Can I pick someone's brain about a few things?

[Guest guest]

My name is April and I have had CP for 6 years. I still have not

found a pain regimen that works for me. I have tried the fentanyl

patch up to 25mg, Sandostatin, Tylenol 3's, and of course Percocet

5mg and now the 7.5 mg tabs, which barely dulls the pain. My

gastroenterologist is hopeless so I went to a new one and she told

me I needed to see someone who is more interested in my disease. I

live in Atlanta, Georgia so she referred me to Emory University. I

am pretty excited that I will finally be able to see someone who

actually knows about my disease. Unfortunately though, I have been

in quite a bit of pain lately and unable to eat. I have lost 15 lbs

in less than 2 weeks and I have run out of my pain medication. I am

trying to hold on until I see this new dr cause I don't want to have

to go through my old dr. He gives me such a hard time when I try to

get a refill early. But I am afraid I will have to buckle and

call. It is awful that I have to feel this way. I have a one year

old that I would love to do all sorts of things with but I just

don't have the energy.

[Guest guest]

Hi April,

I have CP and am also in Atlanta. Every patient is different and I think

there are different responses to pain medication for each patient. Maybe the

differences are small but they are there. I suggest one has to have a GI they

can

work with in a good productive way and I hope interaction with Emory will be

productive for you.

It must be very hard to meet the demands of a year old and live with the

demands of CP. You have my sympathy on that.

And FWIW, I don't think there is any pain med that will allow anyone to live

with CP and not make other lifestyle changes.With CP you most likely need some

times that are strictly for yourself and even trial and error times to

develop the best " copeing method " for you.

Again, good luck with Emory.

Best wishes, Poncho - GA

[Guest guest]

Dear April,

Finding a new doctor that is more willing to try different methods of pain

managment for you would be ideal. It sounds as though what you've tried so

far has been too little to help, and there are many different combinations and

dosages that could be tried that may work better. IMO, I don't think you've

tried a strong enough dosage of anything to help you much.

I'm not a doctor, but I have had considerable experience trying all the

different

meds; MS Contin, Oxycontin, Oxycodone, Percocet, Morphine, Dilaudid,

Tylenol 3, Neurontin, Hydrocodone and Duragesic (fentanyl). Some worked,

others didn't. Fortunately I have a Pain Management doctor that patiently had

me try several different combinations over a three month period until we found

one that works the best, which is Duragesic 75 mgs. every 48 hrs, 10 mgs.

Oxycodone for breakthrough 3 times a day as needed and 600 mgs. of

Neurontin. This is just to give you an idea of the different doses and types of

medication that are available.

You didn't mention whether you're taking pancreatic enzyme supplements.

Those, too, can have a very positive effect on your pain levels in assocation

with the food that you eat. If you aren't using enzyme supplements, make sure

you talk to your new doctor about these, too!

Many of us also take specific antioxidants that help with our pain levels. If

you

want further information about those, just ask.

I guess you've also been instructed about your diet and the physical activity

limitations that one needs to adopt in order to cope easier with chronic

pancreatitis. If you have any questions about this, or anything else, please

don't hesitate to ask us for help.

Good luck with the new doctor, and let us know how it goes.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep., PAI

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

only, and should not be substituted for consultation with a medical

professional.