Feeding tubes?

[Guest guest]

Dear Friends,

This truly was such a surprise. I had been doing so well that my

husband and I didn't even think twice about going on a trip. My

scans in September were so good, with the pseudocysts

resolving quickly, that no one considered any kind of set back

this serious. My doctor knew we were going, and wished us

well.

I cannot tell you how frightening it was to find myself in that

horrible acute attack pain, pain that has gone beyond the point

of control, even by doubling up on my meds. Almost all of you

know what I'm talking about, since you've been there a time or

two or more. I've really not even had that much exposure to the

acute attacks, just a couple times, and even they were less

severe than what I laid on my bed writhing with on Sunday. I

thought I was going to die and wanted to, to get a break from the

pain.

Fortunately, my GI recognizes the need to attack the pain first,

and get the patient under control and comfortable. He told my

husband that that was his first objective, to rid me of the pain.

And he told him how severe it was, that neither of them (he and

my husband) would never fully understand how debilitating and

threatening it was to be in pancreatitis pain, just that it was one

of the three worst pains in the world. I thought of all of you that

have come home from a trip to the ER, or to your doctor, with

inadequate pain relief, or after being told it was " all in your

heads " , or remaining in pain with the doctor telling you that was

all he could do, you'd just have to life with it. And then I realized

how fortunate I am to have found this doctor. If I could have, I

would have bent over and kissed his feet for understanding how

much I hurt.

The surgeon and GI discussed my case and the plan now is to

treat me with medication and pancreas rest. The pseudocyst is

too inflamed to tamper with, and is located too far from where it

needs to be for drainage. There is a slight possibility that a

roux-en-Y could be done at a later date, but the pancreatic

surgeon seemed skeptical of even that. If that would be

considered, I wouldn't have it done here, I would get on the road

and head up to MUSC.

So tomorrow they are inserting a feeding tube. I don't know

where or what kind. I'll check in the archives for any advice or

comments you may have about TPN. The doctor hopes to only

have it used for a few days, and will not let me go home with it,

due to the complications that could set in with infections, etc. So

I will be in the hospital through the upcoming week, too. Yuck!!

I'm not sure how they handle being on TPN with type 1 diabetes?

That sounds like it could be a real hassle. I've called my Endo

back in South Carolina and hope he can be involved with this,

too.

Well, that's the news for now. You're the first to hear about it, my

husband had to leave today before the doctor was able to bet

here. I imagine I'll be on the computer quite a bit more in these

next few days since there isn't much else to do!

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

[Guest guest]

Heidi,

Just a quick note to you re: feeding tubes: Are you sure that they

are going to do this? With pancreas rest, they usually try to avoid

putting anything into your GI tract. Most of the time TPN is through

an IV. Mine was through a central line, because your arm / hand

veins are too small to handle the bulk. Also, they can give you

insulin along with the TPN, that is what they did for me to make

sure that the blood sugar level stayed normal (but I am not a

diabetic so it may be lots more complicated with you - sorry). I

was only on it for a little over a week though, so maybe in your

case it will be different.

I really wish you well, and am happy that you have such a great

doctor that understands the pain issues. I wonder what the other

two great pains are that he referred to? Cancer maybe on,

pancreatic the other and the third - maybe third degree burns?

Curious. And it is even more awful, like you said, that doctors can

recognize the severity of pancreatic pain, and yet, still be

indifferent to the point of saying " it is all in your head " , or " learn to

live with it " .

Good Luck, I hope you are feeling well really soon.

Laurie