To Bert

[Guest guest]

I dont know you very well and perhaps it is none of my business yet

irregardless I am sticking my nose in. I am guessing that you and

your wife had two totally different expectations of you vacation.

Even though she was next to you the entire time during your illness

and recouperation she can not truly feel what you feel no matter how

well you try to verbalize it. Also; she has been with you; I am

assuming; through out your illness, diagnosis and recouperation; and

no matter how well she verbalizes it you can not truly feel what she

feels. The two of ya'll have been through a very traumatic time in

your lives and you both are going to go through; and have gone

through, a litenany of emotions. You both may very well be

experiencing some post tramautic stress(syndrome) and it will take a

great deal of time and patience of both of ya'll to recover. The

two of ya'll need to be able to communicate openly with one and

other about how you feel in every regard of your relationship.

Please don't forget, Bert, that being the care giver is equally as

painful as being the patient; just the caregiver's pain is not so

easily seen.

Warmly;

[Guest guest]

Bert,

Thanks for replying to my email. I saw in your message to Fliss that you

mentioned you were suffering from flu type symptoms and pain, and that your

liver enzymes were raised. I had the same symptoms back in September. My

consultant diagnosed cholangitis. This can be treated with antibiotics. I had

investigations to confirm the diagnosis, and it was then that they found this

piece of pancreas, which i had to have removed.

Hope you get your scan soon.

Best wishes.

Sue.

> Message date : Dec 17 2003, 08:58 PM

> From : bbolin@...

> To : pancreatitis

> Copy to :

> Subject : Re: To Bert

> 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,

Thank you so much for your support. I appreciate the energy, I take

that seriously and I ask that you not give more than you can safely.

You may decide a TP is the right thing for you and you will need

your reserves. Or you may decide not to have a TP and still need

reserves because life throws us curve balls.

I have decided that this constant nagging pain is pulling me down

more than I am willing to face without assistance. I have just

called my PCP and they are writing me a script for duragesic patches

so that I can have a continual level of pain relief. It is a step

backwards because I remember well the day I had gone about a week

without a patch and was elated that I made that step. But I am not

at a point where I can gauge my own pain effectively and

rationally...if I use PRN pain relief I will overmedicate because my

tolerance is lower than normal. Again may be the liver enzymes or a

slightly broken spirit but I have to admit as I approached my TP I

started overmedicating occassionally. Time on continual mediciation

will bring the addict out of you if you have it in you, and I know I

do. Luckily I accept this about myself which is prevented me from

losing myself in medication. Heh or maybe...because here I am asking

for fentanyl.

Yes, totally. Acute pancreatitis is a killer and I took 15 shots

from it. I could never be sure if the 16th would be the one that

would have been fatal and that is why I took my chances with a TP. I

do not regret that part but I will be very upset if my liver starts

to fail. That can be such a horrible way to go especially if it

takes your wits before your body. I am troubled deep down having

faced what we all here face and I know if I developed dementia I

would be a terrible person to care for. (and to all of you out there

considering a total pancreatectomy do not fear, liver failure is not

a normal result, I have often had slightly elevated liver panels so

my weakness was probably there all along)

I always manage to write 3 pages when all I really meant to say

is " thank you " and to wish you well.

Blessed Be,

Bert