Re: Looking for some info and good news....

[Guest guest]

In a message dated 11/4/2003 2:59:04 PM Eastern Standard Time,

bbolin@... writes:

I am sure your diagnosis is complicated by the fact that your pain

is mostly left-sided.

Hi and Bert, I must be an odd one too since my pancreas pain was always

on the left side. I read post all of the time that state that the pain is on

the right side but not for me. My pain was always on the left side.

For those who read Bert message about his pancreatectomy and islet cell

transplant that cured him of chronic pancreatitis I want you to know that I had

the

same surgery and I am cured as well. Shirley

[Guest guest]

,

I am very sorry that you are experiencing pain and illness. I know

well your sense of despair and doubt about the quality of your

future. However I hope we can encourage your to not slip into the

darkness but rather educate yourself and persue medical care. Though

there is much not known about GI tract problems and especially

problems of the pancreas, we are living in a time where a few

brilliant doctors are making a big difference. There is hope.

I am sure your diagnosis is complicated by the fact that your pain

is mostly left-sided. That is not " classic " or text book, but

everyone is different for all anyone knows enough cases have not

been studied to truly say what is more common.

What is important is that you do your best to document any flare ups

or attacks you have. With pancreatitic problems the patient needs to

be their own advocate. Note anything you have eaten prior to an

attack, when the pain hits, how bad it is, how long it lasts,

anything that makes it better or worse, and so on. Continue to

pursue the issue with your doctor and make sure to see a specialist.

If at all possible see a Gastroenterologist who specializes in the

pancreas. Even if this requires going to the nearest large city, do

it. Only a pancreas specialist will have any clue at all.

I hope your problems will be detected and resolved soon. Use the PAI

as a sounding board and to ask questions. You are not alone and we

will help to support you.

blessings,

Bert

[Guest guest]

Thank you so much for your post, Bert, and to everyone else. I am

trying my best to keep up hope. It's very hard especially when I

don't even have a definite diagnosis. I am seeing a Gastro doctor in

a major city at a very good hospital and he is THE pancreas expert in

his group so I know i am getting good care. Even he is becoming

fristrated though and is beginning to talk about sending me to

Florida to some sort of national specialist. This is quite far since

I am in Pennsylvania, but we haven't gotten to the point of making

plans yet. I have more tests the next few weeks and another

appointment with my doctor in early December so I hope this will lead

somewhere helpful. I was doing well for a couple of months compared

to usual, and then flared up over the past week. It is very

depressing. I am unable to work and it takes a toll on everyone who

worries about me. But I am trying to hang in there. This board is

the most helpful thing I have found thus far. As I said, I know no

one with these problems so no one can truly understand or give me

information (aside from the depressing statistics I read online). So

thank you and I will continue to post messages. I am so thankful to

have people to chat with about this. Thanks again and I'm very happy

for you that you seem to be in good health.

Sincerely,

> ,

>

> I am very sorry that you are experiencing pain and illness. I know

> well your sense of despair and doubt about the quality of your

> future. However I hope we can encourage your to not slip into the

> darkness but rather educate yourself and persue medical care.

Though

> there is much not known about GI tract problems and especially

> problems of the pancreas, we are living in a time where a few

> brilliant doctors are making a big difference. There is hope.

>

> I am sure your diagnosis is complicated by the fact that your pain

> is mostly left-sided. That is not " classic " or text book, but

> everyone is different for all anyone knows enough cases have not

> been studied to truly say what is more common.

>

> What is important is that you do your best to document any flare

ups

> or attacks you have. With pancreatitic problems the patient needs

to

> be their own advocate. Note anything you have eaten prior to an

> attack, when the pain hits, how bad it is, how long it lasts,

> anything that makes it better or worse, and so on. Continue to

> pursue the issue with your doctor and make sure to see a

specialist.

> If at all possible see a Gastroenterologist who specializes in the

> pancreas. Even if this requires going to the nearest large city, do

> it. Only a pancreas specialist will have any clue at all.

>

> I hope your problems will be detected and resolved soon. Use the

PAI

> as a sounding board and to ask questions. You are not alone and we

> will help to support you.

>

> blessings,

> Bert

[Guest guest]

Hello ?

I wanted to welcome you to the group, but sorry that you have CP (or may

have it). A good resource to read about CP is the Hopkin's GI

website if you haven't already found it:

http://www.hopkins-gi.org/pages/latin/templates/index.cfm?pg=disease1 & organ=4 & di\

sease=24 & lang_id=1

Do a search on Chronic Pancreatitis.

Also, there is a possible cure for people who are non-diabetics. It's

where they remove the pancreas and take out the insulin making cells

(Islets of Langherhon) from the pancreas and put then in the portal vein

of the liver so that the person will not be a diabetic. There are

several people on the group who have had this surgery if you wish to

talk to them. Shirley is one and Bert is another. I'm sure others will

let you know who they are.

Depression is unfortunately, a complication of any chronic illness.

Everyone's CP differs in how quickly it progresses. For some it

progresses rapidly, and others slowly over a long period of time. Some

start off right away with every day pain and others, like me, have to

have repeated cases of acute pancreatitis before it becomes a daily problem.

There is a lot of new research going on out there is possible cures for

pancreatitis and one of the things that we must all do is to not give up

hope of finding a cure. There is a lot of good research being done on

stem cell research and possibly cloning organs. You might want to do

some reseach on these subjects too.

Any time you have questions, feel free to ask them an someone will respond.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.