Can't get diagnosed

[Guest guest]

Hi all. Been a while since I've posted. Just wondering if anyone

else has had a similar experience and/or has any advice. I've been

ill for 2 1/2 years now...pain after eating, espeicially fat and

meat, etc...on the left side. I've lost 20+ pounds. Have had just

about every test imagineable...they tell me I don't have Chrones,

intestinal disorders, gall bladder trouble, etc etc etc...I've been

told I MAY have early stage chronic pancreatitis but that sometimes

it takes years to diagnose and I'll just have to wait. I cannot work

and I am only 30 years old..been sick since I was 27. I eat bread,

fat-free cookies, rice, and anything I can find that is fat-free.

Lots of carbs and sugar to keep up my weight, which is hard. I had a

fecal fat test come up positive a while back and then a couple

negatives, though I was told I am nto able to eat enough fat now to

test accurately. They tried putting me on Pancreatic Enzymes and I

had the most severe attacks I've ever had while on them, so I was

taken off. I am on nothing now. My doctor (a GI specilist at a

major hospital in Philly) says to consider ERCP but also tells me it

has a greater chance of making me sicker than it does of making me

better. He says I may get to the point where my quality of life is

so bad that Ia m willing to take that chance. Other than that, he

periodically tries different drugs, but I am at the point where I

don't take everything he suggests becasue pills also give me attacks

Any thoughts or advice or similiar situations from anyone here? I am

trying to keep my head up but my life has been destroyed by

this...can't work, eat, participate in holiday meals, etc...and with

no diagnosis...it's very hard. I'd appreciate anyone who has some

advice or comments.

Thanks so much,

[Guest guest]

Hi ,

I can't help but empathize with you as my story is very similar.

the only thing that I can offer you for consideration is that at what

point are you going to consider your quality of life so low that the

risk of the ERCP may be worth it? I guess I mean that it seems

as if you are at that point right now. And, in many of our cases, it

was the ERCP that found the diagnosis and attempted a

treatment even after all the other testing procedures were done -

including CT scans, MRIs, USs, even exploratory surgery. If the

ERCP is still not advised by your doc, you may want to consider

an MRCP - this is less risky but has a chance to show what

could be wrong with your pancreas.

In my case, I had every imaginable test / procedure done over

three years - including having my gall bladder removed - it wasn't

until an experienced GI endoscopist did the ERCP that my

pancreas problem was found. Unfortunately, it may have been

too late - that is, the delay in treatment may have caused the

blockage in my duct to cause permanent damage to my

pancreas. That is why, there is risk too, in waiting too long to do

the ERCP. There are no easy answers, but it got to the point with

my pain that I knew that it was either the ERCP or death....there

was no way that I was going to live the way I was.

No easy choices but it there are lots of things to consider. Yes

there are risks....but if your symptoms are so severe now that life

is not worth living, then those risks are negligible and there are

many ways to significantly reduce those risks that are there.

If you believe that it is not time to try the ERCP, maybe get into a

very helpful pain management doctor - one who is willing to treat

chronic pancreatitis. Sometimes a very good pain management

program can help you get control of the pain, break the on-going

cycle and give your mind and body a chance to adapt and heal.

Laurie