SOD and pain help

[Guest guest]

Evening all,

Hate to write and bother you all but I have been having an SOD attack most

nearly every night (the worst time) or day for 2 weeks now. And naturally

after that pain starts the pancreas pain usually kicks in. Not always but most

times.

I usually take a darvocet to help with the pain and if in 30-45 minutes I have

no relief I take another. Last night was bad. Ended up taking 3 in 2 hours

before I got the pain under control. Does anyone know how soon after I take a

darvocet that I can take a percocet if the darvocet doesn't work? My doctor said

I could mix the 2 but have forgotten the time range in there. I don't really

want to start out taking the percocet, but maybe I should.

I try hard to stay away from the percocet because it wires me so bad, but I have

done all the hurting from this I can stand right now and I just want to be out

of pain as quick as possible. I see about the nitro but that scares me to ask a

doctor. I was given Levison but that never worked for me.Besides if I did ask my

specialist, he would just tell me to have more surgery and thats not really on

my agenda for the time being.

Thanks,

Sandy in Ca

[Guest guest]

Hi Sandy,

I am not sure what your doctor advised about taking the darvocet

and percocet but what I was told is that it takes about 45 -60

minutes for the meds to get absorbed into your system

(depending on if you have food in your tummy and other factors).

So, as a guess, I would think that if you do not feel some relief in

that time you could take the percocet next. But the thing that you

have to be very careful of is the amount of tylenol that is in both

the darvocet and percocet. You do not want to go more than 4

gms of tylenol a day. So make sure you know how much is in

each pill (usually 250 or 500 milligrams although some

darvocets will have 750 milligrams APAP).

While I cannot advise you whether you should go straight to the

percocets and skip the darvocets, I can say that percs are a

stronger narcotic; but this depends on individual differences too.

In my case, darvocets do nothing for pain and oxycodone will

slightly touch the colic pain from an intense SO spasming attack.

When I get a full blown colic attack - NOTHING will touch the

pain. The only thing to do is pace it out, vomit if possible and

once the peak subsides to then start addressing the pain from

the effects (usually when I have a full blown attack, I get transient

liver damage as seen by my LFTs and I would assume

pancreas problems too).

The nitro intrigues me and I am thinking that it may be worth a try

for me, although I admit the headache part kinda scares me. I

also have my curiousity piqued by several references that I ran

into yesterday (while I was researching the small duct disease

issue) that a high percentage of patients with SOD also have

gastroparesis and that this can also generate significant pain. It

seems that there are many, many mechanisms for pain

production going on...more than the speculation of nerves, high

pressure in the ducts, spasming, etc. Maybe a person needs to

have the pain meds, the nitro, the meds to get the stomach

muscles to contract, etc. A whole pharmacy-load of meds I

guess.

Laurie

[Guest guest]

But the thing that you have to be very careful of is the

amount of tylenol that is in both the darvocet and percocet. You do

not want to go more than 4 gms of tylenol a day. So make sure you

know how much is in each pill (usually 250 or 500 milligrams although

some darvocets will have 750 milligrams APAP).

>

------------------------------------------------------

Hi Sandy, Laurie is right. You have to be very careful taking

tylenol as too much can be liver toxic. I just want to clarify what

Laurie had said. You should not take any more then 4grams; 4000

milligrams; of tylenol a day and that should only be taken for 2

weeks. If tylenol is taken long term then it should not exceed

2.6grams or 2600 milligrams daily.

There has been some speculation that cp can lead to liver problems

down the road. Many of us have noticed that our liver enzymes will

be elevated when we have an attack. I was told it was just

speculation and I dont know of any study that will back that up. You

certainly dont need to add tylenol toxicity to the mix. I would

suggest you discuss with you physician taking a pain medication that

did not have tylenol included and then you could take the tylenol

when you feel you need it.

I do hope you feel better soon and if there is anything I can help

with please let me know.

Waarmly,

[Guest guest]

Thanks for the replies. Heres the story on my doctors. My specialist says that

pain medications are NEVER necessary, including enzymes, because surgery can fix

everything!

I saw another specialist who said that while there was once something wrong with

me, I " have been cured and to eat drink and be merry! " This was after a CT scan

he ordered that showed nothing, (most of us know how that goes). He didn't care

about the diagnosis or surgeries I previously had at Stanford or UCSF a few

months prior.

And my primary doctor who actually prescribes me meds and believes my diagnosis

of moderate-severe CP and SOD told me that if I need something stronger than

percocet I just need to " suck up the pain cause there isn't anything better or

stronger to prescribe " .

I am scared to go back to UCSF cause I don't want surgery and that doctor told

me " it's my way or the highway, I don't negotiate on treatment " so I get NO

INPUT on my healthcare. The doctor in Oakland says I was " cured " and said if I

needed him to come back but that he didn't think that would be necessary (I

didn't know CP could be cured) and my primary won't give me anything else. So

whats a person to do. Thats why iIasked. Thanks all...

Sandy in Ca

I would

suggest you discuss with you physician taking a pain medication that

did not have tylenol included and then you could take the tylenol

when you feel you need it.

I do hope you feel better soon and if there is anything I can help

with please let me know.

Waarmly,

[Guest guest]

Percocet is oxycodone with tylenol. I had forgotten about that and

Laurie reminded me. I dont see why your primary cant just write for

the oxycodone. But then again I dont understznd why these docs do alot

of the stuff they do. It cant hurt to ask and to remind her that you

are concerned about taking too much tylenol for too long a time.

What kind of surgery did your doctor suggest? Just curious really. If

you had already written it and I missed it I'm sorry, my kids have been

running around the house like a bunch of crazy people...LOL Your GI

sounds like a DINK. The only cure for cp it to remove the organ. Are

there any more GI's in your area?

I hope you feel better soon.

[Guest guest]

,

I have had multiple ERCp's and sphincteronomys. My specialist says thats the

only thing to help, unless I want the head of my pancreas removed. I have opted

for neither right now. I see progressive stenting as something that doesn't

make alot of sense since I don't always get alot of releif from it. Why would

you repeatedly put a stent somewhere in hopes that it will scar in an open

position only to have to go back in and remove that scar tissue when it builds

to much and blocks again because of repeated stenting??!! And since a stent

can't stay in the body for more than 2 weeks unless you are a cancer victum, he

is telling me I have to have ERCp's every 2 weeks for a year or more. DUH! I

do have a child, husband a some sort of life!

The meds I have are tyco 3, I rarely take, darvocet 650 and percocet 5/325. I

haven't found a GI that I like yet except for the GI at Stanford Univercity. He

diagnosed me before seeing me....from hospital records, ct scans, mri's and

blood tests, things like that. He liked enzyme pills. But Stanford is out of

network so I can see independant GI guy who thinks CP can be cured in Oakland,

or go to the Surgery can fix anything guy at UCSF. He thinks you can OD on

enzymes and really doesn't think they help because surgery can fix everything.

I am more concerned with the SOD pain as of late more than anything else. I

just couldn't remember the time frame of mixing the 2 pills and my pharmacist

who I trust completly is on maternity leave. And I have discussed with her

oxycodone and she recommends against it as it is such a strong drug that she'd

" hate to see me have to take it. " As I write that I kinda skoffed (sp). I

surely can't be the only person in FairField with CP and SOD but no one really

seems to understand pain control for it.

Thanks for your replies,

Sandy in Ca

-------------- Original message --------------

Percocet is oxycodone with tylenol. I had forgotten about that and

Laurie reminded me. I dont see why your primary cant just write for

the oxycodone. But then again I dont understznd why these docs do alot

of the stuff they do.

[Guest guest]

I can't remember what you wrote in your other post, Sandy, but

didn't you say that you were taking percocets? If so, then you are

already taking oxycodone because that is what percocets are.

Oxycodone with tylenol. I think that was just suggesting

that you ask your doctor for oxycodone without the tylenol in it so

you can take more of them as you need them without worrying

about damaging your liver. I was switched from percocets to

oxycodone as soon as it became apparent that I would be on

narcotics for the rest of my life (and I have elevated LFTs so we

didn't want to worsen that either). I am wondering you are

confusing oxycodone with oxycontin? Again these are the exact

same narcotic just that oxycontin is formulated so it is released

slowly over time whereas the oxycodone capsule or tablet is the

pure drug for immediate release into your blood stream.

As far as your surgical " options " - they don't seem to be much of

an option to me. I am also surprised that your endoscopist

insists that the stents be removed at 2 weeks. Most

endoscopists are comfortable leaving them in for 6 to 8 weeks

and some go even longer (although the clog rate after 8 weeks

is relatively high). Some even go by leaving them in until the

become clogged - at times more than 12 weeks! (although most

centers do not recommend this aproach - too risky for infection).

It seems that there has to be more options available to us. I am

seriously thinking of looking into the nitro thing. ANYTHING

simple like that which may work, I am willing to give it a try. Now

to just find a doctor who will let me........

Laurie

[Guest guest]

Sandy,

First off, stents can stay in the body alot longer than 2 weeks. In

fact, I will probably be getting semi-permanent stents in about 2

weeks from now. I've had 3 sphincterotomies now, and STILL have SOD

attacks. My Gi says that we will probably try progressive stenting.

He will try to put in two stents and then I will go back a year later

and have them removed. Of course, that is if everything goes well and

my body tolerates the stents. I'm so sorry you have a doctor that

doesn't understand Cp and SOD. I know exactly how you feel! I've

been there done that (so to speak). You may want to consider

traveling alittle farther to see a good GI. I'm sure someone here can

recommend one. Maybe Kimber from california?? I sure hope that you

can find a knowledgeable doctor soon.

Take care

Kris in TN

[Guest guest]

Laurie,

No I am not confusing the 2 meds. I know the difference. One is MUCH stronger

than the other. My PCP just won't do other than the percocet period. Geez, my

dies from cancer and I know she was on percocet 10's and I have 5's. So for my

PCP to suggest that the 5's I am on are the strongest med available for

prescription is ludicris.

As far as my specialist, he is the head at UCSF and he said that unless you have

cancer, a stent can never stay in the body longer than 2 weeks at any given

time. Even the guy in Oakland agreed with the 2 weeks time period for stenting.

So whats a person to do?! As far as others on the board talking of stenting I

am always surprised to hear that they can keep the stent in longer than 2 weeks.

My husband and I specifically asked (the one time he was allowed in the exam

room) why they couldn't be left in longer if they are supposed to be a good

thing and thats what we were told.

Thanks for the reply. And your right, I don't have many options do I? My choice

though, I suppose. I have seen 3 specialists and 1 PCP and 3 concur on

diagnosis. But the one specialist I trust and am most comfortable with is out of

network. I think part of the reason I do not like my current specialist is

because he won't allow anyone in the room with me during exams, he doesn't allow

my paper with my questions on it and won't allow a tape recorder, and I NEVER

see him before or even after surgery. Not even during hospital stays. He's much

to busy to be bothered with that. He always sends his Fellows to do the checking

up on people. I guess I need a little TLC or hand holding or something from

someone that wants to be so involved in my health care. I have always felt I was

nothing more than a statistic in his life of medicine. Maybe that's wrong on my

part. I shouldn't expect so much from a Doctor.

Sandy in Ca

I am wondering you are

confusing oxycodone with oxycontin? Again these are the exact

same narcotic just that oxycontin is formulated so it is released

slowly over time whereas the oxycodone capsule or tablet is the

pure drug for immediate release into your blood stream.

[Guest guest]

Thanks Kris for replying.

As I posted later after this, my GI is head at UCSF which is more than an hour

away. I was at Stanford which is out of network and 2 hours away, and I am not

allowed to go there anymore. Of course that's my preference for doctors

unfortunately. I have just about run out of specialists in my HMO coverage

area. I see regualr GI's now who tell me they can't help me because my CP and

SOD is far more than they can handle or have knowledge to handle. Maybe some

wonderful pancreatologist will move into my network one day and life will be

good! :-)

I have spoke with Kimber for refferels and have done all the looking into this I

can. I even have a case manager who is more my friend than just a case manager

and I saw the guy in Oakland at her insistence. That was a mistake and we both

know as far as knowledgable GI's go for CP in my coverage area, I have about run

out of options unless I move. But thanks for your suggestion and caring.

Sandy in Ca

I'm so sorry you have a doctor that

doesn't understand Cp and SOD. I know exactly how you feel! I've

been there done that (so to speak). You may want to consider

traveling alittle farther to see a good GI. I'm sure someone here can

recommend one. Maybe Kimber from california?? I sure hope that you

can find a knowledgeable doctor soon.

Take care

Kris in TN