Huge archive

Hi Everyone,
ReeAnn had this question last fall and again is has come up with her.
Today ReeAnn went to see her GI to talk to him about some problems
she was having. When the nurse took her temperature it was 94.5. We
have it documented in the low 95's, but this is the lowest reading we
have gotten. When we ask about this they seem doctors and nurse alike
are not concern.
This only seems to happen in the fall, winter and early spring
months. ReeAnn sweats a lot during this time of year too. Every time
her temp rises to 96 ot 97 she breaks out in a whole body sweat. I
was wondering if any one else has experienced this and has an answer
why this may be happening.
With Warmest Regards & God Bless
Gary Morris ~ Virginia
Customer Service Rep moderator.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

Hi there. We were just approved. My name is Christina, I am a 25
year old mother of two. My husband, Derek, is 26, and teaches
culinary at our community college. Our little ones are 5 1/2 and
3. We homeschool them, as Kentucky is not known for it's excelent
schools! We have 2 dogs, 2 fish, 1 cat, and 1 turtle! We love to
garden, bike, hike, yard sale, read, and play with the kids. Right
now we are all scared.
Derek has had pancreatitis about 4 times that we know of. Last july
he got his first attack. He was working third shift, and not eating
regularly. He had lost weight also. He came home starving, ate a
huge meal, and then was in agony about 30 minutes later.
The sencond one followed a beer. We didn't know! The third ones
was after a large fatty meal.
The fourth was monday before last. He has been busy, not eating
regular and we ate a large fatty meal at my mother's house. He was
admitted for four days.
Our situation with GI doctors has been infuriating. We have seen
two different ones that did nothing and said hopefully it would not
happen again. With this last one, they said he needed to have an
ERCP because is may be SOD. They said we need to go to different
doctor for this.
I have, since, decided to educate myself as much as possible in this
matter. He does not want to have this done. The risk of his
pancreas flaring up is just so high! He doesn't have chronic
pancreatitis, and we want to keep it that way. Gallbladder problems
run in his family, but his has shown nosigns of stones.
We are now eating a low(30g) fat diet and he is eating 6-7 times a
day. I have been doing much research, and have many questions.
Thank you for being here.
Christina

Flu Vaccine Shortage
Here are the guidelines established by the Centers for Disease
Control (CDC), as outlined in the flu vaccine update on October 6th.
*children 6 to 23 months of age
*people 65 years of age and older
*people 2 to 64 years of age with underlying chronic medical
conditions
*women who will be pregnant during the flu season
*residents of nursing homes and long-term care facilities
*children 6-18 years of age receiving long-term aspirin therapy
*health care workers with direct patient care
*out-of-home caregivers and household contacts of children
under 6 months of age
Some news stores on the vaccine shortage
http://www.nature.com/news/2004/041004/full/041004-8.html
http://seniorhealth.about.com/od/prevention/qt/2004_FLU.htm
With Warmest Regards & God Bless
Gary Morris ~ Virginia
Customer Service Rep moderator.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

Oven Fish 'n' Chips
2 tbsps olive or vegetable oil
1/4 tsp pepper
4 medium baking potatoes, peeled
1/3 cup all-purpose flour
1/4 tsp pepper
Egg substitute equivalent to 1 egg
2 tbsps water
2/3 cup crushed cornflakes
1 tbsp grated Parmesan cheese
1/8 tsp cayenne pepper
1 lb frozen haddock fillets, or any thick white fish
In a medium bowl, combine oil and pepper. Cut potatoes lengthwise into
1/2-inch strips. Add to oil mixture; toss to coat. Place on a
15-by-10-by-1-inch baking pan coated with nonstick cooking spray.
Bake,
uncovered, at 425 degrees for 25 to 30 minutes or until golden brown
and
crisp.
Meanwhile, combine flour and pepper in a shallow dish. In a second
dish,
beat egg substitute and water. In a third dish, combine cornflakes,
cheese
and cayenne. Dredge fish in flour, then dip in egg mixture and coat
with
crumb mixture. Place on a baking sheet that has been coated with
nonstick
cooking spray. Bake at 425 degrees for 10 to 15 minutes or until fish
flakes
easily with a fork. Serve with chips.
Serves 4
For fish: one 4-ounce serving equals 243 Calories;328mg Sodium;67mg
Chol;28g
Carbs;27g Protein;2g Fat
For chips: 1 4-ounce serving equals 137 Calories;4mg Sodium;0mg
Chol;18g
Carbs;2g Protein;7g Fat

I saw my GI last Tues (he's a motility specialist and has been the one who's
treating my gp). I was diagnosed with GP 4 yrs ago and my GES back then seemed
to confirm the diagnosis.
I had a GES last month which came back normal. So after we went over all my
symptoms, how I felt day to day, what helps, what hurts, and he felt around my
abdomen "does this hurt, does that hurt," etc, he now believes either I have a
very mild case of gp, or I don't have it at all. He thinks I have abdominal
migraines and that it's been my problem for years, just that no one ever looked
for it. Abdominal migraines, from what I understand, are like the cyclic
vomiting syndrome but include severe abdominal pain as well. I already get
migraines, so he said, based on all my symptoms, it's not a far stretch to
assume my gp-like probs are actually abdominal migraines.
And there are no support groups that I could find, for abdominal migraines -
only ones for cyclic vomiting syndrome, which isn't quite the same thing - plus
the ones for cvs all seem to be geared towards kids or parents of kids who have
it!
And, do you want to hear something ironic? My 7 month old Boston Terrier, who
vomits/regurgitates intermittently, $3000 later in medical bills, appears to
have gp, and is on Reglan & Pepcid - and she's doing alot better with the Reglan
than I ever did as far as side effects go! I think it's cheaper for her to be
on Reglan than it was for me - she only takes 1/4 pill twice a day - and it's
only $0.99/pill.
So, back to me, I don't know whether I'm happy or upset that I don't have gp -
because I have no one to talk to about this, and I feel like everything I
learned doesn't apply anymore. The dr said in adults there's no studies that
show it ever goes away or gets better - and it looks like I developed this in my
teens (I'm 34 now), and it's only gotten worse since then.
My husband went to the ER fri nite after work - luckily his abdominal pain was
another kidney stone - that he passed while waiting to get his catscan!
I'm still having pancreas probs, I can't seem to get my potassium up no matter
what I do, my 23 day cylce is keeping to schedule perfectly - where I have my
period for 12 days and then am off 11 - so now I'm anemic again, and the stress
of everything has flared up my IBS so bad that by taking Bentyl & NuLev, it's
not controlling the diarrhea AT ALL! And, of course, my sphincter of oddi
dysfunction (sod) pain is there without fail, too!
And if one more dr asks me "So, are you still going to try to get pregnant again
soon?" I'm gonna flip! I don't even know if it would help or hurt me!
UGH!!!!
Love and Hugs,
Cathie in PA

Abby,
Michelle just turned 11 in Aug. She had been in the hopital 8 times
in the past four years. She usually averages a week at a time, but
has stayed twice for two weeks. She has had two PICC lines and been
on TPN twice as well as home health once.
On the Denton subject, small world huh?? We have lived here nine
years now.
Blessings,
Christine
Denton, TX.

Gary,
thanks to you and ReeAnn for your prayers. I do so love my little KayDee. She
is rotten to the core, though! I would never believe the level of understanding
that dogs have prior to having my KayDee. I used to think people who treated
their dogs almost like children were psycho! Yeah, sure, the dog knows when you
don't feel well, or the dog knows when you are going to be gone for a while.
Well, I'm now a believer. My little KayDee knows so much more than she is able
to convey. She can always tell when I'm not feeling well and I swear her little
brown eyes look so sad when she looks at me.
Unfortunately KayDee has a birth defect in her spine. She has only got 5 lumbar
vertebrae and she should have 6. Three of the 5 she has are fused together. We
had one of the most horrible nights of my life only a week or so prior to
Nikki's wedding. Thank goodness Nikki was home doing all the last minute stuff
prior to the wedding. KayDee had limped a time or two and I assumed she'd hurt
her hip or back again and would need some arthritis meds. She had an appt the
next morning with her vet for a re-check on a cyst on the top of her head that
we'd had removed surgically. I decided she was okay to wait til the next day
since she only limped a couple of times. That night she was asleep in my lap in
the recliner when she moved and literally began screaming in pain. I have never
heard a dog scream before, but KayDee was screaming! Of course, this was after
10 p.m. on a week night. My husband would have had to drive us to the vet if
Nikki had not been there. Nikki drove the hour to the emergency vet with KayDee
in my lap screaming and Nikki and I both crying. KayDee had hurt her back or
hip (realize now it was likely her back before) on a couple of occasions but
always responded well to just crating her for a few days and arthritis meds.
The vet had said that if it happened again we should x-ray. Well, the emergency
vet came in to tell me that he had bad news - he said, "you have got a deformed
puppy dog". Then he told me the rest. He told me that in 20 years of practice
he had never seen a dog with a missing vertebrae. He said he felt sure she
would need a myleogram and back surgery right away. They wanted to keep her
overnight but I couldn't stand the thoughts of leaving her. They had given her
mega steriods, tagamet for her tummy, and pain med. The vet told me it wouldn't
hurt her for me to bring her home but to watch for any signs of paralysis as
that would mean emergency surgery was necessary. On the way home, she wimpered
some but then finally fell asleep in my lap. When we got home I put her in her
kennel at the foot of my bed. She slept through the night and then didn't seem
to be in pain the next morning. The emergency vet had given me the name of the
only vet in North Alabama that does back surgery on dogs and told me to call him
and my regular vet. I called the back surgery vet and he was so incredibly
kind. He told me to take my time when I started crying as I was trying to tell
him what was wrong. He told me that the problem KayDee had was rare but he had
seen it before. He said that since she was already better that he felt sure she
would respond to conservative treatment this time. He told me to take the
x-rays to our regular vet, who he knew. He said our vet was very good and would
let him know if he needed to see KayDee at this time. He said he felt that
crating her for a couple of weeks and giving her muscle relaxers and arthritis
meds would settle things down. I asked him if she would most likely need
surgery at some point. He said that she might. He gave me the price for the
myleogram and surgery and told me not to hesitate to call him at any time. The
price was high ($1800) but nowhere near the $5000-$6000 that I had expected.
Thankfully, KayDee responded very well to conservative treatment. It was very
hard to keep her from running and jumping just a day or so after the incident!
So far, she's doing fine and this happened the end of May. However, I realize
that we have to make her be extra careful to prevent further damage. We try not
to let her jump but sometimes she's too quick.
She is my little angel and I don't know what I would do without her!
Karen W

Hi to all,
I pray your all having pain-free holiday!
I spoke to some of you Friday nite during chat and had to leave since
we were going to the movies. It was a late movie and didn't get home
until midnight or so. By 3am, Michelle was by my bedside, crying
from being in so much pain. She took her pain meds, and finally fell
asleep around 5am. She started throwing up in the morning. I have
cut back on her food intake and am making sure she is drinking plenty
of water. I don't want to let her get dehydrated, besides, when it
gets too bad and she can't handle water, we know it's time for a trip
to the hospital.
Praise God, no visits, and she has cut back on pain meds, but she is
still so uncomfortable. I hate not being able to make her well and
no control over this stupid thing.
Sorry, just overwhelmed with her being sick--thought we had a handle
on it. DUH on me, don't know what I was thinking.
Blessings,
Christine
Denton, TX.

:( I'm sorry Christine. How old is Michelle? This
must be so horrible as a parent. I just can't
imagine. I'll keep you in my thoughts.
BTW - I have family in the Denton area. My mom grew
up in Dallas.
Abby
State College, PA

=====

Thanks for the info on doctors. I think we're going
to wait for now. We saw Sean's doctor today and feel
better about the coordination of his care now that all
of his medical records have been transferred here.
There's nothing acute going on right now, so I guess
we just have to be patient and wait for him to heal.
I probably should give a brief overview of what has
happened with him, since it has been a while since
I've written anything on this list. Sean was admitted
to the hospital on March 20 with pancreatitis due to
alcohol consumption. He was in the ICU for 10 weeks
and back and forth between hospitals and rehab
hospitals until he finally came home at the end of
August. It truly is a miracle that he's alive (and I
don't really believe in miracles). He had multiple
organ failure when he arrived, spent time on dialysis,
and was on the ventilator for most of that time - he
went into ARDS (Adult respiratory distress syndrome).
He had multiple surgeries during that time (pancreatic
debridment) and they left him open with a wound vac to
allow him to heal from the inside out. Amazingly, he
has a little bit of pancreas left and doesn't require
insulin, but he just started taking pancrease. He
still has some drainage at the wound site due to a
fistula that is causing pancreatic enzymes to come out
onto his skin. We also learned today that he has a
hernia because they didn't suture the muscle wall
(which I expected), so he'll have that surgery in his
future. He has multiple abscesses in his abdomen,
including an abscess or pseudocyst around the tail of
his remaining pancreas. He has a tube in one of the
abscesses in order to drain it.
Although this all sounds horrible, he really is doing
quite well. His strength is improving daily and he
can walk without crutches or anything (his muscles
really degenerated in the ICU). His pain is
decreasing and we're going to start weaning him off of
the duragesic that he's been taking for months. He
has no trouble eating, although is still losing weight
(but that could also be due to a decrease in swelling
in his legs). His spirits are getting better, and
he's in therapy to help him with the alcoholism. He
is committed to not drinking again, knowing it would
most likely kill him.
So, it has been a wild ride. If anyone else on the
list has experienced something like this, I would be
interested in hearing about it.
Abby
State College, PA
=====

Brenda and Ryan
Prayers for safe travels, productive doctor visits, and overall good
day. Let us know how the day goes.
Rhonda
Tulsa, OK

Reminder Reminder from the Calendar of ThePancreatitisPlace
Happy Thanksgiving Canada
Monday October 11, 2004
All Day
This event does not repeat.
Notes:
Best wishes for a HAPPY Thanksgiving Day to our Canadian Members!!!

Ryan, Brenda's son, will be travel to Milwaukee tomorrow for 6
appointments. Ryan doesn't travel well, so the doctors scheduled a
full day for him. This young man had gone thought so much in dealing
with this awful illness. I like for all of us to add Ryan and his
family to our prayers tonight, for good reports from his team of
doctors and for a safe trip back home.
Our thoughts and prayers are with you Ryan.
With Warmest Regards & God Bless
Gary Morris ~ Virginia
Customer Service Rep moderator.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

Ryan will be in my prayers for a safe and comfortable journey.
Karen W
alabama

Good Afternoon All,
I'm putting together the Calendar of Events for November. If
anyone has any Birthdays or Anniversary please send an e-mail to
gary@... and Subject Name: Calendar, I will be
more then happen to add it to November NewsLetter.
With Warmest Regards & God Bless
Gary Morris ~ Virginia
Customer Service Rep moderator.
Phone 434-490-7191
gary@...
http://www.thepancreatitisplace.org/

ReeAnn,
My husband has acid reflux pretty bad but for the most part, as long as he takes
nexium he doesn't have that much problems with it. A year or so ago, the doctor
put him on Bextra for joint pain. Within a couple of days he started
complaining about his tongue burning. We looked up Bextra on several
prescription drug web sites and the burning tongue wasn't listed as a potential
side effect. However, my husband was convinced it was the Bextra that was
causing his tongue to burn so he quit taking it and within 2 days of stopping
the Bextra, his tongue no longer burned. We just chalked it up to a weird side
effect. It never occurred to me that the Bextra could have been making the acid
reflux worse (despite taking Nexium) and that was the reason for his tongue
burning. Of course when I read your post, it made perfect sense to me that the
Bextra made the acid reflux worse and the acid reflux was making his tongue
sore. He has taken naproxen and is now taking mobic with no burning tongue or
noticeable affect on the acid reflux. I'm glad he refused to continue taking
the Bextra. He's only had one endoscopy but it showed moderate gastritis and
inflamation in his esophagus in spite of taking Nexium. If he had continued
taking the Bextra, he might very well have ended up with a pre-cancerous
condition.
Forgive me if my post is scattered and doesn't make a lot of sense. I haven't
slept well at all the last few days so I'm functioning (or actually not
functioning) on about 2-4 hours of sleep each night for the last few nights.
Thanks for solving the mystery as to why the Bextra made his tongue burn!
Karen W

ReAnn,
Thanks for answering 8^). I didn't realize that too few enzymes brings
on the diarrhea. I tend toward that side of the equation anyway. I have been
playing with when to take them. I wonder how well the little micro pellets
disolve and are utilized. There doesn't seem to be any rhyme or reason to
any of it. Is gastritis a co-condition always? I feel now that if I could
get my stomach calmed down I could work on the pancreatitis better.
Ironically enough, my SLE & FM are very quiet!
Also, does anyone else's mouth burn? Sometimes it is only my tongue &
lower lip and other times the whole thing.
Last question (for this post <s
them when I take a deep breath. I am a singer and when we resumed rehearsal
this fall I noticed that taking the deep breaths seemed to make my innards
feel worse and cramped more. Is this common? Any suggestions?
Nancy F, California

Dear Nancy,
From your questions, I belivee you are having problems with GERD/Reflux. I
too have the burning tongue and it feels like my reflux is back, a constant
sore throat and a sore burning in the esophagus. I used to have it real bad.
My esophagus was completely ulcerated. The GI theorized that I got the
hiatal hernia from carrying twins, 20 some odd years prior. This was
discovered
in August 1999. In April 2000 I had duel surgery - Nissen Fundoplication and
gall bladder went Bye-Bye. The fundo is getting your stomach wrapped around
bottom of the esophagus to form a new, one-way valve. Until 3-4 months ago
I was unable to throw up. Got the dry heaves instead. Now I get both.
The fundo, also known as a wrap, was done too tight. I have always had a
lot of problems food getting stuck at the surgery site. Several dilations were
done, trying to loosen it up. Last spring I had a Botox treatment and I
think it worked too good. Reflux is back full force. Last time I had an EDG,
last spring also, they found Barrett's which is a precancerus condition,
caused by the reflux.
Please get this checked out. You don't want it to lead to a precancerous
condition like I have. If you are not taking something like Prevacid or
Nexium, you probably need to. While we all have additional digestive problams,
this is a seperate issue from the pancreatitis and needs to be checked.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page (_www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org/) _)_

So far my day is going ok. Rained last night so it did cool down, way down, it
is a little after 4pm and its only 61 degrees when we are use to having 85
degree weather, bout time lol.
Today feels really slow to me, feels like it is dragging. I even called the
number on the back of my Oregon Trail Card to see how much foodstamps I got, got
less than what the report said, so I am hoping next month will be better, they
said this month there was gonna be 126 in there, there was only 77, oh well, we
can make do again.
I am enjoying the slow day though, took 2 naps, lol, feel like taking another
one, but I know that if I do, I wont be in bed until midnight again and I dont
want to do that to myself.
Well I need to go look to see what I have to make dinner with, hope to hear from
you all soon.
Jennifer

Dear Nancy,
Getting the right amount of enzymes is a tricky process. Too few and you
have diarrhea. Too many and you have constipation. A dosage that worked
yesterday, might not work tomorrow. I am constantly adjusting how may
Pancrease
MT 10s I am taking. The higher the fat contain, the more I will take.
Also you need to play around with the best way to take them. By this I mean
taking them before a meal, taking them immediately after eating, or taking
them as you eat. This too can effect how well they are working for you. I
started with taking them before a meal. Now I spread them out as I am eating.
You need to find out which works best for you as we are all different.
As far as treating pancreatitis, the best any doctor can do is treat the
symptoms. There is no magic cure that will make it all go away. At least
right
now. There is hope for a cure in a few years, especially if we can get the
ban lifted off stem cell research. Speaking of which, George Bush banned
stem cell research and Kerry supports it. Not trying to tell you how to vote,
just sharing some important information on where they stand on this issue.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page _www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org/)

Thanks for the heads up on that Kimber. Here are some other links.
http://www.viox-heart-attack.com
http://www.vioxxcentral.com
http://www.vioxxwarning.com/
http://www.vioxx.us.com
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page (_www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org) )

Hello Everyone,
Please accept my apologies for the double links in my signature. I am not
sure why this is occurring. My email only shows one link for each. Will be
trying a couple of different things to correct this problem. Hopefully will
find the solution.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page (_www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org) )

Please note the following correction to the October newsletter:
Bruce's Birthday is October 3rd and Carol & Bruce will be celebrating their
39th anniversary.
Please forgive my typos.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page _www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org/)

Dear Pam,
YES there is such a thing as hereditary pancreatitis and it can be one of
several types of pancreatitis, such as Cystic Fbrosis induced Pancreatitis,
adnomalities of the duct work, etc. I have to call Monday about seeing my GI.
Hopefully I will get to see him on Tuesday (the only day he sees patients).
His nurse has been out of the office this last week and his new secretary was
no help at all when I called. Just got the usual directives of small, low
meals and stay hydrated.
Anyway, I have previously written to his nurse asking to be tested for
hereditary pancreatitis because one of my twin daughters is showing signs of
pancreatitis (this just breaks my heart). Also like you, my mother suffered
with
gall bladder problems. So I am really hoping to be tested for it. My
daughter lives out of state and has no insurance, difficult for her to have the
testing done.
In answer to your second question, while I do not personally know of anyone
who's adhesions are causing pancreatitis, it is very possible that they can do
it. Adhesions any where along the digestive tract can cause problems of
one kind or another.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page _www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org/)

Hey guys,
After having a few very good days last week, I ended up puking my guts out and
in horrible pain Saturday night. I was admitted and got home Thursday
afternoon. I didn't see my GI doc at all, just my internal med doc. He told me
the x-ray done in the ER showed I had an ileus. On Tuesday morning, I was hit
with horrendous pain on both sides of my upper abdomen - kind of just under both
breasts, around the top of my rib cage. I also had some pain right in the
middle, just below my breasts, but the worse pain was about a fist sized area on
both the left and right sides. I'd had pain med only 30 minutes before it hit
and my typical under the right rib panc pain was down to about a 2. My doc
walked in just as I was having the pain episode. It was a 10+ and just sharp,
constant - same as my typical panc pain, only I've NEVER had pain in those areas
before. My doc said he was afraid the ileus was worse and that's what was
causing the pain. He ordered x-rays and told me if the ileus was worse they'd
have to do an NG tube. The pain lasted about an hour and then was totally gone.
On Wed. morning my doc told me the x-ray was fine - I assume that meant the
ileus was gone, but I didn't ask him. He told me that he'd let me go home on
Thursday if I was able to tolerate some solid food. Wednesday night I was hit
with the exact same pain as on Tues morning. I'd had pain med only 45 minutes
or so earlier and was just lying in the bed about to go to sleep. It was so
intense that breathing was very hard. I called and asked the nurse to come to
my room. She didn't have any ideas on what was causing the pain and asked me if
I wanted her to call my doc. I hated to have her do that because it was 10
p.m., but I knew I couldn't stand the pain for another 2 hours when I could have
more pain med. About 20 minutes later, the nurse came in and gave me another
dose of pain med. After about 15 more minutes, the pain was at least at a
tolerable level. Thankfully, I haven't had pain like that since Wed night, but
I have no idea what it could have been. Oh, when I was having the pain, my
abdomen (upper and lower) was distended. The right side of my upper abdomen was
visibly enlarged more than the left. Has anyone had episodes of this sort of
pain? Any ideas on what it might have been?
Now, for my next issue. I apologize for having to talk about bathroom issues,
but I can't take this much longer. Even before my latest hospital admission, I
have been having a lot of burning pain in areas of my abdomen when I try to have
a BM. If I strain just the tiniest little bit, it is almost unbearable.
Tonight it has been really bad. The worst burning pain is in between my ribs,
several inches above my navel. I also have the same burning pain, but not as
bad, in my lower left abdomen. The burning is just in a small area -about the
size of a quarter - and it is right where the incisional scar from my
hysterectomy ends. Leaning forward while I'm on the toilet did help the burning
in the area between my ribs a little. My hysterectomy was over 11 years ago and
it's only been the last couple of months that I have the burning pain at the end
of the incision. I sometimes have the pain even when I start to urinate. It's
like any type of pressure or tightening up of my abdomen causes burning pain
somewhere. I have had a lot of abdominal surgeries. 1983-tubal ligation, 1990
and 1991-two laparascopic surgeries to remove scar tissue around my right ovary,
1993-abdominal hysterectomy with appendectomy, 1998-gallbladder removed,
2001-left ovary and large cyst removed, 2001-gastric bypass, 2002-incisional
and inguinal hernia repaired in lower left abdomen, 2003-incisional hernia
repaired just above navel. I am wondering if I've maybe got scar tissue built
up in various places in my abdomen from my many abdominal surgeries.
Also, I am having this constant pain near my navel. Sometimes it hurts on the
right side of the navel, other times, it is above or below the navel. Today it
has been hurting on the left side of the navel. It is better now than it was
earlier, but it is still just a constant pain. It was at about a 7, but it's
now about a 4-5.
Another thing is that I have several 'lumpy' areas in my abdomen. When I am
having pain, the lumpy areas are more prominent. I first noticed the ones that
are near the bottom of my right rib around January 2003. My husband was very
concerned about them and told me to make I told the doctor about them. I had
had my port a cath put in around this time, so I had a re-check with the
surgeon. I told him about the areas and he said they are lipomas (fatty
tumors). He told me to keep a watch on them and that if they started causing me
problems, he would do surgery and remove them. He told me that the surgery
wouldn't be a bad one.
Sometime over the summer, I started having several painful and lumpy areas in my
abdomen. I went to the surgeon who did my last hernia repair in Aug 2003
because I thought maybe I had more hernias. He said he didn't feel any hernias
but ordered a ct scan. CT scan didn't reveal anything. He told me that some
people just have lumpy abdominal walls and that the lumps were probably just
that I have a lumpy abdominal wall. He couldn't offer any explanation for the
pain and burning of the lumpy areas. He also had no explanation as to why the
lumpy areas became more prominent when I am having panc flare-ups.
I am so frustrated. It is hard enough to deal with my typical panc pain. These
new pains are very hard to deal with. I keep trying to come up with some
logical reason for this new pain. If anyone has any ideas, I'd be very
grateful.
I made an appt to see the surgeon that put in my port a cath since he's the one
that told me that the first lumps were lipomas and if they started giving me
trouble he would remove them. I see him on Wednesday. I'm also going to make
an appt to see the surgeon who did my gastric bypass. I'm supposed to see him
once a year for life anyway. I'm wondering if I might have some internal
hernias because in trying to research on the internet, I ran across info saying
that one of the possible complications from the roux-en-y gastric bypass is
internal hernias. The info I found said internal hernias can cause intestinal
blockage, which might explain the ileus I just had.
My sis got tickets for the University of Kentucky and University of Alabama
football game this weekend. My brother-in-law is from Kentucky and is a
University of Kentucky fan and my hubby is a huge University of Alabama fan. My
hubby, brother-in-law, and 8 year old nephew, Michael, left to go to Kentucky
tonight. They'll spend the night with my brother-in-law's parents in Bowling
Green, KY, and then drive to Lexington, KY for the 12:30 p.m. game tomorrow. I
think the tickets are on the UK side, so my hubby may not make it out alive! UK
is known for having a great basketball team, but their football team has never
been that great, from what I've heard. I'm sure they'll have fun - just having
a guys outing. Michael played on touch football league last year, but other
than that, he's never been to a football game.
So, I'm home alone til late Saturday evening. Well, I have my precious KayDee -
my spoiled rotten miniature dachshund. Well, I think the recliner is calling to
me. KayDee is so funny. She thinks she is a queen. She has been back to the
computer room several times whining at me. I got up to let her go out and she
just ran to the recliner and refused to budge. That's her way of telling me I
am supposed to get in the recliner and let her in my lap and snuggle under the
down throw. I guess she finally gave up and went to the recliner by herself
because I haven't heard a peep out of her in a while.
I'm sorry this is so long and totally focused on my latest ailments.
I do hope this finds everyone having better days. As you can imagine, I am
quite behind on my e-mails, but I'm trying to get caught up. I'm down to just
123 unread messages!
Karen W
alabama

Hello Everyone,
While researching something else, I ran across this press release and
thought I would share it. While I hate to see anyone suffer from pancreatitis,
it
is good to see it in the news. We sure could use a little more pbulic
awareness about this dreadful disease.
Jan Crouch, Co-Founder Of TBN Admitted to Hospital
Friday September 24, 9:18 pm ET
LOS ANGELES--(BUSINESS WIRE)--Sept. 24, 2004--TBN officials confirmed that
Mrs. Jan Crouch, wife of Pastor Paul Crouch, founder of Trinity Broadcasting
Network, has been admitted to an undisclosed California hospital, after being
taken to the emergency room for severe abdominal pain.
Mrs. Crouch has been diagnosed with acute pancreatitis and gall stones.
There is no word on how long she will be in the hospital.
Jan Crouch is well known for her humanitarian relief efforts and work with
children on the island of Haiti.
Paul Crouch , Jr., eldest son of the Crouches, requested prayer for his
mother on TBN.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page _www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org/)

Happy Birthday TPP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Rhonda <rhonda.chitwood@...
Celebration time. I am thankful for this group and the support it
gives. Happy Birthday to all involved in making this group work.
Rhonda and Amanda
Tulsa, OK
www.thepancreatitisplace.org

Celebration time. I am thankful for this group and the support it
gives. Happy Birthday to all involved in making this group work.
Rhonda and Amanda
Tulsa, OK

Ree,
that page is no longer available at this website.
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.

Thanks for this information, Ellen. I haven't written in a while -
as a recap, my husband was diagnosed with pancreatitis in March and
was in the ICU for 10 weeks. He's home now, and we are very
frustrated with the local doctors who want to send us back to the
surgeons who did his surgery to deal with abscesses in his abdomen,
while the surgeons think the local docs can deal with it. We're
considering traveling to someone who specializes in pancreatitis so
we can make sure that the right things are being done for him. The
two I found close to us are one in Cincinnati and another in
Pittsburgh (UPMC). Any knowledge of these places?
Abby

Dear Reeann
Just a quick message of thanks to yourself and those that contribute the effort
and excellent work in keeping people like myself intouch and informed on
different matters relating to pancreatitis.
I have effortlessly transfered your posted newsletter over to my MS xp Word and
will then spend time in enjoying the reading of it offline.
Thanks again
Regards
Sean Quinn
ReeAnn <reeannm@...
The following is the Premier edition of TPP's Newletter, in plain
text format. Later today I will be putting a Microsoft Works
edition in the file section with all the pretty formatting. If you
need it in any other format, please let me know. How it will look
and line up depends on what program you use to view your mail. If
it doesn't look good, let me know what word processor you use, and I
will send it as an attachment to an email. Please put NEWSLETTER in
the subject line.
I hope you will also share this newsletter with family, friends, and
medical professionals. If you would like someone to receive a
formtted copy in the US mail, please send me an email
(ReeAnn@...) NEWSLETTER in the subject line.
Also, if you have any suggestions, comments, articles you would like
to write, please share that too with me.
Here it is:

The following is the Premier edition of TPP's Newletter, in plain
text format. Later today I will be putting a Microsoft Works
edition in the file section with all the pretty formatting. If you
need it in any other format, please let me know. How it will look
and line up depends on what program you use to view your mail. If
it doesn't look good, let me know what word processor you use, and I
will send it as an attachment to an email. Please put NEWSLETTER in
the subject line.
I hope you will also share this newsletter with family, friends, and
medical professionals. If you would like someone to receive a
formtted copy in the US mail, please send me an email
(ReeAnn@...) NEWSLETTER in the subject line.
Also, if you have any suggestions, comments, articles you would like
to write, please share that too with me.
Here it is:

Hi Evon,
I have tons of questions!
I've had acute pancreatitis accompanying gall bladder attacks since 1990
& probably earlier. Then I've had the "mystery" GI bouts ever since then,
once with H. pylorii in my stomach, twice with drug induced ulcers (from
NSAIDS for lupus). The current unpleasantness has lasted since Aug. 15,
2003. That date I first went to my PCP with a generalized pain in the gut.
Just last week the GI doc said, "... if it walks like a duck, quacks like a
duck..." He had me start Pancrease 6 weeks ago. I've had every blood test &
scan known to man, I think, and they all show nothing conclusive. Just
gastritis and fat in the stool. My rheumatologist suggested that test.
So thus far, I haven't been in the hospital. Thank God! I have SLE,
diabetes II, Fibromyalgia, Sjogren's, ... I cannot lie on a regular bed or
gurney more than a few minutes before I get into a lot of pain & stiffness.
So a visit to the ER or same day surgery or even radiology where they want
me on a gurney or a trolley to go into the tube is sheer agony. I medicate
before, during & after. ;)
I am very confused about what to eat. I've lost 5 pounds just this week
what with being told, "Don't eat fat." Period. Well, with the diabetes I've
always tended toward the low carb side. Eat a piece of cheese for a snack.
So, if red meat & cheese are gone, what DO I eat? The broccoli family are
just too gaseous, the starches are not good for blood sugar, yada, yada...
My tummy's too sore for salad stuff, though I push that limit, probably too
much. I could really use some help here <G
What can I do for the pain? My GI doc gave me a serious paragraph about
getting a tolerance to morphine now and it not working for me later. I'm not
sure this constant burning in my stomach IS from the pancreatitis or should
be treated separately. I'm taking Protonix twice a day, using Pancrease MT
16 x 3 caps a meal. Doc said that the enzymes don't do anything to affect
the pancreatitis, they only aid in digestion, and one can't judge how well
they are working by how one feels after eating & taking them. -??????- Then
what DOES treat the CP?
Nancy F< nfarrell22@...

i hope you all get better soon marie12191

Hi Gang,
Well, here we go again with my latest entry to the saga that is
now my life.
Yesterday was my second appt with the pa who is over the pain
clinic that I now have to report to. As of yesterday, he has decided
that I do NOT in fact have pancreatitis and took away all pain meds,
enzymes, almost everything that has at least been working over the
last year. Now the only meds I have are zocor, zoloft, insulin,
glucaphage, benedryl, baby aspirin and I believe that is about it.
He has come to this conclusion because my labs come back normal (tho
noone has ran amylase or lypase in a very long time) and the ct that
was done in june came back unremarkable. Yes, I am still in pain and
nauseous with vomiting at times but "that is all in your head, I
believe". The pain is psychosematic he says.
Where to go from here? Well, never fear, I have a few ideas
and are gonna put some things in motion. I am determined to get some
answers because if I do not have this then what is going on? How did
this disease disappear over the last 3 years? Why is there still pain
everyday? Upon examination he asked where the pain is and when I
covered the area with my hand he looked at my husband and said, "
Well, at least she knows where the pancrease is!" Excuse me?????
The one question I asked that he had no answer for was," If I
don't have this then why did the previous doc fill out all the
paperwork and send it in to get me on disability since she didn't
ever see me being able to work again? I have already been denied
twice and have a hearing after the first of the year. What about
that?" As i said I recieved no answer. So being that I now have NO
pain meds to deal with this everyday, the only thing I can say
is "Let the fun begin!!" Oh yes, he also had me sign a pain contract
even tho I am unable to get any help with the pain. I see him again
in 2 weeks and I hope I don't suffer to bad before then. In the
contract it says I am unable to utilize the ER unless broken bones,
MVA you know "real emergencies".
I hope this finds everyone having painfree days and restful
nights. God bless you all.
Kelly from Oklahoma

Hello Everyone,
Just wanted to pass along a heads up. Under pressure from the FDA, Merck &
Co., Inc. pulled Vioxx from ALL markets under growing concern about side
effects. Here is the link to the FDA that talks about it:
_http://www.fda.gov/cder/drug/infopage/vioxx/default.htm_
(http://www.fda.gov/cder/drug/infopage/vioxx/default.htm) . If you have been
taking Vioxx for pain, and have experienced
any side effects, please do an internet search on Vioxx to find class action
suit information. If you need help finding it, I will be glad to help.
Lots of Gentle Hugs,
ReeAnn ~ Virginia
(434) 409-7162 or
(434) 979-0176
Founder ~ ThePancreatitisPlace
Home Page _www.thepancreatitisplace.org_
(http://www.thepancreatitisplace.org/)

Hello Everyone,
I found some promising information on the Time Magazine website
(_http://www.time.com/time/covers/1101041011/nextdrugs.html_
(http://www.time.com/time/covers/1101041011/nextdrugs.html) ). Things that are
being developed now and
will be available (hopefully) in the near future. Here is the most pertinate
information from the website:
NAVIGATOR
For the millions of diabetics who test their blood by pricking their finger
up to eight times a day, Abbott researchers have come up with a less painful
alternativeâ a patch called the Navigator, which is embedded with a wireless
transmitter that can read glucose levels once a minute and works for three
days at a time before needing to be changed. The continuous sugar-level
readings are sent to a small receiver kept in a pocket or purse, and originate
from
the patch's hairlike filament that penetrates ever so slightly beneath the
skin. But it doesn't probe deep enough to draw blood. Instead it measures
glucose levels in the body's interstitial fluid. These readings often lag
behind
actual blood-sugar levels by about 15 minutes, but experts say that's still
plenty of time to spot a problem. Navigator's repeated readings let patients
know when their glucose levels are trending dangerously high or lowâor
holding
steady. And that's particularly liberating for Type 1 diabetics, who cannot
make enough insulin to harness their sugar levels and therefore need to
maintain strict control over their blood sugar. It's also helpful for Type 2
diabetics, whose bodies cannot process the insulin they have, so they must plan
how
much to eat or exercise (both of which change sugar levels) based on their
current glucose levels.

Hello Rhonda,
Sorry to hear that Amanda is feeling so bad right now. The nauseous
feeling goes hand in hand with pancreatitis, that I do know. There
has been many days that Robert would not be in an attack but would
just feel bad and nauseous and lay in the bed. I do know that the
ERCP always brought on an attack with him. as far as the other
questions, I cannot answer them myself, but Robert and some of the
other members can answer for you, I am sure. I just hope that Amanda
is getting to feeling better as the day progresses. Please let her
know that she is in our thoughts and prayers.
God Bless
~*~Denise~*~
deniseatdiabetes@...
sdhammett@...

Hello to my TPP friends. Amanda has been feeling very poorly since
last Tuesday. She is not having an acute attack, but having moderate
pain in her uppper stomach and feeling very nauseous. She doesn't
feel like doing anything except lay in bed with a heating pad on her
stomach. This is not my Amanda who loves school and loves to be
outside playing. She wanted to try and go to school today, but woke
up still sick. Took a shower, but then ended up vomiting what little
was in her tummy. Haven't gone to the doctor because I can tell that
her enzyme levels are not elevated because her pain is not off the
charts. Guess this is just part of this horriable disease, just we
aren't familiar with the chronic side of it. We have only been
exposed to acute attacks. So much has changed within this past year,
it is scary. I am wondering if maybe hormones could be playing a
factor? She is twelve?? Or maybe it is just the normal progression
of pancreatitis? My last thought concerns the ERCP test we did last
September. I wonder if that test somehow made the pancreas more
irrated? I would appreciate anyone's thoughts.
Rhonda
Tulsa, OK

Hi everyone
Sorry i missed chat last Fri., for some reason i couldn`t get in.
The pain clinic finally came through for me, i`m now on morfein 30mg 6 times a
day also Marinol (marijuana) 2.5mg 4 at night and 6 thru the day. Its a little
early to tell how its going to work out but i`m praying it works.
Rita, i had 2 cycst removed a year ago last Jan. and 3 wks after the
operation 1 more cycst popped up. Unfortunately i can`t be operated on anymore
so i`m stuck with it. They say they might drain it through a ERCP. I just had a
MRCP done and they found a Gall stone, i have no idea what that is or what
they`re going to do about it and i`m at the point i really don`t care. I hope
Beauford is doing better.
One Day At A Time
Dave

Hi All, just wanted to let you all know Im still out here...have had
a horrid flareup during the past 2-3 days so just haven't felt well
enough to post with an update...but when I saw the email regarding
writing senators/congressmen...I just couldn't NOT respond!! This
has GOT TO BE raised up...WAAAYYYY UP to a level where we all are
treated with dignity and respect!! I have a couple of stories to
tell you all that have happened since I've been back from the
sphincterotomy (both panc and common bile duct) procedure...and now
that is WITH a diagnosis (awful/below sat. treatment from docs
stories that is)....anyway, just wanted to copy what I sent here.
Hope you are all well and will have to try and catch up with you all
in the coming days.
Laura
Hi, my name is Laura and I just wanted to say that I will
definitely add my story to get the awareness of the awful disease
out there. SOMEONE has got to do something about this...I feel
like we're in the stone age when it comes to this disease and the
reality of where we are at medically speaking. I can't write my
whole story right now (it's almost 12am EST and need to get some
sleep after a 2 day flare) but suffice to say that I had a
sphincterotomy on both my pancreatic and common bile duct performed
on August 25th by one of the BEST doctors that I have ever had the
priviledge to have known..I had to fly from RI to Indiana to do it,
and it was done by Dr Glen Lehman at the Indianapolis Medical
Center/Hospital. But I wouldn't change a thing because that is the
only way that I got a diagnosis was via ERCP/manometry. The
diagnosis turned out to be SOD...which is what I suspected all along
since having gall bladder surgery in February and that turned out to
do nothing. Let me also say that I haven't gotten any better since
the procedure but it was worth it just to get a diagnosis...I'm
still getting what I consider to be below satisfactory treatment
although Dr. Lehman DID refer me to a doc in my area that I've seen
once so far (!) and he "seemed" to be ok and knowledgable about this
disease. I will let you know whatever you need to in order to get
our stories out there...so please just let me know what I need to do
and I will be happy to!! Email me at:
she_remembers@...
or
darrow3@...
Laura

Hello Rita,
So glad to hear from you. I have been worried about you and Beauford
and not knowing what was going on. Sorry to hear you are in so much
pain with your back...Now, that is something that I can relate to,
since my back is messed up also. My back burns when I sit at the
computer for some time. Does this happen to you? Tell Beauford that
he is and always in Our thoughts and Prayers as well as you.
God Bless
~*~Denise~*~
Caregivers Moderator
deniseatdiabetes@...
sdhammett@...
http://www.thepancreatitisplace.org/

Hello Jennifer,
I am so glad that you are feeling better. I enjoyed Chat last night.
Look forward to chat on Sunday. Hope you will be there. We had a
beautiful day here in S.C. also. Hope you are having a Great Saturday
night. As always, Our thoughts and Prayers are with you.
~*~Denise~*~
Caregivers Moderator
deniseatdiabetes@...
sdhammett@...
http://www.thepancreatitisplace.org/

Hello Bruce,
Happy Birthday!!!!!!!! I hope you are having a GREAT Birthday. Try
not to eat too much cake :)
Denise

Hello Ashley,
Welcome to our Family at TPP (The Pancreatitis Place). I would like
to take a moment of your time to introduce myself. My name is Denise
Hammett and I live in South Carolina.My husband Robert has been
dealing with pancreatitis for over 15 years. TPP was created for
those suffering from Acute or Chronic Pancreatitis (or related
conditions) and their caregivers .If you have questions about this
illness, please feel free to jump right in and ask. Someone will
answer you. We have members here that have suffered for 15 or more
years. This group is here to share and learn all we can to deal with
this illness on a day by day basis. Feel free to check out the links
section. We are always adding new links to it. You can also check
out our photo section and see who you are posting to and maybe put a
photo up of you. We also have Chat 2 times a week. One on Friday
night and Sunday night at 7:00 Eastern Standard Time. You can access
the chat room with either AIM or AOL. If you need help accessing the
chat room, please feel free to contact one of the mangament team. We
are always glad to have family members come in and add support to
their loved ones. Bren is a very dear friend of mine and I know she
is so glad that you have joined to learn more about this illness. So,
if you have any questions that you need answered, please feel free to
ask, and someone will answer. Once again I want to give you the
warmest welcome to our family here at TPP. You have joined a family
of caring people that are here to help in any way they can. Our
thoughts and Prayers are with you . Have a Blessed Day
~*~Denise~*~
Caregivers Moderator
deniseatdiabetes@...
sdhammett@...
http://www.thepancreatitisplace.org/

Hello Jimmy,
I understand there is a fire lit up under you about how heartless the
docters can be to us "addicts:". Now The P.A. who is running the pain clinic
has accused me of selling my drugs a "drug dealer" as he put it. Ree had me
post the horrid story in our group site. Please feel free to read and fume. As
being they have once again let me run out of lots of meds I have now been
enduring withdrawels as well as increased pain. I was more than a little
embarrassed that it happened as I didn't want to appear as whining or being a
crybaby cause I didn't get my way. But myself and others like me need help.
When is the medical field gonna actually do some research on this and do
something positive for us instead of worrying about making "addicts". I am
sorry, but if being addicted means minimal pain, then so be it . I am more than
ready to be addicted than to have to deal with this severity on a daily basis.
What really kills me is that in my former life (pre pancreatitis), I also
worked in the medical field as an LPN and can honestly say that there has been
many a time a doc has hung up the phone on me rather than order one of my
patients something for pain relief and I proceeded to call them right back
and\or leave message after message until they had to at least call me to tell me
to leave them alone and then realize why I was so persistent, 95% of the time I
got relief for my patients. And older nurses always told me that that is the
attitude of docs regarding geriatrics....well.....I am far from being geriatric
but am still dealing with stubborn doc wanna be's , docs who don't care and
pretty much the whole crappy attitude the medical field has toward this disease
and its victims.
In a perfect world they would all have to experience our type of pain for a
full 24 hours with a doc standing next to them telling them that the pain is all
in their heads and all the other garbage we are told on a daily basis.
I back your decision 100% to make someone aware of the cruelty we as people or
even humans are having to endure because of the slowness of progress and idiocy
and uncaring of our docters. We are suffering and not one damn person cares who
is in the position to do something about it.
I wish you the best of luck and hope your wife is in as little pain as
possible. Let her know I am still looking for a little magic to make this
horror leave all our lives.
wishes for painfree days and restful nights,
Kelly from Oklahoma
P.S. If I can help in some way , please let me know.
jimmy <frightwriter@...
Particularly those involving doctors unwilling or afraid to
administer the proper (and needed) pain medications for your
pancreatitis.
After reading Kelly Reasor's post about her own doctor accusing her
of being an addict, and knowing my wife's situation, I have decided
to start writing Senators and Congressmen, and see if someday,
someway, they might put the DEA and the AMA on the spot in a
Congressional Inquiry.
I have had it with bullshit "RESIDENTS" trying to treat my wife for
pancreatitis when they don't even know what it is! And I have had it
with doctors who think that just because your counts are low, you
cannot possibly be having an attack. I DO have a few doctors on my
side who are willing to testify, if ever given the opportunity.
It is high time the f----- DEA stopped practicing medicine on
patients who need pain relief. HELL YES these people are addicted to
the pain medication...who wouldn't be?
Email you stories to me at either of the following addresses:
jimmycombs@...
jcombs@...
frightwriter@...
Let's see what the power of personal testimony and the history of
medications administered can do.
If I decide to use your story as testimony, I will email you back
requesting your permission to do so, which you will be required to
sign and mail/fax back to me.
Thanks.
www.thepancreatitisplace.org

Hello everyone, so far my weekend is going better and I am feeling so much
better, so much better that I had enough energy to clean my bedroom and went
through the clothes and hung them up and foled ones that needed folding and hand
washed some that were able to be hand washed lol.
It did reach 85 here today, boy, living here in Medford Oregon can be nice, but
we need rain, we do love rain, we just never really see it until the end of this
month or next month and rarely see snow, we see snow, but up in the mountains,
looks pretty when we can see it.
Well hope everyone had a great Saturday so far.

John,
my pain defintely gets worse at night, usually after about 6pm. I know
that most of my major acute attacks have occurred at night or really
early morning (before 6am).
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.

As I've written in the past, there are loads of GI specialists who
simply don't have enough knowledge about pancreatitis.I know
all too well as I've been to close to fifty of them. Some are
world famous.
But there are some really great ones out there. And it's up to
each of us to search for them.
Having Internet access means having the tool to do just that. It allows
us to research medical centers within and outside of our home states.
Once the names/ info of those highly specialized physicians is
obtained, access to a fax machine is needed. That allows us
to present our own case directly to those who might offer help.
And that's exactly what I did over and over until someone out there
offered to see me. I sent out a one-page synopsis of my GI history,
along with pertinent test results.
Several major hospitals turned me down. But one, eventually,
replied with an invitation to meet with someone on their GI
team. I jumped at the chance and it paid off in that I finally
had a bonafide diagnosis and prescriptions for helpful meds.
I flew in commuter planes, as well as drove to Johns Hopkins
and The Cleveland Clinic.
If you have to go out-of-state as I did, there are organizations
that offer free flights aboard private planes for sick people.
Finding them is also done on the Internet.
-Ellen Grove
NY

My Mom, who turned 84 yesterday, sustained water damage in her
Delray Beach condo. It came cascading through the roof and
soaked the carpeting. She's very lucky to have just that.
With the insurance company's permission, the wet and stinking
carpet will be removed on Monday.
We must wait for a castastrophe team adjuster to inspect
a remnant of it some time in the, hopefully, near future.
We're hoping for a swift settlement so that new carpeting can be
purchased and installed.
-Ellen GRove

thought tonight was chat night or am i wrong? no one is in chat.

Hi Jennifer,
We are in chat.....waiting for you :) If you would give me your
screen name for AIM or AOL... I can get you in right quick.
Thanks,
Robert

To All members,
We are starting a monthly newletter. If any one has anything they
would like me to put in it,or have something interesting you would
like to share, please feel free to email me at ljbromlow@... or
email ReeAnn. Please also to feel free to IM me.
We hope all members and friends of members enjoy this, as well as
learn from it. It will have alot of differnt information from what is
happening in the pancreas world to a list of new members to kids
corner amoung many other interesting articles. Please enjoy!!! Read,
print it, and pass it along.
Loretta :)

Kelly,
My Name is Loretta Bromlow I have my GI there in Oklahoma. He is
located in Oklahoma City... He is a great and wonderful Dr.. I have
had him for 2 years or more. I have much trust faith in him to take
care of me.
His name is is Dr. Robert Rankin MD. He is board certified in
internail medicine and gastroenterology. He is located at 3366 NW
Expressway Building D, Suite 400 Oklahoma city, Oklahoma 405/702-
1300. He know about how we as cp patients are. He is not only my Dr.
but I feel he is also my friend. If, you would like to make
appointment his staff would take care of you. They are great folks.
Ask for Becky, she is his nurse as well as his left hand person. I
hope this helps I am sorry this has happen to you.
Loretta from Oklahoma/Tennessee

I know I haven't posted in a long time, but I do read emails when I
can and keep up with how everyone is doing.With Beauford having been
sick for so long and out of work,I have ben working as much as I
can.And now I am out for about two months because I had to have back
surgery,lumber fusion! So I can not even sit at the computer but
just for a few minutes at a time.So much for me I will be alright ,
but Beauford is back in the hospital again. He has another cycst on
his pancreas,just had one removed in March.He wanted to know if
anyone that has had a cycst before has had another one come up so
soon.He will have surgery again next week.The doctor says he thinks
that when Beauford had the spincerotomy in July that scar tissue
formed and closed off the duct.So if anyoe could give us some info
we would appreciate it.Hope everyone is having a good day.And thanks
for all your help and support .When Beauford got sick I learned more
from you all than I did from the doctors. Thanks Rita

The following is a partial list of
meds that can affect your blood sugars.
Talk to your pharmacist with questions.
This came in on ADI from Wambo.

Thank you Kimber for thinking of us diabetics. That is a great idea and Mike
and I will keep it in mind.
Mike is doing better and actually drove to the store today by himself (without
my approval mind you as he's just barely healing but I am so happy he feels
better!) Since his surgery on Friday where they found and removed a painful
hematoma in the back of the foot, he is feeling better daily. I have been sick
as a dog with a nasty persistent cold that has taken over all oxygen supplying
orifices I swear. I think I can get back to work tomorrow and I think Mike's
doc will be pleased with his improvement at appt.
One day at a time sweet Jesus....
Love, Lori

Kelly:
I sure hope that you have copies of all medical records, especially
from the doctor/s who gave you the pancreatitis diagnosis.
I, too, was told that I was nuts by doctors; several doctors.
And they were all wrong. BuI had to go through hell to prove it.
And that included going out of state.
It wasn't until I underwent a pancreatic biopsy with fine needle
tissue aspirations that I was able to get some respect and concern.
It was bloodless endoscopic procedure that was performed
by Dr. Frank Gress who is now at Duke. He just might be the
guy for you. Here's where you can reach him:
Division of Gastroenterology Duke University Medical Center
Box 3662 , Room 0351A Durham ...
Tel: (919) 668-2286
Fax: (919) 681-8785
By all means, let him know that I referred you.
-Ellen Grove
NY

For any of you who are diabetic,
Daytimer.com has come up with a a record tracking system for your
medication, bloodsugars, a preprinted shopping guide, and an advanced
planner. It's desk or pocket size depending up which you want. The
pocket size has a spiral bound one for each month (you buy the whole
year, so you have 12 pocket sized notebooks). You can purchase it on
their website. I found out about it in my Diabetes Forecast magazine.
Just thought that since so many of us a diabetic, some of you might want
to know about this.
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.

Brenda,
Prayers to you and all in Florida. Glad you are safe.
Rhonda
Tulsa, OK

Hi and love to all - I haven't posted in a quite awhile and just
wanted to poke my head up thru the sand and say hello to all and
give you a brief update on what's been happening w/me. Some of you
may remember that I finally got my act together and flew out to Indy
to have the ERCP w/manometry done by Dr. Glen Lehman at the
Indianapolis Hospital/Medical Center. Well, not only was he the
absolute VERY BEST as everyone had previously told me and finally
enough that I was encouraged/persuaded to go, but he is also the one
that FINALLY gave me a diagnosis via the above procedure. It was
found that I have sphincter of oddi (SOD for short for those that
may be new to all of this!!) dysfunction. Consequently, he
performed sphincterotomies of both the pancreatic and common bile
ducts. Well, it's now been about 5 wks post-procedure and I'm
still just about writhing in agony EVERY DAY (I'm really not being
overly dramatic here either...pain is far worse than it was before
getting the ERCP done) and I've often wondered if it wasn't a
mistake to have it done...I think my hubby is convinced at this
point that it was. At any rate, I've had lots of support and
encouragement from Nancy N. and Laurie D. via private email and I
have to say if it wasn't for the loving, wonderful support of these
two wonderful women and friends...that I just don't know what I
would have done to date. I don't want to turn this into a me, me,
me book here but by Dr. Lehman/and my "NEW" gastro doc that the
recovery process can take a VERY long time when things are messed
around with in there..good thing to know because like I said, if not
for them, I would be convinced that it was a mistake other than the
fact that I'm not TOTALLY treated like a drug seeker any longer
because I now have a diagnosis that I can shove under their noses in
the form of the post-procedure report!!! At any rate, I've been
trying to play catch up and read/lurk here...but just can't quite
keep up...so hope I haven't missed too much, but I'm sure I have!!
I'm not on 150mcgs of the Fentanyl/Duragesic patches changing every
48 hrs and that isn't even enough really...going to have to complain
yet again. Have the 10/325 Percocets for break thru...and some days
are worse than others. Actually the patches seem to be working for
only 24 hrs and EXACTLY 24 hrs at that....so don't know what the
story is there. Have lot of stories to tell regarding my once
beloved PCP...who is now (just to give you a hint) making comments
about the pain being all in my head, etc., etc. But, I will say that
the new GI was a recommendation of Dr. Lehmans and so far (well,
only 1 appt!!) has turned out to be a real gem. We've both agreed
that if this is still continuing by the 21st of Oct., when I go back
to see him...that we are going to start writing up the disability
retirement paperwork to get it going as I work (worked?) for the
Federal Gov't. and well, you can well imagine how long that will
take just to get thru my local paper mill!! But, he does agree with
me that if I'm still in this much pain by then that I probably won't
really get much better and since I haven't worked since last May
(well, a couple of odd wks at home that my work kindly allowed for
in July) you can imagine the financial situation here. Most of you
probably well remember my screeching/whining about how I'm the major
breadwinner, the one w/the health benefits, etc., so with no money
coming in on my end...things aren't too pretty around here and I
have to get this going ASAP. Anyway, LOL!! this IS starting to
sound like a book so will close for now but like I said, just wanted
to poke my head up and say hello...will try to post more often now!!
lots of love and hugs to all
Laura

Dear Kelly,
I am sick after reading your post. I am sorry you are having such a
horriable time in your life right now. I wish I had something to say
to make it all better, but I am at a loss for words. Girl, you are
strong and hang in there. One day at a time. Good physicians are
hard to find in this world. I pray that a good one will come into
your life sometime soon. I have learned in the last several months
that a good GI specialist is critical, because the local physicians
just don't know enough about the pancreas.
Kelly, not sure where you are at spiritually, but remember that God
is our Father. Put your faith and trust in him. I will be praying
for you.
Rhonda
Tulsa, OK

Reminder Reminder from the Calendar of ThePancreatitisPlace
Hosted Chat - ReeAnn & Gary
Sunday September 26, 2004
7:00 pm - 9:00 pm
This event repeats every week.
The next reminder for this event will be sent in 23 hours, 4 minutes.
Event Location: AOL's TPP Chat room
Notes:
ReeAnn ~ Owner will host a chat in AOLs TPP Chat room. You will need AOL or free AIM (www.aim.com) to access this Chat room. Please email us for the link.
DeniseHallock@...
MsReeAnnBetts@...

You're definintely in our thoughts and prayers.
Please stay safe. Take care.
Becca

Getting ready for Hurricane Jeanne tonight...wish us luck and a little prayer
tonight...Thanks everyone. Please everyone in Florida keep safe.
Brenda

Kelly, this is Lori here Mike's wife. I have been trying to sleep and worrying
about you - you sound so hurt and overwhelemed. I am so sorry that people have
treated you this way. I am just brainstorming here - so bear with me as I do
not have the disease and can't pretend to "understand" but just want to let you
know I care.
1) You do not sound like a drug addict. You sound intelligent, thoughtful,
caring and articulate - albeit increasingly desperate from not being listened
to.
2) Not every person with chronic pancreatitis shows elevated enzymes - Mike
never does unless an acute attack and his pain is still treated. It sounds to
me like this "board" your doctor deals with is putting pressure on her. That is
a shame. Because narcotic medicines are dealt with so carefully - some doctors
majorly undertreat pain which is not the goal at all. My husband said half
jokingly if it was him he would sit there and take the medicine in front of the
doctor so the doctor could see he was not getting high or going to OD. You need
not be intimidated by the suggestions of that quack at the pain clinic - I mean
you may have to nod your head to get your meds but in the meantime you will find
someone who has a much better understanding of the symptomology and management
of chronic pancreatitis.
3) You need and deserve a support network. You have a right to healthcare. As
much as you want to protect your family, it is okay to let them in on your needs
- at least those old enough to understand. They need correct information in
order to help you and support you. That is what family is all about.
4) Have you considered consulting the University of Oklahoma? When I searched
using Google with "chronic pancreatitis" and "Oklahoma" the university came up
numerous times. Often times university facilities have more research going on
and are more aware of the needs of the chronically ill. You need intelligent
and people current in their expertise working for you.
5) You might consult either a social worker or patient advocate. Demand your
medical records so you have a copy. Take time to consult with someone who will
listen - even an attorney if necessary. There are people who care - I know this
is true because of the physicians my husband has consulted - they may not have a
perfect solution - but they will listen and try to help.
6) This is totally random - but I noticed this doctor listed as a doctor who
wrote an article for "best practices" Philip B. Miner, Jr, MD Oklahoma
Foundation for Digestive Research. You would have to look him up in your phone
book or www.411.com.
7) This is a long website link -
http://merck.micromedex.com/index.asp?page=bpm_brief&article_id=BPM01GA18 - but
it is an excellent article on chronic pancreatitis by an expert at Virginia
Mason Medical Center in Seattle, WA. Note he says: Use non-narcotic analgesics
for pain control if possible, but do not withhold narcotics in patients with
severe pain out of concern for addiction. more
Anticipate that more potent narcotics are eventually required in many
patients with chronic pancreatitis. more
Emphasize that the endpoint is control of pain to an acceptable level, not
complete absence of pain.
You are fighting for your life. You are not boring anyone. You want to
be there for your husband, for your children, for your granchildren! You
deserve better care and it is out there. Please don't give up Kelly.
Love and prayers to you my friend,
Lori Karns

Hey gang and hello to any new members,
Well, here goes the latest story of my life with pancreatitis.
I went to my usual monthly appt with my docter who has been with
me for a year now. I really thought I had invested my trust and
faith into someone who was really trying to help me deal with this
awful disease. Boy was I wrong! I sat in the examining room waiting
patiently for my turn and dealing with the pain from the most recent
flare up when my docter walks in sternfaced. She asks how I have
been doing and I stated, " The combination of pain meds I am on now
seems to be working at least to keep the pain at a manageable level
with the exception of this week since I have been dealing with
another flare up. " She then turns to me and says ," I have been
trying for a year now to help you and you just never seem satisfied.
Your chart has been flagged by the board and the pharmacy for all the
opiates you are taking for something that is all in your head. The
reason I have said that is that the ct came back normal, your blood
levels are coming back normal or below and yet you still say you are
in pain. I believe you are an addict and just don't think I should
continue giving you refills." That was more than I could take after
no sleep all night because of the pain and I broke down crying. This
person sitting in front of me who has told me all year that
eventually we will get the pain under control but since the board
won't approve an ERCP for me and eventually I will exhaust all that
the choctaw nation offers, that essentially I have approximately 10
years if that and all we can do is deal with the pain the best we can
and do all I can in what time I have left. She then tells me that
she is leaving at the end of October and she is referring me to the
pain clinic which is something I had been asking about for 2 months!
The man doing the pain clinic is a P.A. and is only taking
referrals. Then she says," DO NOT get confrontational with him!
You had better do everything and anything he says or you will be
kicked out of the system, I promise you!!" I replied with the tears
flowing,
" All I have ever done is take what you have ordered for me and how
you have it ordered." I then lost any composure I may have redeemed
and was crying uncontrolably and probably said some things I
shouldn't have but I have since then apologized with no
acknowledgement from her in any way. She refilled some of my meds
after making the referral appt for the next week.
On August 31 I had my first meeting with the pain doc who's name
is Hagelberger and within the first 5 minutes of him entering the
room he started off before even introducing himself to me,"Who ever
said you had chronic pancreatitis in the first place? Did you come
up with it to get narcotics or did an actual docter give the
diagnosis? The only conclusion I can come up with is that you are
selling your drugs because if you were taking them as prescribed then
you would be knocked out cold!"I tried to explain to him that before
this disease ruined my life it only took one benedryl to knock me out
for about 6 hours and the combination I am on now keeps the pain at a
manageable level most of the time excluding flare ups. He never
heard a word I was saying. He was to busy talking over me and
calling me a drug dealer. When my original doc said that all my labs
were coming back normal or below so I couldn't possibly have chronic
pancreatitis I asked her," Do you think my levels are within normal
ranges now is because of the 4 cholesteral meds you have me taking
routinely may be actually..I don't know...working?" She and now this
guy both are telling me there is nothing wrong with me now and it all
has been in my head! I asked her point blank exactly how much any of
them knew about pancreatitis and her reply was,"some". What kind of
answer is that? Then to top off the whole nightmare, he then stops
the percoset, refuses to refill the Darvon for a week and cuts the
morphine from 60mg 3 times a day to 30mg 2 times a day and he did all
of it in one day! And beside everyday pain which had become the norm
now the pain is worse because I don't and can't have my medication
that was making life tolerable! I don't dare go to the ER as he has
already stated that it is all in my head and that I may need to
admitted for "help"! I tried to ask him to please look back into my
chart and read it from the onset to now but he refused to listen to
anything I had to say.
I can't take much more of this. It would be so much easier and
faster to just end it all than having to deal with this crap!!!!
I am soooo sick of being sick!!!!! I don't understand why I am
being treated like I am and I know that there are people in this
world that do in fact do what they are accusing me of but I AM NOT
ONE OF THEM!!!!!! I am scared to death that the last 10 years of my
pitiful life is gonna be spent in sheer uncalled for agony!!!!!!
I feel so alone, unbelieved,discarded, useless. I don't tell my
husband or anyone else for that fact what is really going on in my
head as everybody already has enough stress and worries of their own
without my adding to them. Since I am unable to work now ( but i
have held down a full time job of some kind since I was 15) and can't
contribute to anything now I just don't want to add to my families'
worries by sticking around taking up room and precious air.
Am I crazy? Am I making this all up for attention like he said?
I don't know where to turn. Have thought about hitting the alcohol
to wipe out the pain but can't make myself like the taste long enough
to do the job!!! I am such a wimp!! I can't cry about it anymore
because I stay dehydrated! If it one damn thing it is something
else. I will now apologize for my language and behavior and will end
this story now before everyone goes to sleep or yawns themself to
death. Sorry if anyone has been upset . If anyone has any ideas
about my situation please feel free to email me at any time. May
not be able to be at chat tonight or sunday but will try. No
promises. But if I am able I will try to keep quiet and not bore
anybody.
May see you all later. Here's wishes for painfree days and
restful nights.
Kelly from Oklahoma

Jennifer, so glad to hear you have gotten your medications. I know how hard it
is to not have them and know you're runny out of them....Take care and my
thoughts are with you.
Pain free day
Your TPP Friend, Brenda

Hi Michael, I am sorry that you have to go through all of this. But i know what
you mean because without my two sons ( 5 and 7 yrs old), i couldnt make it
through the day.
I've had CP for 4 yrs in November and just had a pain pump put in..went through
alot before they figured out what medication worked for me. I still hurt when im
hungry or full. And most of the time nauseated...well you know all know what i
mean.
My prayers and thoughts are with you and your family...Take care and have pain
free days.
Your TPP friend, Brenda

Reminder Reminder from the Calendar of ThePancreatitisPlace
Hosted Chat ~ Robert & Denise
Friday September 24, 2004
7:00 pm - 9:30 pm
This event repeats every week.
The next reminder for this event will be sent in 21 hours, 3 minutes.
Event Location: AOL TPP Chatroom
Street: AOL chatroom called "TPP Chat"
Phone: 434-409-7162
Notes:

I am happy, today I got the rest of my 4 month supply of Lantus, Humalog and
Lopid, this is for 4 months, but in November I pay again for the assistance that
I am getting. So, soon I should be feeling better.
Have A Great Day,
jlm_1972
Wavy Baby
No matter what you go through,
God is there with you, even though you
can't see Him, He is there.

Lori,
As a reply of activities, this may be a little juvinile, but Amanda
like to color. Craft stores carry very advanced and time
consuming "fuzzy posters". Not sure what your decorating tastes are,
but they make these very "artsy" anymore and come in tons of
varities. Plus, they are very detailed and Amanda likes them because
she really has to focus on the artwork. It's pretty small and easy
to keep at the hospital.
Wishing you both a blessed day.
Rhonda
Tulsa, OK

Today I am feeling ok, just a bit weak to where I had to use my wheelchair to
get around, I kept tripping over everything this morning and it was hard to
walk.
I did get my insuling today and now I am sure my energy levels will go back up.
I just dont like being sick, being sick wears me out and down.
So, that is how I am today.
Have A Great Day,
jlm_1972
Wavy Baby
No matter what you go through,
God is there with you, even though you
can't see Him, He is there.

Dear Kimber
Thank you so very much for your prayers and kind words. God bless
you and your family.
In His Name
Michael

Well, my monday didn't go so well, woke up at 5:30 this morning feeling sick
when a neighbor banged on my door about my toilet running and how she can hear
it, well, I was sick all day.
Had pain in m back all day in my upper left shoulder blade and I know it is my
fybromialgia that is acting up and this is the time of yr this happens.
Well then we had a manager/tenent meeting and that went good, then we went to
Wal-Mart and had 5 cameras to turn in so we ate and shopped a bit while they
were being developed and I was still feeling sick and I was getting a migraine
so we took a cab back home.
Well, when we got home we got our toilet fixed so now it no longer runs, thank
god, I was tired of being woken up between 5:30am to 6:30am about complaints of
my toilet running.
Then we checked our snail mail, well that didn't go over too smooth, we are
still waiting on a voucher for one of my meds, so we called the private
insurance place and told them which one came in so we are now waiting on one
voucher to come in.
Well, that is how my monday went with some yelling and throwing matches included
but got resolved after hubby called and orderd dinner.
Now my day is better.

Hello everyone, my weekend so far is going good, I am helping out at a friends
wedding renewal, they been married 10 yrs and wanted to renew their vows, so I
am running the guest book and taking vegies to the reception.
The weather here is ok, we got some rain and the clouds are still lingering
around.
Hope everyone is having a good weekend.

Reminder Reminder from the Calendar of ThePancreatitisPlace
Hosted Chat - ReeAnn & Gary
Sunday September 19, 2004
7:00 pm - 9:00 pm
This event repeats every week.
The next reminder for this event will be sent in 23 hours, 4 minutes.
Event Location: AOL's TPP Chat room
Notes:
ReeAnn ~ Owner will host a chat in AOLs TPP Chat room. You will need AOL or free AIM (www.aim.com) to access this Chat room. Please email us for the link.
DeniseHallock@...
MsReeAnnBetts@...

Shelley,
it was so good to hear from you as it has been a long while since you
have last posted. I'm sorry that you have to have an NG tube in and I
hope your pancreas it getting all the rest it needs and you will soon be
able to eat again.I'm glad to hear that you have got an official
diagnosis of CP. Even though it's a horrible disease, it's better than
NOT know why you are having all these problems. I hope you continue to
post for some time to come as we have all missed 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.