For Laurie......pain meds

[Guest guest]

Dear Laurie

The opioid based pain meds can make sphincter of Oddi dysfunction

worse. It can actually make the spasms come on by raising those

pressures in the sphincter. But, because the pain is so bad, there

has to be something to get some relief if only for a little while.

Over a period of time and after multiple hopsitalizations and trips

three times a week to the emergency room, my doctor decided to give

me injectable pain meds at home. I take Buprenex and Phenergan. At

the time we started this, I had a PICC line or a port or a Broviac,

whatever happened to be the case at the time. I have had 16central

lines in all (12 PICC lines, 3Broviacs and a port-a-cath) Because of

complications and damage to my great veins, (the big ones they put

these lines in), I have no place even left for a central line which

in itself can be very dangerous. My doc just said it was pointless

to send me to hte ER for two pain shots and all that waiting and

changes of picking up an infeciton in my line (I have been septic

four times and almost died the last time in November of 2000), so

the point was to keep me as far away from the hopsital as I possible

can.

Now that I don't have a central line, the meds I have can be

injected in the hip. I am also allergic to Dilaudid, Morphine, the

fentanyl patch and have to be very careful with Demerol because the

last time I had it, it built up int he system and caused petit mal

seizures.

Again on the pain meds, that sphincter of Oddi pain that would come

on so sudden, as you know, is a horrific pain. I have had kids, I

would rather give birth than this. I had ot have something to take

the " edge " off that " pain from the sky " as I call it. Now if I have

pain from a regular pancreatitis attack, this stuff does not work.

I have to get to the hospital. It really is a big hassle because I

have no veins and an IV only lasts about less than 24 hours on me if

they can get one at all. My veins were bad before I got this stuff

and this just is the " frosting on the cake " so to speak.

I will tell you though that my family doctor died and my new doc

would not write prescriptions for these IM drugs. But, I was

fortunate enough to find a pain management specialist that at the

time was new to the area and willing to write those prescriptions

adn still does.

I do not use the stuff often, once or twice a month at the most as I

don't have SOD pain that much. These docs telling you they can do

nothing is a crock. If you are in that much pain from the SOD and

go to the ER in that pain, they have to give you pain meds. If they

don't, they are going against the Joint Commission on Accreditation

of Hospitals pain management practice and can get into serious

trouble if reported.

I also took Oxycontin for awhile and it did no good. I do not need

pain meds in my system all the time like most folks, I just need

something to cut the " pain from the sky " so as not to have to have a

ride in the back of an ambulance!

The trick at all costs in time and effort is to get that sphincter

fixed. The damage to the pancreas cannot be fixed but the sphincter

can if hte right person does it. Just think of it as a straw you

can't suck stuff through. The straw is long and can have several

different places that are strictured that might not show up all at

once and you gotta keep trying! I will tell you that you have to be

assertive (very assertive) with these docs. They usually will keep

trying if you are willing to keep trying but if you say nothing and

are miserable they assume you don't want anything else done and they

will not suggest therapy.

Well, I feel I have rattled on and I am wondreing if any of this

makes sense. Also, please excuse my typos, I have not been

correcting them. Sorry.

Take care and if I can help, just ask!

Kaye

- In pancreatitis , " goutbuster " <goutbuster@y...>

wrote:

> I just read your story on Mark Armstrongs website and I was very

> interested in learning that you have medication that you can take

> when you have the attacks. I was under the impression that there

> is nothing that can be done about it once it starts and I just

pace

> it off for the few hours and try to vomit to get some relief (I

get

> these attacks about once a month or so - exactly as you describe

> them, sudden onset but a gradual decline with residual

> soreness for the next few days and absolutely no appetite). The

> pain is unbearable but I have never gone to the ER because I

> was told that there is nothing that they can do for me. I usually

> have my blood drawn the next day, if it is a work day, to

objectively

> document the occurence, but the liver enzymes only are elevated

> - No pancreatic ones (do they take more time to be affected?).

> Can you tell me what meds are helping you and how you use

> them once an attack starts? I usually go easy on the oxycodone

> as my doc implied that it could make the spasm worse, but once

> this month it did head one off only for it to return 2 hours later

> worse than I ever experienced before. Can you advise me on

> this? I aks because I am suppose to be contacted by our pain

> clinic soon (I was referred about 2 months ago now, so they

> should be about to get me on their schedule any day now, I

> hope) and I would like to know what meds I should be asking for

> (they seem to ask what you want as opposed to offering

> suggestions, kinda weird, I know).

>

> Thanks

>

> Sorry for monopolizing your time and the board space these last

> few days but I finally feel like I am getting answers that apply

to

> my situation.

>

> Laurie