frustration!!!!

[Guest guest]

i just wanted to drop in and 'gripe' for a minute.about amonth ago my

close friend started having really bad diareeha.her and i go to the

same PCP and he couldnt find the problem,

so she was referred to a g.i. the same group of gi doctors i'm

supposed to see.within this months time she's been to the g.i. twice

and had a colonoscopy done all to find out it was her new anti-

depressant causing her problem.now'i have been sick since feb.and

still havent seen the g.i.my appt.is this weds.aug.10th.it's just so

frustrating that she could get help so quick and i'm still waiting.do

these drs.not care or understand how painful this is?my pain has

been 'acting'diffrent lately,also.usually my attacks would hit out of

the blue,now i've been feeling pretty good when i wake up,but as the

day goes on,i start having more and more pain and by nightime,right

after dinner,i'm in agony.it's been like this everyday for about a

week and 1\2.i've really been trying to eat healthier [low-fat]but

nothing seems to help right now,except going without food,period.its

funny i've lost about 25 pounds since feb.,but my hubbys gained

alittle.we think its because i never finish all my food and he eats

his plus the rest of mine.anyway,is this new pain patterni've been

having normal,does anybody else have this problem?thanks for

listening and i hope everyone is doing well this evening. cindy

[Guest guest]

Cindy,

Your frustration over the length of time it's taken to get an

appointment with a GI is understood. Many of us have had to wait

months, sometimes more, before we could get in to see a specialist.

Think now about your upcoming appointment and do your best to prepare

for it.

If you haven't kept a journal of your activities, symptoms, times of

extended pain, daily diet, I suggest you prepare something like that

now to show the doctor this week. Make notes of the former pain

activity and then how the pattern has increased in these later weeks.

Symptoms such as those you describe, where you feel well in the

morning upon rising, but then have increasing pain throughout the day,

with the major pain culminating in the evening after dinner, seem to

be common for many people with CP. I would surmise that this may

indicate a pattern of further progression of the disease, as it

becomes increasingly more chronic and evidently more debilitating.

Try to have a thorough description of this pattern, and how it's

increased on record to discuss with your new doctor. This will show

him that you are actively monitoring your condition and serious about

trying to find relief. Records of your weight loss are also

important. Many patients experience weight loss during the initial

stages of CP, and this symptom is one of the textbook indicators of

CP. It usually proves that malabsorption may be a problem, where the

patient has stratorrhea, and the food isn't getting properly digested.

As the malabsorption continues, the essential nutrients and vitamins

that the body needs to have to create energy aren't absorbed and

subsequent weight loss is the result.

It's only a few days more now that you have to wait. Try to be as

prepared with facts as you are able to, and remember to take some

paper with a list of questions that you intend to ask. If you have a

spouse or friend that can attend the appointment with you, take them

along and ask that they be permitted to sit in with the doctor when

the doctor interviews you and discusses his/her treatment plan or

reviews any tests or scans that the doctor may need to do. Sometimes

having an advocate along is helpful to help you remember what the

doctor has said, as we are usually so nervous and excited about that

initial appointment that we sometimes forget half the things the

physician tells us. If that's not possible, you might take along a

tape recorder and ask the doctor if you can turn it on when he makes

his determinations and discusses future treatment and/or plans, so

that you can keep track of what's been discussed.

Good luck, and let us know how the appointment went and what will be

happening next.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

SC Rep

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 your

medical professional.

[Guest guest]

Heidi wrote:Heidi,Thank you very much for your

advice.i am taking my husband along with me,i don't know if thats a good thing

or not.and i have been keeping a log of how often ive been having flare-ups.not

of what iv'e been eating though.when i was rearranging my bedroom over the

weekend,i found an old notebook from oct.04where i had been writing down every

time i had pain,which back then was mostly after i ate.i can't beleive how much

of a diffrence between then and now ,as far as the frequency and severityof my

attacks.i'm kinda nervous about tomorrow,but then,hopefully i'll get some

answers and releif.i was telling my mom that i had a dream that i went to see

the gi and he told me my diagnoses of cp was wrong that all i had was an

ulcer!!wishful thinking,i guess. hope everyone is doing well

today.Cindy