Re: Re: Pancretitis

[Guest guest]

In a message dated 7/1/00 2:47:57 PM Central Daylight Time,

shirlf3542@... writes:

<< Hi Debbie, I just read on the e-mail you sent to either click the reply

box

or write an e-mail. I hope I know what to do now. Thank you, Shirley

>>

no problem - i forgot to ask you where you live. i am in arkansas just

outside of little rock. i heard a constant barrage of bottle rockets across

the street! the celebration has begun!!

debbie

[Guest guest]

Hi again Debbie, I live in Cincinnati, Ohio. That's is a long way from where

you live. At least it feels that way to me since I have never be there. Do

you or any of the others members of the group have pancreas divisium. It is

bad and I am in the middle of an experimental program and then surgery. The

surgery is a puestow. Do you know anything about it. The surgery is

experimental because of what the doctor doing to my small and only pancreas

duct to get it ready for surgery. I hope you have a good day tomorrow.

Shirley

[Guest guest]

In a message dated 7/1/00 3:22:47 PM Central Daylight Time,

shirlf3542@... writes:

<< Do

you or any of the others members of the group have pancreas divisium. It is

bad and I am in the middle of an experimental program and then surgery. The

surgery is a puestow. Do you know anything about it. The surgery is

experimental because of what the doctor doing to my small and only pancreas

duct to get it ready for surgery. I hope you have a good day tomorrow.

Shirley >>

i don't have divisium, but in know that several on the list do. jang,

riverbendranch2, lenhartrocko, and i know there are a bunch more - those are

the only ones that i have made any note of. i have tried to keep track of

where everyone is from and " why " they have panc., if they know the cause so

that when i talk to them i won't ask stupid questions etc;. getting to be so

many on the list, though that it is hard to do, unless people will fill out

their profiles. ohio is a ways from here. at least i know what area of the

country you are in. i am having to wait on my dr. to find a dr. or clinic to

send me to out of state for an evaluation or more testing. so far i am

idiopathic - no cause found.

debbie

[Guest guest]

Thanks Debbie for the divisium people. I will write them. Have you heard of

Dr. Lehman in Indianapolis? They are doing a lot of pancreas work. He and

the surgeon from there just gave a seminar in the Amelia Islands. Maybe they

can help although I haven't been helped yet. They are planning a surgery for

me and I am very scared. Especially since it is experimental. Shirley

[Guest guest]

In a message dated 7/1/00 4:22:23 PM Eastern Daylight Time,

shirlf3542@... writes:

<< Do

you or any of the others members of the group have pancreas divisium. It is

bad and I am in the middle of an experimental program and then surgery. The

surgery is a puestow. Do you know anything about it. The surgery is

experimental because of what the doctor doing to my small and only pancreas

duct to get it ready for surgery. I hope you have a good day tomorrow. >>

Hi Shirl,

I too have Pancreas Divisum. You are correct when you say how miserable this

illness is. I also had a Puestow performed. Unfortunately, in my case it

was ineffective and caused me to become worse than before my surgery. I was

told that I had a 75% chance of correcting my problem and having a pain free

existence. I was unfortunate enough to be one of the remaining 25% and have

been having a lot of difficulty since my surgery.

Who is going to perform your Puestow? It is critical that you get an

extremely competent physician; one who is familiar with this type of surgery,

to perform this sort of surgery on you. Many, many things could go wrong and

you need an experienced hand working on you. You mentioned that this was an

" experimental procedure. " I would like to disagree as my surgeon has been

performing this surgery for over 10 years. It is NOT an experimental

procedure and if your doctor is telling you that it is, please run-do not

walk-to another, more experienced surgeon when it comes to pancreatic surgery.

I apologize if anything I said is taken offense too. That was not may

intention. It is only that, after having many surgeries up to and including

the one you mentioned, I know all too well what can happen to you when things

do not go as expected. I would never want anyone to experience what I have

had to experience and if, by telling you this, it gives you reason to pause

or challenge you surgeon, than more power to you. That was all that I was

after, so please do not take this as criticism of you doctor or your course

of treatment. We all must do what we must do and trust who we must trust to

get through this illness.

Good luck with whatever you decide to do. I just hope this message doesn't

get to you too late.

Andre'

[Guest guest]

Thanks Andre for writing me back. In no way have you offended me. I want to

raw truth and I appreciate any and all information you can give me. I am so,

so glad that you have written me. I have so many questions to ask you and to

tell you my dilemma. I hope you feel well enough to read all of this. The

doctor that I am going to is Dr. Lehman at University Of Indianapolis Medical

Center. He is a gastro doctor. The surgeon he uses is Dr. Madura. The

experimental part of the surgery is this. Dr. Lehman puts stints into the

small pancreas duct. I had two small ones done in 1997 and one larger one

then also. The two smaller ones did not help me at all. The third one let

me eat one-half of a meal for a short time. Since the stints were put in

1997 I have worsened considerably. Now I am in the hospital so often with

pancreatitis. Each time I have it it gets worse. Four months ago I was

having so many attacks that my doctor here in Cincinnati sent me back to

Lehman because he said he could do no more for me. Doctor Lehman's

experimental approach to divisium is to put a small stint in for the first

time then every two months increase the size. I have been going to him since

six months now and he put in a # 5 stint. I was only able to eat one-third

of a meal for seven days. He told me at the beginning that if I could not

eat with the stints in then the puestow would not work on me. After the # 5

stint I went back to him in two months and he put in a # 6 stint. The third

time I went back to him he said that my duct was wide open and he put in two

# 5's. I now have the two five's in now and due to see him for the next ercp

and the next larger stint Aug. 7. I don' t know what his next step will be

since I am not doing well. After seven days I have pain and shut down. I

then am unable to eat at all. The only good that I can see from this is that

they hold my duct open and keep me from having pancreas attacks. I am so

confused. I don't know where to turn. I went to Dr. Warshaw in Mass. a

couple years ago and he said that he is not sold on these stints. That he is

just waiting and watching what the outcome is from all these experimental

theories. I don't know what to do at this point. Whether to continue with

the stints and the puestow and risk being much worse. Or try to wait and

hope something new comes out for all of us. Do you have an opinion? I have

tried several doctors and they all have a different surgery for this disease.

That confuses me more. Another interesting thing that I picked up on was

this. The doctor said he has for seven years had a 75% improvement in the

patients. His nurse told me that one-third improved, one-third stayed the

same, one-third got worse, and one died. Andre I don't know what to do. I

do know that the stints have made me so much worse. Before the stints I had

no documented pancreatitis attacks. I couldn't eat and had lots of pain but

no attacks. After the stints I have pancreatitis attacks even when I don't

eat I am sure you have experienced that also. One surgeon in Cincinnati

where I live told me that I was being over treated with the stints, that the

stints were making me so much worse. He wanted to remove the tail of the

pancreas and do an overhaul to the head. I didn't understand what he was

talking about because I mentally tuned out. Sometimes I do that when I am in

with a doctor so my husband always goes in with me. We have friends from our

church who has a young son who had hereditary pancreatitis. The doctors at

Children's Hospital removed his pancreas and sent the pancreas to Minn. and

collected the islet cells then sent the cells back to Cin. then injected them

into his portal vein and he had very good results. I plan to call them and

ask how he is doing now since it has been some time since I spoke with them.

I also heard that Cin. Hospital has some sort of devise made of plastic

placed inside dogs and the dogs are being fed tons of sugar and they are

doing great. I don't know what to believe. The doctor in Cincinnati told me

about the dogs and my doctor in Ind. said that the islet cell transfer isn't

working and that they are going to try the dogs again. So here I am having

my pancreas damaged more and more. Since this has never been done in the

past they don't know if the duct will stay open for very long. One doctor

told me that all the doctors have a different cure because they don't know

what to do about a sick pancreas. Lehman says a sick pancreas is better than

no pancreas at all. What do you think of all this? Please let me know.

It's not too late to turn back yet. When I get the # 30 stint put in then

there will be no turning back. That stint cannot be removed by an ercp, the

surgeon has to cut it out during the puestow surgery. Thanks Andre for

reading all of this. Please help me if you can. Thanks again so very much.

Shirley

[Guest guest]

Shirley,

There was so much in your message to me that hit home, I was unable to

highlight anything specific. You sound like I did from 1992 until December

1996 when I had my surgery by DR Warshaw. Like I told you in my previous

message, this surgery ended up further ruining what little capacity to live a

somewhat normal life. Prior to this last surgery, I was able to sleep most

nights, all night in bed. Now, it's been almost 1 whole year since I last

spent the entire night in bed. Most nights, especially when I'm really

feeling " rough, " I won't even try to sleep in bed, but just drift off to

sleep in my Lazyboy.

I would run from this DR Lehmann as fast as I possibly could. I have been

through this stent thing also, and you are absolutely correct-they do make

you worse. I never made it past the first level when the pain became so

intense I had them remove it within a week. Since that time, my pancreas

became progressively worse, culminating in 4 progressively worse surgeries to

correct my Divisum. Naturally, none of these subsequent surgeries was of any

help (DR Warshaw performed 2 of them and I had the other two performed in New

Orleans by a DR Litwin-still the most honest and down-to-earth doctor I've

ever had the pleasure to be associated. He was the first doctor who treated

me as if I knew what the hell I was talking about and treated as an equal in

my health care plans.

You sound really confused. I wish I could give you the answer to your

problems, but as you can see from my own condition, I'm probably the last

person you should seek help from considering how I have ruined my own health.

It was interesting to hear of some of the research being done out there such

as the islet cell transplant and something about dogs and sugar (I didn't

understand this one). If I have to eat dog pancreas minced and mingled with

sugar by the tons to relieve myself of this living hell I'm in, I'd be the

first one in line for my portion.

Please, try to have those stents removed before you do irreparable damage to

what's left of your pancreas. As for the removal of the head of the

pancreas, I had that done and it was unsuccessful. I also had my pancreas

opened down the middle (sliced) and connected to my Jejunum to help

facilitate the drainage of my pancreas (Duval Procedure). This probably

worked for the longest and gave me the most relief-from 1992 to 1994

completely pain free and able to eat anything and in any quantity.

Unfortunately, this too eventually failed and when it did, I was in much

worse shape than I had ever been in before, causing me to make a second trip

to DR Warshaw and this latest surgery. Now that I am starting to exhibit

signs of diabetes (no medication needed as of yet), I'm considering having

them remove my entire pancreas and say the end of this. If it kills me, oh

well... If I survive but in the same condition, nothing is lost except for a

period of convalesce. And there is always that hope that it will finally

allow you to live your life.

Good luck in whatever you decide. Having been there before, I know exactly

what you must be going through right now.

Andre'

[Guest guest]

Oh my Andre, you have been through hell and more. You have suffered

unbelievably. Your message is very clear to me what you have lived with and

what you are living with now. If I could help you or anyone with this

problem I would do it in a second. I am so sad and teary just knowing what

you are going through and what we all go through. I am so glad that you were

honest with me and told me just what having these surgeries are all about.

Doctors talk a good talk and we are so needy and hopping for a recovery that

we do anything. Even though I am going crazy not knowing what decision to

make and even reading what you have told me there is a longing or a desperate

hope in my mind of what if it did work for me and I didn't take advantage of

it now before my pancreas is more destroyed by pancreatitis. I am nervous,

depressed, confused, desperate all the time. I cry all the time. I feel

like my family would be disappointed if I didn't have the surgery because

their lives are so negatively affected by my disease. I think should I do

this for them, then I think but if I got so much worse or died they would

have to nurse me even more or be devastated. I realize that I am going on

and on and I apologize to you especially with you feeling so bad yourself.

Andre, I am a basket case. A mess. I went to a psychiatrist for help and he

said that he would be scared to death too. He suggested antidepressants and

tranquilizers to help me. I am all ready on low doses of those medicines and

they don't help with making this decision. I know without a doubt that if I

decide to have the surgery I am taking a big chance. I am going to go right

now and take an ativan. I am like you with the sitting up in a chair at

night. I have to sit up, it helps relieve the pain. Thank you and please

keep in touch with me. Let me know how you are. I will be praying for you.

Shirley

[Guest guest]

I would run from this DR Lehmann as fast as I possibly could. I have

been

through this stent thing also, and you are absolutely correct-they

do make

you worse. I never made it past the first level when the pain

became so

intense I had them remove it within a week. Since that time,

my pancreas

became progressively worse, culminating in 4 progressively worse surgeries

to

correct my Divisum. Naturally, none of these subsequent surgeries

was of any

help (DR Warshaw performed 2 of them and I had the other two performed

in New

Orleans by a DR Litwin-still the most honest and down-to-earth doctor

I've

ever had the pleasure to be associated. He was the first doctor

who treated

me as if I knew what the hell I was talking about and treated as an

equal in

my health care plans.

Hey Andre'

Great to see you back! I just have to tell you how much I love reading

your posts. I learn something new everytime I read them.

In your post above to Shirley, I have to applaud you on your answer!

When I was first diagnosed with Pancreatitus, I was so lost and felt so

alone, and now I feel almost like an expert in 8 months! I went to

IU MED CENTER seeking help and understanding. My experience to say

the least was disappointing.

I found it amazing

how the doctor I was assigned to immediatly wanted to do an ERCP.

No questions asked and then assured me I would be fixed and on my way.

Never to return. However the longer I have been in this mess, the

more informed I become! I have spoken to several Dr.s in regards

to this horrid disease. It is amazing how many discourage me from

having this ERCP or anything else done to my pancreas. The oncologist

told me that once they start invading, you are done for. It will

never end. And looking at all of you who have had them, I see exactly

what he means.

I have chosen to not have anyone do anything to my Pancreas until it is

absolutly necessary! I believe because of my decision I have been

able to control it with diet. When i stray off my diet I pay with

the pain.

The sign on my door says NO ERCP!

Becky

[Guest guest]

In a message dated 7/13/00 3:21:21 AM Eastern Daylight Time,

briffle@... writes:

<<

In your post above to Shirley, I have to applaud you on your

answer! When I was first diagnosed with Pancreatitus, I was so lost and

felt so alone, and now I feel almost like an expert in 8 months! I went

to IU MED CENTER seeking help and understanding. My experience to say

the least was disappointing.

I found it amazing how the doctor I was assigned to immediatly wanted to

do an ERCP. No questions asked and then assured me I would be fixed and

on my way. Never to return. However the longer I have been in this

mess, the more informed I become! I have spoken to several Dr.s in

regards to this horrid disease. It is amazing how many discourage me

from having this ERCP or anything else done to my pancreas. The

oncologist told me that once they start invading, you are done for. It

will never end. And looking at all of you who have had them, I see

exactly what he means.

I have chosen to not have anyone do anything to my Pancreas until it

is absolutly necessary! I believe because of my decision I have been

able to control it with diet. When i stray off my diet I pay with the

pain.

The sign on my door says NO ERCP!

Becky

--------------------

<!doctype html public " -//w3c//dtd html 4.0 transitional//en " >

I would run from this DR Lehmann as f >>

Hi Becky, I am learning more all the time. Tell me more about your condition

and your experiences at IU. Which Dr. did You have? I am ready to back out

of this surgery. Help, Shirley

[Guest guest]

Hi Becky, I am learning so much. Which dr. did you have at IU that wanted to

do the ercp on you? I wish that I had been in this support group 8 months

ago then I would not have these stints in me right now. It sounds to me that

Karyn's Dr. Dr. Sherman is a more honest dr. My husband and I have noticed

that Dr. Lehman doesn't tell us much. We always feel that we are just

hanging there. I sometimes feel that he has this agenda to make a name for

himself with the stints and then the surgery. He has only done 30 of these

over the last 7 years and he did admit to us that he would not know if this

procedure was a success for 10 years. I have to rethink this whole thing. I

am so confused. I know when the stints come out I will start having

pancreatitis all the time. Shirley

[Guest guest]

In a message dated 07/13/2000 3:21:22 AM Eastern Daylight Time,

briffle@... writes:

<< I went

to IU MED CENTER seeking help and understanding. My experience to say

the least was disappointing. >>

Becky, bless your heart. I haven't said much about IU, but that was one of

the worst experiences I've had throughout this ordeal. They seemed

heartless. And once they finished the procedure, Dr. Sherman proclaimed me

fixed and I was dismissed with more pain than I had to begin with. Then his

only suggestion was to do yet another ERCP (I had terrible insurance at the

time and couldn't afford to pay for another long hospital stay because ERCPs

always sent me into acute attacks).

It sounds as if several people have had such good luck with Dr. Sherman and

Dr. Lehman, and I'm glad that's worked out for them. But I'm also glad to

hear that I'm not alone in feeling that their treatment left much to be

desired.

Helen

[Guest guest]

In a message dated 7/14/00 1:42:35 PM Eastern Daylight Time,

briffle@... writes:

<< Until I can get correct answers I will listen to my body .

As I said earlier you have to think clearly and hard about what this

will mean to YOUR life.

I hope this helps you! Good luck Shirley! You are in my prayers

and thoughts.

Becky

>>

Thanks Becky, It's a little to late for me after I had 13 ercp's and several

other surgeries but not on my pancreas as yet. I do have a choice about the

pancreas surgery. The bad thing about that choice is that now that I have

been so damaged from stints I will have continuos pancreatitis attacks from

the damage that they have done to me. Knowing what will happen if I don't

have the surgery due to the stint placements and not really knowing but

fearing what will happen to me if I go ahead and have the surgery is so

overwhelming to me. I just can't make a decision. I am so stressed by all

of this. Thanks again Becky, and good luck to you. I hope you can stay

well. Shirley

[Guest guest]

Hi Becky, I am learning so much. Which dr. did you have at IU that

wanted to

do the ercp on you? I wish that I had been in this support group

8 months

ago then I would not have these stints in me right now. It sounds

to me that

Karyn's Dr. Dr. Sherman is a more honest dr. My husband and I

have noticed

that Dr. Lehman doesn't tell us much. We always feel that we

are just

hanging there. I sometimes feel that he has this agenda to make

a name for

himself with the stints and then the surgery. He has only done

30 of these

over the last 7 years and he did admit to us that he would not know

if this

procedure was a success for 10 years. I have to rethink this

whole thing. I

am so confused. I know when the stints come out I will start

having

pancreatitis all the time. Shirley

Hi Shirley,

I am so sorry it has taken me so long to get back to you. This has

been a very hectic week here. I have neices and nephews in the county

fair, and have been running all week.

I am sorry you are having such a rough time making the vital decisions

you need for your healthcare. I want to uphold what Karyn said earlier

about making our own choices. Each one of us is in a different

stage of this disease. I consider it a "personal disease"

When making my decisions for my health care I NEVER make a decision with

out thinking about it for 24 hours. This has saved me MANY times!

In my 24 hours I think about the impact this would have on my life I write

out the good and bad(sounds silly but it works for me) and I ask LOTS of

questions. If I do not get my answers I find another Dr. and look

further. That is where I am at at this point.

You asked about my Pancreatitus. I started having pain the day before

Christmas1999. When I went to the Er I was diagnosed with gas and told

to take Metimucel. The next day when I went to the ER they told me

I had Pnemonia and stomach flu. On mOnday I went to my GP and he

sent me to the hospital and had a CT scan. He then called me and

told me to get back to the hospital and I was in for a week and a half.

I also had a transfusion. My Dr. told me I was fine and could

go back to work. I did and was back in the hospital for another week.

My GP told me I was fine again and would not have anymore problems.

I was in pain more

than I was out of pain. Then he wanted to put me on antidepressants.

I refused flatley!

That is when I went to IU. I was assigned to Dr. Evan Fogel.

He was nice and listened to me. He looked at my xrays and scans ect.........And

before I was out of his office he wanted to do the ERCP. He told

me it was possible to have an attack after the procedure but very rare.

Then he told me after I had the procedure done and thye put in a stent

he would probably never have to see me again and I could return to normal

life.

After all of this and much consideration, I decided I was not getting the

correct information. As it has turned out I have been correct in

my thinking. I have not been back to IU and I have taken my own healthcare

into my hands. My oncologist as well as my GP agree with me.

I always had the mentality that the Dr is right. Well I changed my

mind quickly and I had to get tough.

For me, ERCP does

not seem to be worth the end results. At this point I am able to

control my pain and disease with diet. I eat no red meat or fatty

stuff. I have also cut down on my sugar intake and no longer drink

pop. When I stray from my diet or have a busy week with a lot of

lifting and such then I suffer the consequences.

As long as I can control this I will not let anyone do anything invasive

to my pancreas as I do not want to risk anymore damage. If I get

to the point I can no longer control the pain, I will consider an ERCP.

Until I can get correct answers I will listen to my body .

As I said earlier you have to think clearly and hard about what this will

mean to YOUR life.

I hope this helps you! Good luck Shirley! You are in my prayers

and thoughts.

Becky

[Guest guest]

In a message dated 7/11/00 11:38:07 PM Eastern Daylight Time,

shirlf3542@... writes:

<< I am so glad that you were

honest with me and told me just what having these surgeries are all about.

>>

Shirley,

We all have our sad horror stories to deal with, I'm no special case. I

appreciate the kind words of sympathy, however. It still feels unusual for

me to hear something like this from someone else :-)

I've been thinking about what I was saying to you the last time I wrote to

you concerning the decision you face. I hope I didn't, in any way, influence

you into making a choice you aren't ready to make. One thing I have come to

understand about this illness is that it is extremely individual in all

aspects; from treatment to symptoms, even to ways to treat the discomfort or

level of pain (if any) that's experienced by us.

With this said, I have a bit more aI'd like to share with you about my

experiences with my surgeries. The surgery that was the least effective and

had the shortest duration of success was the Puestow. The surgery that was

the most effective and had the longest duration of success was the Duval

(when they opened-up my Pancreas, connecting the ducts and creating one large

opening for the Pancreas to drain. They than reconnected my Pancreas to my

Jejunum (intestine) to facilitate digestion. It was only after this surgery

that I actually had hopes of a lifetime of normalcy. It remained effective

(completely pain free and able to eat anything I wanted) for a little over 4

years! The Whipple has not been effective but still has been more effective

than the Puestow since I am in much less pain than I used to experience

after, my Puestow. This may be because I now refrain from eating altogether

whereas before I used to try to resume I more normal eating habits.

This is an extremely tough call you must make, I don't envy you your

decision. I don't know if I had it better or not to not know someone who had

Pancreatitis that I could hear about his experiences, since I know they would

have scared me from most of the things I've tried in the past. Whatever you

decide, I will be praying that you are able to live with the consequences of

this decision.

Take care of yourself.

Andre'

[Guest guest]

Andre'

What if any procedures or surgeries have you had since your Whipple? When did

you have the Whipple? How are you doing now? Just interested in someone

else's experiences since a Whipple. I had mine in Aug of 99. Just coming up

on one year anniversary. I can pretty much eat what I want and only have

nausea once in a while. However, I have continued to have the hot, stabbing

pain in my upper back until June 21. My doctor finally persuaded me to have

an Intercostal Nerve Root Block. It' so amazing....I haven't had any back

pain since. It's now 25 days pain free. I would have never believed it. I

just thought it can't make it any worse so I'll give it a try. I feel so good

and have been doing things I haven't been able to in over a year. What, if

any, problems have you had since your Whipple? Thanks for any information you

could share with me.

Terri L.

[Guest guest]

In a message dated 7/16/00 9:50:41 PM Eastern Daylight Time, Tll619@...

writes:

<<

What if any procedures or surgeries have you had since your Whipple? When

did

you have the Whipple? How are you doing now? Just interested in someone

else's experiences since a Whipple. I had mine in Aug of 99. Just coming up

on one year anniversary. I can pretty much eat what I want and only have

nausea once in a while. However, I have continued to have the hot, stabbing

pain in my upper back until June 21. My doctor finally persuaded me to have

an Intercostal Nerve Root Block. It' so amazing....I haven't had any back

pain since. It's now 25 days pain free. I would have never believed it. I

just thought it can't make it any worse so I'll give it a try. I feel so

good

and have been doing things I haven't been able to in over a year. What, if

any, problems have you had since your Whipple? Thanks for any information

you

could share with me.

Terri L. >>

Hi Terri, I am in the stint procedure stage before a puestow surgery. My

question to you is, do have divisium? Thank you for any information you can

give me. Shirley

[Guest guest]

In a message dated 7/16/00 9:50:54 PM Eastern Daylight Time, Tll619@...

writes:

<< What, if any, problems have you had since your Whipple? Thanks for any

information you could share with me. Terri L. >>

Terri, I had a modified Whipple in 1986 with a total recovery but it took

about a year to recover from the surgery. Then in 1999 I was diagnosed with

Chronic Panc. However my condition seems to be much less sever than many

others on this board.

[Guest guest]

In a message dated 7/16/00 10:49:42 PM Central Daylight Time,

shirlf3542@... writes:

<< I am in the stint procedure stage before a puestow surgery. My

question to you is, do have divisium? Thank you for any information you can

give me. Shirley

>>

Shirley, I didn't have divisuim. My problem was from a tumor on the head of

my pancreas. Luckily it wasn't cancerous. 98% of them are I was told. I have

seen where lots of people on this board, and another one I'm on, have had the

puestow surgery. Good luck to you, when will you be having the surgery done?

Terri L.

[Guest guest]

In a message dated 7/17/00 2:02:45 PM Eastern Daylight Time, Tll619@...

writes:

<< when will you be having the surgery done? >>

Hi Terri, I don't know when I will have the surgery. It all depends on how

fast they stint my pancreas up to the size they want. I also am having

doubts if they will do the surgery at all because I was supposed to be able

to eat with the stints in and That is not the case. Wish me luck. I don't

know if I want you to wish me luck to have the surgery or not to have it.

From what I have heard I should run the other way as far as I can get from

that surgery. I am very scared. Shirley

[Guest guest]

In a message dated 07/16/2000 9:50:39 PM Eastern Daylight Time,

Tll619@... writes:

<< Just interested in someone else's experiences since a Whipple. >>

Terri, my mother had a Whipple in the Spring of 1992. She'll be 87 in

September. The only bad side effect she's had is occasional uncontrollable

diarrhea. She had a cancerous tumor in the duct leading to her liver, so I'm

sure this has saved her life and given us these past 8 years with her. Since

they took so much and the margins were clear, she didn't need chemo or

radiation.

Helen

[Guest guest]

Andre,

I also have divisum. I have never heard of this puestow. Could you explain it

to me. My doctor has never mentioned it either. Where do you live? Who is

your doctor? I live in Indianapolis. I have had pancreatitis since 1996. Any

information would be helpful. Thank you,

[Guest guest]

In a message dated 7/16/00 9:50:41 PM Eastern Daylight Time, Tll619@...

writes:

<< What if any procedures or surgeries have you had since your Whipple? When

did

you have the Whipple? How are you doing now? >>

Terri,

It's great to finally hear a success story in relation to the Whipple. I was

beginning to think all of the statistics the doctors were giving to me were

incorrect :-)

I had my Whipple done at Mass General by DR Warshaw on 12/12/96. I had to be

rushed back into surgery on 12/29/96, while still in the hospital

recuperating from the Whipple. I was finally released to go home under home

nursing care on 1/15/97. I was able to eat anything (or drink for that

matter) until the latter part of January, at which time I subsisted primarily

off of Gatorade and TPN (of course). I continued to receive TPN until the

end of February, at which time I began to be able to eat small quantities of

food. What a joy this was! Unfortunately, my condition began to, once again

deteriorate until now. I am now unable to eat anything without extreme pain

and possible vomiting (it may not happen every time I eat something, but it

does seem to build up until I do have to let it out). Once I was able to get

by just by drinking Ensure, but have found out this too is staring to cause

me the same level of difficulty. I have been in constant touch with my

doctors, especially now that I have starting bleeding rectally. I am

scheduled for tests next week (Upper and Lower GI since the CAT Scan doesn't

work for me due to my surgical clips). I am praying that they find some sort

of blockage in my intestine. That way, they can correct my problem with

simple surgery and I can once again have hopes of returning to somewhat of a

normal life for myself and my family.

I didn't intend for this to be so lengthy, so please forgive my wordiness :-)

I am thrilled to hear that things did work for you, though. Keep me posted

on any further progress you make. There is still hope for me yet.

Andre'

[Guest guest]

In a message dated 7/16/00 9:50:41 PM Eastern Daylight Time, Tll619@...

writes:

<< My doctor finally persuaded me to have

an Intercostal Nerve Root Block. It' so amazing....I haven't had any back

pain since. >>

Terri,

2 years ago I was tested for this devise but later found out that I was not

a candidate. I got little if any relief at all on the test. While the

doctor did admit that he could go higher on the dosage and try again, he held

out little hope that I would achieve sufficient relief to warrant a second

attempt. This I wholeheartedly agreed with and went back to swallowing my

pain meds :-(

Andre'

[Guest guest]

In a message dated 7/28/00 12:05:13 PM Eastern Daylight Time,

acastenell@... writes:

<< There is still hope for me yet.

Andre' >>

Hi Andre, It's so good to see that you are back. I just know there will be

something done to help you. Don't give up hope. I missed you. Keep us

informed about your test. Shirley