Huge archive

ReeAnn,
sorry the cable company is causing you problems with getting online. I
hope that they get it fixed right away when they come over on Wednesday.
Contact us when you can. You'll be in our prayers that you aren't cut
off from us for very long.
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.

Maria
I'm so sorry that you are still in the hospital and not doing well with
the food. I hope that you won't have to go home on TPN, but will prayer
that if you do, that you get well really quickly an don't have to be on
it for very long. Keep us informed on how you do, we all worry 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.

ReAnn.
Hi kiddo! Get yerself DSL from the phone company. It is vastly superior to cable
modems.
I hope yer feeling OK!
Jerry/NC
************************************************************

Hello Everyone.
I am having major problems with my internet server (cable modem). I have only
been able to stay online for about 5-10 minutes at a time. Was told it is a
signal problem when I called. They will not be sending anyone out to look at it
until Wednesday morning. Needless to say I am far from their advertised 100%
satisfied.....
Anyway, will try my best to make it for the Sunday evening chat. If I am not
here, know I am trying......
Hope everyone is having a good weekend and as pain free as possible. You ALL
are in my thoughts and prayers!!
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

Dear {{{{{{{{{{{{{{Ellen}}}}}}}}}
I will get this added for you ASAP. My cable internet service is really flaky
right now. Going to try to do this today (if I can). Repairman will be here on
Wed. So much for their 100% satifaction guarentee......
Thanks!!!
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

Hi Denise,
I'm sorry that you are back in the hospital like me. I'm sorry that you are not
feeling well even with TPN. You are in my prayers.
I am still in the hospital for pancreatitis. Yes, it has been a month now that
I've been in the hospital. I finished my TPN yesterday. Now my doctors are
trying to feed me again. So far I haven't had any luck with regular food. I pray
everything works out for me and you. If I don't get well my doctor is planning
to place a permanent line and send me home on TPN for a few weeks. That is his
second plan. I don't want to go home with another line and be on TPN.

Hi Ale;
I have had 2 ercp's with stent placed. Most of the stents placed
these days stay in for up to 3 weeks and should migrate out of their
own before that time; migrate as in a BM. After about 3 weeks, the
doctor should have you sent for a simple chest x-ray that will
indicate whether or not it has passed. Having a stent placed in the
ercp is not much different then having any other ercp. They may
keep you over night to make sure you dont go into pancreatitis after
ward. I have sod; and unfortuately after my first ercp the stent
did not migrate because of ductal tortuosity and even with my
constant begging and 2 xrays it still had not and it took the md 10
weeks to find time to take it out. I felt great for the first month
it was placed; but after that it was down hill. The 2nd ercp I
raised holy hell with my surgeon to force it to be taken out within
the recommended 3 weeks had it not migrated on its own. Having one
removed is a piece of cake. I am now scheduled to have a
sphincteroplasty on monday and I wonder how my situation would be
different if that GI doc had pulled the first stent at the
appropriate time frame. I voiced my deep concern about this with my
surgeon. Having the stent placed can be very effective; it is not
painful, the stent is very small, no bigger then enbroidery thread
and can vary in length, most people dont even notice when they have
passed it in their stool. Good luck and dont be afraid, just make
sure you know exactly what kind of stent is being placed; how long
it will be in place; and that you have your xray schedule in a
timely fashion so that if it has not migrated you can discuss with
your MD the next step.
Warmmly;
Christine

Reminder Reminder from the Calendar of ThePancreatitisPlace
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Well, just a few words to Lauri; Hang in there and like was said before
don't play the what if game... just have your ducks in a row and be ready for
whatever comes. I am one of the more fortunate ones in that I do not live with
constant pain, but by the same token I also have attacks that hit suddenly like
a ton of bricks and go just a quickly. But I cannot allow these to rule my
life. I had one this past Tuesday morning, after not having one since May. It
does worry my hubby quite a bit as he is vision impaired and does not drive, but
we do survive it. So just live life as it comes and make the best of it.
Denise, hurry up and get better soon, we miss you around here. And to
everyone else, HAVE A GOOD WEEKEND AND BE AS PAIN FREE AS POSSIBLE!
Pam in Santa Clarita

I will like to know more abaut the "stent", My doct wants to go for
that, but I'm not sure what to do to do, Is this just a temporary
solution? how long you can have a stent? what are the problems of
this procedure? my doct can't belive my duct is closed again, I have
a sphincterotomy 3 months ago. he dosen't think it can get closed
that soon. so why he wants to do the procedure??
I just came from my Doct apointment, I'm so mad... he just told
me "put your mind on top of your body", I know this pain is not my
mind, well he is making me think I 'm making the pain, well I can't
belive my mind is making this terrible pain. I ask him if he think is
pancreatitis, his answer was, all you blod test are normal, is
imposible to have pancreatitis and normal blod tests, I know that is
not right, he knows I have SOD but he still thinking my mind is
making all... I am sooo mad and sad and desapointed and
grggrgr..sorry.... thanks for listening.
Ale.

The tube is usually reffered to as a stent. I have had 2 placed in the past.
Basically it keeps your duct from clossing/collapsing.
Jenise

I have an Endoscopic Sphincterotomy 3 month ago, for 2 month I was
with no pain, Monday I have an episodio and I was in ER all day, like
always my labs were perfect and they send me home, but I have been in
pain all week, I'm relly not sure if is pancreatitis but I'm sure I
have SOD, I went to my doctor and he wants to do an other ERCP an
place a tube in the duct, does somebody knows something related with
this procedure? I don't know wht to do.
Thanks for your help
Ale...

Hi ReeAnn,
Please tell Denise that I'm thinking of her and sending my Well Wishes her
way. I hope that she isn't in the hospital too long. Tell her I'll keep
her in my prayers.
Take Care,
Louie in WV

I was back to the hematologist where I learned that my hemoglobin is
still diving. So far, it's not been low enough to need a
transfusion, but it may reach that point.
Dr. says that there's no point in my trying an even higher weekly dose
of Procrit as I'm already on 60,000 units. That's a humongous amount.
My CP pain is worsening causing me to be scheduled for another EUS
Celiac Plexus Block on, of all days, Halloween.
Hematologist says that my bone marrow is being suppressed by the
pancreatitis. That's what it's been doing for over three years now.
Here I am, about to MC my upcoming high school reunion on Saturday
nitht and I've been ordered to bed rest. Yeah right!
And just two days after the block, which can leave me in rotten shape,
will be my great niece's formal wedding. What a disaster.
-Ellen Grove

Hello Everyone,
Just a friendly reminder about the TPP calendar. Our group TPP calendar can be

I just have to comment on what wonderful advice I think this is. Although
right now I feel very blessed, because I have not been sick since the last
of June, I also never know about tomorrow, but the sick days really makes
you appreciate the good days and being in the hospital for three months
makes me appreciate every thing I can do with my husband and children, even
riding in the car and driving the car, and seeing the fields and yards and
going into stores and to church and serving in any way. I just love each day
that I have the privilige of doing any of those things. I know I appreciate
it more becuase of those bad times.
Myrna

Hello Everyone,
Last night Denise's nieve brought her laptop to the hospital, so Denise can get
online. Don't think she will feel up to doing chat this evening, but she might
pop into the room for a few minutes. I will have the chatroom open and really
hoping everyone will be there.
In order to access the chatroom, you need either AOL or AIM (AOL's free
messenger program). AIM can be downloaded at www.aim.com. Once you have it set
up, send me an email at MsReeAnnBetts@... and I will help you get into the
chatroom.
Really hoping to see a nice turnout tonight, so we can should Denise how much we
are thinking about her.
Lots of Gentle Hugs
ReeAnn M. Morris
CoOwner - The Pancreatitis Place

--- How do I manage at work if I never know when I will feel bad?
Lauri:
You take one day at a time and try not to dwell on the what ifs.
Watch your diet as best as you can(low fat). Be thankful for the good
days. You have to maintain a positive outlook. On days that I feel
good, I love it and am thankful for it but honestly dont think about
how I might feel 5 mins or 5 days from now. If I did I don't think
I'd ever get out of bed. If there is one thing I have found in almost
10 years with this..and that is I never know what tomorrow holds. I
have been as long as 2 years without an attack and there have been
years I was in the hospital more days than not, but I can't live my
life worrying about the next 5 mins. Life is to precious for that.
Take care,
Shannon Tuten
Edgefield,SC

Jonathan Cohn is a very prominent pancreatic disease specialist.
He's also someone with whom I went to high school! We used to live
near each other in good old Brooklyn, NY.
I told him of my frustration and that of all of us who have the
burden of proof when it comes to getting a proper diagnosis, let
alone medical care.
So I asked him what was on the horizon for those of us who suffer
with CP. I had hoped for some news about better treatment options.
Here's what he had to say which only confirms what we all know:
<<Ellen,
As you know, the last decade has brought big advances in our
understanding of the causes of CP & its complications. This new info
is helping with patient care & this means it will be important for
you to continue working with a GI guy who has special expertise in
this area.
For this particular condition, clinical judgment has high impact; in
terms of clinical outcomes, it can really help to have a physician
who is especially knowledgeable about the problem.
If you'd like an update on chronic pancreatitis, a good place to
start would be Dave Whitcomb's review article in the journal,
Gastroenterology. I don't have the reference handy but you should be
able to track it down using Pub Med.
I think the first author was Etemad & that it came out in 2001.
(I'm the journal's section editor for pancreatic disease, so I know
the paper provides a good overview.)
You may also be interested in the National Pancreas Foundation =
info@...
I plan to read the articles that he mentioned.
I'm also a recipient of the online Journal of the Pancreas.
I also asked Jon if the journal Gastroenterology ever allows
patients to submit comments. If so, I'd like to offer my
piece on frustration.
-Ellen Grove
New York

Denise -
Hi
I haven't posted in months - mainly becuase I have been doing so well that I
felt guilty writing how well I felt. Well, that all ended last Tuesday when I
got a full-fledged attack with six days in the hospital, with HORRENDOUS
care!!! The ER gives patients that come in at night a "hospitalist" internal
dr.
who then becomes the PRIMARY CARE PHYSICIAN.
The first night I was given 5 mg of morphine every six hours - normally I
take ten mg every two to three hours!!! My Hematologist came in the a.m. and
saw
me crying and immediately upped my pain meds.
then my GI who has taken care of me for five years said he would make sure II
got my pain meds.
The "Primary" dr. tried to start foods on day three!!! He also cut my
morphine from ten mg every two hours to four mgs every six hours. The nurse
gave
some lame excuse that I might get addicted to the morphine!!!! Also my blood
pressure was too low!!!! ANyway, i could write a book on the horrible stay.
I think my attack came on becuse the shipment of sandostatin LAR got "lost"
and I was a week late getting the shot. I have gone 11 months without an
attack or single pain.
Now, Denise, on to what Dr. Lehman said. I was in Indianapolis on Sept 12 to
see him as my daughter got married in Lafayette the next day, so I thought I
would kill two birds with one stone.
I dearly love Dr. Lehman, and he has helped me with the
sphrinteronomies/stents/and getting me on sandostatin. I haven't been this
healthy (before this
attack) in five years. Anyway, he gave the same skinny lecture to me. He
leaned over and grabbed my ONE fat roll and said, "Get rid of it." I am 5'2"
and
weigh 125#. I feel my best at 115#, so I know I need to loose some weight,
but he really hit hard on his belief that super skinny people do the best with
pancreatitis and he wants me to be super skinny. I told him people tell me I
look emaciated when I am that thin and he said he didn't care what others say.
Well, enough of my input.
Cecilia in AZ

Reminder Reminder from the Calendar of ThePancreatitisPlace
Hosted Chat - DENISE
Wednesday October 22, 2003
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
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DeniseHallock@...
MsReeAnnBetts@...

Hi Friends,
It Louie and I have had my daughter who is 28 years old to the ER, twice since
Friday and finally at 3am Monday morning they decided to keep her since her pain
was a 9-10. She was vomiting and has URQ pain into her back and Fatty and
yellowish bowels that burn when she goes to the bathroom.. Does this sound
familiar? She thought that she was having a gall bladder attack, but they did a
Hida Scan Monday AM and her doctor came into at 9:30 Monday night and said that
it's fine. If it's under 35, then it's gall bladder problems and hers was 75.
Her white Blood count is normal, which is normal for her. When she had
appenditis, it was even elevated then. Unfortunately she just like me in that
respect and doesn't run a temp either. Well, now they think it could be an
ulcer or GERD, But I not convinced. He said that her pancreas is fine, How
many times have we all heard that before? Maybe or should I say hopefully I
over reacting to her symptoms!!! This is her 5th attack in the past 2 1/2
years and the worse one yet. They are going to consult with a GI doc, to
possible do a scope. Do you think I should suggest an ERCP or MRCP, since the
Hida Scan was normal. Can anyone think of any test that would help get to the
bottom of her problems???? I really hope that I overreacting to her problems,
but I so scarred that it could be pancreas related. When it me, that's ok, but
when it's one of your children who is sick, I get so worried and scarred and
feel so helpless. I just want to see them get to the bottom of her problem and
get her out of pain , so she can lead a normal life. I know that being so worry
about her has made my pain level go up. I guess that STRESS and pain really do
go together. I never believed it before, but this past month, when it has been
very stressful around her. It's even effecting my husband , who is the original
Joe Cool and nothing seems to bother him. I was lucky to get 4 hours sleep last
night and now I have taken my pain pills for the pain I having and am so tired
that I can't sleep. I went to bed at 9:45pm and I still wide awake. I guess I
better try again to sleep since I want to be back out at the hospital around
9am. I hope this makes some sense, I'm to the point I don't think I even
thinking straight anymore.
As always, Thanks for listening and all you wonderful help.
Take Care,
Louie in WV

Hello Everyone,
I would like to take this time to remind everyone to PLEASE do not include the
entire original post when responding to a post you have received. We have size

HI. CT scans will not always show pancreatitis, and your enzymes do
not necesarilly have to be elevated if it is chronic pancreatitis and
not acute..there are differences. While you gave some good
information I have some other questions. First. do you still have
your gallbladder? I know you said the pain was on your left, but it
needs to be checked anyway. The CT scan will basically show cysts,
tumors, and doesnt' test function. There are other tests that are
better. The gold standard is an ERCP but it can and does cause a
pancreatitis in many cases..not all but alot more than they admit to.
However, if you do not have any metal that would prohibit you from an
MRI then you could have an MRCP. Your best bet however, is to find a
GI that specializes in biliary/pancreas problems. Not all GI's are
that knowledgealbe on pancreatitis. THey would much rather treat IBS,
or ulcers...Check our database to see if there are any physicians
listed taht are near you and see about getting a referral. Your
problems deserve a complete workup and you deserve some answers. Take
Care.
Shannon Tuten
Edgefield,SC

I do believe that it is morphine.
Christine

Is it morphine and or methadone that causes SOD spasms in some people?
Debbie

Lauri,
there is always the possibility that you have chronic pancreatitis
already and that may be why the enzymes werent elevated ( check out the
following website:
http://www.hopkins-gi.org/pages/latin/templates/index.cfm?pg=disease3&organ=4&di\
sease=24&lang_id=1&pagetype=10&pagenum=254
If the link doesn't work, copy the whole line (even what might have
wrapped to the next line) and copy and paste to your browser window.
Check out the first couple of lines. Malabsoprtion is what causes your
stools to be white and with lots of fat. Roll your cursor over the
section that says: select a section and a pop down menu will show up.
Read all the sections on Chronic Pancreatitis. It's a very informative
website. The current gold standard for diagnosing chronic pancreatitis
is an ERCP test. However this test can cause a pancreatitis attack
afterwards, so doctors usually only do it last, after other tests have
come back negative for pancreatitis, or to put stents in for those who
do have it.
Also, remember, you are entitled to another opinion from a different
doctor at any time. You might want to look up a pancreatitis specialist.
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 everyone,
This is Maria. My doctor placed me on NPO last night and started me on TPN. He's
concerned about my pancreatic enzymes going up daily. He told me that he has to
rest my pancreas for a few days so that those enzymes can return back to normal.
He told me I'll be hospitalized at at least for another 5 to 7 days. I've been
hospitalized almost a month now. Here is my doctor's plan. He's going to keep
me on NPO and TPN for a few days. He will then try to introduce food to me
again. If I can't handle the food and my pancreatic enzymes climb above normal
again then the doctor is thinking about something long term at home. He's
talking about placing a more permanent line into me and giving me TPN at home
for a few months to rest the pancreas. I hope everything works out and I don't
have go home with a line and on TPN.
By the way my pancreatitis pal is going home today. He's so happy. I've been
stopping in his room to talk to him. He's been stopping by my room to talk to
me. He's been hospitalized 47 days due to acute pancreatitis. This is the first
time he got pancreatitis. He has a cyst on his pancreas. I hope that he's going
to be okay when he goes home. I know that after I got pancreatitis the first
time, I kept getting it over and over. Now it's chronic pancreatitis. I hope
that he will have more success. He almost died from his acute attack of
pancreatitis. His name is Lloyd. Keep him in your prayers.

Hi Maria,
I have been reading your posts and you sound like a pretty amazing
woman to be able to go though what you have had to go through. I'm in
the UK and I have to agree that doc do try and feed to early my
partner was feed a Curry after 5 days of NBM and that sent him into a
attack that ment he ended up in hospital for 7 months and on TPN for
6 of those. He said that he knew when it was ok for him to eat and
argued with the doc. So please listen to your body and eat when your
ready not when other people say so.
Take care and hope you get home soon
Vicky

I am new here.. I think I have pancreatitis, but can't get a
diagnosis.. Dr.. did start me on enzymes and they have helped with
digestion, but pain is still INTENSE..
I know ya'll can't diagnose but do my symptoms even sound like your
experiences?
I have a history of abdominal adhesions, so I have to be very careful
about an intestinal obstruction.. When I went to the dr.. with
severe pain, I was admitted and spent 4 days NPO getting CT scans and
x-rays.. The pain never stopped.. It was on my left side sort of
under my ribs.. I couldn't LAY Flat orstand up straight..But my
bowels moved, and the scans were negative, so I was sent home.. Two
days later, I went out to eat and drank a glass of wine.. The next
night I began to vomit and diarrhea, fever and still in pain.. I
thought I caught the flu and I didn't want to caLl the Dr.. and go
back in the hospital.. The pain in my side has never stopped.. I have
white stools often with fat (YUCK!) I have LOST 15 Lbs since March..
I am at 125 and can't gain it back.. I also have acid reflux aLl the
time..Last week the pain was so bad, and I started passing bloody
mucus so I went to the ER..The Dr there said It was not pancreatitis
because my blood enzymes weren't elevated..After that My regular doc
started me on creon and prevacid..After about A week on the creon,
BM's look better, but stiLL not normal..
Is there another test they can run, or should I ask them to review
the CT scans? Is there anything else I can do besides take the
enzymes? Or am I way off on this thing?
Thanks,
Lauri