Thanks Heidi and some ??

[Guest guest]

Heidi,

Thanks for your reply. Now that the meds from the hospital are out

of my system I am feeling better. The pain from the procedure is

less each day and I am getting about a bit better also. I am just

so surprised at how hard it has been but I guess anytime they cut

your abdomin it is rather sore. I am still having to use the

phengran routinely though. I put it in the tube. Yesterday I was

feeling better and decided to try without it and almost started

vomiting again so took it and laid down for the night.

The tube feeding is going slowly I am only at 40ml/hr right now and

need to get up to 65ml/hr @ 24 hrs or 135ml/hr overnight. I was up

a bit more but when I got sick last night had to back it off. There

is a little drainage around the tube site but I am told that is

normal the home health nurse brought me some gauze pads last night

and said it looks great. They said there were stitches that will

need to be taken out next week but I do not see any. They would not

be on the inside and have to be taken out with a scope would they?

I am supposed to be getting one of the portable pump sets Wed. I am

anxious to see how that works.

Next Thursday when I go back down to the U to see the doc I will

hopefully be able to get soem more definite answers as to what we

are dealing with. He did tell me I do have the gastroparesis - slow

emptying of my tummy - and that will not get better. When I asked

him abot chronic CP and gave him a condensed history he said he

could not give a DX of CP yet. When I asked how he would know he

explained the scarring on the pancreas which none of the tests - CT

scan,special MRI... showed any. Then asked him about the SOD and

the stenting of the panc duct and he said that could be indicitave

of CP the stricture or " scaring " of the duct could be from CP. Does

that make sense to any of you? He left me confused again. I was

upset with the confirmation of the gastroparesis as I had been under

the impression that that most likely was caused by the SOD and panc

duct strictures so I wasn't up to getting into the discussion any

further. They left me alone for a few minutes after our discussion

and the beginning of the procedure to place the tube and I started

to cry of course when they came back in I tried to hide it and get

tough again and they thought I was upset because I was nervous about

the procedure. I have had so many procedures/surgeries I do not get

upset or nervous about them anymore it is like routine and at least

I get to sleep real good for awhile. lol I just want to know WHY,

What has caused all this, I want to know the name of the enemy I am

fighting so I can focus on the right fight. Does that make any

sense. Well again this was long and I am not sure I even got to any

point sorry.

[Guest guest]

,

Yes, it's perfectly understandable that you would want to know

precisely what you have and what diagnostic " label " the doctor

attaches to it! It's just our nature to want to know what we're

dealing with, in a medical sense, and how to treat and cope with it.

I'd have to agree with you that the doctor's explanation was

confusing, I'm as confused by it as you are. Gastroparisis is one

thing, and although you may have that as he said you do, that still

doesn't explain all the rest. There have been several people I've

heard of that have CP who also have gastroparisis, yet they are two

entirely different problems, with different treatment for each.

It's unfortunate that you weren't able to get a more definitive dx.

concerning your CP-like symptoms. Hopefully by Thursday the doctor

will have been able to review all the records and his findings, and

present you with a more conclusive answer. If not, keep your chin up,

and keep aiming in the right direction toward getting a confirmed

diagnosis. It will happen, sometimes it just takes a lot of patience

and perseverence, and the right doctor and the right tests, to make it

work.

Please let us know what you learn on Thursday. Meantime, try to chill

out and not get stressed by something you can't change.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Rep

Pancreatitis Association, International

Note: All comments or advice are personal opinion only, and should not

be substituted for professional medical consultation.