Leanne

[Guest guest]

What kind of feeding tube do you have? I have a peg with 2 ports

its call j-g tube. I give myself feedings into the port for the

jejunim so that it bypasses my pancreas. They put this in for 2

reasons. I was malnourshed and to let the pancreas rest. I have

had it since 2/8, so not that long. Its gets on my nerves as it is

in my stomache; the tube comes out about 12 inches. When I am not

hooked up to the infusion pump I have to tuck it to something or it

will dangle like a funky elephants trunk.

I have been juggled from doc to doc and got 2 totally different

treatment recommendations from each. So I know exactly how

frustrating and scarey this can be. I am 42 married with 3 kids, my

eldest just turned 18 and she leaves for college in the fall, my son

is almost 14, he is possessed has mutiple personalities and they are

all deamons too, he is at Granny Land today, so it has been very

peaceful around here. My baby girl is 8 and very sweet and prissy.

It is very difficult to feel myself getting sicker and seeing my

children worry for me. I dont know what to tell them because I dont

know myself.

So yes, this is an extrememly frustrating condition. There is not

one easy answer for anybody. Some days I can manage, some days I am

filled with the love around me, some days I am dazed and confused,

and some days I am just so sad. Then I try to focus on my silver

linings, they are not always easy to see but they are there if I

look hard enough. There are always silver linings.

This is a wonderful group of people and you will be so surprised by

all the support and kindness you will receive from the loving and

knowedgeable people on this board. I have said this many times, but

one of the best things I have ever done was to have they great good

fortune to have met the people on this board. Their help has been

inmeasureable.

Warmly,