Re: Laurie - muddy the waters any time - I find it helpful

[Guest guest]

Laurie,

I don't think you need to worry about 'muddying the waters' in regard to

your explanation of small duct and large duct pancreatitis. it is obvious

that even the medical community uses the terms to mean different things at

different times. I think you did an excellent job in explaining, even going

so far as to explain how physicians may use the terminology in different

ways for different situations. It can be a lot to absorb, but I think you

did a great job in explaining it in simple terms. As we all know, dealing

with cp or even acute pancreatitis that may or may not have progressed to cp

is a very frustrating state. We can go to 15 different doctors and

possibility get 15 different opinions on what's going on in our wacky

bodies. I think all of us with cp have learned that medicine is far from an

exact science. I used to be so naive as to think that when something goes

wrong in the body you simply go to the doctor, he examines you and perhaps

does a few tests and wallah - you find out exactly what is wrong and what to

do to make things better. Little did I know just how infrequently it really

works that way. There are 'gold standard' tests for most any health issue.

People think if the test doesn't show a problem then you can know for sure

the problem the test was supposed to show is totally ruled out. We all know

that is not the case. It is especially the case with cp, but it's also the

case with so very many other health problems. If we really allowed

ourselves to think about all the things that can go wrong with our bodies

that are missed over and over by even the most advanced 'gold standard'

tests, we'd probably live in a state of constant fear. In my case, the

doctors have been wrong initially with so many of my illnesses that I often

find it hard to trust doctors and the tests that are done. thankfully, I do

believe I have a wonderful team of doctors at this point that I have a great

deal of trust and respect for. It took a long time to get to the right

doctors, though. My cp is complicated by several issues. One is that I had

a roux-en-y gastric bypass (weight loss surgery) in Dec 2001. I had it

mostly for weight loss but also because my stomach wall was being damaged by

constant bile 'refluxing' back into my stomach. At the time I had the

gastric bypass my GI (not my current GI) was insistent that my attacks of

acute panc throughout 2000 were just a fluke and that my continued pain

under my right rib and through to the back was caused by the constant

inflammation in my stomach from the bile splashing up into the lower part of

my stomach. For those who don't know - bile is never supposed to be in your

stomach because it is a very caustic substance. The GI swore to me that my

continued pain had nothing to do with my pancreas despite the fact that it

was in the exact same place as the pain I had with the acute panc attacks.

The only difference was that after a year of many attacks severe enough to

warrant hospitalization and even more that sent me to the ER, around Feb

2001, the pain was no longer severe enough to warrant going to the ER.

However, the pain was still there pretty much 24/7. I had just learned to

deal with it and tune it out as long as it wasn't too severe. Anyway, when

I felt having the roux-en-y gastric bypass would be a two for one deal since

it would allow me to lose weight and would also take care of the gastric

bile reflux (the bottom part of your stomach is separated and no longer used

so the bile can no longer splash back into your stomach). I had the gastric

bypass in Dec 2001 and for me it was definitely a good decision. I had no

complications and a speedy recovery. However, less than 2 weeks after the

surgery, I realized that the GI had been incorrect about the cause for my

continued pain under my right rib/through to the back. I was definitely

still having it after the gastric bypass. At first I tried to tell myself

it wasn't the same pain and it was probably just from healing from the

surgery. However, by Apr 02, I strongly suspected that the pancreas had

been the culprit all along. The GI ordered an MRCP in April which was fine.

He did an endoscopy which confirmed that my new 'tiny' stomach was very

healthy with no inflammation at all so we had definitely taken care of the

gastric bile reflux problem. That was good because the GI had told me that

the gastric bile reflux was severe enough (prior to the gastric bypass) that

at some point in the future it would be very likely for the bile to cause

substantial damage to my stomach wall lining. So, at least that's one

problem I no longer have to worry about. Anyway, my whole point for talking

about the gastric bypass is that I can no longer have a complete ERCP

because my insides have been 're-routed' and the tubes designed to do ERCPs

are not made for post gastric bypass routing. I've had 4 ERCPs since I

started back having 'documented' attacks of pancreatitis in July 2002. Each

one was far worse than the 3 ERCPs I had back in 2000, though those were

pretty awful. 3 were done by my previous GI in Birmingham and he is supposed

to be 'THE' ERCP guru in the south. The 4th was done by a GI at Mayo Clinic

in Rochester. I was awake during the entire ERCP despite 400 mg of demerol.

It was the most horrible experience of my life. I was literally screaming

at the top of my lungs (the best you can scream with a tube down your

throat). I could feel every move of the tube inside my belly and the pain

was indescribable. The nurses were holding down my hands so I couldn't pull

the tube out and the doctor was saying he was sure I would not remember any

of what was going on. WRONG! I remember every single horrible second. The

worst part is that they were never able to view my pancreas on any of the

post gastric bypass ERCPs. They could get only to one end of my common bile

duct, so the ERCPs told the doctors absolutely nothing!

Obviously, I will NEVER consent to another ERCP. The doctors think my cp is

at least partially autoimmune in nature because I have so many autoimmune

diseases. they also think I may have SOD and that something goes on to

block the flow of bile at least temporarily when I have flare.

Oh, and to further complicate things, I also have autoimmune liver disease

(specifically autoimmune hepatitis) and both the meds for AIH (imuran and

prednisone) can actually cause pancreatitis. However, without treatment,

the 10 year survival rate for AIH is only 10%. So, not taking medication

for AIH is not an option. Thankfully, I was able to stop the prednisone in

March except for a time or two when I was in the hospital with panc flares

and my liver enzymes shot up to the 700+ range (they should be less than

30). Anyway, another possibility for the pancreatitis is that the damage to

my liver helps to obstruct the flow of the bile. Oh, and just to make it

fun, we'll add systemic lupus to the mix and lupus can also cause

pancreatitis.

So, needless to say, nothing is straight forward with me. I just wanted to

thank you for taking the time to explain the terminology large duct and

small duct pancreatitis as well as the many other issues you have taken time

to explain.

Weston

w@...

Alabama State Representative

Pancreatitis Association International