Treated like hyphocondriac

[Guest guest]

Hello from Stockholm-Sweden

I am reading a lot of post very much like my own recent experience and

previous sad and humiliating treatment by doctors. It seems to be the

same all over the world. I am just sharing my latest experience (from a

letter I sent to Anyse to vent) as I take part in yours and feel pitty

for all of us beeing in this dreadful situation! Forgive me my spelling

mistakes…you will read some swenglish!

This mix below is what my last visit with Prof Doc Blomkvist, Karolinska

Institute (the board of professors elect the Nobelprize winner in

Medicin!) resulted in, withdrawel of Creon Forte and painmeds, this mix

to be made in the Pharmacy lab was given instead! (I have to hope for my

other Doc to be kind enough to keep on providing me with the meds I

need)

-Do you recognize this mix, did anyone ever try it?: Phenazonum 250

mg, Coffeinum 30, Papaverini chlorid 40, extr belladonnae 20, lactosum

qs. I wonder how I will react to coffein, I love coffee as a drink, but

I dont tolerate it. Papaverin I remember trying for cramps, belladonna I

used to buy in Italy and Spain in the ´60ies and 70ies as eyedrops,

beautiful sparkling eyes ....

I was sent to this prof at Karolinska Hosp to be given 2nd opinion by

my endocrinologist, once in spring and a new appointment 2 days ago. The

reason beeing that my " old " gastrodoc at Huddinge Hosp wanted to force

me to go through manometri and provocate fat, protein rich food on me

to measure my intestine movements, I have refused to do it!

This " new " Doc is convinced it´s IBS as my MRCPs and other tests havent

shown any CP. He is just puzzled with the fact that my potassium is low,

spring time and now. Otherwice your bloodsamples shows you are healthy,

he noted. At the moment you are taking supplementary potassium, still

low strange he steadily repeated.

- HAHAHA Creon only helps digesting fat and you are taking that amount

(12-15 Creon Forte/day), what happens when you forget?

----Do I ever forget, I am a burnt child I have touched the fire....I

know what pain is.

--- He also asked and what when you sin? (eat a fluffy pastry-AH?)

- I havent eaten celiac or fat for over 2 years thats what saved me, low

on protein, more Creon F, small portions, follow the Liverpool Doc

recommendation with antioxidant therapy, Prof Neoptomolus helpful advice

got me out of the nightmare paincircus and I gained 24 pounds in 5

months.( the doctors at the hospital had put a cross over me in 2003,

paleative care, I was a walking stick) I still get my painattacks but I

do keep my weight more or less depending on what I can eat (if not only

bananas and jogurt). I am not a masochist, however much I long for meat,

pastry, chocolate and wine my body remembers HELL:::::and I

substain..have enough problems and symptoms to add up…

----The Professor continues--You found your own method, thats a good

girl - see, put on weight, not in and out of hospital, less pain AH?

Good girl finding her own way. ( I reminded him about when the turning

point started, low on fat and protein, Creon forte, celiacfree, -Dr

Neoptomolus in England helped me I didnt make it up myself!!! )

--He just laughed at me. Good to hear, good to hear.BUT it is too costly

to keep you on Creon (we have subsidiced medicine) in your case it´s

thrown in the dustbine, it is not a medicine, it doesnt cure, just runs

through your intestines. DR/prof IBS commented

.. ---Yes but Sonja cant tolerate food without Creon and get pain and big

smelly awful stools

..... Shit always smells, the Professor answered, mine too! (perhaps not

the royal shit and gas I wanted to add) He said that I should try

acupuncture on my own expense and he could put me on the waiting list

for the IBS hospital, they had found a good new treatment-hypnosis- but

the waiting list/line is 3 years (with a smile on his face).

This is only a tiny bit of the conversation. I tried in a calm way to

explain that those who have seen me, my sister, friends and collegues at

work react and immediatly notice when I am getting poorly, they suffer

with me and at times I have to ask them to leave me alone as their

compassionate reaction and pain on their faces hurts my poor aching body

even more, topped with nausea and dizzyness

... My low bloodpressure was said to be good for the heart (90/60) -You

wont suffer from heartattack,haha(he was very cheerful) and you can

allow yourself alot of salt. Might make you faint sometimes but....

----I did faint a dozen times this summer.....no comments.

----I get the chills.

----Add some food...you eat too little fat! Or dress better. Keep off

the painmeds (Oxycontin and Tradolan) they only make you opstipated and

that makes your pain worse!!!I wont prescribe it try my old mixture

instead (see above prescription)

.. ---Your bodymassindex is 21-perfect at your age 53 and low

bloodpressure, keep on working thats what keeps me fit I am 70 years old

and wont quit my job.

----(I am thinking quietly) I am struggling to survive, work whenever I

can, not on sicknessleave. Support myself, selfemployed...but I kept my

mouth shut, 60 minutes of his precious time (more than any doc ever gave

me, except for when hospitalized) - He must have had joy and pleasure

out of this meeting as he was so generous.

- Whats there to say, I hardly stand on my feet, can hardly eat, tried

to explain the hurting points, the triangle on my left side up front and

in the back, along my spine hurting like hell (he showed me on the map

where the big intestine is located) under my left ribs..tightning like a

lace around my innerabdomen...HE ONCE AGAIN stated - you are one of the

most typical IBS cases I have seen.

---------He let me out of the door said goodbye, waved with his

hand-bye, bye…. ( I dont want to see him anymore but what about the poor

ill patients, IBS, CP or whatever, we are ill, we dont make it up, we

seek help…..).

A hyphocondriac thats what I feel like, not trusted, the patient is

always wrong and the doctor right. OR????????????

With love from Sonja

[Guest guest]

In a message dated 11/9/2005 3:16:49 PM Eastern Standard Time,

sidorow.guide@... writes:

I love coffee as a drink (Swedish Pennicillen)

Hi Sonja,

I would expect that Doctors in Sweden are about the same as many here in the

USA. They were taught some time ago by professors who learned even longer ago

about, or just a little about, Chronic Pancreatitis. Even in a

" teaching/research " hospital the pancreaus gets little attention. I can hope you

are

persistant in getting your best medication and that you get good cooperation

from the

medical profession in Sweden. On the 5plus5 site, associated with our site on

Yahoo there are posted many medical articles, purhaps you might print out

something you feel is pertainent to you condition or current problem and have

your

doctor read it. If he can read the English subtitles on Swedish television,

he can read a technical article. If you have a problem getting to the posted

atricles, come back to the message board and let us know and I or someone else

will help you reach the information from your computer.I hope you are well today

Best Wishes, Poncho - GA

[Guest guest]

I totally understand. My doctors and my friends and family treat me

like a hypocondriac. I think that is one of the emotional hardships we

have had to deal with.

Because what that says is that they are not listening to you and what

you go through.

Eileen

[Guest guest]

Sonja,

It's too bad that you even had to waste even thirty minutes with this

Professor. I think I would have come very close to walking out in the

middle of his conclusions.

Thank goodness your doctor will still prescribe your meds. What will

you do about getting the Creon Forte now? Even for someone with IBS,

I would think it would be good for them, too. I know you have more

than this, but think the enzymes would help anyone with digestive

problems.

It's good that you don't have to see the Professor again.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

SC State & SC Regional Rep

PAI

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

opinion, and should not be substituted for consultation with youre

medical professional.

[Guest guest]

I know that in Europe, Viokase is marketed for " functional dispepsia "

as well as post-cholestectomy syndrome, so Creon should fall into the

same category. That doc would've seen my rear end walking out the door

as well!

Margaret

What will

> you do about getting the Creon Forte now? Even for someone with IBS,

> I would think it would be good for them, too.