Re: Cecilia

[Guest guest]

In a message dated 7/5/2003 6:23:54 PM Eastern Daylight Time,

soce@... writes:

>

> This is sad, but I have been drinking, partly to see if I would get an

> attack and have to go to the University hospital to see what they know about

> pancreatitis-pancreas divisum and see what kind of care-treatment I receive. I

> know I am insane! So far, I have felt terrific!

>

[Guest guest]

Hi! Thanks, Kimber for your concern.

I have been doing quite well, very busy at school and have not been faithful in

reading-responding to PAI.

I am currently in Germany developing a student/teacher exchange program with a

school in Regensburg and learning about the German education system.

I wish I had time to go to the University Hospital to talk to the drs. about

pancreatitis. Supposedly, they are very good in medicine. Any German/Bavarian

pancreas sufferers in our PAI group?

This is sad, but I have been drinking, partly to see if I would get an attack

and have to go to the University hospital to see what they know about

pancreatitis-pancreas divisum and see what kind of care-treatment I receive. I

know I am insane! So far, I have felt terrific!

Since I have had my last attack in Nov. and started sandostatin, I have felt

great. Dr. Lehman did a sphrincteronomy and inserted two stents Dec. 11. I

have been doing terrific. Many of you may know I was in the hospital nearly six

weeks starting Sept. 30 and was on TPN for three months. I thought I might have

to go on disability.

I get my sandostatin shot once every month in the dr.'s office.

I have not missed a day of work since Dec. 15th.

My biggest question now is: now that I am " healthy " , do I have a Puestow,

whipple, sphrincterplasty when my pancreas has NO damage yet (I suffer from

recurring acute pancreatitis due to pancreas divisum, we think)? Will I have

any chance of a cure since I do not have chronic pancreatitis if the surgery of

opening the duct might cure my pancreas divisum?

Any thoughts from members would be great. My understanding from the postings so

far is that these surgeries a. give only a few more years of

pain-free/attack-free and b. if more surgery is needed there is too much damage,

scarring for further surgery to be successful.

Any thoughts?

Cecilia

[Guest guest]

Cecilia,

I am glad your are attack free, feeling good, and able to do great

things such as visit Germany. And I know that Germany has the best

beers, and many of the best wines in the world, I just cannot

understand this statement you made:

---

This is sad, but I have been drinking, partly to see if I would get an

attack and have to go to the University hospital to see what they know

about pancreatitis-pancreas divisum and see what kind of

care-treatment I receive. I know I am insane! So far, I have felt

terrific!

---

We have all learned that alchohol triggered pancreatitis is often

several times the magnitude of seriousness as other causes. Many

people who drink have SEVERE pancreatitis, with fluid collections, and

necrotic flesh. These people are at the highest risk of death, and

even in today's era of excellent emergency medical care, many do die.

Horrible, painful, " tubes stuck in the mouth, belly, and other places "

uncomfortable death.

I believe each person chooses their own path, and does what they will.

I do not believe my words can change your mind, I but hope that they

can help you to think about what you are doing more carefully. I have

had 15 attacks of pancreatitis. None of which were alcohol related. I

think it would be very sad to tests the skills of the Germans by

causing an attack of pancreatitis. You know that once a person has

pancreatitis they can never drink again. I do not even have a pancreas

anymore (surgery removed it) and I still will not drink.

I do not mean to preach to you. You will do what you will. I just hope

you think about it more carefully and perhaps come to the conclusion

that it is not worth the risk of death, or intractable pain, just for

a drink.

I hope you have a great trip!

Bert

[Guest guest]

Wow, I wish I could be with you in Germany. There are alot

of German doctors who do research on pancreatitis. However,

I don't think I'd drink alcohol to see them (person

preference since even eating something cooked in alcohol

gives me pain). If you have a pancreas divisum, it's

possible it could already be chronic and just not have the

symptoms yet, as the early stage of chronic is hard to

diagnose. I have the divisum too and they now think I've

been fighting pancreatitis all my life and have been chronic

since I was a kid. Are you diabetic yet? If not, you might

want to think about talking to Dr. Sutherland about the

removal of your pancreas and having your islets transfered

to your liver portal vein (I think that's where they put

them). Deciding on surgeries is not an easy thing to do. I

know, I've had two, one of which was to correct the divisum.

It gave me 4-5 years of no pancreatitis, but it came back

because it was already chronic.

I am glad you are feeling so good and that the sandostatin

shots have worked so well for you. They didn't work for me

when I tried it. I know that Shirley, Bert, n, Crystal

and several others have had the surgery with a great deal of

success, though there are some who have not had any success

with it. It's a hard process and if I wasn't diabetic, I'd

be seriously thinking about it.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

[Guest guest]

My biggest question now is: now that I am " healthy " , do I have a

Puestow, whipple, sphrincterplasty when my pancreas has NO damage yet

(I suffer from recurring acute pancreatitis due to pancreas divisum,

we think)? Will I have any chance of a cure since I do not have

chronic pancreatitis if the surgery of opening the duct might cure my

pancreas divisum?

>

> Cecilia,

It's good to hear that you are doing so well. I won't comment on the

drinking thing,it sounds like you are already familiar with what can

happen, and you must make your own decisions. But your questions

about surgery I can address. If they know that you have divisum, it

might be good to consider the sphincteroplasty to surgically open the

duct so that you won't develop chronic damage. Part of the reason I

have chronic pancreatitis right now is because it took so long to

diagnose the divisum that the pancreas was being destroyed for years

before they found out why.

I had a sphincteroplasty that gave me a good 1-2 years, but then

the chronic damage kicked up. Having the surgery before there is any

chronic damage could very well result in a " cure " . I would think it

is much too soon to consider the other surgeries you mentioned. Have

you had an ERCP or Endoscopic Ultrasound? Those are the tests I had

that confirmed the divisum and later the chronic damage. Much less

invasive than surgery and easier for the pancreas to tolerate.

Hope this has been helpful and keep feeling good!!

Be Blessed,

Diane H

TN State Rep

[Guest guest]

Please don't think I'm telling anyone what to do, but I feel like I want to

share my experience with alcohol related pancreatits in someone I cared for a

great deal. It's ironic that I have pancreatitis now, even though mine is

caused by my pancreas divisum, but I still know I can't drink. When I was in my

early 20s (I'm 48 now), I lived with a psychologist who was 42 and he was an

alcoholic. I didn't know that then - I thought alcoholics were people falling

down drunk and laying in gutters. I didn't know he was taking valium during the

day, and the would drink whiskey mixed with milk because it was " better on his

stomach " . He also drank metamucil mixed with wine, and ate tums like candy. He

was very healthy looking, big guy, had played football in college and was a very

highly regarded psychologist. One day (my first week on the job as a social

worker in a hospital) I got called to the ER and he was in there. He had eaten

a bunch of lobster the nite before and I think it caused his final attack. I

knew he had high triglycerides and a history of diabetes in his family and high

blood sugar, but didn't know how that related to pancreas or that there was any

problem. Well, he was throwing up and in so much pain. I thought he'd be

better the next day and brought him a book but all he could do was to beg for

cold wet towels on his chest and ask me if he was going to die. I said of

course not (denial can be amazing) and we still weren't sure what he had. That

nite the doc told me that his pancreas were hemorahging (sp?) and that his

condition was very serious. I still didn't get it, even though he was delirious

and had to be restrained physically. I went home (we had his 8 year old son

living with us) and about 3 a.m. called the hospital. He was in critical

condition and because we weren't married they didn't call me as next of kin. I

got there one half hour before he died. Then I had to tell his son. So that is

my early and very direct knowledge of pancreatitis and alcohol. And it scared

me to death when I learned I had pancreatitis, because I watched how horribly he

died. It still scares me which is why I never drink, even though my

pancreatitis is due to the pancreas divisum and I haven't had an alcohol

problem. So I would urge anyone who feels like they really need to drink

alcohol to get into some treatment because I would never want anyone else to

have to go through that. I hope I didn't upset anyone - just felt the need to

share that. Love to all - Anita

Re: Cecilia

We have all learned that alchohol triggered pancreatitis is often

several times the magnitude of seriousness as other causes.

[Guest guest]

Dear Cecilia,

You've already heard the pleas of friends and members who

care about your state of mind, so much so that they haven't

hesitated to caution you about the deadly mixture of alcohol and

pancreatitis. Please let me add my own.

They say there's nothing worse or more irritating than an

ex-smoker/drinker/glutton to give advice to others on

smoking/drinking/dieting. Perhaps it's because they've been so

close to the truth about their addiction and it's scared them so

badly about the damage they were doing that they don't want to

see anyone else suffer that way. But as an ex-drinker, I feel I

can't sit silently without telling you how I feel about this.

I care for you very much, and you've been such a valuable

member of the PAI that now I'm truly shocked that you would be

compromising your health, and very possibly your life, by

drinking. You aren't showing the responsible, knowledgable

behavior I've seen from you so many times in the past, that I urge

you to think about this and stop playing with fire before any more

damage is done. Enjoy your time in Germany, but not at the

expense of your health.

An alcohol induced pancreatitis attack is such a dangerous,

multi-organ medical complication that I don't think you want to

meet even the most highly experienced, aggressive medical

practitioners in Germany under those circumstances. Other than

being a medical nightmare that can challenge even the most

specialized doctors, the language barrier alone would be a

problem for everyone involved.

So I do hope you will regain your senses and put your health in

front of your whims. If this is a problem for you, please get some

professional treatment for addiction as soon as you can before

the damage is too great. It would be a shame to have your

wonderful experiences in Germany destroyed by an attack.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SE & SW Regional Rep

PAI, Intl.

Note: Comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

Dear Cecilia:

I know this is not a popular belief right now as far as the

pancreatitis goes, but I would not let anyone cut on me especially

since you are doing so well. I don't see getting things stirred up

at all. Surgery on the pancreas is a very, very serious thing.

On the drinking thing, at the risk of sounding horrible, why in the

world would you even think of drinking knowing you have pancreatitis

and also having been doing well for so long? Why would you want to

jeopardize any of that?

As far as the reason of drinking to have an attack and see what

these docs know................you have no guarantees that the next

attack regardless of what brings it on won't kill you! Why would

want to cause an attack on purpose?

My opinion is that there is more going on here that you are saying,

more than just wanting to see what the " German's know " about

pancreatitis. I am not being mean or judgemental or anything else,

but I think you might want to seek some professional help and find

out what is really going on.

Please do not drink anymore!

Kaye

[Guest guest]

I can not believe that someone would deliberately drink to see if they get an

attack. I am mind bogled by the stupidity of this.