HELP!! - Mom Battling Pancreatitis for 3 Months+

[Guest guest]

Please pardon my exhaustive detail below, but I've got to get some

answers and/or help.

Summary:

My mom has been battling a bout with severe acute pancreatitis (her

first episode) for 3+ months. She has been in and out of the

hospital/ICU, has had drains to drain a phlegmon/pseudocyst, and a

surgery to remove the phlegmon and dead pancreas tissue. She still

CANNOT eat, gags and throws up all the time, and doesn't have enough

energy to sit up in a chair.

Detail:

My mom started having a pancreatitis attack at the end of February of

this year. No cause could be found with CT scans. Around the 4th

day of her episode, the docs did an ERCP and couldn't find a definite

problem, but thought she might have Pancreas Divisum. They presented

this to us like it was somewhat good news (i.e. not cancer, etc.).

She started to show some improvement over the next few days, but

started to rapidly deteriorate and was soon put into the ICU.

She was in the ICU for about a week with fluid in the lungs, abdomen,

etc. Docs said her body was now reacting to the initial pancreatitis

attack (the elevated 'pancreatic juice' levels that had spilled into

her abdomen, etc.). She got out of the ICU, spent another week or so

in a regular room, and then was released (to my dismay - because she

still seemed horribly sick to me).

We took her home and she continued to deteriorate. Generally she

felt and looked horrible. She couldn't eat anything, gagged all the

time, was too weak to move around or exercise, and had high fevers

(up to 103). So in about two weeks, she was back in the hospital

because she had deteriorated too much. At that point they detected

that she had a phlegmon and/or a pseudocyst. They put in drains and

tried to drain it for about 4 or 5 weeks. She was in the hospital

this time for a couple of weeks and then they let her go home (with

the drains in).

She continued to deteriorate at home, and the drains ultimately

didn't work. So, about three weeks ago the doc decided to do surgery

to remove the phlegmon and cut off the dead parts of the pancreas.

That went successful according to the doc and they finally pulled

that drain out a few days ago. The doc said she had minimal dead

pancreas and that it was in good shape although it was still

hard/inflamed. She also had a few more drains put in in the last

couple of weeks to drain some other 'pockets' that the docs

detected. Those drains have been removed as well, and the docs seem

to be telling us that she is doing better now.

The problem is that she still can't eat anything. By this I mean she

has NO desire to eat even though she knows she'll die if she

doesn't. Also, she gets sick and gags/throws up a lot, especially

when she tries to move around. So, she actually despises trying to

eat because she is afraid that she will get sick.

So, at this point she lays in a recliner pretty much 24/7 and really

doesn't do anything at all. She is so incredibly weak. We took her

to the doc again yesterday, and he basically told her to drink at

least 4 cans of Ensure Plus a day to get her minimum calories. He

said if she doesn't start doing this by Monday, he'll put a feeding

tube into her.

We're all so incredibly frustrated with how this is progressing. We

don't know what to expect. We don't know if her doctors are taking

the correct steps to make her better. They are NOT pancreatic

specialists, but have great reputations (as 'regular' docs and GI

surgeons). Our fear is that she has something else going on like

cancer or is still suffering from pancreatitis. I really don't know

when pancreatitis stops (if ever). It seems so mysterious and no one

can give us any good definitive answers.

So, I don't know if my mom at this point is still sick from

pancreatits or has something else going on. Or, is she more like

someone with an eating disorder who can't stand food anymore and

throws up when she tries to eat. My mom is not herself, that I do

know. She seems to be so emotionally 'disconnected' at this point.

I fear that she is horribly depressed and the docs aren't noticing

this.

We just don't know what to do. Should we take her to a specialist?

If so, how do we find the right team? (we're NW of Atlanta, GA) Is

her progression normal for someone with Severe Acute Pancreatitis?

Any comments would be welcome.

Thanks!