Hi to ALL

[Guest guest]

I am new -- my name is Clare -- have had over three years of acute and

chronic pancreaitis problems since the removal of my gallbaldder -- I am a

non drinker so the pancreatitis is ideopathic -- maybe gentic link --people

with diabetes on paternal side but I do not kknow if that is a related factor

-- have been on Disability for a year and getting ready to work again but

afraid i wont be able to handle it -- have not put a week together in a long

time -- mentally work is the best thing but not sure the body will cooperate

-- but if it does not work out i can return to disabilty ---sold ins 10 years

ago and bought a policy for myself -- best thing i ever did -- i have a

dorsal column stimulator at T-7 with a electrodes and a battery in my hip to

to help control the abdomenal and stabbing back pain -- I had 3 ercp 's all

giving me acute pancreatitis at two of them they cut my sphincter of oddi so

i have a dysfunctional biliary tract -- the the stimulator has kept me out to

fhte hosp since march -- had anerve block that gave me a hoorible flare and i

lost 30 ponunds -- can lose the weight but not he preferred method -- I gain

ed some back and my enzyme levels are never high unless i have an acut en

attack which so far has always been brought on by the procedures they have

done to me -- so my pain Dr. is my best ally -- i stilltake vicodin and

Zofran for nausea and pain everyday and they may put a sencond lead in in my

back for more pain coverage -- just been a hard road an most hosp stays i

have been on my own directing my care while being hook up to morphine pump

and NPO to let things settle down -- of cours ethe more stress then it gets

worse but life is stress so no way to get rid of that -- find that you have

less friends they get sick of the person who is always coming or going to the

hospital and gettting some Doc's who make you think its in your head --- I

would like them to just spend one week with what i deal with and that would

shut them up -- my pancreatic specialists wants me to go to houston to a

motilily expert named Dr . Mathias a t Columbia Hosp for women -- supposedly

he sees eople from all over the with similar stories -- was suppose to go Nov

13 -14 but need to postpone -- need glucose tolerance test first and then he

does an electrogatrogram -- sort of like an ECG but for the GI tract --

afraid he will leave me feeling like they cant be sure and that always messes

with my head. Not sure the journey is worth it -- will it do more harm than

good --no way to know --My Dad is a retired surgeon with Parkinsons and i

manage his and my mothers care --she has dimensia and is bipolar --- so i can

see thing sfrom doc side but i ask a lot of questions and they dont like that

but I do it anyway and if they are not willing to come down off there

pedistal then they are not worth it. Anyway --sorry to be so whinny , but

trying to tell my story -- i think you get the picture -- glad to know there

others to bounce things off of -- and share the painful winding road

Take Care, Clare