Re: To Everyone..need your help`

[Guest guest]

Dear ,

I have no helpful words I'm afraid, I sorely wish I did...

You're facing a great deal, and I feel terribly helpless that I can't

offer some experience that might be of help - it's just that the things you

need feedback on are not the things that I've been through!

What I can, and will offer, however, are my prayers and wishes for you to

find good health. Your plate is definitely full, so to speak... but you do

sound strong and resolved, and that makes me think that you will come out on

the other side all right. Good luck and good fortune to you, .

You are in my prayers.

Terry in KC

[Guest guest]

Dear ,

I have no helpful words I'm afraid, I sorely wish I did...

You're facing a great deal, and I feel terribly helpless that I can't

offer some experience that might be of help - it's just that the things you

need feedback on are not the things that I've been through!

What I can, and will offer, however, are my prayers and wishes for you to

find good health. Your plate is definitely full, so to speak... but you do

sound strong and resolved, and that makes me think that you will come out on

the other side all right. Good luck and good fortune to you, .

You are in my prayers.

Terry in KC

[Guest guest]

,

don't feel bad if you don't always post. This group has a lot of people

who just read the posts and take the information from them, but don't

post themselves. That's perfectly fine. Everyone does what they feel

they need to in this group. We'll be glad to hear from you anytime you

want to post, but if you feel you must be a lurker for a while, then do

so. So don't feel bad or guilty. There's no guilt allowed on this

board.: )

Hope you feel better soon. I'll be praying for some pain free days for

you. Sorry I don't have an anwer for you about the stones. Some people

are prone to them, but I haven't run across anything in my eat that says

why one person gets them and another doesn't.

Kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

,

don't feel bad if you don't always post. This group has a lot of people

who just read the posts and take the information from them, but don't

post themselves. That's perfectly fine. Everyone does what they feel

they need to in this group. We'll be glad to hear from you anytime you

want to post, but if you feel you must be a lurker for a while, then do

so. So don't feel bad or guilty. There's no guilt allowed on this

board.: )

Hope you feel better soon. I'll be praying for some pain free days for

you. Sorry I don't have an anwer for you about the stones. Some people

are prone to them, but I haven't run across anything in my eat that says

why one person gets them and another doesn't.

Kimber

--

Kimber

hominid2@...

California State Chapter Representative

Pancreatitis Association, International

[Guest guest]

denise,

i am so sorry to hear about your bad days. you've

really had to suffer this week and i will keep you in

my prayers.

one thought, i too have had several ercp's the latest

was in feb (4 that month). i had the stent surgery.

the first time, my stent came out prematurally, i had

an accute attack and was in the hospital for a week,

then they replaced the stent with a sutured one...

then retreived it a coulple of weeks later. it did the

job of keeping the duct open.. i did have another

acute attack.. after that ercp.. my daily pain

subsided for a couple of months.. it did help finally.

i hope this helps you..

talk with you soon

michelle

--- dunayczan@... wrote:

> Hi all,

>

> First I want to say that I am sorry that I have not

> been more

> involved with this group....I haven't helped out as

> much as I would

> have liked. However, I keep all of you in my

> thoughts and prayers

> everyday. Lately I have been really sick and haven't

> felt like I had

> much to offer. Many times I would start to post an

> answer to someones

> question and then I would find that I didn't know

> what to say. I do

> read the posts almost every day find all of your

> posts very helpful.

>

> Today was another cruddy day. I can hardly eat

> anything and have such

> pain all of the time. I had an MRCP last week and

> saw my doctor today

> for the results. I have several stones blocking my

> bile duct. Whick I

> suppose is good because it explains why I am having

> so much pain. The

> bad part is that I have to go back in next week for

> another ERCP.

> This will be my fourth one this year, eighth one

> total. I don't know

> why I keep making stones ( had my gallbladder taken

> out few years

> ago). I am taking Actigall which is suppose to

> prevent more stones

> from forming, but it isn't working to well. Does

> anybody have

> problems with stones? Any bright ideas on how to

> prevent them from

> forming? I also have problems with the ducts

> stenosing or reclosing

> after they are opened. I last had my bile duct

> opened in June and my

> doctor says it looks like it has closed up again.

> Anybody have

> problems with this? I am not looking forward to

> having this ERCP next

> week. I have had pancreatitis after every other one

> I had, except the

> first one. I always end up in the hospital. This

> time he is going to

> go farther into the pancreatic duct, and possibly do

> a pancreatic

> sphincterotomy and put a stent in. He is doing this

> because of the

> signs of chronic pancreatitis. I am worried because

> I get

> pancreatitis when the duct is only flushed with dye.

> I'm sure my

> pancreas will be real happy to be irritated more.

> Anybody have any

> words of advice?

>

> I also have to do the 72 hour stool fat test. I

> can't believe that

> they want me to have 100grams of fat a day for six

> days! I can hardly

> get jello and toast down! And I have to do it

> without the pancreatic

> enzymes! It's gonna put me in the hospital! I don't

> know how I can do

> it! I know some of you needed to do it...any help

> would be greatly

> appreciated.

>

> One more thing....my MRCP did not show any chronic

> pancreatitis. It

> just showed the stones and a dilated bile duct.

> However, I have all

> the signs of CP...malabsorption, steatorrhea, pain,

> blood sugar

> irregularities, weight loss. The pancreatic enzymes

> help alot. If I

> don't have CP, why do the enzymes help? I'm sure

> that someone has had

> a normal MRCP but still had CP, right?

> My doctor also wants to check " peptide hormones " .

> ANbody ever hear of

> this? He said it had to do with endocrine tumors

> that cause the

> pancreas to malfunction.

>

> Thanks for listening and helping out. I hope I can

> be of more help to

> you all after this.

>

> Take care,

>

>

>

__________________________________________________

[Guest guest]

denise,

i am so sorry to hear about your bad days. you've

really had to suffer this week and i will keep you in

my prayers.

one thought, i too have had several ercp's the latest

was in feb (4 that month). i had the stent surgery.

the first time, my stent came out prematurally, i had

an accute attack and was in the hospital for a week,

then they replaced the stent with a sutured one...

then retreived it a coulple of weeks later. it did the

job of keeping the duct open.. i did have another

acute attack.. after that ercp.. my daily pain

subsided for a couple of months.. it did help finally.

i hope this helps you..

talk with you soon

michelle

--- dunayczan@... wrote:

> Hi all,

>

> First I want to say that I am sorry that I have not

> been more

> involved with this group....I haven't helped out as

> much as I would

> have liked. However, I keep all of you in my

> thoughts and prayers

> everyday. Lately I have been really sick and haven't

> felt like I had

> much to offer. Many times I would start to post an

> answer to someones

> question and then I would find that I didn't know

> what to say. I do

> read the posts almost every day find all of your

> posts very helpful.

>

> Today was another cruddy day. I can hardly eat

> anything and have such

> pain all of the time. I had an MRCP last week and

> saw my doctor today

> for the results. I have several stones blocking my

> bile duct. Whick I

> suppose is good because it explains why I am having

> so much pain. The

> bad part is that I have to go back in next week for

> another ERCP.

> This will be my fourth one this year, eighth one

> total. I don't know

> why I keep making stones ( had my gallbladder taken

> out few years

> ago). I am taking Actigall which is suppose to

> prevent more stones

> from forming, but it isn't working to well. Does

> anybody have

> problems with stones? Any bright ideas on how to

> prevent them from

> forming? I also have problems with the ducts

> stenosing or reclosing

> after they are opened. I last had my bile duct

> opened in June and my

> doctor says it looks like it has closed up again.

> Anybody have

> problems with this? I am not looking forward to

> having this ERCP next

> week. I have had pancreatitis after every other one

> I had, except the

> first one. I always end up in the hospital. This

> time he is going to

> go farther into the pancreatic duct, and possibly do

> a pancreatic

> sphincterotomy and put a stent in. He is doing this

> because of the

> signs of chronic pancreatitis. I am worried because

> I get

> pancreatitis when the duct is only flushed with dye.

> I'm sure my

> pancreas will be real happy to be irritated more.

> Anybody have any

> words of advice?

>

> I also have to do the 72 hour stool fat test. I

> can't believe that

> they want me to have 100grams of fat a day for six

> days! I can hardly

> get jello and toast down! And I have to do it

> without the pancreatic

> enzymes! It's gonna put me in the hospital! I don't

> know how I can do

> it! I know some of you needed to do it...any help

> would be greatly

> appreciated.

>

> One more thing....my MRCP did not show any chronic

> pancreatitis. It

> just showed the stones and a dilated bile duct.

> However, I have all

> the signs of CP...malabsorption, steatorrhea, pain,

> blood sugar

> irregularities, weight loss. The pancreatic enzymes

> help alot. If I

> don't have CP, why do the enzymes help? I'm sure

> that someone has had

> a normal MRCP but still had CP, right?

> My doctor also wants to check " peptide hormones " .

> ANbody ever hear of

> this? He said it had to do with endocrine tumors

> that cause the

> pancreas to malfunction.

>

> Thanks for listening and helping out. I hope I can

> be of more help to

> you all after this.

>

> Take care,

>

>

>

__________________________________________________

[Guest guest]

denise,

i am so sorry to hear about your bad days. you've

really had to suffer this week and i will keep you in

my prayers.

one thought, i too have had several ercp's the latest

was in feb (4 that month). i had the stent surgery.

the first time, my stent came out prematurally, i had

an accute attack and was in the hospital for a week,

then they replaced the stent with a sutured one...

then retreived it a coulple of weeks later. it did the

job of keeping the duct open.. i did have another

acute attack.. after that ercp.. my daily pain

subsided for a couple of months.. it did help finally.

i hope this helps you..

talk with you soon

michelle

--- dunayczan@... wrote:

> Hi all,

>

> First I want to say that I am sorry that I have not

> been more

> involved with this group....I haven't helped out as

> much as I would

> have liked. However, I keep all of you in my

> thoughts and prayers

> everyday. Lately I have been really sick and haven't

> felt like I had

> much to offer. Many times I would start to post an

> answer to someones

> question and then I would find that I didn't know

> what to say. I do

> read the posts almost every day find all of your

> posts very helpful.

>

> Today was another cruddy day. I can hardly eat

> anything and have such

> pain all of the time. I had an MRCP last week and

> saw my doctor today

> for the results. I have several stones blocking my

> bile duct. Whick I

> suppose is good because it explains why I am having

> so much pain. The

> bad part is that I have to go back in next week for

> another ERCP.

> This will be my fourth one this year, eighth one

> total. I don't know

> why I keep making stones ( had my gallbladder taken

> out few years

> ago). I am taking Actigall which is suppose to

> prevent more stones

> from forming, but it isn't working to well. Does

> anybody have

> problems with stones? Any bright ideas on how to

> prevent them from

> forming? I also have problems with the ducts

> stenosing or reclosing

> after they are opened. I last had my bile duct

> opened in June and my

> doctor says it looks like it has closed up again.

> Anybody have

> problems with this? I am not looking forward to

> having this ERCP next

> week. I have had pancreatitis after every other one

> I had, except the

> first one. I always end up in the hospital. This

> time he is going to

> go farther into the pancreatic duct, and possibly do

> a pancreatic

> sphincterotomy and put a stent in. He is doing this

> because of the

> signs of chronic pancreatitis. I am worried because

> I get

> pancreatitis when the duct is only flushed with dye.

> I'm sure my

> pancreas will be real happy to be irritated more.

> Anybody have any

> words of advice?

>

> I also have to do the 72 hour stool fat test. I

> can't believe that

> they want me to have 100grams of fat a day for six

> days! I can hardly

> get jello and toast down! And I have to do it

> without the pancreatic

> enzymes! It's gonna put me in the hospital! I don't

> know how I can do

> it! I know some of you needed to do it...any help

> would be greatly

> appreciated.

>

> One more thing....my MRCP did not show any chronic

> pancreatitis. It

> just showed the stones and a dilated bile duct.

> However, I have all

> the signs of CP...malabsorption, steatorrhea, pain,

> blood sugar

> irregularities, weight loss. The pancreatic enzymes

> help alot. If I

> don't have CP, why do the enzymes help? I'm sure

> that someone has had

> a normal MRCP but still had CP, right?

> My doctor also wants to check " peptide hormones " .

> ANbody ever hear of

> this? He said it had to do with endocrine tumors

> that cause the

> pancreas to malfunction.

>

> Thanks for listening and helping out. I hope I can

> be of more help to

> you all after this.

>

> Take care,

>

>

>

__________________________________________________

[Guest guest]

,

Dear friend,

You are a good person and do not feel bad about not posting or keeping in

touch. I know that you have had a rough time lately and it certianly does

not make life easy when you are trying to be a mother to little ones as

well.

I wish , like Terry said, that there is something that I could do to help

you. You are a smart girl and just keep that brain working so that you can

ask those docs all the questions that you need to ask ! I thought that the

posting from was interesting about having the stent sutured in

place for a while. I had not heard of that before but it does sound like it

is an option. Don't know if others had heard of that before or not but it is

worth mentioning to your ERCP physician as an option.

I had contacted Karyn and Tull about getting a copy of last years tape from

the Symposium. There was a Dr. that spoke last year , who is a

surgeon. He went into a section about why people make stones even after the

gallbladder is out. Well, I found his presentation to be wonderful about

pancreatitis. If I can recall correctly, I think he offered 2 rationals

reasons as to why that happens and it is past me to recall right now. But

if you would like, I can voice record that section of the tape for you on a

cassette and send it to you. I think you that you may find it very

benficial. I did contact Tull via email and asked him to see what he could

do about taping this years presentations as well as I think it was

definietly worth the $20.00. But a couple of the presenters last year

walked around alot and you could not hear them at all. But Dr. 's

voice carried very well. So for those of you that go this year, please be

sure you handcuff them to the microphone !!!!

I wish I knew what to tell you about that fat test. If you can't do it, you

can't do it. Do not damage your body anymore by causing it pain. Just try it

and if it is too painful.. stop ! Don't feel like it is your fault either.

Your body can only take so much at any given time. And right now, you just

may need to save your pain tolerance for the ERCP. That is more important.

Don't know much about the peptide hormones , wish I did. I bet there are

others here who may have an idea. Mark is always soooo good on the research

wagon !

When I went back to work the other day ( for my big 2 hour shilft !!!) I ran

into one of the physicians that works for my company. He had been calling

me every couple of weeks at home to check on me ( one of the good eggs as I

call them ). Anyway, he told me that people can have pancreatitis with just

a slight elevation in their white counts and amylase/lipase levels. Said

back pain is definitely a sign. He had been in practice over 25 years and

said that he is a firm believer that the pancreas sometimes doesn't take

much to act up.( especially once it gets exposed to something, like

gallbladder or SOD etc ). So I am guessing that maybe the MRCP may not

show pancreatitis, but that does not mean you don't have it now and then.

Maybe that is a good sign that it is not chronic ?? Do you think that the

enzymes help just because they trick the pancreas into thinking that they

have already been excreted ? I know that a bunch of people on this list

take the big gun enzymes and I am sure there is a good medical reason as to

why they may help you whether your physician thinks you have pancreatitis or

not. ( Someone will probably know.)

Let me know if you are interested in me sending you the tape. ( Of course I

don't want and Tull mad at me for passing the tape around ! ). If so

send me your address to my private email. Or if you prefer I will listen to

that part again and then let you know what he said. Let me kow if there is

anything I can do to help you. I know that by Kaye's postings, she has been

thru this as well. Be strong, she made it and you can too. I will keep you

in my prayers.

Lily

To Everyone..need your help`

> Hi all,

>

> First I want to say that I am sorry that I have not been more

> involved with this group....I haven't helped out as much as I would

> have liked. However, I keep all of you in my thoughts and prayers

> everyday. Lately I have been really sick and haven't felt like I had

> much to offer. Many times I would start to post an answer to someones

> question and then I would find that I didn't know what to say. I do

> read the posts almost every day find all of your posts very helpful.

>

> Today was another cruddy day. I can hardly eat anything and have such

> pain all of the time. I had an MRCP last week and saw my doctor today

> for the results. I have several stones blocking my bile duct. Whick I

> suppose is good because it explains why I am having so much pain. The

> bad part is that I have to go back in next week for another ERCP.

> This will be my fourth one this year, eighth one total. I don't know

> why I keep making stones ( had my gallbladder taken out few years

> ago). I am taking Actigall which is suppose to prevent more stones

> from forming, but it isn't working to well. Does anybody have

> problems with stones? Any bright ideas on how to prevent them from

> forming? I also have problems with the ducts stenosing or reclosing

> after they are opened. I last had my bile duct opened in June and my

> doctor says it looks like it has closed up again. Anybody have

> problems with this? I am not looking forward to having this ERCP next

> week. I have had pancreatitis after every other one I had, except the

> first one. I always end up in the hospital. This time he is going to

> go farther into the pancreatic duct, and possibly do a pancreatic

> sphincterotomy and put a stent in. He is doing this because of the

> signs of chronic pancreatitis. I am worried because I get

> pancreatitis when the duct is only flushed with dye. I'm sure my

> pancreas will be real happy to be irritated more. Anybody have any

> words of advice?

>

> I also have to do the 72 hour stool fat test. I can't believe that

> they want me to have 100grams of fat a day for six days! I can hardly

> get jello and toast down! And I have to do it without the pancreatic

> enzymes! It's gonna put me in the hospital! I don't know how I can do

> it! I know some of you needed to do it...any help would be greatly

> appreciated.

>

> One more thing....my MRCP did not show any chronic pancreatitis. It

> just showed the stones and a dilated bile duct. However, I have all

> the signs of CP...malabsorption, steatorrhea, pain, blood sugar

> irregularities, weight loss. The pancreatic enzymes help alot. If I

> don't have CP, why do the enzymes help? I'm sure that someone has had

> a normal MRCP but still had CP, right?

> My doctor also wants to check " peptide hormones " . ANbody ever hear of

> this? He said it had to do with endocrine tumors that cause the

> pancreas to malfunction.

>

> Thanks for listening and helping out. I hope I can be of more help to

> you all after this.

>

> Take care,

>

>

>

>

> PANCREATITIS Association, Intl.

> Online e-mail group

>

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