I may be having complications

[Guest guest]

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]

Shirley,

I am sorry that you have the stomach issues you have. I love to eat

and although it is different than the problems you are having, my

acute pancreatitis attacks snowballed and I ended up living off of

Ensure for a month or so and that is ultimately why I underwent a

TP/ICT. I cannot imagine the path you must walk. You inspire me with

your strength.

I will face what I have to face because in the end there is nothing

one can really do but walk their path. But, yes, I did get very

spooked. The pain is not so bad but the fear of say a liver

transplant is great. You are correct of course, I am getting ahead

of myself. I emailed my surgeon, he has already responded and said

it is likely a bile stasis problem and not to get freaked out

because he has successfully helped others that have had this. It

doesn't generally happen with a TP/ICT and is more common with a

Whipple. At any rate, I will be having a nice easy test to start off

with: a CT and it may not require surgery to resolve.

I understand your assertion that a TP/ICT is a good procedure when

carefully matched with a patient. I agree. I am not in intractable

pain, and I have benefited from the surgery more than not. I am

certainly not trying to scare anyone considering the procedure but I

do think it is good to share the whole story. I debated not posting

for the very reason of not wanting to scare others...

I am calming down and I am about to call the nurse now to schedule

the CT.

Thank you for your words of encouragement. They do help.

Love,

Bert

> Hi Bert, sorry you are having complications. I know how you feel

about the

> having another surgery. I had five major surgeries and all to my

bowels and

> female organs. The thought of having to go through another

surgery does a

> terrible number on me also. I don't believe that if you have to

have another

> surgery it will in any way compare to the surgery you have already

been through.

> Try not to compare another surgery to the pancreatectomy. We know

that was a

> big surgery and it is very unlikely that you will have another

surgery near

> that extensive.

>

> I am having health problems also but not due to the

pancreatectomy. In fact

> I am so thankful that I had the pancreatectomy and islet cell

transplant for

> those who have not had it and are considering having it done. My

problem is my

> own fault. I had my pancreatectomy December 2000 and was able to

eat

> wonderfully up until November 2002. After starving for six years

when I had

> pancreatitis, one day I decided to be very stupid and eat until I

couldn't eat another

> bite. I am not exaggerating about how much I ate at one time. I

ate my

> dinner and decided I am not going to stop eating. After dinner I

continued to eat

> without stopping the entire evening. Finally around ten in the

evening I

> developed very bad pain in my stomach. From that moment on I

haven't been able

> to eat very much at a meal. Now I have to eat about nine small

meals a day and

> that means take insulin nine times a day. Sometimes I eat a

little too much

> and then I cannot eat for weeks until I rest my stomach and let it

heal. Then

> after fasting for a while I have to gradually incorporate food a

little at a

> time. I start with two tablespoons of Glucerna and the next day

increase it

> and so on until I can start eating solids again. But I can never

eat until I

> am content and full. I always have to stop eating before I have

had enough

> food to give me strength. I am thin and even though at times I am

able to eat

> solids every two hours I cannot get my weight up to the place it

needs to be.

> The doctor said that when I ate so much I damaged the nerves in my

stomach. As

> you know Bert I didn't have my stomach operated on when I had my

> pancreatectomy. I believe since I have had so many major

surgeries to my digestive system

> and since I didn't eat for so many years my stomach just couldn't

deal with

> all of the food I ate in one evening. Before my crazy eating I

didn't have any

> adverse effects from my pancreatectomy. I have asked other people

who have

> had the pancreatectomy if they have the stomach problem that I

have and they

> haven't. Two of them have pain but their pain is due to having

the Whipple

> which failed to help them and then they had to have the

pancreatectomy. Having

> the Whipple or any pancreas surgery before having the

pancreatectomy puts one at

> a risk of continued pain after the pancreatectomy. But the pain

isn't bad

> like pancreas pain. I don't have any pain from my pancreas due to

the surgery.

> I am so thankful I had my pancreas removed. I never regret it.

The thought

> of regrets never enters my mind. BUT I do have regrets of being

mentally

> affected from starving for so long which would cause me to go

berserk and eat too

> much. Before I ate too much and after my pancreatectomy I was

completely

> cured. Now I am weak and frail most of the time. My life is

filled with stress

> from being aware of not taking too many bites of food and chewing

each bite

> many times.

>

> I hope your problem is resolved soon Bert without a lot of

invasion to your

> body. You have been through the big one and I know that if you

have another

> surgery it will seem much less of a surgery for you. But who

knows, you might

> not need a surgery. Try to take one day at a time and think

positive thoughts.

> With you being young you have everything working for you. I am

61 and my

> body doesn't bounce back anymore. Please let us know how you are

and what the

> doctor has to say about you. I hope you are on the road to

feeling well again

> soon. Love, Shirley

>

>

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