Hello to All

[Guest guest]

Well, hello all...I haven't posted in a long time really too long.

But, I'm finding that lately I really need the support that I got

accustomed to with you all again. I guess I've just been in a state

of denial really but also I have been very, very sick. Someone on

another group suggested to me that they thought there might be

something else going on in addition to this illness as they thought

that I had progressed much too quickly to be this sick so fast and

only about a year into it. And it's just been sort of " haunting "

me. What do you all think?

I don't seem to get any good answers from the drs I have seen to

date. Although I did finally see one that was to perform

a " functional capacity test " (which really amounted to nothing more

than talking to me for an hour or so and no actual " test "

performed) His conclusion, thank God as it will be submitted with

my paperwork on my appeal for the negative decision I received on

the Fed Employee's Disability Retirement was " I have reviewed this

patient's records, talked at great length to her and my conclusion

is that she is totally, completely and permanently incapacitated and

unable to perform her previous job or any one like it due to chronic

pancreatitis and SOD. " But to get back to what do you all think....

I am ill almost every single day and mostly so ill that I am in

nearly constant pain....runs straight through from mid sternum area

to my back, often feels like " fingers " that are burning up and

around my ribs and often up into my shoulder blades...burns, burns,

burns....I am nauseated alot of the time as well. Also, sometimes

feels like it's " boring " a hole in my mid sternum area as well. But

everything seems to revolve on what my bowels are doing...as soon as

there is the slightest bit of " action " going on in there and that is

also a burning type of pain and cramping as well, it starts the

other pain to getting worse and the nausea, etc. Now mind you, the

pain varies in intensity from day to day but it is an every day

thing. Hardly ever lets up...

The meds I'm on now are 125mcgs of Duragesic patches changing every

48 hrs, methadone 2.5mgs every six hrs (although I really hate this

med as it just seems to make me want to go to sleep), Percocet

(which I avoid like the plague as it just seems to add to the

nauusea) for " break thru " , Neurontin (2700 mgs a day, 900 three

times daily), Ativan (which I've been on for yrs anyway due to a

panic/anxiety disorder I have), and phenergan for the nausea,

Remeron for sleep and then the enzymes (which seem to increase the

nausea as well.) That's it in the med dept I guess....

I guess what this other person said to me about how they can't

believe that I would be THIS sick every day has really been

bothering me. I mean does this sound typical? Or does it sound

like something else is going on as well or something else entirely?

Is everyone this sick all of the time? Or is there anyone that is

this sick all of the time? I sometimes get like a day or two of

what would be " normal " living....I've even had periods where it goes

away for a week or two. But then it's right back again...and it is

EVERY DAY!! I just saw a doctor in Boston who is highly respected

and he said he doesn't believe that I have pancreatitis but didn't

do any tests, didn't even examine me and then came to this

conclusion. I'd also like to add that there is someone on this list

who, of course, will remain nameless that saw this very same doctor

and the person was in the middle of an acute attack, subsequently

spent 10 days in the hospital and this same doctor said he didn't

believe that they had cp either (they actually wrote to me off line

and said they didn't want to say anything beforehand to me because

perhaps I'd be able to get some help from this doctor...but later

wrote after I said what an idiot he was and related the above

experience to me.)

I always thought doctors wanted to have objective evidence to make a

proclamation like that, however, he never performed one single

test. I'm seeing the doctor that referred me to this doctor in

Boston tomorrow and he had had an MRCP set up for me but cancelled

it due to the fact that the doctor in Boston had given his opinion

that I don't have cp. I'm going to tell him tomorrow that I want the

MRCP since I haven't had one since about this time last year...just

in the hopes that it might show something by now.

I don't know, I guess I'm just really confused....is there anyone

out there that is sick like this every single day? Does this sound

typical? Or does it sound like something else might be going on in

addition to cp? Every time I mention that Dr. Lehman sure thought

there was enough going on to proceed with a dual sphincterotomy last

August because of somewhat (not highly, but enough to make him go

ahead with it) high pressure at the sphincter of oddi. And he sure

thought/thinks that I have SOD, but all of the doctors that I

mention it to and show Dr. Lehman's notes to (and some even know of

his work and know him personally!!) just blow it off...when I

question it they say they don't know why Dr. Lehman did the dual

sphincterotomy and that my pain is not cp and is " unknown " in origin.

I guess I'm just looking for some sort of affirmation...why am I so

sick? Is this atypical? I'm just at my wit's end with

this...they've done every other test in the book and they are all

normal except for anything to do with the pancreas and then they all

seem to get " gun shy " for some reason.

Anyway, sorry for the length of this. I really just wanted to say

hi again and I'm hoping that I can be a better and more frequent

contributor to the group again. I miss you guys!!!

The long lost ......

[Guest guest]

Dear ,

It's really a shame you had such a negative experience with this doctor in

Boston. I remember another member telling us a story very similar to yours in

regard to the doctor she saw in Boston a few years ago, so I believe I know

who this is and it infuriates me because the doctor's name carries a lot of

weight among his peers, and in the medical community. If I remember

correctly, this other patient DID have chronic pancreatitis with complications,

just as I believe you do, also. I'm personally distrustful of ANY physician, no

matter how superior his qualifications are, who can make a negative

diagnosis of CP, without doing any examination, tests or radiological studies

on the patient.

I fully endorse Laurie's indea of going to the Mayo Clinic, especially the one

in

ville, FL, for a full evaluation by one of their specialist's in the

gastroenterology department. I went there last October for a review, and was

very impressed with their thoroughness, expertise and professionalism. My

review wasn't to determine a diagnosis of CP.....that had already been

diagnosed and the CP was the problem that caused my type I diabetes. I was

there for a review of my pseudocysts, to see if anything could be done to

remove them.

Just a few months earlier than this one of our other members went to the

Mayo at Jax with abdominal pain and problems related to CP, but she hadn't

been able to get a confirmed diagnosis in her home area. She came home

from the Mayo with a confirmed diagnosis of CP.....they did all the tests and

followed through with everything that needed to be done to confirm it for her.

That's why I think it would be such an excellent move for you to make.

They wouldn't hesitate to do any of those pancreas related tests at all, and

would probably do a whole lot more, too, if they felt there was need for it. My

insurance company said that because the Mayo wasn't in their network, that

we would be responsible for some of the cost. Our only cost was $125, and

for what was done and what was learned, it was worth every penny.

In regard to whether or not your continual daily pain is normal for CP, I think

you shouldn't place too much emphasis on what other people experience with

their CP as opposed to yours. Each case presents itself so differently in each

individual, that I think it's hard to determine what " normal " is. During the

first

year of my CP I didn't have daily pain, it was very sproadic pain in the earlier

months....a day here, two days there, but by the start of the second year I was

having pain every day.

Go ahead and see if you can get this doctor to do the MRCP, if you can. But if

he's already been prejudiced by the Boston doctor's report, I wouldn't expect

much motivation from this doctor to look further, and that's what you need. I'm

one of those people who feel you should keep looking for another doctor

who's challenged to look further to find an accurate diagnosis. Abdominal

pain of unkown origin just doesn't cut it as a dx. As such, if you were ever to

need SSDI disability, you'd never get it, since they do rely upon valid,

cataloged diseases or conditions, and " pain of unkown origin " isn't in their

books.

On another subject, in regard to your meds. Using Percocet as a break

through med over a long period of time isn't good for your liver. It has

tylenol

in it, and a med without any tylenol would be much better over the long run.

My Pain Managment doctor switched me from the Percocet 10/325's to 10

mgs. of Oxycodone for that very reason. You might talk to your doctor about

this, too, especially if you're taking a lot of the Percocet.

You also didn't mention use of anything to help with bowel motility while

you're on all these narcotics. I don't know about you, but most of us have a

difficult time with constipation when taking pain medications - that's one of

the

common side effects. You did mention pain and cramping whenever there's

any " action " , and I'm wondering if, in fact, you're suffering with constipation

from the meds, which would cause additional cramping and pain. I had

terrible problems with this myself, using a duragesic patch and oxycodone for

BT. on a daily basis. My doctor prescribed Miralax for me, and that has been

a life saver for me as far as motility goes. It helps relieve either

constipation or

diarrhea, and by using it I'm able to stay regular and not experience any more

pain and cramping. This, too, is something you may wish to discuss with your

doctor. Since you're seeing the doctor tomorrow, could you let us know what

his reaction is to this information that's been discussed today?

I'll be waiting for some news.....I've missed you, too, and would like to see

that

you can get better help.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

www.health.groups.yahoo.com/group/pancreatitis/

Note: All comments or advice are personal opinion only, and should

not be substituted for professional medical consultation.