how often do you......

[Guest guest]

Hi.all,

i hope everyone out there is having a good day!i just have a

few questions,if any one can answer.i know that getting in to see a

g.i. doc for the first time can take awhile,but how often do you wait

for a follow up visit?i had the ERCP on sept.20th,which caused an AP

that i spent 2 days in the hospital.i been home 4 days and still feel

crappy.no appetite,nausea,extremly tired ect..when i called today to

make an appt. for follow up,the soonest i can be seen is dec.14.thats

over 2 months away and seems like an awful long time,or is it normal

to wait this long?also, my last ct scan was in july,and dr.said at

last visit to have another done in nov. how am i supposed to get this

sceduled if i don't see the dr. till december?and when i called to

speak with the dr.about the ERCP results,the nurse called back and

said everything was normal but i wanted to talk to the dr.,not her,

and she said he was very busy,thats why she was calling for him.now,

he told my husband after the procedure that my pancreas was

damaged,and i want to know exactly what that means and not wait 2

months to find out!am i expecting to much?another thing,(sorry),once

before when i called and asked them to call in a script for

phenegran,she said " can't your pcp do that? " and i said that since my

pcp sent me to a g.i. for my problems should'nt he be the one i call?

are any of you seen by both a pcp and gi for pancreas problems?say if

i continue to feel really bad and i know i can't see the gi till

dec.,should i go see my pcp?sorry, i just kinda get the feeling this

gi dr. is giving me the brush off, or just don't want to fool with my

problem.should i find a new one or as i said,is this common? thank

you for listening and answering!!

CINDY

[Guest guest]

Hi.all,

i hope everyone out there is having a good day!i just have a

few questions,if any one can answer.i know that getting in to see a

g.i. doc for the first time can take awhile,but how often do you wait

for a follow up visit?i had the ERCP on sept.20th,which caused an AP

that i spent 2 days in the hospital.i been home 4 days and still feel

crappy.no appetite,nausea,extremly tired ect..when i called today to

make an appt. for follow up,the soonest i can be seen is dec.14.thats

over 2 months away and seems like an awful long time,or is it normal

to wait this long?also, my last ct scan was in july,and dr.said at

last visit to have another done in nov. how am i supposed to get this

sceduled if i don't see the dr. till december?and when i called to

speak with the dr.about the ERCP results,the nurse called back and

said everything was normal but i wanted to talk to the dr.,not her,

and she said he was very busy,thats why she was calling for him.now,

he told my husband after the procedure that my pancreas was

damaged,and i want to know exactly what that means and not wait 2

months to find out!am i expecting to much?another thing,(sorry),once

before when i called and asked them to call in a script for

phenegran,she said " can't your pcp do that? " and i said that since my

pcp sent me to a g.i. for my problems should'nt he be the one i call?

are any of you seen by both a pcp and gi for pancreas problems?say if

i continue to feel really bad and i know i can't see the gi till

dec.,should i go see my pcp?sorry, i just kinda get the feeling this

gi dr. is giving me the brush off, or just don't want to fool with my

problem.should i find a new one or as i said,is this common? thank

you for listening and answering!!

CINDY

--- End forwarded message ---

[Guest guest]

Hi Cindy,

I can try to answer some of your questions...with the cavaet that I

do not have normal relationships with my doctors, and part of the

reason is that I have run into the problems that you are

describing here.

When I had my ERCPs for diagnostic purposes I was told to

make an appointment in 6 to 8 weeks for follow-up, but only IF I

was still having problems. Needless to say, I found that less

than optimal care and I never returned to that doctor. The

ERCPs that I had for therapeutic reasons (the stents) never had

a follow-up visit attached to them. After the first consultation in a

September, I never saw the doctor again until the last day of

December of that same year and that was only because I

insisted on seeing him. If not for that, he never would have seen

me in follow-up. Again, I found that unsatisfactory....I sent him a

letter outlining why I found his approach to face-to-face

encounters demeaning and heartless and have never heard

from him, nor seen him again. So, in my experience what you

are experiencing is normal....but definitely not acceptable in my

opinion.

As far as your question concerning PCPs....I can answer that

question more from the providers point of view I think.....

When a patient sees a specialist it is oftentimes so that the

specialist can offer advice and an opinion to the PCP. The PCP

then takes care of the patient with the understanding that he /

she can consult with the specialist when needed. Because

specialists have huge time constraints, they are not ready to

assume care for any patient that is not in an urgent or critical

condition, at least how it works with tertiary care clinics that I am

familiar with. So in your case, I would definitely call your PCP

soon and schedule a follow-up with her / him. PCPs are usually

more accomodating with their appointments - if needed, you can

probably be seen in 24 or 48 hours. In addition, if more

specialized care is needed by your GI, your PCP has more clout

to get the GI back on your case. The CT scan can also be

ordered by your PCP: just explain what you were told back in July.

She can confirm this and order the test with copies being sent to

the doctor who wanted the Novemeber scan done. The way the

system works now (when it works, that is) is that the PCP is

suppose to handle this type of non-urgent care, even if it is of a

specialized nature. I have found, in my experience as a patient,

that specialists do not want to be considered " your " doctor....only

as a brief interloper in your care. Rarely have I had a specialist

take any kind of in-depth interest in my case...superficiality is

their credo I think....get them in, triage their needs and if the

needs are not urgent / critical or easily fixable, then get them out

of your clinic as soon as possible.....

The only way that I was able to get ANY information from the four

ERCPs that I had was to request my medical records from the

doctors. Writing a letter asking for information from the GI doctor

was not successful. However, by law they have to give you your

medical records as long as you sign a consent form. I did this for

both the doctor's visits as well as for the dictation that was given

concerning any radiology (like CT scans, MRCPs, ERCPs, etc). I

NEVER received any feedback from any of the doctors that I saw.

It was only by reading my medical records was I able to learn

that I have pancreas divisum, etc. And everything that I have

learned about this, and how to treat the chronic pain, has been

on my own, not through any discussions with physicians (with

the exception of my pain doc - who is a wonderful doctor).

So that is my advice....call your PCP for your follow-up visit and

request a copy of your medical records from the GI's clinic as

well as the hospital that did your CT scans and ERCP.

laurie

[Guest guest]

Hi Cindy,

This kind of problem was a delima for me in the beginning of my dianogsis

too. There are all sorts of things working here and unfortunatey, as a patient,

you might not be treated as you would normally think. For a moment think about

all at work here, your PCP and GI are likely trying to work together as both

of them do have a roll in your care, if you have insurance then there might be

insurance policies and/or rules to be followed to make the best condition for

you and for them, while I hate to say this your pancreaus will not likely

repair itself nor is there anyway to fix it your care as an individual patient

is

likely one of accomadation to your condition as best as possible and recognize

this could eassily be a moving target.

I found it best to keep my PCP on my list for annual physicals and

non-pancreaus problems. My GI and I have developed a good interactive

relationship on

the issue of my chronic pancreatitis. I think I can call him at any time about

my condition and I have a regular appointment for tracking my condition and

refills of the associated meds. Basically I have this relationship with my PCP

also.

I would suggest that time and focused effort will help you establish the best

relationship that suits you and your care, but that it will likely take time.

If it doesn't work out then you might seek to change doctors, one or both.

You are the parient and your care is paramount, but it does take time to get to

where you want to be with your doctors. For me it took about three years and

my condition was relatively stable with few complications and a good response

to meds. While it's easy for me to say the patient must be patient it's so hard

to do so then one is faced with the dehibilatation, symptoms, and progression

to this disease.

Best Wishes, - Poncho - GA

[Guest guest]

Could be that the doc is so overbooked with deseases he CAN fix, that

you have hit the back of the bus... Could be that he's just too

damned overbooked to get to all of the patients...

Yes, I have seen both a GI as well as a PCP for the ongoing treatment

of this disorder, in addition to my Pain Control Dude visits every

three months...

Once the new GI here told me that there was absolutely nothing his

practice could do to help and refered me onward to the University, I

made arrangements with my PCP to just maintain the nausea control and

the Pain Control Dude to maintain the pain control... Mighty Tighty!

So-- a once a month to the PCP and every third to Pain Dude, Home

Care Nurses visit weekly to access my portacath and deliver my

Phenergan and Anzimet, my nutrient drinks, and then they even come in

on the 4th visit each month and change out my Intrathecal meds and

reset the pump.

Overall, I don't know if I hit a specific for you, other than to push

the overview that this desease, while having common symptoms for many

of us, the treatment we all have recieved may have been extremely

varied.

After years and years and years of stalling and half answers from

many many Physicians, I have settled for adequate control of the most

terrible of the circumstances which are inherent. And this

compassionate control comes from my PCP and my Pain Dude... Both of

whome I have the utmost respect for and am very fond of.

Best of luck Mam.

Ricki

[Guest guest]

Hey dude.....I sent you a message the last time you posted to the

PAI.....did you get it? How are you doing? Mark

Re: how often do you......

> Could be that the doc is so overbooked with deseases he CAN fix, that

> you have hit the back of the bus... Could be that he's just too

> damned overbooked to get to all of the patients...

>

> Yes, I have seen both a GI as well as a PCP for the ongoing treatment

> of this disorder, in addition to my Pain Control Dude visits every

> three months...

>

> Once the new GI here told me that there was absolutely nothing his

> practice could do to help and refered me onward to the University, I

> made arrangements with my PCP to just maintain the nausea control and

> the Pain Control Dude to maintain the pain control... Mighty Tighty!

>

> So-- a once a month to the PCP and every third to Pain Dude, Home

> Care Nurses visit weekly to access my portacath and deliver my

> Phenergan and Anzimet, my nutrient drinks, and then they even come in

> on the 4th visit each month and change out my Intrathecal meds and

> reset the pump.

>

> Overall, I don't know if I hit a specific for you, other than to push

> the overview that this desease, while having common symptoms for many

> of us, the treatment we all have recieved may have been extremely

> varied.

>

> After years and years and years of stalling and half answers from

> many many Physicians, I have settled for adequate control of the most

> terrible of the circumstances which are inherent. And this

> compassionate control comes from my PCP and my Pain Dude... Both of

> whome I have the utmost respect for and am very fond of.

>

> Best of luck Mam.

>

> Ricki

>

>

>

>

>

>

>

>

>

[Guest guest]

I'm sorry Mark, I don't remember getting a message from you on the PAI list.

It's probably those damn aliens again. You know they steal emails because

those electrons are very easy for them to digest.

Please resend it and I'll give it my fullest attention.

Jerry/NC

************************************

>

> Hey dude.....I sent you a message the last time you posted to the

> PAI.....did you get it? How are you doing? Mark

> Re: how often do you......

>