To Bert

[Guest guest]

To Bert,

I read your post. Your story sounds similar to mine. I had a TP in August, 2000,

in Liverpool, UK (no IST). I had been really well until September this year.

Like you, i began experiencing pain. I went back to the hospital in Liverpool

for investigations. My liver function tests were abnormal, suggesting biliary

obstruction. My consultant thought i had cholangitis, and an endoscopic

ultrasound showed that i did have some pancreatic tissue left. My surgeon

advised further surgery to remove this. I was devastated, and didn't think i

could face any further surgery, but i went through with it. I had the operation

on 11th November and after two weeks in hospital i am recovering at home. I did

wonder at first what i had let myself in for, undergoing the whole procedure

again, but i can see the point of it now that i am recovering.

I hope you are reassured by my story - hope it hasn't made you more anxious. If

i can help any further please let me know. Please discuss your situation with

your surgeon. The sooner they find out what's causing your pain, the sooner it

can be sorted out.

Best of luck.

Sue.

> Message date : Dec 17 2003, 03:56 PM

> From : bbolin@...

> To : pancreatitis

> Copy to :

> Subject : I may be having complications

> Hello all,

>

> I want so much to be a success story, after having a total

> pancreatectomy with auto islet cell transplantation. But right now

> it may appear that things are getting complicated.

>

> To be honest I am scared. My wife and I have just finished up a move

> to a nicer apartment across town. I attribute the hard work of

> moving things and the stress that is associated with a move to my

> recent down-turn but I may just be in denial.

>

> I started having some intense pain (but not as bad as acute

> pancreatitis) and nausea a week ago. I had to go to the ER because

> the pain was more than I felt I should tolerate. I felt embarrassed

> to be in this situation even though that isn't rational, so I went

> to a smaller hospital instead of where I had the TP/ICT. They did a

> film, blood work, and gave me a big shot of dilaudid and phenergan.

> My film looked okay, although my doctor refused to believe that I

> did not have any pancreatitic tissue. He kept telling me that I must

> have had a Whipple that no one would remove an entire pancreas out

> of a 36 year old male in otherwise good shape. Whatever.

>

> Anyhow. My liver panels are not good. my Alk Phos was 1147 and the

> reference range is 50-136; um so that is horrible. My AST is 250,

> and my ALT is 334. Both are supposed to be around 30. I had an

> appointment to see the surgeon who removed my pancreas but to be

> honest fear struck and I blew off the appointment. It just happened

> to work out that my 6 month follow-up is occurring now while I am

> having my liver melt down on me. So my surgeon doesn't know yet that

> I am having complications. Those kind of results point to an

> obstruction of the bile ducts and I am guessing as a result of scar

> tissue from the gastric bypass portion of the total panc. My fear is

> I will have to undergo an ERCP then an eventual surgery to resolve

> this. I do not feel I can physically or emotionally handle surgery.

>

> I had an emotional melt-down last night. I never really had a major

> emotional crisis when I was facing pancreatitis and a total

> pancreatectomy, I guess because I had no clue how difficult the

> surgery was. But now I know and for the first time in my life I feel

> terror. I have been scared before, sure, but never have I felt

> terror. Well, know I do and frankly it sucks.

>

> I told my wife last night that I am sorry that I might not be able

> to keep that promise of growing old with her. I guess I am being

> overly dramatic but right now I am freaked out.

>

> Sorry for burdening you all and for being a whimp. But thank you for

> listening.

>

> Blessed be,

> Bert

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 12/17/2003 4:52:15 PM Eastern Standard Time,

bbolin@... writes:

I have done really well up till now. I feel more flu like than the

kind of sick you get with pancreatitis. The pain isn't horrible but

its pain. All in all, knowing what elevated liver enzymes can do to

your mind with a toxin build up in the brain, scared me along with

the fear of having to get cut open again.

Hi Bert, I know just how you are feeling when you describe the flu like

symptoms. I have chronic hepatitis B and have had it since 1973 when I had

braces

on my teeth. I am so affected by chronic hepatitis B which causes me to live

like an invalid. I am already weak and frail from not being able to eat and

the hepatitis with the fatigue, no stamina, body aches and pains, itching etc.

I have to use a scooter when I leave my home. So you see Bert I know how

terrible you are feeling but hang in there and keep a positive attitude. I know

that your liver ailment is curable. In no time you will feel well again.

I too had so many CT scans. I know I had to have at least ten. I am a glow

light also. I didn't like having CT scans but it was something that had to be

done. I still have them for my liver. I will never give up the fight no

matter how bad it gets and it gets really bad sometimes. I sometimes get down

and depressed about not being able to eat and then I feel guilty when I think of

other people who are in worse condition than me.

You have a right Bert to get upset and feel lost. After what you have been

through you know the pain and sadness of being ill and all that goes with it.

Don't be hard on yourself as we are only human. Please keep us updated. We

care so much. Love, Shirley PS I know that you will be well again.

[Guest guest]

Sue,

Thank you for sharing your experiences with me. They do reassure me.

It is not believed at this point that there is any pancreatic tissue

remaining; it is more likely that I have a bile statis problem from

where they sewed my liver ducts to my intestine. I am about to call

to set up a CT Scan and I am not going to ignore this. I just got

kind of stunned when I saw the liver enzyme elevation.

I didn't mean to be alarmist...just a honest expression of fear. We

fellow pancreatitis souls tend to be a very tough bunch and I

consider myself tough. Being scared like I was/am is odd. I just

feel like I have been poked, prodded, and cut on a little more than

I care for.

I appreciate the support. I will let everyone know what I find out

from the CT scan.

Thanks!

Bert

> To Bert,

> I read your post. Your story sounds similar to mine. I had a TP in

August, 2000, in Liverpool, UK (no IST). I had been really well

until September this year. Like you, i began experiencing pain. I

went back to the hospital in Liverpool for investigations. My liver

function tests were abnormal, suggesting biliary obstruction. My

consultant thought i had cholangitis, and an endoscopic ultrasound

showed that i did have some pancreatic tissue left. My surgeon

advised further surgery to remove this. I was devastated, and didn't

think i could face any further surgery, but i went through with it.

I had the operation on 11th November and after two weeks in hospital

i am recovering at home. I did wonder at first what i had let myself

in for, undergoing the whole procedure again, but i can see the

point of it now that i am recovering.

> I hope you are reassured by my story - hope it hasn't made you

more anxious. If i can help any further please let me know. Please

discuss your situation with your surgeon. The sooner they find out

what's causing your pain, the sooner it can be sorted out.

> Best of luck.

> Sue.

>

>

>

>

>

> > Message date : Dec 17 2003, 03:56 PM

> > From : bbolin@c...

> > To : pancreatitis

> > Copy to :

> > Subject : I may be having complications

> > Hello all,

> >

> > I want so much to be a success story, after having a total

> > pancreatectomy with auto islet cell transplantation. But right

now

> > it may appear that things are getting complicated.

> >

> > To be honest I am scared. My wife and I have just finished up a

move

> > to a nicer apartment across town. I attribute the hard work of

> > moving things and the stress that is associated with a move to

my

> > recent down-turn but I may just be in denial.

> >

> > I started having some intense pain (but not as bad as acute

> > pancreatitis) and nausea a week ago. I had to go to the ER

because

> > the pain was more than I felt I should tolerate. I felt

embarrassed

> > to be in this situation even though that isn't rational, so I

went

> > to a smaller hospital instead of where I had the TP/ICT. They

did a

> > film, blood work, and gave me a big shot of dilaudid and

phenergan.

> > My film looked okay, although my doctor refused to believe that

I

> > did not have any pancreatitic tissue. He kept telling me that I

must

> > have had a Whipple that no one would remove an entire pancreas

out

> > of a 36 year old male in otherwise good shape. Whatever.

> >

> > Anyhow. My liver panels are not good. my Alk Phos was 1147 and

the

> > reference range is 50-136; um so that is horrible. My AST is

250,

> > and my ALT is 334. Both are supposed to be around 30. I had an

> > appointment to see the surgeon who removed my pancreas but to be

> > honest fear struck and I blew off the appointment. It just

happened

> > to work out that my 6 month follow-up is occurring now while I

am

> > having my liver melt down on me. So my surgeon doesn't know yet

that

> > I am having complications. Those kind of results point to an

> > obstruction of the bile ducts and I am guessing as a result of

scar

> > tissue from the gastric bypass portion of the total panc. My

fear is

> > I will have to undergo an ERCP then an eventual surgery to

resolve

> > this. I do not feel I can physically or emotionally handle

surgery.

> >

> > I had an emotional melt-down last night. I never really had a

major

> > emotional crisis when I was facing pancreatitis and a total

> > pancreatectomy, I guess because I had no clue how difficult the

> > surgery was. But now I know and for the first time in my life I

feel

> > terror. I have been scared before, sure, but never have I felt

> > terror. Well, know I do and frankly it sucks.

> >

> > I told my wife last night that I am sorry that I might not be

able

> > to keep that promise of growing old with her. I guess I am being

> > overly dramatic but right now I am freaked out.

> >

> > Sorry for burdening you all and for being a whimp. But thank you

for

> > listening.

> >

> > Blessed be,

> > Bert

> >

> >

> >

> >

> >

> >

> >

> >

>

>

[Guest guest]

Fliss,

Sue, Shirely, and you jumped right to my rescue and gave me a boost

and I feel a little less scared now. The thing that is interesting

is that they have had such a good string successes at the University

of Cincinnati Medical Center that they gave me numbers of more like

10-15% morbidity. I was the 25th patient so I am guessing they

probably had not yet done enough to have a real statistical

relevance to support there good numbers.

I have done really well up till now. I feel more flu like than the

kind of sick you get with pancreatitis. The pain isn't horrible but

its pain. All in all, knowing what elevated liver enzymes can do to

your mind with a toxin build up in the brain, scared me along with

the fear of having to get cut open again. It may not come to that.

The doctor was reassuring and wants just a CT scan at this point. So

I did over-react. By the way I know you had mentioned that in the UK

best practices means doctors try hard to limit your exposure to

frequent CT scans. You will laugh to know how many I have had in the

past year: 6. Yow. I probably give off a faint glow at night! hehe

Number 7 coming up.

Thank you for your words of encouragement. I hope my reaction will

not cause fear in others like yourself consider a total

pancreatectomy. I hope though to help show a picture of reality that

this surgery, or any surgery does have risks.

Thanks again,

Bert

> Hello Bert,

> I am really sorry you are having this problem and I hope you do

feel

> reassured by Sue's post. You may remember that I have been

> considering a TP at the Liverpool Royal like Sue. At my last

> appointment with the pancreatologist/surgeon, he gave me an

article

> he had just had published in the British Journal of Surgery. It is

a

> study of 19 consecutive total pancreatectomies (no ICT) carried

out

> at the Royal since 1996. You were probably told, as I have been,

> that there is a 20% morbidity rate, ie. 20% have some complication

> or other after a TP. Well,there were complications in about five

> cases, two or three of which were biliary strictures (I haven't

just

> got the article to hand as I'm writing and I can't remember

whether

> it was two or three. They were sorted out though, so PLEASE,

PLEASE

> don't lose heart. You have been so courageous and I'm sure you

WILL

> face another operation, if necessary. See your surgeon as soon as

> possible. I am SO,SO sorry but try to remember that you have your

> strength and youth going for you.

> I had another appointment with my gastroeneterologist this week.

He

> was telling me that I would have to be very sure I wanted the TP

> before going for it because there would certainly be times after

the

> surgery when I would feel very rough, especially if I was one of

> those who had complications and I would want to be in a mental

state

> to tell myself that I was still better than before I had the

> surgery. It would be this thought, he said, that would get me

> through any very hard times after a TP. Bert, you could very well

be

> going through a hard time that you will come through really well.

> I wish you every blessing, Bert. You will be in my prayers.

> Best wishes,

> Fliss

[Guest guest]

Hi Bert,

Thanks for replying; I have been thinking about you a lot. Obviously

I can't say anything definite because I don't understand what is

going on but I hope very sincerely that things will soon be sorted.

The waiting time is going to be hard, I know. You know, what my

gastro said last week keeps coming back to me. He said I need to be

really certain I want the TP because I will often feel bad

afterwards and will not be able to cope psychologically with the

after-effects unless I am totally committed before the surgery. He

said I would need to be able to tell myself afterwards that, however

unwell I felt, it was better than what went before. (He advised me

to wait a few months before deciding.) So, I think you

probably have to remember how bad you felt before, Bert. Reading

your story, as I have done several times, it's obvious just how ill

you were before the TP. Not only have you had major, major invasive

surgery but you are also learning to cope with diabetes. That's a

lot to come to terms with all at once.

I do understand how you feel about your wife but sometimes life is

like that and I'm sure she understands. None of us knows when

illness could strike. I know it's hard because you are young. Whilst

researching the operation for my own case, I have read quite a few

studies of total pancreatectomies in different hospitals, British,

other European and American, in which the docs follow through a

group of patients over a number of years. There are quite often some

sort of complications but they usually seem to get sorted. I'm sure

your case will be the same. Isn't it true, Bert, that acute

pancreatitis is terrible serious and can still be fatal, even today?

You can't get that, at any rate! You no longer live with that fear.

I'll be thinking about you and sending positive and peaceful

thoughts your way. I'm currently being blessed by a pain-free time.

(I don't know why. It could just be chance. After all, I've had

good and bad spells since the age of 5! It could be the Creon or

even the fact that I haven't drunk a drop of alcohol since

March....not that I drank much before anyway. I've been on Creon

since May but the improvement only dates back to mid-October.

Probably, with this treacherous disease, all will change and

suddenly!) Anyway, I shall use some of that extra energy I have at

the moment to send to you, Bert, to help sustain you at a tough

time.

Christmas blessings and very good wishes,

Fliss