywere, who really know what it is like to live with
this dreaded disease. And we all are so very supportive of one another. Please
feel free to post any questions/concerns you might have. With in the group, I
am sure just about any possible test or scenerio has been experienced by at
least one of us.
Now as far as pain meds go.........
Both doctors are still refusing to help. I have one vicoden left and know I
will not make it through the weekend with just one. Pain management needs to do
a screening and contract before they will prescribe anything. I have no
objection to doing either. Will gladly do it both of them. Pain management did
not offer me the opportunity to either, until one of the calls this morning. I
have been told it will be scheduled. I have an appointment for Monday at 11
with the Pain Clinic.
Also as a side note: I got the results of Friday's GI Mortility test this
morning. It indicates I have "Nut Cracker Esophagus" that is contributing to the
swallowing problems. I don't know what if any treatment the GI will offer for
this condition. From what I could find out on the web, the optins are
anti-aic/reflux meds (on them already because of the enzymes), dilations (have
had 3 already and still have problems), surgery or just leave untreated. It is
extremely painful when food gets stuck in the esophagus, with pain radiating up
to my ears and down towards my hips. This is called "referred pain" meaning you
feel pain elsewhere from the cause. Not only do I have all the usual problems
with food from the pancreatitis, I also have trouble getting that food in me to
begin with...... Can win for losing..
Anyway, enough complaining for one day. I will probably end up in the ER before
the weekend is over. Will send a message if I do.......
Keeping everyone in my thoughts and prayers!!!
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

Lesia,
First I'd like to Welcome you to The Pancreatitis Place... even though I am
so sorry you have had to come looking for a support group such as ours because
that means you are having to deal with this dreadful disease.
Thank You for sharing your story with us. Its important that we do share our
experiences with the disease, and life even. We are a fairly close knit
community and hope that you will fit yourself right in. We have the room and we
welcome the company!
I know you will get lots of posts soon, please let me know if there is
anything that I can do to help you in dealing with site issues or email
problems.
(or you can contact MsReeAnnBetts@...) Thank you again for joining TPP and
WELCOME!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place

Carolyn,
SSA is a very rough course to ride, but you just have to hang in there. It
took my mom a long time to get hers, but we got it... without an attorney too.
I represented her. We fired the lawyer after he told her not to appeal
because they would "just turn you down again anyway most likely". Boy was he
wrong. And I made sure I rubbed it in his face too. (He gets his hair cut at
the
shop that I used to work in.)
As far as your prescriptions go, have you gone to the local department of
social services and applied for General assistance or SSI (different than SSD)
If
you qualify for help with either of those programs you may qualify for your
states medicaid program and that will pay for your medicines. (and your
co-pays for docs offices too) Especially if you have any children under 18 in
the
home.
I hope that this will help some and I'm sorry I didn't Welcome you properly
to the group. Welcome!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place

Hi everyone! I hope this finds you all on a good day! I am Lesia
(like Lisa) I live in TN. I am 28 and I have chronic pancreatitis and
ulcerative colitis. I have had cp since thanksgiving day 2001. my dr
and I think I got it from having to use steroids so much to control
inflamation in my colon. But anyways...I have it and I dont think it
is going anywhere. When I first got sick I did not have insurance so
I had to "tough" it out for a month until I could not take it
anymore. I went to the ER at UT hospital and I remember filling out
my papers and going back to see the dr...but anything past that is a
big blur. I woke up the next day in a hospital room hooked up to a
morphine pump! I was scared I was dying. I was in so much pain..they
ran test after test. I was there for almost 5 days and I called my
gastro (he was at another hospital..we had to got to one that would
see me w/o ins. -but luckily hubbys insurance kicked in th minute I
went in!) My gastro suggested i come there. They had stopped giving
me pain shots and pills at ut and I was hurting bad..I checked myself
out and went to parkwest. They had me do another set of long drawnout
tests and I can remember watching A CHRISTMAS STORY on the tv there.
I was released the next morning well hydrated with a script for pain
killers & a morphine hangover. But things finnaly were going
better..I was on clear liquids and I had lost 30 some pounds..I was
down to 95 lbs...My gastro at that time thought that taking out my gb
would help stop the cp episodes, but it did not. I still have the cp
pain on and off. I am not with the GI that told me to leave UT
because he refused treatment for me...told me to go to my pcp!!!
lol...and he looked at me like I was crazy, and said your kidding
right?? I am now trying to sue my last gi. The next gi told me I
had liver damage and crohn's, I am no longer with him. I am with the
one that diagnosed it the 1st time (at UT) I am so sick of being sick
and dr's trying to find out what's wrong. I guess they sould learn to
listen to their pateints and not try to show us how smart they are by
ordering expensive tests...well, I am exhaused. so I am off to bed,
but I am happy to have found a nice place to chat with others that
understand me. God bless,
Lesia

Has anybody had puestow surgery? If anybody has an info please email
me. PoppysMakayla@... I hope to hear from someone.
Thank You
Bruce

Hi ReeAnn,
I had to agree to a social contract with my primary care physician
stating that I would not abuse, etc. I was a simple contract stating
what my disease was and where I would be filling my prescriptions
(store or hospital). It was simple and not intrusive. My PCP knows
about my past use of drugs (non-prescript). This is a new thing. As if
they have one that you would be more than will to enter into. It just
lets the other doc's at her practice know what is going on if she is
not there, ie. my CP and the surgery I had. I think it is great it is
a very good protection for her and me. I don't currently have a copy
but I feel if they have a good office manager that is up on things
he/she could have one written up really rather quickly. It is just one
page.
Walt

Once again the oxxy, hydrocodone, etc. has scared the doc's out of taking
a chance with prescribing it. A few months back i could go to Target,
kmart, Walmart, Eckerd's and all the well known pharmacies. I
was informed by all of them that theh would no longer fill those drugs
because of all the robberies and the high mal practice insurance,,
Finally.. the last time at the hospital i asked my friend who has
pancreaatitis where he got his med's because i was informed that mst all
the pharmacies refuse to carry it. Now i travel 45 minutes to a
small independentlh owned pharmacy who stocks these opiods we need.
And with the pain mgmt places and the pharnacies...... you do have to fill
out all kinds of paperwork to protect yourself and the pharmacy. If
you have a problem with a med..... if you have side effects of any
kind..... it is requited by law to have an appt with the doc as to
show that you saw the doc.. and changes HAD to be made. My pain doc
requires me to bring in all my pain bottles when i go so he can count
just what i've taken. If i forget............ too bad.... i have to go
back and get the bottles to show him.. so he can note it iin his
file. You might want to ask him about changing your oxy to morphine
sulfate. MSIR... immmediate release 30 mgs that lasts from 4-6
hoour in stead of the 8 hour morphine exten ded relese whicn
costs 500.00 foorr 1 mmonthh supply, The extended release
doesn't always digest... but the immediate release does if you drink a hot
drink with it like hot tea or coffee.Keep asking around for people in
your similiar situation. When i went from oxxxy to morphine..... the side
effects were virtualy none compared to the oxy. My pain doc
sid that onlh 1% of morphine users become addicted.... and don't worry
about thaat! I hope you get some good results. Oh yeah... the
MSIR #30 taken 5 times a day for 1 month suuupply onlh costs
$55.00!!!! That's 150 pills for $55..00 A huge difference1 Aay other
questons??? let me know i'll try and help out. love, jannn
xxoxoxoxoxoxooxxoxoxoxooxxo

Hello Everyone,
I am in desperate need of advice. I am hoping someone here will be
able to help me. Here's the situation:
On October 3, 2003 I had a fluero celiac block performed at the pain
management clinic. For the first several days I was VERY sick form
this procedure. A lot more pain than before it and nausea was
unreal. During this time the doctor on call wrote me a prescription
for Oxy 5s. And setup a followup appointment for Oct 17th. Prior
During the appointment on the 17th, I asked my doctor if he will be
handling my pain meds from now and renewing the Oxy 5s. He said
yes.
On November 10th I started trying to refill the prescription for the
Oxy's 5. I called in the refill to my drugs using their automated
phone system. The next day I went to pickup the 2 rxs I had called
in. Only the other one was ready. Was told the doctor had not
called back yet in the Oxy.
Meanwhile I had an appointment on Wednesday with my PCP to followup
on the body temperature regulation problems the same week. When we
reviewed my medications I told her that the pain management clinic
will be handling the Oxy 5s instead of the vicoden I had been on for
3 years.
Thursday I called back to the pharmacy to find out if the Oxys had
been called in. Then I was told I would have to bring a physical,
written RX to get them refilled. So I called the Pain Management
Clinic to get this done. Was told the nurse would have to speak with
the doc.
On Friday, I called back again and was told they were not going to do
it. That I didn't have 'that kind of relationship' with pain
management. That it requires an appointment, a contract and an
evaluation. The nurse was unwilling to schedule these things for
me. Once again I was told she would speak with my doc on Monday - as
he was not in on Friday.
Also on Friday I had a appointment for a GI Motility test. Tube
through the nose to the stomach - while awake - to look at the Fundo
sugery site where I am still getting food (and pills) stuck. I had
had 3 dilations at this site before and think they are now
considering surgery. Anyway, I got dry heaves with the tube going in
and dry heaves with it coming back out. And it really flared up my
pain bad. Worse it has been since I recovered from the block.
I finally called Pain Management back on Tuesday, as I hadn't
received a return call and fastly running out of my pain meds. Of
course I got the voice mall system instead of a real person. On
Wednesday (yesterday) I called back again. This time I was told
AGAIN that pain management was not going to help me at all. So I
called my PCP's office.
Talked to a secretary and she told me to leave a message on the RX
refill line. So I did leave a detailed message explaining what is
going on. Late yesterday the nurse calls me back and says my PCP is
not willing to do it because pain management isn't willing to
either. Felt like I was being treated like a drug-seeker for the
first time with this $#^%*(# disease. Talk to the nurse at the PCPs
office again this morning, again telling me because pain management
won't do it, neither will they!! Don't think they have even called
pain management like I asked them to get this straightened.
Meanwhile I am left high and dry with no help from anyone.
Anyone have any suggestions on what I should do??? I think the only
option left to me is the ER, but don't want to do that unless I have
too..... Please Help.

Shingles; how horrible. That is one of the most painful out breaks
one could have. If it is any consolation, you can only have it
once. I hate taking anitibiiotics; always leaves a whole host of
other things to play with. Thank goodness your still bitching; that
is a very GOOD sign. Feel better soon and keep on bitching (your my
kinda gal)
Christine

This is just my own personal experience so please do not take it a medical
opinion. I have noticed and also the GI Dr. I recently saw at Cedars Sinai
Hosp. mentioned this. When I am having alot of pain from the pancrease (I have
pancrease divisum) my body temp goes up to as much as 101. This is something
that is normal for me and I notice that the fever gets higher when I am in the
most pain and having the most syptoms, like diareah, nasuea, ect. When I am
pain and symptom which is very rare my body temp stays normal. Maybe ask your
GI dr. if this a normal occurance when you have panc. problems. Like I said
this is soemthing that I have noticed about myself and my GI said this is
common. HOWEVER, with your history I would certainly call the DR and tell him
that it is worrying you and get his advice. He may want to do more bloodwork on
you just to be sure. Maybe even if this is an option, do the bloodwork through
a different lab just to compare the results. Rememeber sweetie this is YOUR
life and you are the only mother your children have so it is your job to make
sure you do what you have to do to stay around for them. I am also the mother
of two small boys and I have to force myself to do what the Dr. says about diet
and meds and testing just so that I know that I did what I needed to do for
them. I know I have days when I think, if only I didn't have kids, I could just
roll over and die. But those are the times I look at those sweet faces and tell
myself no matter what I WILL be around for them. Anyways a phone call to the
DR. is free and it may be all you need to set your mind at ease, so please, if
not for yourself but for your family, call the Dr. and let him know about the
temps. and make him be responsible for the answer he gives you. If you are
anything like me you don't want to make the call because you are afraid he might
put you back in the hospital and take you away from home. Well a mom in the
hospital is better than no mom at all. PLEASE make the call.
Lisa
Simi Valley, CA

Hi Denise, Kimber, and others,
This is Maria. I've been home from the hospital for a few weeks. You know that I
was in the hospital and almost died with a 108 degree body temperature due to
sepsis and pancreatitis. I don't have my mediport anymore. The doctors took it
out when my temperature went up to 108 degrees. I have a question for you.
I've been home from the hospital for a few weeks. I am still running a
temperature from 95.5 to 100.9. My temperature has been running in the hundreds
for the last few days from 100.1 to 100.9. I am nauseous. I have some pancreatic
pain. Before I left the hospital this last time blood cultures were ran on me.
They came back negative. Do you think I should ignore this 100 degree
temperature or do you think something is going on in my body which is giving me
a high temperature? I'm starting to get nervous due to the fever. Give me your
thoughts. What would you do? I hope that you are all feeling well.
Maria

Didn't catch your name. In addition to chronic pancreatitis, I have
autoimmune liver disease, specifically autoimmune hepatitis (AIH). There
are many different liver diseases and your labs have shown sufficient
elevation to warrant someone finding some answers for you. I notice you did
have a liver biopsy that didn't provide a lot of answers. However,
sometimes liver disease is not so easy to diagnose. In my case, my liver
biopsy done in Dec 02 revealed a pretty clear cut case of specific markers
for AIH and damage to my liver already at stage 3 fibrosis (with stage 4
being cirrhosis). I see you have been seen by a hepatologist, but perhaps
you should seek another one. I would think that another liver biopsy might
also be warranted because perhaps the damage has progressed enough now to
show something in the liver biopsy. I'm not a doctor, but I do know that in
my case, without treatment the ten year survival rate for those with my
liver disease (AIH) is only 10%! It is not uncommon for liver disease to go
undiagnosed until you are already in the advanced stage of cirrhosis. At
that point, your only hope for survival is a liver transplant. I thank God
every day that my previous GI finally did the liver biopsy on the liver that
he kept insisting was 'perfectly healthy' - despite liver enzymes going as
high as 20+ times the normal rate. You might want to think about joining

Shannon
thanks for your answer, I need some time to remember that I'm not
crazy, my doct said that he think almost impossible that my duct
closed in such a short period of time, thanks for let me know it can
happened, I have a question what do you mean by "The problem with a
stent is if it does not pass on its on then you have to go back and
have them remove it."
You are write I have to educate my self more and more the problem is
when you go to the doct and you have to tell him what is wrong with
you, last time I did that and my doc make me fell like I was trying
to have pancreatitis. like I want to have this.
they move my ERCP to dec. the nurse didn't know if I need anesthesia
or not!!!... an the Doct is on vacation.
Besos...

I've been upset since yesterday. Social security Dis. turned me down
for the 2nd time. Now I have to get a lawyer and go after em. I
have been writing for records and stuff. I have insurance but each
perscription is 30% copay and I have 13 perscriptions. I can't
afford that. I can't get no help, I've tried. One month of meds.
left then I don't knw. The social worker is workin on getting it
from company, but not all are available. You get tired of fightin ya
know. After what I've been thru ya just get tired.
see ya later,
carolyn from Ohio

I'm going to have my 3rd ERCP next Monday, I have SOD. they cut the
muscle (sperectomy) 3 months ago, I had really good months and then
the pain came back, all my blood test had been ok always so... "I'm
crazy" "I'm making the pain" my doctor say that he can't believe the
duct is closed again, so he is doing the ERCP just to see what is
happening and if is closed he is going to put an stent.
You think is normal to the duct to closed in short period of time?
I hate doctors, I hate the felling convince them that I'm really
sick, that is not my mind, that is NOT depression.
Besos..Ale

Message 1 of 6 Subject 29 of 50
Subject: Gospel Weight loss pill you say not take.
Date: 11/7/2003 3:11 PM Eastern Standard Time
From: Heartforgrace2
MsgId: <20031107151144.10446.00032646@...
My best friend got this out of a book she is reading. I thought it
was really cute so I will share it here. The directions say to "take"
it three times a day, once before each meal.
I do not desire to eat so much that I continue to be overweight. I
present my body to God, my body is the temple of the Holy Ghost which
dwelleth in me. I am not my own. I am bought with a price. Therefore
in the name of Jesus, I refuse to overeat. Body settle down in the
name of Jesus and conform to the Word of God! I mortify the desires
of my flesh and command it to come into line with the word of God.
Romans 12:1 and 1 Corinthians 6:19
*precious*

Rob;
I always feel discomfort in my back; just below the ribs and gets
tighter up to my shoulder when my panc flares up. Sometimes it
feels like a c-clamp is attached under my arm squeezing. I hope
things go well when you see your physician this week. Let us know
how your feeling.
Christine

Wonderful; lets hope your GI doc sets that young intern straight.
They need to understand that no matter how many text books there are
in the world there are NO people or the conditions they have that
are TEXTBOOK. Everybody is an individual; not a diagnosis or a
chapter in a book!!
Christine

I know~~~ it's been a llllllong time kiddo. I've been keeping track of all
your travels and procedures. Do you ever wonder~~~ when is this all going
to end???? The dizziness can be caused by lots of different things. For
me.... it's the pain med's. Also your electrolytes could be at an all time
low. They make a pedialyte for adults and it works beautifully. You weight
loss could be depleating your electrolytes, too.. What has helped me
tremendously is drinking BOOST! I drink 4-5 a day. One can gives 25% of all
vitamins and the flavors are tasty. One trick i found is refrigerate them
upsidedown .. so the heavier nutrients settle at the top when you drink it.
Shake them well. I also have mixed the boost with ice cream... fat free of
course..... what a treat! Especially the chocolate and chocolate mocha!
Here's another something to watch out for~~~~~ swollen feet and legs! If
this occurs... you desperately need blood transfusions. When my feet and
legs became swollen.... there were sores on both legs and feet.. Big red
splotches. All this went away almost immediately when the transfusioin was
over. I had 3 units. The doc's were really surprised that all these
problems went totally away..... just from the transfusions. Drink tons of
water....... NO SODA
if you take XANAX do NOT drink grapefruit or grapefruit products. It's
very harmful to the composition of the xanax. While you are there.......
REMEMBER..... do NOT allow the doc's to give you the antibiotic
vancomyicin. Again... some of the worst side effects that happened to me
are the loss of sight... totally~~~~ the total loss of hearing in my right
ear......... and loss of hair...... it all fell out! Believe me.... you
don't need these added problems. It would certainly help if you coulld keep
just ONE doc instead of multitudes of idiots taking pot shots at you. jI
pray for answers for you..... you will survive this...... i know. I love
you, Denise..... i'm always thinking of you..... sending positive thoughts.
love, jan xoxoxox

My GI doctor, who readily admits that there are too many truly bad
physicians out there, recently told Ed and me the following story:
He was called into the ER to consult on a case. The patient had
presented with classic chronic pancreatitis symptoms including severe
RUQ pain. And a CT scan indicated pancreatitis.
When he advised the intern to admit the man, he received the
following reply, "But why? His amylase and lipase or normal."
My doctor, who teaches at a prestigious New York City medical school
wanted to murder the idiot.
So, as so many of us know, the morons are still not getting it
when it comes to enzyme levels.
Grrrrrrr......
-Ellen

Denise,
that isn't good that you have been passing out and I can see why neither
you , nor the second doctor understood the first doctor's recommendation
of kaopectate for passing out. I don't either. I hope you get to the
bottom of why you were passing out and that it can be fixed fairly
easily. You'll be in my prayers that things clear up soon. Keep us
updated as to what happens and if they give the passing out a specific
cause besides dehydration.
Worried about you,
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 Rob
Yes, that is one thing that I remember most from my acute attack a couple of
years ago and from the few flares I have had since. The pain seems to go
right thru you and up under your shoulder blades. Not too uncommon. Hope your
new doc finds the real source of your problems.
Pam in Santa Clarita CA

Rob,
it is possible that the unexplained back pain under your shoulder blades
is pancreatic pain as several of us have had similar pain. According to
several sources, pancreatic pain can radiate into the back, so what your
current doctor suggests is possible. Pancreatic injuries can lead to
chronic pancreatitis. Check out the following website, where injury is
listed as a possible cause and see if any of these other symptoms seem
to occur to you.
http://www.hopkins-gi.org/pages/latin/templates/index.cfm?pg=disease1&organ=4&di\
sease=24&lang_id=1
If the link doesn't work, copy and paste the whole string, including any
that wraps to a second line. Feel free to ask any other questions that
occur to you and someone will get back to you.
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.

Dear {{{{{{{{{{{Rob}}}}}}}}}}}}}
First let me welcome you to ThePancreatisPlace. You will find people here very
friendly and always willing to help. I am sure someone will help answer your
questions. I don't know much of pancreatic atrophy, but will see what I can
find on the net for you and will send you a personal email.
I am glad you are going to see a GI soon. Is he/she at a teaching hospital??
Most of us see docs at teaching hospitals. Regular GIs are just not experienced
enough with pancreatitis. Where do you live? Are you near a teaching hospital?
I sure hope so. And I also hope your GI will be able to help with the pain!!
So hard to deal with it... We all need help easing the pain.
Sounds like your pancreas hasn't given you much trouble for a few years. If
this is the case you are very fortunate indeed. Really hope you get some help
with the pain from your GI.
Please keep us posted as to how you are doing and for sure let us know what your
GI says. Once again a heartfelt welcome!!
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

Hi Everyone,
This is going to be kind of short... I got out of the hospital Thursday
havent been able to eat or drink much since, I have passed out several times in
the last two days and I talked to the dr yesterday he told me to take Kaopectate
and call back this morning if things are not better. I don't know what was
supposed to be helped but I called and talked to a different dr. this am and he
said to come in right away and get hydrated.
He didn't understand the thoughts of the other dr eiter.
But anyway... I just wanted to let you all know what was going on. I dont
know if I'll have to stay or not but I'll try to keep in touch some how.
{{{HUGZ and prayers}}}
Denise
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place

I hope someone here can help me.
I have had "unexplained" back pain below my shoulders a few hours
after eating for the past 4 months. I've also lost 25 pounds in this
time and have very slow digestion.
I had a pancreatic rupture (injury) 21 years ago (I was 19). A
current CT scan shows pancreatic atrophy. My first, and second
doctor say the atrophy is from the old injury and not a problem.
My current doctor says the atrophy has probably been getting
progressively worse and causing the pain now. Anyone ever hear of
this? I'm seeing a GI specialist next week (finally!), but meanwhile
am going crazy.
Any help appreciated.
Rob

Hi,
I hope you get an appointment soon and they will finally be able to
sort you out.
Anyway here is my story. My partner had his first attack in July
2000
and was in hospital for 4 days nill by mouth and while he was in A&E
his was diagnoised with AP. And that was pretty much that he was
sent home with no follow up appointment. It took him awhile but we
thought he was all better. Then in August 2001 he had another attack
which put him back in hospital and again he was NBM for 4 days until
all his bloods were back to normal then he was given soup no problems
there then someone gave him chicken curry (I know sharp) and then 24
hours later he was having a full blown attack. Only this time it
wasn't getting better. His bloods weren't getting any better. They
fed him on TPN until his veins packed up then by Hickman Line until
that got infected then by a central line which in time got an
infection to. Then the finaly fed him though his nose (NJ tube).
When things started to go completly pear shaped they got him a bed at
the Middlesex his albumen levels were only 16 and they should be 30-
40 this meant he was swelling up, so much so that his legs were so
swollen that he couldn't walk and they thought that they were going
to split also his CRP Marker was 600+ (should be 1-5) his white cell
count was 43+ (should be around 11). He also had a spell in ICU. His
temp was 41+ and his pluse was 240+ and his blood pressure was all
over the place. They told me that the next 4 hours were touch and go
and that he might no make it. Then they put 5 drains into him 1 into
his chest as he could breath properly as had a collapse of the left
lung due to all the fulid on his body and the other 4 were put into
different places in his tummy (panc, LUQ, and caverity) and over 4
liters came out in 1/2 hour. But this is why I have nothing but
praise for the Middlesex they got him though this and home. Ok it
meant he had 7 months and 1 day in hospital they think he had over 10
different attacks.
We have found out that he only has about 2cm of the panc which in
time will burn its self out hopefully, left he is inulin dependant
but he is home. He will be under the care of the Middlesex for the
rest of his life but at least he has one.
I hope you are getting your pain under control, if you need any info
on how to get there just let us know I think I must know every
possible way to get there.
Take care and keep smiling.
Vicky

I'm going to have by-pass surgery @ OSU hosp. I have med surg
consultation on monday. This new doc was very nice was familiar with
chronic pancreatitis, is going to do a lot of testing and did a lot
of bloodwork today. He seems through and I like that. He is going
to change some of my meds. I just opened up like I did on this site
and told it all. It really helped. I feel good about this new doc
and I like him. Not looking foreward to surgery, but I want to move
without pain and I want to walk without pain, and live without pain
an much as poss anyway. He understood IBS really well colitis I've
had some Docs ask me what IBS was. I tend to get scared if they
don't know. Tomorrow I have to make a very special birthday cake for
little billy who will be two, pics on my journal I posted link on
this group on this site. I'll be putting pary pics on to the journal.
Looking foreward to reading more of your postings later.
see ya
carolyn from OH

Hi Jeannine,
Does anyone know what happened to the SORCEP Pain Group? All of a sudden I just
stopped receiving mail. Did it fold up?
Thanks,
Jerry/NC

My English major daughter might have a stroke at my horrendous grammer!
Although I'm sure all of you guys are willing to overlook the errors!
You guys are the greatest. It is so sweet of you to think of me when I know
things are not going so well for many in the group. My fluid retention is
down today. I weigh 171 right now, so I'm down 6 lbs from yesterday! I
still don't feel that great, but I'm a little better. The thing is that I
can be okay and actually feel good until I eat. Sometimes I can eat things
that you would think would be horrible for someone with cp and have no
problems at all. Other times, anything causes problems! It's hard because
when I start feeling a little better, I get hungry, but then a lot of the
time when I do eat, I end up regretting it major!
Jan,
I'm sorry that you are having such a tough time putting weight back on.
Even though I've never been anywhere near where you are, when my weight
dropped to 155, my doctors were telling me that I absolutely had to eat and
that they did not want me to lose another pound. A lot of that was because
my blood work was so bad. My wbc, rbc, hct, hgb, total protein, calcium,
albumin, and globulin were all low. They thought it was from my diet.
However, once they found out I have liver disease and started me on
prednisone for the autoimmune liver disease, my blood work returned to
normal for the most part. It ends up that even though diet and malnutrition
can play a role in those blood counts, that's also a sign of a liver that is
not functioning properly!
As for my weight, I'm not really concerned about it from a 'getting fat'
point of view. It's obvious that the weight is from fluid and not my diet.
When my weight is up, my legs look awful. The pitting edema is so bad that
a young child might enjoy making shapes in my legs, much like with punching
your thumb in play dough or clay! I just don't understand how my body can
accumulate so much fluid so fast and then drop it so fast, as well. I mean
going from 177 to 171 in about 16 hours is some major weight loss! Oh,
well, at least it's going down again.
Thanks so much for thinking of me. All of the members of our group are in
my prayers daily.
Karen W

ReeAnn,
Just a little note to hope that the test went/goes! ok (bit confused
about the time difference again!) and let us know how you got on.
Denise, hope you are doing OK,
Lots of gentle hugs to you both and everyone else too,
Shelley x

Hi everybody...Jeannine Here. I haven't posted in some time as I have
been very busy on my chronic pain lists, but I could not let this
pass you guys up. Read Deb's letter and maybe sign up at
chronicpainstories and see if the stories don't get you all fired
up ! EVERYBODY in chronic pain, regardless of the source of that
pain, needs to write a letter for this....
If you want to be more informed along the way you can join

One trick that wworks for me is NOT etting on the scale
everyday............ but just onnce a week. I haave the opposite
problem from yooou and thaat is ii fight too keep weight on. I
weighh 100lb now annd struggle tooo keep eachhh oounce on. i am
5'''9'' tall annd pitifully thin.......... u nhealthy then. If i
loose more........... i have to go to the hhosspital....... NO
Waay
every 1 hoooour. This keeps the metabolism regulated and yoou feel
really good. You will not gaiin weight by dooing this.... a medical
fact! Eaat slowly and avoid soda,,, and fruit juice... and easy
on the dairey products. One eggg a daay is the maxx!Donnn't
concentraate on your weight... but positive things. Keep your thoughts
up! this helpss aalot,, too. ihope this helps yooou. love, jaaan
xxoxx

Hey guys,
I'm really sorry I've been neglecting the group, but I just cannot seem to get
back to feeling better. My pain is pretty much being kept to at least the
tolerable level with my oral meds, so that is good. However, I just frankly
feel like crap! Just before going in the hospital, I was finally losing what I
figured was mostly prednisone weight. I had gotten to an all time high of 172
lbs from an all time low in January 03 of 155 lbs. The 155 was a couple of
weeks after I started the prednisone and I think it was because I was so
nauseated and had that horrible metal taste in the back of my throat from the
prednisone. The first month I was on prednisone, I had to just force myself to
eat. I know, I know, I probably should have been thankful for that problem
since prior to weight loss surgery in Dec 2001, I had battled my weight my
entire adult life. Anyway, 155 lbs was really a little lower than I even wanted
to weigh. I am 5'9" and rather large frame for a woman, so I really think the
perfect weight for me is around 160 lbs. However, probably anything from maybe
155 to 165 is really okay. Anyway, as I said, I had gained to an all time high
(since losing weight after weight loss surgery) of 172 lbs sometime around Aug
or so. My prednisone was dropped down to 5 mg (from 10 mg) the end of Sep and
then down to 2.5 mg around the end of Oct. I may be slightly off on the dates
but right now I don't feel like looking back over records to be more accurate.
Anyway, sometime around the very end of Oct, my weight dropped down to 166 lbs
in just a matter of days. I figured it was a combination of dropping some of
the 'prednisone' weight as well as not eating well most of Oct because I felt so
crappy and had so much pain, nausea, and vomiting. After several ER trips for
episodes of the familar right upper quadrant pain, nausea, and vomiting that
typically goes along with my pancreas flare ups, I was admitted to the hospital
around midnight Sunday morning, Nov 2nd. Any time I am in the hospital, I come
home heavier than when I went in because of the IV fluids.
I weighed 170 lbs when I got home from the hospital on Friday, Nov 7th. I
figured a 4 lb weight gain for 6 days in the hospital was about the norm for me
and figured I'd drop it in a couple of weeks. My weight has steadily been going
up since then. I just took a look at my legs and they look terrible because
there is so much fluid. I weighed and my weight is now up to 177 lbs. I'm not
concerned from an actual weight standpoint as I am sure it is fluid. I am
concerned from a health point of view. I have put on 7 lbs in just 6 days and
out of those 6 days, I've only had 2 or 3 days that I could tolerate anything
more than liquids. This past Tuesday I was having so much pain and nausea that
my mom brought me to my local pcp and he gave me a shot of demerol and
phenergan. He checked my liver enzymes and they were great, but my total
protein was low. The shot knocked me out for several hours Tuesday
afternoon/evening and on Wednesday I was better. I actually went with a friend
to get her car from the shop (she had a rental car but doesn't like driving to
next town alone). We even went to a store for about an hour. I was wiped out
by the time I got home, but not miserable. Today, I feel like crap and the
thought of food makes me want to puke, so I've done liquids today. I'm sure I
haven't gotten in enough liquids but it's hard to make yourself drink when you
are so nauseated and feel so crappy. I'm going to call my doctor in the morning
and he'll probably make me come to his office. I'm just wondering if anyone has
any ideas on why I would be retaining so much fluid? By the way, I am on 40 mg
of lasix daily and 5 mg of amiloride hcl (another diuretic). If you go from my
weight prior to being put in the hospital (166 lbs), I have gained 11 lbs in
less than 2 weeks.
Sorry to always be just asking for help and support for myself and giving very
little back to the group. I'll try to make up for it when I finally get to
feeling somewhat normal again!
Thanks to all,
Karen W

Hello Everyone,
We had a good chat last night that lasted quite a while. :) Ellen I hope you
get to feeling better real soon. Denise I am gld you were able to come from
hospital today. Walt good seeing you again.. You too Kimber. Bruce I am glad
you could join us. Karen W. how are you doing with the block? Kaye how is your
father (or is it fther-in-law) doing? Could everyone say a special prayer for
Brenda and her son - going through some rough times right now.
What I really would like to do is to take this time to say a special thanks to
the following people for their contributions:
Karen - Logo Work
Melissa - Focused Chats
Kaye - Membership work
Loretta - Focused Chats and Incorporating as Non Profit Organization
Shelley - Writing articles for the webpage
Gary - Focused Chats
Jenise - web design assistance
Also a few others are looking into possible locations for our 1st Annual Retreat
in the fall of 2004.
Sure hope I haven't missed anyone. Please forgive me if I have. Been kind of a
rough day here.
I get a call this afternoon from the Digestive Health department at UVA hospital
to remind me of an appointment tomorrow I did not know about. The worse part is
that the appointment is for another darn test. The Gi Motility test because of
the swallowing problems I still have from the Fundo surgery. I did a barium
swallow a few months ago and that DID show problems. Why another test???? Why
not just fix the problems??? I am so tired of all the tests and the have taken
their toll on me.....
Since July this year: 2 Ct-Scans, 2 MRCPs, Countless blood tests, Fecal Fat
test, Barium Swallow, D'xylose Sugar test, Colonoscopy with Biopsies, Several
urine tests, and who knows what else.. I have lost track of all of them. Still
Don't know when the Secretin test will be (another one yet to do).
Also my pain meds are up in the air right now. After the celiac block, I was
prescribed Oxy 5s when the block had me so sick. I had a followup appointment
about 10 days later. I asked if they would be handling my pain meds from now
(have wanted off the vicoden for a long time) and they said yes... Just call
when I needed some. So I did that today.
This afternoon the nurse calls me back on it. Said that the doc who prescribed
them is no longer there. And that if I wanted to received any more it would
require a contract and monthly visit - and they don't have that kind of
relationship with me. Her next question was how many do I have left? Before I
could answer her the power went out and I was on a cordless phone. By time we
got power again, the office was closed... Meanwhile when I saw my PCP on
Tuesday, I told her the pain clinic took me off of the vicoden and put me on the
oxy.. So she will not renew my Vicoden. Another mess to get straightened out
tomorrow.
I really think it is time for a new GI.........................
Off the soap box now..... Enough of the problems. Would much rather talk about
all the good stuff going on.
We are making progress with our projects thanks to the wonderful people here....
Really some exciting times, seeing how we are growing, and pulling together to
really make something of TPP. Ultimately I would like to have TPP accessable to
everyone who have Pancreas related problems, not just those with a computer.
THANKS to everyone here!!!!
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

I live in Asheville and have some really good friends in Maggie
Valley. All this would be real convenient for me too!
Kaye

Jenn:
I was trying to list some places I knew of that we might could hold a
retreat...and it not be very expensive. The kids went to Lake Junaluska for
a confirmand weekend through the church. They loved it. I did't realize
where you where. I live about 2 hours from Ashville..and I know Maggie
Valley well..I used to go rafting on the Nantahala. I gave my mom tickets to
Biltmore Estate for her birthday.. its decorated for Christmas now and she
has always wanted to go..so she and dad are in Asheville right now. If you
know of some other places..church camps or 4-h something like that they we
might could use.. let ReeAnn know..we are trying to gather information so we
can do something. I've pasted the link to Lake Junaluska. Glad to hear
things are going well for you. Take care.
http://www.lakejunaluska.com/lakejunaluska/lakejunaluska-info.htm
Shannon Tuten
Edgefield,SC
Shannon, I saw were you were talking about everyone getting together
at Lake Junaluska in NC, my family is from that area, (Canton, about
30 minutes from Asheville) and there is another town near there
called Maggie Valley. Joe and the kids and I go about once every 2
years for a week to visit and explore. It is very inexpensive, in
the tourist season we pay about $89.00 a night, so in the off season
it will be much less. We should all pick a date for a long weekend
and try to meet. I would love to be able to put some faces to the
names that I talked with quite a bit last year.
I will post again soon, and I am really hoping that we can all get
together soon, if not now, maybe in the Spring, when we have all had
more time to plan and save, either way Joe and I will be there.
Jenn

If anyone does get the meeting weekend together, or would just like
to email me, our other email address is joejenring@...
That is the email that I try to check on a daily (or atleast every
other day) basis.
Thanks,
Jenn

Hello Everyone!
I hope that your week has been good, and mostly pain free. I have
been down with a very severe ear infection over the past week. The
headache alone was to much to sit at the computer. Joe did a
wonderful job taking care of me! He must have picked up a few
pointers from me last year.
Shannon, I saw were you were talking about everyone getting together
at Lake Junaluska in NC, my family is from that area, (Canton, about
30 minutes from Asheville) and there is another town near there
called Maggie Valley. Joe and the kids and I go about once every 2
years for a week to visit and explore. It is very inexpensive, in
the tourist season we pay about $89.00 a night, so in the off season
it will be much less. We should all pick a date for a long weekend
and try to meet. I would love to be able to put some faces to the
names that I talked with quite a bit last year.
Cheybear, good to hear from you also! I have really missed all of
you, and posting on a regular basis. I am trying to do better now.
Joe and I were just talking about last Christmas today and how we are
looking forward to this holiday season, with Joe being well. I have
started on my Christmas Cards and a note to send to everyone on how
Joe is doing. When I look back on last year, I wonder how I made it
thru, but with this site and friends and family I know. Even though
Joe was sick, he was my biggest cheerleader!
I will post again soon, and I am really hoping that we can all get
together soon, if not now, maybe in the Spring, when we have all had
more time to plan and save, either way Joe and I will be there.
Jenn

Hi All... I haven't posted in a long time...my other groups have
been ultra busy with the chronic pain things that are in the
works...but I wanted you guys to know about this upcoming event
too... Jeannine
from another chronic pain list:
Delores has the month wrong...the "Silent No More" March on
Washington is April 19th. Here's what I have :
~*~*~*~*~*~*~*~*~*~*~*~*~
Attention Chronic Pain Patients! National March on Washington
April 19, 2004 "Silent No More" for more information contact:
www.painreliefnetwork.org or Siobhan@...
~*~*~*~*~*~*~*~*~*~*~*~*~
the various groups are getting whipped into a mild "not going to
take it anymore" frenzy.....every group I am signed on with is
passing similar info around and many of us are getting the advocacy
bug...I want to go to the March in April....
I am writing all the letters I have been asked to write...except
there's one going around asking us to send letters to Montel...been
there done that and got nowhere so don't think I feel like doing it
again. And Oprah is a bag-o-wind when it comes to FM so I won't be
writing to her either....here goes:

Thanks to all the veterans today for their sacrifices in making our
country free.....and so far another pain free day for me, I hope
others are feeling good today too, and if you're not, hang tough,
it'll get better.
Judy

This is my journal people. You can get to know me better by reading
it.
Carolyn from Ohio PS: I just entered my Editors Choice Award
Certificate for my new poem I wrote.
www.http://edit.journals.aol.com/truthseekercsh/MYPOETRYANDPICTURES

Hi Y'all,
Just a remninder that if you need prayers said for yourself, a friend, or loved
one, please go to: http://www.theprayerfactory.com .
Best Regards,
Jerry/NC

ReeAnn,
I would like to offer to host the April 8th chat. I have done extensive
research on the topic of Diabetes and Pancreatits. Let me know it you would
like to have me host. Also tell Gary that I will be there with bells on for the
caregivers chat!
Hugs,
Melissa

Hello Denise,
I'm sorry to hear that you are back in the hospital. Your pancreas is like mine.
Sometimes my pancreatic enzymes do get elevated when I'm sick with acute
pancreatitis and sometimes they don't get elevated when I'm sick with acute
pancreatitis.
I hope that the doctors and nurses are treating you well. You deserve it.
I was discharged from the hospital this past Friday. I am so glad to be home
with my family after being in the hospital one and a half months.. I'm still
waiting for my blood cultures to come back.They had to repeat them the day of my
discharge because 2 of my vials of blood came back negative for bacteria and one
vial of blood came back positive for bacteria. I'm praying and keeping my
fingers crossed that they will all come back negative this time. I don't want to
go back in the hospital for IV antibiotics.
I hope that you are feeling better. Get your rest while in the hospital. I know
that it is hard to rest in the hospital. When I was in the nurses were taking my
vital signs sometimes every 4 hours. They were waking me up in the middle of the
night. One night I was sleeping and a nurse was standing if front of my bed
trying to wake me up. She scared me. I screamed real loud and jumped. It scared
the nurse. She also screamed and jumped. It was so funny. LOL
Please get better real soon. You are in my prayers.
Maria

Get better soon sweetheart!!
Jerry/NC
********************************************

Hello All,
Just a quick note to let you all know that I am back in the hospital. I had
to go to the ER Saturday night, couldn't take the no eating and no sleeping
any longer. I knew I was becoming quickily dehydrated. And now, here I am.
Everything was much the same with the ER visit this time too, Except that my
Amylase and Lipase were elevated to almost double normal. Something that has
Never happened to me before! At first I as like... "Are you sure its my
blood? Because mine never elevate!" They just don't know what to make of me
with
all of my problems....
Hope Everyone is doing better than me this week! I promise that we will do
our very best to Keep that Promise/
{{{{HUGZ and Prayers}}}}
Denise Hallock in Michigan
Co-Owner ~ The Pancreatitis Place

Hello Everyone,
We have finally worked out all the details for having Focused chats
once a month. Focused Chats are chat sessions with a host and all
conversation should relate to the Topic. Our Focused chats will
happen on the second Thursday of each month at 7pm eastern time. As
with our regular chats, you will need AOL or AOL's free messenger
program AIM to access the chat room. So far we have topics for the
January, February and March and they are as follows:
December 12th - Caregivers
This chat will focus on concerns of our caregivers. It is an
opportunity for caregivers to get together and share experiences,
frustrations, concerns, and ideas. If your caregiver is not a member
of TPP that is okay, they are still very welcome to attend this chat
session. The Host will be Gary in VA
January 8th - Legal Healthcare Documents
This chat will focus on the legal documents such as Living Wills,
Power of Attorney, DNRs, Privacy of information, etc. Please bring
your questions and concerns about these forms are that typically
given out by hospitals to their patients. The host for this chat is
Loretta in OK
February 12th - Parents of Children with Pancreatitis
This chat will focus on the special problems of caring for a child
with pancreatitis. We are in need of a Host for this chat. If you
would to help out, please send me an email.
March 11th - Nutrition and Counting Fat Grams
This chat will focus on nutritional concerns with pancreatitis,
primarily looking at the low fat diet. Learn how to determine your
daily intake of fat, cooking tips for preparing low fat meals, etc.
Please bring your favorite recipe to this chat. Host is ReeAnn in VA
April 8th - Diabetes
This chat will focus on the concerns of diabetes resulting from
pancreatitis. We are in need of a Host for this Chat. If you would
like to help, please send me an email.
There are many other topics available for these focused chats such as
SSDI, Pain Control, Medications and/or Enzymes, Dangers of Acute
Attacks, Celica Blocks, etc. If there is something you are
especially interested in and would like to host a chat, please send
me an email.
Also, I would like to remind everyone that anytime you are online and
want to talk to someone, we are willing to open the chat room for
impromptu chats.
Lots of Gentle Hugs
ReeAnn ~Virginia
CoOwner - ThePancreatitisPlace

I would like the link to the chat room at aol
carolyn

Carolyn:
wow .. what a story. I'm so glad you found your way to us. It is a
supportive group "family" who understands the day to day struggle to live
with chronic illnesses. Many of us have been through the struggle for SSD..
My name is Shannon and I am 36 and have been disabled since 1986. I have
asthma, heart problems (pacemaker), interstitial cystitis, endometriosis,
chronic pancreatitis, gastroparesis. I am one of the moderators at TPP. One
day I am going to write my story so it can be on the web site for others to
read. I think it helps just to know you are not alone in your
struggles...and irregardless of what some ER docs say...it is not all in
your head or irritable bowe from "stress". You gave us a great story about
your problems but if you don't mind...tell us a little more... what kind of
work did you do? what state do you live in.. Maybe there is someone else
that is near you. We have members from all over the US..and some outside the
country. Mostly though, I want you to feel welcome. Please feel free to
post messages if you need to vent, good or bad, ask all the questions you
want... I promise someone will try to help, I'm not saying we have all the
answers...but we will always help you look for them. Please look at our
database and links we have listed on the site. Its full of helpful links,
member informaiton, doctors, etc, Alot of time has been put in to mkaing
this ...THE best pancreatitis support group on the web. You have had alot go
wrong in your life...but I promise this is not one of them.. I hope you will
find it as helpful as I have and that you instantly feel like one of the
family and not the long lost cousin no one is sure just what to say to at
the family reunion. Welcome and if there is anything I can do to help..
please ask. I check messages several times a day.
Shannon Tuten
Moderator, Edgefield SC

I'v had so much happen in past two years, I don't feel like the same
person anymore. I have copd, rad, diabeties, IBS, osteoarthritis,
and high blood pressure, glarcoma. I have terrible diguestion
problems. I have to have my liver checked every 3 months. I take 4
shots a day for diabetes. I also take an oral actos 45. I'm on a
lot of medicine. I have no coverage that I can afford. I am disabled
can't get around have a scooter and walker for home and short
distances. I was turned down for ssi once, reapplied, pending. I
was hosp. in April, this year on Easter day actually. I was in
pulmonary ICU, this time I thought I wasn't gonna make it. But I had
excellant care. My sugar reading was off the machine and they had to
call lab to take blood to read it.
In the past two years, I've had a house fire, lost almost
everything. Hus. lost job of 17 years. Then while house was being
rebuilt, lost it. Rented a mobile home for 6 months. Hus. couldn't
find job. In august last year became homeless. Lived in bravada for
a while. Hus. finally got job but not in his professon. He is sr.
programmer analyst. He is 56. He is now a tool inspector working on
line at auto plant. He has never done labor. We now live on 1/3
salary we use to get. Hus. in school updating skills. Doing OK.
Me? I was put on effexor xr and gained an extra 30 pounds to an
already 300+. Now renting house with 22 year old son. I have raised
4 children with thier own children. I will have 10 grandchildren one
due on my 50th birthday in Jan. next year. I want to loose weight
to live and move. I hurt because I can barley move to do any
exercises. It took me 6 weeks of physical therapy in my home after
coming home from hosp. to regain walking and doing little exercises
to get around. I don't know what to write in these groups, never
been in one before. I took myself off effexor xr, appetite is
better, have dr. appt. next week. I want to be healthier, but so
much happens. Tuesday, this week our bravada, the one we lived in,
was stolen by a 17 year old punk. The police recovered it but they
tore it up. That was the second time I've ever seen my husband cry.
God help me. I need support in my illnesses and just plain everyday
life. making it is a daily struggle. But this is who I am and what
I'm about. So hello everyone.

Hello Everyone,
Once again I must remind everyone to please DO NOT include the entire original
message when responding to a post - just include what is needed for clarity. In
the last 3-4 digests there were numerous incidents of this happening. Not only

Myrtle Beach has become a great place for outlet shopping. The rates during
the winter are very affordable. We usually go for a long weekend in Jan or
Feb and can get a room for about $50.00/ night at some of the better hotels.
Almost all of them have indoor pools too.. Maybe that should be somewhere to
think about..either that or see about using one of the 4-h camps or church
camps. There is a 4-h camp in AIken./. WW Long.. it has cabins as well as a
"lodge" type building. I'm not sure what it would cost. I know the Methodist
church as a great place in NC.. Lake Junaluska that is really nice. I'm not
sure what it would cost to do something like that though. It would be nice
to just be able to get together..nothing to structured.. jsut a fun and sun
sorta thing...or shopping. I love Myrtle though...we go every year for at
least a week. My parents have a large travel trailer..it sleeps 8.. One
queen size bed... a sofa bed, the dining table makes a bed.. then there are
2 regular single bunks in the back and another small table that converts to
a bed. We stay at Ocean Lakes... I know you can rent houses there..also but
I'm not sure how much.. Its a campground with an indoor pool. So maybe
somethign like that too. Great place for the kids too... It might be a
little more convienent for some since it is not far from the NC line.. its
about 70 miles from Wilmington I think. Anyway.. just some places I was
thinking of.. Take care.
Shannon Tuten
Edgefield,SC

Has any body ever had a sphincteroplasty or know someone who had?
It has been less then 2 weeks since the surgery and I am having a
lot of pain from the sugical incision; which I expected, but also a
lot of pancreatic pain which I was not expecting. Any way I know
that this procedure is not done often, it sure would be nice to
hear some one elses expereinces.
Christine

Hey guys,
Sorry I've been absent for a while. I ended up having a pretty bad pancreatitis
attack last Saturday night. Hubby took me to Crestwood hospital in Huntsville.
My pancreas enzymes were normal but liver enzymes and alk phos were elevated,
not a lot, but elevated anyway. They admitted me to the hospital because for
the last three weeks the attacks have been becoming more frequent and more
severe. They were so nice to be both in the ER and on the unit after I was
admitted. Never once was I made to feel like I was just a druggie. Since I was
admitted on late Sat/early Sunday, I didn't see my docs til Monday. Both the
docs on call for my two docs (GI/hep and internal med) were so nice. The on
call GI doc sat on the edge of my bed and asked me a lot of questions about my
history and what had been going on the last few weeks. He was very interested
in all the autoimmune problems that are becoming more and more prevalent in my
family (my sis and daughter have autoimmune diseases; my 7 year old nephew had
henoch schonlien purpura (HSP) just before turning two and that's also an
autoimmune disease). I told him that my panc enzymes had been normal with the
last several attacks. He said, "Once the pancreatitis has become chronic, your
enzymes don't always elevate. In fact, your panc enzymes may never elevate
again, but that doesn't mean that the pancreas is not what is causing the
problem." He asked if my GI knew what had caused the cp. I told him that the
GI was calling it idiopathic, but that he thought that the bile not flowing well
had something to with it and that is why he put me on actigall. I told him that
the GI doesn't think that the cp is autoimmune in nature, but that I kind of
think it may be. I then said, "but I guess it really doesn't matter that much
what caused it, because you'd treat it the same regardless of the cause." He
said that was correct and that mostly with cp, you can only provide pallative
care. The goal is to get the patient hydrated with IV fluids and keep them as
comfortable as possible with IV meds for pain and nausea. He did also so say
that with my strong history of autoimmune diseases, he would be likely to lean
toward the cp having at least some autoimmune connection. He was so nice and as
he was leaving my room, he said, "Well, it was very nice meeting you and I am
quite sure I will see you again at some point in the future." I laughed and
said, "I sure hope not, but you are probably right!"
Anyway, it was so nice to be treated so kindly. Upon discharge, I talked to my
internal med doc about the treatment (or lack of) that I received at my last ER
visit to Athens Hospital (the local hosp. - Crestwood is 45 minutes or so away).
I asked him if it was reasonable for me to go to the ER when I had pain and/or
nausea that was not being controlled by my home meds. He said, "Absolutely!"
He then said, "I was cheif of staff over the ER at this hospital at one time and
it can be hard to determine if the patient is telling the truth or just seeking
drugs. The right thing to do in that case is to pick up the phone and call the
patient's doctor(s) and ask their opinion on whether the patient is being
honest." He said, "When you are seeing a patient with a history like yours for
the first time, it is easy to simply write them off as just wanting drugs for a
high. It is unfortunate, but there are patients like that, some of them have
chronic pancreatitis and exaggerate symptoms to get more drugs. However, it's
not that hard to determine if they are telling the truth if you know what to pay
attention to and if you take the time to call a doctor that DOES know the
patient. With an attack of pancreatitis, if you have a patient asking for food
soon after being admitted or sometimes even prior to being admitted, you can be
pretty sure that the pancreatitis pain is not severe enough to warrant IV meds
and/or hospitalization." He said, "because with CP, you eventually reach burn
out stage and the the panc enzymes then no longer (or only rarely) elevate, you
have to go just by the patient's symptoms." He told me if I have any ER doctors
giving me a problem, I should insist that they call him. He also told me that I
know when things are to the point that I need to be admitted and have a few days
of 'gut and bowel' rest.
By about Wednesday, my husband told me that he could hear in the sound of my
voice how much better I felt. He said my voice sounded better than it had in
over a week. I probably would have been okay to go home on Wednesday, but on
Tuesday I started having horrendous watery diarrhea. This lasted til just after
noon on Wednesday and stopped as suddenly as it started right after I had
provided them a specimen for analysis. Thursday morning I felt much better so
he advanced my diet from clear liquid to a soft/bland diabetic diet. I did fine
with the food except for the couple of bites of some sort of beef with pasta. I
knew better than to eat the beef, but I had gone long enough without solid food
that I was hungry and thought just a few bites of beef might be okay. WRONG! I
paid for those few bites with an hour or so of major pain and nausea. It
subsided and by bedtime I was feeling pretty well again.
The doc came in early Friday morning and said I could go home since I had
tolerated the food pretty well and my oral meds were once again keeping my pain
and nausea at a tolerable level. He said, "Now, I want you to go home and take
things VERY easy for the next week or so." I told him I would and then he said,
"And I REALLY mean TAKE IT VERY EASY!" I said, "Yes, sir!" He smiled and left.
Boy, do I ever wish that everyone with pancreatitis or any other painful illness
could be treated with such kindness and compassion!
I have over 100 unread e-mail messages. Don't know if I'll be able to wade
through them all or if I will have to delete. I'm not going to worry about the
e-mail right now, but will try to at least scan them over the next week. I am
feeling MUCH better than I have in the last few weeks. I am going to take the
advice of my doctor, husband, mother, stepfather, father, and daughter and just
really take things easy for the next week or so. It may be hard but I am going
to do my best to just be a slug and spend lots of time snuggled in the recliner
with my little KayDee (miniature dachshund).
Hope this finds everyone doing well. If there is somthing that I particularly
need to see in a post, please list my name in the subject line.
Thanks a million guys!
Karen W

I would love to have a get together. Charleston is beautiful
especially around the holidays. I usually make a day trip up to the
out let parks in Myrtle Beach in lave Nov. or early Dec. Great
deals. Hopefull I will feel up to by then.
But I would adore meeting ya'll
Christine

I've been following your story... and i have to tell you i've had very bad
experiences with i v intibiotics and i want to warn you about it. I had my
port get iinfected because of the bad care of my home health nurse. the
infection o[pened up my port down to my heart and traveled through to my
bloodstream finally landing in my right eye..........causing me to be blind
after 4-5 weeks of 5-6 i v antibiotics in the hospital and at ahome. The
bad BAD antiobiotic is call vancomiacin.........k it'
causes deafness.......... and yes i also lost the hearing in my right ear.
it will not come back either. This is severely strong and others have lost
hearing because of the i v use...... Please refuse thi s drug... it has
horrible side effects...... Nausea... dissiness... swollen tummy........ all
in all you dont feel like you have control of your self. I can't stress
this enough to everyone. It is absurd that a doc didn't ask or warn me of
these side effects. My eye is dead now and cannot be restored after many
procedures to try and restore at least some of the sight. This is all
because of the blood infection from the port. It can land anywghere in your
body and cause severe harm. Believe me......... i have been put through
the ringer......... Hope you get this and understand... i don't want this
to happen to you.......... take care... Maria......... i'm thinking
about you sweetheart. love, jan xox

Hello my fellow pancreatitis pals,
This is Maria. I was finally discharged from the hospital today for the second
time. I was hospitalized for a week this time. I am feeling somewhat better. I
am just a little weak and lightheaded since coming home from the hospital.
When I was in my hospital room today, my GI doctor told me that my tests looked
good except for one of my blood cultures. Two of my blood cultures came back
negative and the third blood culture came back positive. My GI doctor requested
more blood cultures on me before I left the hospital just to be on the safe
side. She also told me to take my temperature at home twice a day. She told me
to call her if my temperature is above 100 degrees. The type of bacteria they
found in my blood is called micrococcus or something like that. It is supposed
to be an infection that comes from the skin and some type of contamination. The
infection diseases doctor told me that it was nothing. There was most likely
some type of contamination that took place when they drew and processed the
blood according to the infectious diseases doctor. The infectious diseases
doctor didn't think it was a big thing just contamination and told me that he
doesn't treat bacterial infections like the one that showed up
in my culture. He felt it was safe for me to go home. My GI doctor was going to
keep me another day or so, but it was all up to the infectious diseases doctor.
The infectious diseases doctor told my GI doctor that it was okay to send me
home. Now I have to see how the culture comes out. That will be in approximately
3 to 5 days. If the bacteria does grow and the cultures come back positive then
I'll most likely have to be admitted back to the hospital on IV antibiotics
again. I hope that everything will be okay. I've had enough of the hospital.
My children and husband are so glad to see me. They've been hanging around me
since I came home. When my husband picked me up at the hospital today my nurse
whom brought me down in the wheelchair told my husband to make sure I don't try
to do anything in the house like cleaning up the house, etc. She told him to
make sure I get my rest.
I hope that you are all doing okay. Continue to keep me in your prayers. You are
in my prayers.
Maria

Hello Teresa,
First, Welcome to TPP... what a great thing to do, in coming here to find
support for your Brother in Law! Do you know what made them think he might have
Pancreas problems just from him wanting his sinuses drained? Did they do
blood work or some kind of tests that came back with odd results or something??
I'm very curious.
I hope and pray that they find nothing. I hope that they just find an
irritation in his stomach or something. This disease is awful and I wouldn't
wish
it on someone I was enemies with. (Well, I know a few docs I might wish it on
for a few days... but thats it. Hmmm, maybe a few nurses to... but really
thats it I swear!!!)
I will keep you and your family in my prayers and hope for the very best of
outcomes for your B-I-L.
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place

Shelley,
I was in for 12 days total, and I am still not doing much better. I still
can't eat and drinking, well... a sip or two to get meds down is about all I can
manage right now. I went back to my primary doc today and they did some
bloodwork and hopefully I am not so dehydrated that they will want me back in
the
hospital. (they are checking that, seemed a little worried that I wasn't able
to keep much of anything down. And that I have lost another 16# since I was
there just 3 weeks ago.)
I hope that you are feeling better, the MRI's here aren't so bad, just a
little closed in feeling. They probably just want to see if you have any
scarring
or cysts on your pancreas or and damage in your ducts. (Stones or
obstructions that kind of thing.) I'm sure its just one of those "Being
thorough"
things that the doctors like to do.
Hope you get some mail soon!! Thank goodness the computers can't strike eh?
Talk to you soon!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place

Denise,
wow, sounds like the doctor has a definite plan to see if there is any
way to help you. I certainly hope they can fnd something that will make
it so that you don't have to go to the hospital as much as you've had to
lately. Keep us updated on what goes on.
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 am glad you are home and are heading in the right direction for
treatment. It always helps to feel better when you know there is
going to a light at the end of the tunnell. I am still very very
sore. I had a pretty significant panc attact last night and today
has been kind of rough but it will take time for the surgery to heal
in all aspects. I was not expecting to have such a major incision,
and I am so swollen I look 7 months pregnant. Lets hope that is
temporary the last thing I need it to look even fatter.
I hope you continue to do well and you will stay in my prayers.
Warmly
Christine

Hi Maria,
You make sure they get you better before sending you home this time.
You are in all of our thoughts and if you can, keep us posted.
Lots of gentle hugs,
Shelley

Christine,
Hey there! How are you feeling? I'm really sorry I didn't get back to you
when you were getting ready for the surgery but I was in the hospital and
pretty much out of it.
I'm glad that you are doing ok and I hope that things continue to go well.
Please keep in touch and let us know how you are doing!!!
{{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place

Shelley,
Thank you for the well wishes, and I am finally home... and back home even
from Cincinnati. I posted a long post about that whole trip... wow.
How are you feeling? Better I hope. I am still not feeling much better,
still can't eat and have today just been able to do a few sips here and there.
Enough to get a few sips down and my meds. Thank Goodness for that.
I saw something about your Mr. Russell retiring?? Are you going to still be
going to the same office then or will they be sending you on to another place?
I'm hoping that this won't prolong the process for you. I know you have
been waiting for awhile to get in to see him. What a poop... just to up and
retire like that! Doesn't he know that you need him!?!?!?!
Wishing you well! {{{HUGZ and Prayers}}}
Denise
Denise Hallock in Michigan
CO-Owner The Pancreatitis Place

Hi all:
I think it would be a wonderful idea for those of us in the south to
get together. I live in Asheville NC and would be willing to travel
some. Charleston is my favorite place also.
Keep me in mind also!
Thanks
Kaye, Asheville NC

Hi Guys,
Just wanted to let everyone know that I made it home from Cinci ok, the
flight down was a little bumpy and the hotel the cabbie left us at... ug, NEVER
and
I mean NEVER stay at the Interstate Motel on M L K and Crosstown Parkway....
Oh My G-D!!! It was a dive. It was more like a Brothel than a motel. I was
never so glad to check out of my room and get on the road as I was today.
The flight home was a little less bumpy... we flew through and over the
clouds and for whatever reason I didn't feel as uneasy over the clouds as I did
being able to see the ground. The plane was older and not as comfy as the first
plane we rode in, but it got us from point A to point B. From nice warm Cinci
to frigid cold Michigan. BRRRRR it was 40 and falling when we got back here.
But its nice to be back home... mess and all.
Now back to Cinci and why I was there and what was decided while I was there.
I saw a Dr. Somogyi (or something clo