Re: Everyone to Marisa

[Guest guest]

I am really worried about a few things and I was hoping that

some of you might have advice/answers.

I haven't been feeling that well this past week and last night the

pain hit really bad. Normally my vicodin and heating pad is

enough to take the pain to a level that I can handle, but last night

I was so miserable. Anyway, for the last 3 months I have been

having more pain. Before I would have minimal daily pain and a

good attack about every two weeks or so. But that is starting to

change. I notice that I am feeling sick more often.

Marisa

San Diego, CA

Dear Marisa,

All I can tell you about is how this disease has progressed with

me. I was diagnosed in April of 2001 when I had an acute attack

and several large pseudocysts were found. It was evident that I

had probably had the condition for at least a year or more prior to

this time.

Initially I was on minimal pain medication (Percocet 5), which I

was having to take only one or twice during a month to six

weeks. In November of '01 I started taking the additional

antioxidant therapy vitamins, minerals and amino acids, since I

had heard of their sucess in lessening the pain from pancreatic

attacks and often eliminating potential attacks entirely. This

therapy has proven successful for me much of the time. I also

diligently take enzyme supplements with all my meals and

snacks, and eat only low fat, all in an effort to reduce my

incidences of pain.

As the months progressed and over a year passed with minimal

pain medication usage, I have noticed a gradual increase in the

episodes of pain. My pseudocysts are resolving, they are now

half the size they were a year and a half ago, so I have learned

that although they are smaller, the pain remains or has

increased. I spoke with my GI about this and he did tell me that

this was the natural progression of the disease. When I have

pain, it lasts longer than the day or two it used to, and my bad

episodes are spaced closer together. I am not on a long acting

pain medication, only Percocet 10, and usually go through about

30 per month. Earlier it was 30 per three months. I have not had

to go to the ER in 17 months.

My GI did say that if I was as careful as I have been, CP would

not be the cause of my death. In another breath, though, he did

say that if I continued to drink with CP it would kill me. Alcohol

forms a sludge in the pancreatic ducts that increases and

causes further obstuction and damage with each ingestion, and

is known to be the antagonist which causes the highest

percentage of fatalities among pancreatitis patients. That was

enough of a reason for me to not want to ever drink again. I still

go to parties and get together with friends, and drink ginger

ale.....no one knows the difference. You can still go out with your

girlfriends and enjoy their company. I found that the friendship

and ability to socialize is more stimulating and enduring than the

cocktail could ever be.

I have found several internet friends who have had CP well over

25 years and are still going strong, and all of them have learned

how to manage their condition magnificently. There have been

some members who have had successful pregnancies while

managing their CP, hopefully one of these younger women will

post and tell you how it was handled and how they did.

I realize that some of my answers may not be what you wanted to

hear, but I am only trying to be truthful with you about what I know

so far. I consider myself a very optimistic person, yet I have

found some of my idealism and optimism has been tempered

with reality in dealing with this disease. This is the way the

picture is painted for me. I was worried about the need for

narcotics all the time, and found the antioxidants to be very

helpful, though certainly not any type of cure-all. As my need for

pain medication has increased with time, I have to use it more

often and it is a higher dosage. I don't want to, but on certain

days, without the aid of the Percocet, I would not be able to

function at all. Everyone is different, though, and your

experiences may not be the same.

You do need to establish a good relationship with your

gastroenterologist where he is listening to you and actively

looking at management that can help you with your pain issues.

There may come a time you will need to look for a good pain

management specialist that can take over the maintenance of

pain issues, as many doctors are reluctant to prescribe the

narcotics that you may require. All of these are things you need

to discuss with your doctor. You have a long life ahead of you, so

it is in your best interests to have a doctor that you can trust and

feel comfortable with discussing your problems, and one that

will answer any of your questions with truth and sincerity.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

Pancreatitis Association, Intl.