Re: edema/local pcp

[Guest guest]

Hey guys,

Just got home from my second home (hospital) this afternoon. After trying

to deal with the panc flare off and on for a couple of weeks I just gave up

and my pcp admitted me to the local hospital. I was NPO Saturday and

Sunday, then clear liquids Monday, and soft diet today. My weight is up 22

lbs since Saturday. Walking down the hall makes me so short of breath you'd

think I just went up 3 flights of stairs. I have lasix but it honestly

doesn't seem to work that well anymore so I've decided I will just try to

ride this out and hope the fluid will go away on its own in a week or so.

Also, got some distressing news from my pcp this morning when he came to see

me. I'll back up a bit because I realize now I should have seen this

coming, but I really didn't. I live in a small town and my current pcp

(general practice doc) has been my doctor for over 15 years. There are no

GI docs at all in my town. My GI is in Huntsville, about 45 minutes from my

home. For about 2 years I had an internal med doc in Huntsville who had

taken over as my pcp because things had gotten so complicated with my health

issues. I still kept the gp up to speed on what was going on because

sometimes it just simplied things for me to be hospitalized close to home

and/or to see the gp here in Athens instead of having to go to Hsv. Well,

my internal med doc moved to Destin, FL because his wife got offered a major

promotion. He left the end of May. Our entire family was very distraught

over loosing him but we knew he was doing what was best for his family. The

internal med doc was in practice by himself and he made arrangements for

another doctor to take over his practice. I saw the new internal med doc

once and knew right away he wasn't the right doctor for me. I was going to

get my GI to suggest another internal med doc in Hsv but when he and I

discussed things, my GI said that it might be best to just go back to having

the Athens gp doc as my pcp since he knows my history so well and has no

problem consulting with my GI doc when he needs to. I made an appointment

so I could talk to the Athens gp doc and be sure he was willing to take back

over as my pcp. We discussed the fact that with cp you cannot go by the

labs to determine if the patient is having a flare. The gp assured me that

he understood and agreed with that theory in regard to cp. Since the gp has

admitted me on several occasions in the past when my labs looked perfectly

normal, I had no reason to believe he would change my treatment.

I had an appt with him on Monday because my back went out MAJOR on Sunday.

I told him that I wasn't doing well with my panc pain - having increased

pain, nausea, and vomiting, but was trying to ride it out with just clear

liquids. I told him I was pretty sick of the whole ordeal and tired of

constantly having to cancel plans and disappoint my family. He said he knew

it must be frustrating but he didn't have any answers. He then said,

" That's the problem with treating someone with chronic pain with narcotics.

When they have increases in pain there's nothing more to do for the patient

except more narcotics and that isn't really a good solution. " He went on to

say " when I was in medical school we were taught that you never treat

chronic pain with narcotics, but there's been changes in that school of

thought lately. However, if you quit taking the pain medicine your pain

might end up getting better or going away totally. "

He ended the office visit last Monday telling me to just keep doing what I

was doing for my back (ice, muscle relaxers, rest) and to add the back

exercises he gave me on the sheet. Then he said, as he always does, " Get

feeling better. "

I was in so much pain with my back that I didn't even respond to what he

said about the pain medicine and to be honest I had totally forgotten about

it until today.

When I called him on Saturday to tell him that my panc flare was getting

worse despite my best efforts to handle it at home, he immediately said he

would admit me. For quite some time now, my pain medicine when I'm in the

hospital has been IV Demerol 75 mg every 3 hours as needed. This was what

any doctor that admitted me would prescribe. Well, when they finally got me

admitted on Saturday evening, the nurse told me that the doctor had ordered

Demerol 25 mg IV every two hours as needed and Phenergan 25 mg suppository

every 6 hours as needed. Keep in mind I have a port-a-cath and have had it

for over 2 1/2 years so there is no problem with phenergan setting my veins

on fire like you have with a regular IV. Needless to say, 25 mg of Demerol

just barely touched the pain but I decided I would deal with until the doc

came in on Sunday. I told him that the pain medicine was not even coming

close to controlling the pain and that the nurse had told me to ask him to

write an order for 75-100 mg of demerol every 3-4 hours as needed. He said

75 mg was way too much demerol to be getting it around the clock but that he

would change the pain med. I told him that the last several times he'd

admitted me, he had ordered demerol 75 mg and phenergan 25 mg (both IV)

every 3 hours and that was also the amount the GI always ordered. He looked

at me like he thought I was lying and that is the first time in the over 15

years he has been my doctor that he ever made me feel that way. He changed

the pain med to demerol 50 mg IV every 3 hours as needed and phenergan 50 mg

IM every six hours. On Monday the charge nurse caught him just as he was

leaving and asked him to change the phenergan to IV instead of IM, so he

changed it to phenergan 25 mg IV every 3 hours as needed. After several

doses of demerol at 50 mg IV instead of 25 mg, my pain was much better under

control.

This morning (Tuesday) he came in and I told him I thought I was ready to be

discharged. I had a soft breakfast and the first few bites seemed to be

doing okay. It was after that that he told me he had been doing a lot of

'soul searching' (I think that's the term he used) about giving me narcotics

for chronic pain and that was just not the way he was taught so he wasn't

going to do it anymore. He said he had wanted to wait til I was over the

current flare before he told me, but that he wanted me to know that he

wasn't going to go against what he'd been taught from now on.

Keep in mind that I do not accept prescriptions for pain med from any doctor

other than my pain doctor. I follow his rules totally. My pcp has given me

a shot of 100 mg demerol/50 mg phenergan IM about 5 times a year in his

office when I have a flare that is during office hours. Doing that has

allowed me to remain NPO for several hours, helped get the pain back under

control so I could manage it with my home meds and avoid the hospital and/or

ER. So, other than about 15 injections over the 3 years since my

pancreatitis returned and rapidly got worse, this doctor has only prescribed

pain meds to be given to while I am in the hospital.

I suppose if I had been more awake or maybe not so shocked, I might have

argued, cried, or who knows what. However, I did nothing but simply say,

" okay " . I guess it has just now sunk in and I'm fighting tears right now.

I haven't even told my husband or my mom yet. On the one hand, I'm afraid

to tell them because maybe they'll think that the pcp has decided I'm just a

junky and that's why he has changed the rules mid-stream. The logical side

of my brain knows that my husband and mom will not think I'm a junky but

just knowing that a doctor that I thought was truly on my side has now

decided he's no longer willing to be on my side is incredibly upsetting.

This also means that I now have no choice but to have my family make the

nearly hour long drive to the hospital in Huntsville any time I need to go

to the ER and/or be admitted.

I know I'm probably just acting like a baby but at this moment, I just feel

like giving up. If not for my wonderful family, I probably would just give

up. I'm so tired. I'm tired of living like a recluse. I'm tired of being

so tired. I'm tired of putting on a brave face, smiling, and acting like

all this is no big deal. I don't even know myself anymore. I'm tired of

never knowing what's going to set things off with my pancreas. I can eat

something one day and all is well only to eat the same the next and be

miserable. I'm tired of constantly having to back out on plans because just

taking a shower wipes me out for hours.

I have an appt with my pain doc on Thursday and my GI told me that he wants

me to discuss different options for my pain and also discuss whether my pain

doc thinks I would benefit more from having a celiac plexus block done 'from

the inside' vs going through the spine like the pain doc does it.

I do know that on the one hand depending on narcotic pain medication long

term is not the best thing but I also don't think I am strong enough to

'just deal' with the pain unless I could just give up eating or drinking

anything at all. Even then I'm not so sure I could make it through more

than a day or so without any pain medicine. A great day is when my oral

pain meds are able to keep my pain around a level 2-3. Also, the majority

of my flares cannot really be related to anything I've eaten. On the days

that my panc has decided to act up, even water can send the pain through the

roof. Also, I've had attacks hit in the middle of the night when I'm dead

asleep and haven't had anything to eat or drink for hours.

Well, I need to quit whining and go to bed. Maybe I'll be better able to

deal with things after a decent night's sleep.

W

[Guest guest]

,

I'm sorry to hear you are having such a hard time. Hopefully things

will start to even out for you. I certainly understand your

frustration and feel the same much of the time. This disease

absolutely and totally consumes your life. I, too, am tired of it

all.

I would like to ask you about your edema. I've been suffering with

it, and the shortness of breath (unusual for me) in even modest

physical activity and debilitating fatigue. Regarding the edema, I

have a prescription of HCTZ, however one with CP must be very careful

with diuretics because they can cause pancreatitis. Do you have any

other remedies for the edema. My feet look like sausages stuff into

my shoes...I hate it. Does anyone else have any ideas to help?

I hope you are doing better?

Thanks,

Sam

[Guest guest]

wrote:

> My pcp gave me a diuretic called Amiloride and I really think it causes

my pain to get worse even though he swore up and down that this is one of

the diuretics that don't cause problems with the panc. <

,

Sadly, the drug library disagrees with what your doctor told you. If you go to

the prescription drug library at:

http://www.rxlist.com/

and type in Amiloride, under the Warnings and Precautions section for this

diuretic, Pancreatitis is listed as one of the primary gastrointestinal side

effects for this medication.

I've been so sensitive to any medications that cause pancreatitis that I always

check rxlist first, no matter what a doctor tells me. Just based on past

experience, there have been several occasions where a doctor gave me the

wrong information. While I don't think their denial of any pancreatitis side

effects is intentional, I do think that sometimes they are so convinced that the

medication in question will help, that they don't research it as thoroughly as I

can, and do. Because they have seen a particular drug work successfully on

so many other patients, they temporarily forget the fact that we have CP and

what helped all those other people may be harmful for our sensitive

gastrointestinal systems.

Although I've seem to sucessfully isolated one culprit that I know contributes

to my edema, (shellfish), I'm still curious to know what causes it in the first

place. I have noticed with mine that each episode seems to be worse than

the last one was, and each successive episode lasts for a longer duration.

This is not good news.

Has your doctor given you any reasons for why you've been plagued with

your edema? Other than my association with diabetes, mine has no

explanation for mine, and as you and Sam don't have diabetes, yet we all

have CP, I'm just wondering if there is any correlation with this or not.

Sorry for all of your discomfort, . I do know how it feels, and although

mine has not been as extreme as yours and Sam's, to the point where there

is involvement with the respiratory system, it's horribly uncomfortable just

the same.

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

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

opinion only, and should not be substituted for professional medical

consultation.