Re: Carole to

[Guest guest]

Hi ,

Glad to see you are back home. I hope your pain gets less each day and no

more bleeding. Take care of yourself. I think you've started a new trend

with your laptop at the hospital. I hope Henry and Shirley have a laptop

whenever they go into the hospital. At least, when they feel well enough, we

will all be able to keep in touch with them.

Hugs & Prayers

Carole

[Guest guest]

In a message dated 11/18/00 7:53:50 PM Eastern Standard Time,

loggiekw@... writes:

> Well - I " m home from the hospital. I must say this was by far the easiest

> ERCP of the three I've had.

Hi ,

Glad to hear your ERCP is over and it went well for you. Also happy to hear

they called an IV nurse to do your IV. That's what they had to do with me

after the others ruined most of my veins. They told me if I ever needed

another IV I had the right to request someone who does IV's all the time.

Wish I had known that before my veins in my left arm were ruined.

, I have Chronic Gastritis and the doctor doesn't have any idea why

since I don't have an ulcer. The doctor has looked twice and each time he

says my stomach is very inflamed. He doesn't seem very concerned (what's

new) but I am since it causes me problems too...there's got to be a reason!!

Sometimes I wonder if it isn't a complication of Pancreatitis or visa-versa.

Everything I read about you is so very familiar....really strange. I will be

interested in knowing if the meds he put you on helps. Right now I'm only on

Pepcid 40mg twice a day and sometimes Mylanta if I need it. I also take

Librax when needed. I have no idea what my Triglycerides are.

Again, I'm glad your procedure is over and everything went well. I'll keep

you in my prayers.

Hugs & Prayers

Carole

[Guest guest]

In a message dated 11/18/00 10:05:42 PM Eastern Standard Time,

CJWatts88@... writes:

<<

In a message dated 11/18/00 7:53:50 PM Eastern Standard Time,

loggiekw@... writes:

> Well - I " m home from the hospital. I must say this was by far the easiest

> ERCP of the three I've had.

Hi ,

Glad to hear your ERCP is over and it went well for you. Also happy to hear

they called an IV nurse to do your IV. That's what they had to do with me

after the others ruined most of my veins. They told me if I ever needed

another IV I had the right to request someone who does IV's all the time.

Wish I had known that before my veins in my left arm were ruined.

, I have Chronic Gastritis and the doctor doesn't have any idea why

since I don't have an ulcer. The doctor has looked twice and each time he

says my stomach is very inflamed. He doesn't seem very concerned (what's

new) but I am since it causes me problems too...there's got to be a reason!!

Sometimes I wonder if it isn't a complication of Pancreatitis or visa-versa.

Everything I read about you is so very familiar....really strange. I will

be

interested in knowing if the meds he put you on helps. Right now I'm only

on

Pepcid 40mg twice a day and sometimes Mylanta if I need it. I also take

Librax when needed. I have no idea what my Triglycerides are.

Again, I'm glad your procedure is over and everything went well. I'll keep

you in my prayers.

Hugs & Prayers

Carole

>>

Dear and Carole, I hope both of you find out what is causing all your

problems and get help for it soon. You have enough with the pancreas

problems and now I am reading that you both have inflamed stomachs among

other things. Please know that I wish and pray that you would both be well

soon. Love, Shirley

[Guest guest]

In a message dated 11/19/00 10:38:45 PM Central Standard Time,

shirlf3542@... writes:

<< Dear and Carole, I hope both of you find out what is causing all

your

problems and get help for it soon. You have enough with the pancreas

problems and now I am reading that you both have inflamed stomachs among

other things. Please know that I wish and pray that you would both be well

soon. Love, Shirley

>>

Thanks Shirley - I am praying for this to be your last Thanksgiving that you

cannot enjoy the food.

As for the stomach wall inflammation - maybe it does have something to do

with the pancreatitis or maybe the pancreatitis has something to do with the

inflammation. Luckily, my new GI really does seem concerned about it. I

think he will be more aggressive about my probs than the other doc. I saw my

family doc today. Still just haven't had the energy to switch. Suprisingly,

he seemed concerned about the latest developments. He also told me to watch

my blood sugar closely because they have found that sometimes for about 5

years before you're actually diagnosed with diabetes, your triglycerides can

go up because your body is not processing insulin properly but it's not quite

bad enough for them to catch the diabetes unless you are monitoring it very

closely. He also explained the deal with the bile in the stomach vs the

intestines and said it is a condition called gastic bile reflux (i think).

He said that unfortunately, there is really not a lot they can do. (story of

my life!). He said the meds (carafate and reglan) will help. Carafate will

coat the stomach and reglan will move things through faster so the bile may

not have as much of a chance to do damage. He said he really didn't know

much about the tri's but a low fat diet was always good. He said weight

watcher's or similar - not sugar busters, etc. He agreed with me that my

lupus may be more at the root of my problems than the rheumie believes.

I'm not really sure for his change in attitude. He had my letter and form

for disability on the front of my chart. He probably received it Friday or

today. He said he had already written a letter and had the info readly to

go. I guess i'll get it in a few days. Maybe that made him realize just how

rough this has been on me. He knows how much I love my job.

Oh, well, I am back to thinking I will stay with him for a while.

[Guest guest]

In a message dated 11/20/00 11:52:16 PM Eastern Standard Time,

loggiekw@... writes:

<<

Oh, well, I am back to thinking I will stay with him for a while.

>>

Dear , I think you made a good decision with staying with him a while

longer. He sounded as though he took an interest in you this time. Also he

seems to agree with you on disability. I am impressed that he talked with

you and didn't blow you off. Good for you. Shirley

[Guest guest]

Hi ,

I believe the inflammation in the esophagus, stomach and intestines has to be

related somehow. I know I didn't have all this chronic inflammation until I

had Acute Pancreatitis. I also know that if the Pseudocyst hadn't shown up

on the Ultrasound, my doctor would still be relating all my digestive

problems and pain to IBS and Chronic Gastritis. I had been having pain in my

left upper side for quite some time before they did the ultrasound and the

pain was always similar to Pancreatitis. I had told my GI that a number of

times but he said it wasn't my Pancreas because my levels were not elevated.

Whenever he found out I had another Pseudocyst, he changed his mind.

, have you had to be on a lot of antibiotics for different reasons -

such as Bronchitis, Strep, Upper Respiratory and urinary infections, etc.? I

have and I don't think it has helped my inflammation and probably has made it

worse. I think I have had too much antibiotics and it's destroyed too much

bacteria that I need. I started eating Yogurt to help put it back and hope I

don't have to take antibiotics again for a long time.

The only time I get nauseated is when I'm having an attack of Pancreatitis.

Feeling nauseated is miserable and I'm sure you must be frustrated. How long

have you had the nausea? Does it happen more after you eat? Since our

problems seem so similar, maybe one of us can find an answer and we can help

each other. Does the Prilosec keep you from having the burning in your

Esophagus? I take Pepcid because it has fewer side effects. I have taken

Prevacid and Prilosec before but since Pepcid helps, I didn't see any reason

to change (although the doctor thought I should). Take care and let me know

how you are doing.

Hugs & Prayers

Carole

[Guest guest]

Hi ,

I don't believe any of us really "understand" this disease...that's part of the problem but we definitely understand your pain both mentally and physically. It's very frustrating but I have learned a lot from all the members on this board and you will, too. Right now, I am truly blessed because I don't have the pain and I can eat certain foods without having trouble. Best of all, I don't have to take pain medication unless I'm having an attack of Pancreatitis which usually will last two weeks with continuous severe pain. From what I've read here, different procedures seem to make the condition worse. I have had very few procedures and my GI doctor won't do an ERCP because he said it could cause more trouble since I have a Pseudocyst on the tail of my Pancreas. One member wrote about the Pancreas being so sensitive and I believe that to be very true so I hope I don't have to have proce!

dures done unless it is absolutely necessary. I've also learned that you never know what might happen next so we all just take one day at a time. What kind of pain medication are you on right now? Do you have pain every day or does it come and go? Have you had your gallbladder removed? I've never drank, only socially, but my Dad was an alcoholic and I can't imagine why he didn't have Pancreatitis. After having Acute Pancreatitis fourteen years ago, I decided that pain wasn't worth even taking a drink socially. I believe once you have Pancreatitis even one drink can cause the Pancreas to act up and it's just not worth it. I had to be on bland food for so many years, I really have gotten adjusted and prefer my food as fat-free as possible. From experience, I've learned what foods will give me trouble.... Well, I think I've written a book! Sorry, when I start talking, I don't know when to stop....ask my husband, he'll tell you. I'll keep you in my prayers and let me know how you're doing. Hope you have a pain-free day! I, too, will be praying daily for Shirley....we all will.

Hugs & Prayers

Carole

[Guest guest]

Hi ,

You wouldn't happen to know Betty and Rick Terrill? They use to live in Birmingham. Just thought I'd ask...you never know. They were friends of mine many years ago when my husband was in the Air Force. We lived in Biloxi, MS for four years (back in the 60's) and so did they. They had two daughters. In fact, one daughter was named . Anyway, I think of them a lot and regret that we didn't keep in touch. Hope you have had a pain-free day!

Hugs & Prayers

Carole

[Guest guest]

In a message dated 12/1/00 8:33:57 PM Central Standard Time,

CJWatts88@... writes:

<< Hi ,

I believe the inflammation in the esophagus, stomach and intestines has to

be

related somehow. I know I didn't have all this chronic inflammation until I

had Acute Pancreatitis. I also know that if the Pseudocyst hadn't shown up

on the Ultrasound, my doctor would still be relating all my digestive

problems and pain to IBS and Chronic Gastritis. I had been having pain in

my

left upper side for quite some time before they did the ultrasound and the

pain was always similar to Pancreatitis. I had told my GI that a number of

times but he said it wasn't my Pancreas because my levels were not elevated.

Whenever he found out I had another Pseudocyst, he changed his mind.

, have you had to be on a lot of antibiotics for different reasons -

such as Bronchitis, Strep, Upper Respiratory and urinary infections, etc.?

I

have and I don't think it has helped my inflammation and probably has made

it

worse. I think I have had too much antibiotics and it's destroyed too much

bacteria that I need. I started eating Yogurt to help put it back and hope

I

don't have to take antibiotics again for a long time.

The only time I get nauseated is when I'm having an attack of Pancreatitis.

Feeling nauseated is miserable and I'm sure you must be frustrated. How

long

have you had the nausea? Does it happen more after you eat? Since our

problems seem so similar, maybe one of us can find an answer and we can help

each other. Does the Prilosec keep you from having the burning in your

Esophagus? I take Pepcid because it has fewer side effects. I have taken

Prevacid and Prilosec before but since Pepcid helps, I didn't see any reason

to change (although the doctor thought I should). Take care and let me know

how you are doing.

Hugs & Prayers

Carole

>>

Carole,

Yes, I have been on a lot of antibiotics this year. I think I've been on

Cipro five or six times. Twice for traveler's diarhea, and 3 times for UTI.

I've also beeen on other antibiotics 5 or 6 times for bronchitis. I have

never had so many infections before this year.

My husband and I went to St. Louis for the weekend. He is originally from

there and friends were having a Christmas party. We have not been there in

over 7 years so I hated to say no. I knew he wouldn't want to go without me.

I survived the trip, but I know i will be tired tomorrow.

Right now I am so mad I could scream. I just got my records from my

rheumatologist - the one who insists none of my current health problems have

anything to do with lupus and that my lupus is not very active right now. I

had gotten lab results from his office back in September. I know most people

on the board aren't that familiar with lupus so some of what I'm about to say

may not make a lot of sense. ANA is one of the tests used to diagnose and

monitor lupus activity. My ANA has always been a low positive (>1:80 with a

speckled pattern). It has remained the same every time it has been tested -

never higher or lower. When I got the lab work from the rheumie back in Sep,

it showed the ANA as positive at >1:80. I didn't question it because that's

what it has always been. What they sent me was a spreadsheet which had all

my labs listed from every visit. Today I got my whole chart and actual lab

results. The ANA done on 9/5/00 clearly states that the ANA titer was

" SPECKLED 1:320 TITER " . This is 2 complete levels higher positive than ever

before! However, someone put the wrong info on my spreadsheet so I guess

that's what the doc looked it and used to base his statement that " my lupus

is not very active right now so it can't be related to my recent health

problems " . I had already made up my mind that I was not going to waste my

time going back to this doctor. He is 100 miles away and it is a real hassle

to get to his office. However, I'm really not sure what to do about my

latest discovery. Someone had even circled the line on the lab results that

said " ANA TITER............SPECKLED 1:320 TITER " . I don't know if maybe they

noticed this when copying my chart or if it was circled previously. My first

instinct is to call this doctor and tell him he is either a dumb ass or a

liar! This would certainly make me feel better! Luckily, it is Sunday

evening and I can't do anything right now.

I'm having a major problem with swelling right now. The doctor has increased

myh lasix but it is not helping. It is kind of funny to be able to see a

thumb print in your leg for about 30- 60 seconds after you push on the skin.

I'm not going to the bathroom very often at all which is very unusual for me.

I normally have a pea sized bladder and my daughter makes fun of me cause I

have to go so often. My new family doc is pretty concerned about this (what

a novel idea - a doc that is actually concerned!). He is going to repeat the

ultrasound I had done in Sep to see if the 60% stenosis of the right renal

artery has increased.

My stomach pain has not been too bad lately. I've taken just one darvocet a

few times and that is enough to settle it down. I seem to be having more

nausea though. It really doesn't seem to matter what I eat or don't eat -

unless I overeat. The nausea is not severe. Taking phenergan and lying down

seems to take care of it - it is more annoying than anything else.

Hope everyone is having a pain free day. Maybe eventually I'll get to the

bottom of all my strange medical problems (which by the way all totally

unrelated to each other and none are related to lupus!) :-) yeah

right!!!!!!

[Guest guest]

Welcome ,

Glad to have you but very sorry to hear you have this awful disease. All your symptoms are very typical of Pancreatitis. You have found a support group who have members here who, even with their pain, try to help other members. To me they are the most supportive, loving, caring group of people you will ever find anywhere. You will learn more from them than you ever could from a doctor...I know I have. Just keep posting and you will receive many replies from people who will become your friends and are always there when you need them. Again, I'm sorry you have Chronic Pancreatitis and hope you can get your pain under control. I'll keep you in my prayers.

Hugs & Prayers

Carole

[Guest guest]

> Welcome ,

> Glad to have you but very sorry to hear you have this awful disease.

All

> your symptoms are very typical of Pancreatitis. You have found a

support

> group who have members here who, even with their pain, try to help

other

> members. To me they are the most supportive, loving, caring group

of people

> you will ever find anywhere. You will learn more from them than you

ever

> could from a doctor...I know I have. Just keep posting and you will

receive

> many replies from people who will become your friends and are always

there

> when you need them. Again, I'm sorry you have Chronic Pancreatitis

and hope

> you can get your pain under control. I'll keep you in my prayers.

>

> Hugs & Prayers

> Carole

hi carol,

thanks for the welcome, and especially the prayers. it's good to know

that there are people who understand and are there to talk to. i

don't know how bad my pancreatitis is at this point but guesss i will

be finding out soon enough. i go back to the dr. on thursday and will

ask him to refer me to a gi specialist then. in the meantime i am

just trying to get my head around this thing and believe that it is

really true.

have you had this desease for very long?? how has it been going for

you? do you have times when you feel good? what are your attacts

like and how often do you get them?? i don't mean to be intrusive,

please forgive me if it sounds that way. it's just that i would

really like to know what it is like for someone else. i think it

might help me to understand this whole thing better.

once again, thank you for making me feel welcome.

you will be in my prayers, also.

mary