pain meds/surgery

[Guest guest]

Hi, I'm new here. My name is Annette and I just turned 28. I

can't tell you what a blessing it was to find this board and PAI. It

seems the general public, and many doctors, are pretty clueless about

CP. It makes such a difference just to know that I'm not alone and

there are people who truly uderstand what it's like.

I had never had a health problem or been in the hospital or ER

until I was 26. Over about a month and a half I lost 20 lbs, I was

throwing up all the time and felt so sick. I went to the clinic a few

times but they didn't come up with anything. Then in July 2003 I had

to be taken by ambulence, screaming in pain. It was acute

pancreatitis and they didn't know why. But they did the usual, IV

fluids/pain meds/NPO until the swelling goes down, then go home and

you'll be fine. Well in the next year I went through that somewhere

between 10-15 times until April 2004 it became chronic.

The only good thing since it's been chronic, is that I haven't

had an acute attack since, but of course I deal with chronic pain

now. My CP is idiopathic and from it I developed diabetes and

psuedocysts (cysts went away on their own). I'm on digestive enzymes,

insulin, glucophage, prevacid, regaln, sennalax, docusate,

multivitamins etc.. For pain they started me on Avinza (24 hour

acting morphine sulfate) 30mg then 60mg. and Percocet for

breakthrough pain. The Avinza didn't help. I am finally on something

that works. I am on 100mcg Duragesic (fentanyl) patch and for the

breakthrough pain percocet or Actiq (fentanyl lollipops) for when I

can't hold down the percocet. I have quite a tolerence now though.

I'm afraid eventually they wont work at all. (i'm on 180 percocet

5/325mg and 30 actiq 200mcg a month + the duragesic 100mcg.) When

I've been hospitalized the morphine doesn't work at all and they gave

me 10mg. They tried Diluidid 6mg and the duiladid pump which helped

about 25%. They also tried Demerol 75mg which had the same reults.

Has anyone else had that problem? Do you know anything that seems to

work. I'm scared I'm going to have an acute attack, which is horrible

pain and nothing will help. I know I'm on a lot of pain meds, but

when I was on lower doses I had a very poor quality of life. I

finally am going to attempt to work again or go back to school and I

have started to leave the house a little more. Nothing big, but at

least I have been able to take my dog for a walk or go to the grocery

store. I hate being trapped here, I've been a workaholic all my life.

Anyhow I recently had an endoscopy (ERCP and EUS) and they

recommended I have a Lateral Pancreaticojejunostomy (Puestow

Procedure). Has anyone here had one? I'm scared of surgery but I

don't want to live with this pain forever. It wont reverse the damage

but it might stop further damage and help with pain. I've tried 4

nerve blocks with little success.

Sorry I've rambled on so much, I just have really needed to talk

to people who understand this, for the past 2 years. I wanted to give

an intro about myself and i'm sure I'll be posting and replying here

a lot:) Thanks for any input anyone has on pain meds or the surgery:)

-Annette