New here - Chronic facing drainage

[Guest guest]

Hello all,

My name is Scot . I live in the Kansas City

Metro area. I am 43 and have 2 great kids (18 and 14)

and a very supportive and wonderful wife.

In August of 2000 I came down with acute pancreatitis

and went into the hospital with unbearable pain. I

had eaten way too many Tums and entered the hospital

with a Calcium level way over acceptable limits. I

had not been drinking for several years but I had a

long beer history (15 years). I did have two drinks

the night before - regret, regret.

I went immediately into a 10 day coma with

pancreas/kidney failure. I got sepsis from one of my

two blood transfusions and got encephalitis. When I

woke up I could not speak at all. I was released from

the hospital 2 1/2 weeks after I woke up from the coma

35 pounds lighter than when I came in. I had a

pseudocyst about 12 cm and a feeding tube when I was

discharged. During the coma my wife was sent home

twice being told I probably would not live through the

night. But... I'm still here. I was diagnosed with

Type 1 diabetes 3 months after I left the hospital and

take 3 to 4 insulin shots a day and a shot of Lantus

at night. I have great A1C tests. I cannot digest

red meat at all. I am mostly vegetarian as a result

but I eat fish and shellfish. I love to eat..... Or I

did. I happen to be a damn good cook and do 60% of

the cooking in my family.

It has been 3 years since the coma. My pseudocyst

shrank to 6 cm within a year but has remained at 6 cm

for the last two years. I have had bouts of acute

pancreatitis ever since. In May of this year it got

worse. I had pain for 6 weeks straight before it

subsided and again for 3 weeks in September. I have

had constant pain since October 1 and severe pain

after meals and in the evenings despite enzymes and

low fat meals.

My GI diagnosed me with Chronic Pancreatitis and

suggested I look for a " really good " surgeon to drain

my pseudocyst. He says my pancreas " should " be

drained via invasive surgery. He does not recommend

laproscopic methods for me. He said the success rate

for " internal " drainage is higher but still a coin

flip. He has me on 25 to 35 Viakase per day and wants

me to wait 60 to 90 days to contemplate the drainage

surgery.

I admit that I hope to have only one surgery and I'm

afraid of infection. I am not sure what I am going to

do.

I have googled the net for days. I have read 100's of

pages from dozens of sources. Wow! there is a lot of

info out there.

I am looking for people with similar symptoms and

experience for advice. I have read 100's of posts so

far. What a great group of people. You have already

helped me. THANKS!

Scot

=====

I'm feeling old today, Sherman... Set the Wayback Machine.....

[Guest guest]

Scot G. wrote:

In August of 2000 I came down with acute pancreatitis and went into the

hospital with unbearable pain. I went immediately into a 10 day coma with

pancreas/kidney failure. I got sepsis from one of my two blood transfusions

and got encephalitis. When I woke up I could not speak at all. I was released

from the hospital 2 1/2 weeks after I woke up from the coma 35 pounds

lighter than when I came in.

I had a pseudocyst about 12 cm and a feeding tube when I was discharged. I

was diagnosed with Type 1 diabetes 3 months after I left the hospital and

take 3 to 4 insulin shots a day and a shot of Lantus at night.

It has been 3 years since the coma. My pseudocyst shrank to 6 cm within a

year but has remained at 6 cm for the last two years. In May of this year it

got worse. I had pain for 6 weeks straight before it subsided and again for 3

weeks in September. I have had constant pain since October 1

My GI diagnosed me with Chronic Pancreatitis and suggested I look for a

" really good " surgeon to drain my pseudocyst. He says my pancreas " should "

be drained via invasive surgery. He does not recommend laproscopic

methods for me.

Dear ,

Welcome to our group. If you've been reading back through our posts, then

you're already aware that I, too, have a pseudocyst problem. My largest one

now, that just put me in the hospital is also 6 cm. and then I have another

smaller one that's just under 4 cm. Unfortunately, drainage isn't an option for

me at this time, but I sure wish it was possible, because these pseudocysts

keep resolving then filling back up again, causing all sorts of problems.

As you are aware, as long as the pseudocyst is there, the pain is there

twofold, and when they become inflamed and enlarged, the pain is out of this

world! I had the same pseudocyst that's giving me so many problems right

now drained by CT-guided fine needle aspiration in May of 2001. It resolved

down to 2 cm., then an attack in January of this year filled it back up to 6 cm.

again. It resolved for the second time back down to 3 cm., and I was feeling

pretty good. Then eight months later, October of this year, it filled back up

AGAIN, and sent me to the hospital. To make matters worse, within a week,

the other pseudocyst in the tail reared it's ugly head (guess it couldn't stand

the competition) and it, too, filled back up to about 4cm.

I also have pancreas burn-out and type 1 brittle diabetes, which, after a few

months of adjustments, I have been able to keep under good control with

Lantus and Humalog and an A1c of 5.5%.

I've done some extensive research on pseudocysts and all the different

internal and external drainage procedures, both laproscopically and

surgically. You may have already learned all you need to know about this,

but if not, I'd be happy to share the my files with you by email. I also have

copies of some additional more extensive research on pseudocyst drainage

techniques that was given to me by my GI, that I'd be happy to copy and mail

or fax to you. I doubt you've seen this information, because it came from a

private medical reseach website that can only be accessed by medically

qualified members who pay an exhorbitant fee for membership. The reason I

know this is because I asked my GI about it because I wanted to access this

site for information for our PAI research files.

I'd have to agree with the advice that you've been given on surgical drainage

as opposed to laproscopic procedures. Statistically, the percentage of

successful surgical drainage is much higher than that done laproscopically.

Finding the most qualified pancreatic surgeon would need to be high priority

for you. There are excellent pancreatic surgeons in several parts of the

country, MUSC in ton, SC, Hopkins Med. U. in Baltimore, Duke,

NC, and Shands at U. of FL. are a few that come to mind for this region.

Please let me know if you would be interested in any more research material

that might make it easier for you to make your decision concerning your

drainage options. As you know, having a pseudocyst that large is quite

threatening. One lives on the edge much of the time, with the fear of it

rupturing and inducing a medically life threatening scenario. I wish you well,

with whatever you decide to do.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.