Re: My stage of cp to Patty

[Guest guest]

Dear Patty,

It's just my personal opinion, but I truly do feel that you have other options.

Firstly, the pain medication that you are on right now is not that

extreme....you

didn't say how often you take the Oxycontin, and the Lortab 7.5 meds aren't

the strongest, either. There are things there that could be tweaked. If you

find

yourself having to take too many BT meds, that indicates that the long acting

med, (Oxycontin), isn't doing it's job. And there are other fast acting

analgesics available that might work better for you. These are all the kinds of

things you explore with a good pain management doctor.

I tried Oxycontin 20, twice a day, with Oxycontin IR for breakthrough. After a

three week trial, I told my PM doctor that it wasn't working that well, and we

changed out to a different med regimen. He put me back on a Duragesic

Patch, which I had used successfully before until my last attack. With an

increase in dosage on the duragesic up to 75 mgs. and a different

breakthrough med of Oxycodone, 10 mgs., I was fit as a fiddle. He also put

me on Neurontin, which is not a narcotic, but is a medication that

practictioner's are finding beneficial for many different medical problems.

Even though the research stated that it had caused a very small percentage of

cases of pancreatitis,(as many of our medications do), I was game to try it. It

did not cause me any problems with my pancreas at all, it's only side effect for

me, initially, was sedation. For the first few months it caused me to fall

asleep

all the time, in the middle of the day, right before dinner, etc.,.....I even

fell

asleep in the middle of a conversation once! Gradually, that sleepy feeling

disappeared and we moved forward by increasing the dosage again. Over

the months my Neurontin dosage has been gradually increased, and with this

increase has come less usage of the breakthrough meds. Now I even feel I

can cut back my duragesic to 50 mgs., and we're trying that.

I'm not saying that this is what I recommend for you, all I'm trying to explain

that if you have a really innovative pain management doctor that's kept up

with current changes in his field, he should be able to introduce different

meds and different dosages until he has you in a situation where you have

optimal pain control. Actually, Neurontin is a medication that was initially

developed for people with epilepsy, to help control seizures, so it COULD be

something that you would really benefit from. They've found it helpful for

other

chronic pain conditions, arthritis is one I know of, and now I take it for CP

pain

control. I think once you get your pain issues under good control, you will

feel

well enough to consider any surgical procedures that may benefit you in a

calm and unrushed state of mind. I would hate for you to rush into any

surgical procedures unless they were absolutely necessary, and your only

available option.

Your current physician's " there's nothing else we can do for you " attitude is

one I don't believe in. If you've already had some months of no pain, or little

pain, which were interrupted by this latest bout of pain, there's also the

possibility that you could be at the point where you're reaching burn-out.

When my pancreas burned out in March of 2003, I went through three months

with absolutely no pain at all. The only reason I'm even on pain medication

now is because even though my pancreas is burned out, I still have two

pseudocysts that haven't gotten that message. They're still sitting there, one

in the tail, and one close to the head, and every once in a while they catch

debris and act up, causing them to increase in size and cause pain. My GI is

convinced that once they're gone, all of my pain will be gone, too.

So while that could be a possibility, I would urge that you get better pain

control before you consider any surgery. You must understand that this is

only my opinion, and that you need to do what you feel is best, and follow the

guidance of an experienced gastroenterologist, or if possible, a

pancreatologist. Just because I say something, or suggest something, it

doesn't mean that a person has to do it, it's just my opinion of what I would do

if I found myself in similar circumstances. And I may have a different way of

doing things.......lol!!......than others would....(smile). There aren't many

pancreatologists in the country, but I saw one, Dr. Lange, at the

Mayo Clinic in ville, FL. and I was highly impressed with him. I don't

know how far Corydon is from Indianapolis, but I know there are some

excellent doctors there, as well as at Duke in N. Carolina, or you could always

come down my way and see the superior gastro docs at MUSC. If it were me,

I'd want to hear " there's nothing else we can do for you " from two, or even

three, specialist's before I threw in the towel.

Hopefully this Pain Management doc that you're going to see in February can

do some good things for you to help you get a better grip on your pain control.

I think hearing Cambridge Class V Chronic Pancreatitis has set you into a

tailspin, it sounds awfully serious and hopeless, but it's really just a way of

saying that your pancreatitis is fully advanced. There's a lot of people here

who fall into that same catagory. Don't let the classification title frighten

you.

Well, I've talked your ear off. I'm just trying to help by throwing in some

suggestions that might be useful. Keep in touch so we know what's going on.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina State Rep.

SE Regional Rep., PAI

http://pancassociation.org/anthology.htm#Heidi

Note: All comments or advice are based on personal experience or opinion,

and should not be substituted for consultation with a medical professional.

[Guest guest]

Heidi

Thanks for your response. The doctor that I have been seeing actually

specializes in ERCP therapy I found out. I guess I can't remember anything but

that is what my mom said. I live about 2 hrs from Indy. I had my labs drawn on

Wed so I am awaiting the results. I will let you know when I get them.

Patty