Tara,

I am confused what is a chronic disease? Your Pancreatitis that they said was in your head? Or something else? Did they do any lab work on you? What did your labs say?

I'm sorry you are in pain and so discouraged.

TS

I have been diagnosed with chronic pancreatitis based on previous attacks and enzyme levels.

But this time, my levels were normal. While several of the doctors said that your levels can be normal with chronic pancreatitis, the GI dr that was on call said you could not. So, I asked about the fact in the past it was elevated. He said that did not mean pancreatitis either, it could be an issue with the kidneys or so on.

And so, i just happened to have one of the "imaginary" attacks at a time when something was wrong with me to make my enzymes elevated.

I mentioned that the attacks were daily until I had my gall bladder taken out.

He said that the attacks and pain had nothing to do with my gall bladder, the pain was psychosomatic and they incorrectly removed my gallbladder. (this was 10 years ago. I said, that is not true, that when they removed the gallbladder there were stones and the gallbladder was so inflamed that they almost had to cut me all the way open.

He said, well that was just coincidence. That The pain had NOTHING to do with the gallbladder.

I said it did. Once removed the attacked greatly decreased.

He said it was a placebo affect and I expected them to slow down.

So, basically this doctor is saying the nausea, vomiting, and abdominal pain radiating to the back, which is worse based upon what I eat is all in my head. It is psychosomatic and I need to see a shrink.

The other doctor involved, the one who released me, said i have chronic pancreatitis, and that it is a chronic condition which they can do nothing about in the hospital as it is not a life threatening condition and that I dealt with the pain for 20 years so I can continue dealing with it.

Also, the GI said there is no way this could be chronic pancreatitis because it has been 20 years and if it was I would have no pancreas left, it would have shriveled up and be completely gone.

I said, my grandma had pancreatitis and she is 90 and hers did not shrivel up and disappear. He said, of my Grandma who lives 8 hours away and he knows nothing about, well, she does not have pancreatitis. People just throw out that term.

Anyway. I am home and angry and confused.

The doctor that told you that you can't have pancreatitis unless your amylase elevates is an idiot. Wow you need a better doctor. Mine rarely elevate and if they do, it happens 3 to 4 days after the onset of pain. Also, I've been doing this for more than 40 years and although I only have about 10% of my pancreas still working... it's still working. Before I was diagnosed by a competent doctor I was told it was "all in my head" too. I wish they had been right, but unfortunately, I proved them idiots. Hang in there, you just need to find the right doctor.

Paula, I know deep down in my heart that you are right. I know, this is for real. But when you get beaten down by a doctor like this, it really eats away a everything you believe to be true.

To everyone struggling, fighting to get answers or to get the right treatment, hang tight and (((hugs)))

This is how I feel right now.

http://bunnyears.tumblr.com/post/6807253359/feeling-as-if-i-am-left-out-in-the-storm-with-no#notes

Tara,

Do you have a file that you keep with your past records on your pancreatitis? I have learned to keep mine ready to go with me in case I have an emergency and need to go to an ER where they do not know me.

One look at my file and they know what to do. That is all I can say to help you at this point.

Additionally,when you're feeling better, I would get copies of those records and forward them along with a letter naming the doctor who told you that you did not have pancreatitis and send it to the president of the hospital you were at today.

Big hugs,
TS

OMG! I am so sorry!! What IDIOTS!!!! The more damaged your pancreas gets the enzymes DON'T RAISE anymore. That is so upsetting!!! I know how much this sucks, Tara. Please don't let it get you down. I've dealt with those MORONS, too, in the past. I'm lucky to have finally found a good group of doctors that are helping me but it has taken me almost a decade to do so! I'm praying for you. This is absurd, we should not have to be AFRAID to go to the ER that we are going to have to put up with this kind of ABUSE from people who are supposed to be taking care of us!! I'm just fuming that you got treated this way!!!

I hope you can find another doctor who can help you. Someone who will be an advocate for you at the ER and hospital.

So many of these doctors are completely incompetent, pompous, mean, rude et al... A%& HOLES!!!!!!! I have had cp for nine years and most of the time in chronic pancreatitis cases the enzymes remain completely normal. I am still producing insulin and enzymes (thank you God!) but my pancrease is shriveling up and dieing! From all the research I've done myself and from the information my specialist gave me, 99% of the time cp can only be diagnosed through an mrcp with secretin injections. All 5000 (ok, exaggeration, feels like that many) mrcps only looks inside the organ. Also, ercp's can and many times do cause the pancreatitis and just make it worse. Plus all that messing with the pancrease decreases chances of having enough viable islet cells for a "Total Pancreatectomy With Islet Cell Transplant. The a holes don't tell ypu that as they send you in to invasive surgery! Hell, the idiots probably don't even know what it is! It is so absolutely infuriating that people with dabilitating illness have to put up with all the incompetency on top of it. I think almost all of us were told it was in our heads at one point, probably more! I am going to look up my favorite web site for info and get back to you with. Hang in there, we're all here for you. Luv&hugs, heather

Here is a place that has a lot of accurate information. All they do is the pancrease.

University Medical Center
1501 North Cambell Avenue
Tuscon, AZ 885724
520-694-0111
Www.pancreatitiscenter.org

Even if you are too far away from this center, this site has a wealth of information! Happy reading. Luv&hugs heather

Thank you so much Heather. My regular GI, who I was unable to see in the hospital is still certain it is CP, so, I am going to try and get a referral to a specialist. While AZ is too far away, I will read over the information and go to University of Kentucky were they specialize in pancreas issues.

Thank you for the information.

Thanks Heather, wonderful information to take to my GI. So far, he is still fighting for me... a fact I found out after my hospitalization.

So hopefully, he will consider checking my pancreatic function or sending me to Kentucky.

That sight has great information that most doctors need to read, so they are not telling patients that their pancreas looks normal on an xray so nothing is wrong and they just need to see a shrink. Seriously. How many people listen to them and don't fight for answers? Saddens me to see such arrogant, ill-informed doctors screw with people's health.

Thanks again.

Hi Heather,

I have a friend who has had pancreatitis for years. She had to had the mid section of her pancreas removed because she had a benign tumor. Forgive me for not knowing the name of that procedure, I know it's not the whipple one. She is now diabetic. But she has told me horror stories about her treatment at various ER's.

She told me to always carry a copy of my medical files with me when I have to go to the ER. ... Because they don't believe you when you go. She also has a relationship with her normal surgeon and GI guy and she calls them on the way to the ER. Even if they do not have privledges at the ER she is going to, they call ahead for her. She has been blessed with a terrific team to help her, but they are not local. She has to drive three hours each way to see them.

I do not have a team like that, nor do most. I hope to find a team that will fight for me and make sure I get good treatment in the future. I now intend to ask any new doctor I see, if they are willing to do the same for me. If they are not, I have no use for them since this disease is one in which most of the treatment is done on an emergency basis in an ER.

Just my two cents. Maybe I'm going about it wrong. I don't know but I'm trying to make sense of it all.

I meant those last remarks for Tara... sorry.

Gosh I am so sorry you have been treated the way you have, its really disgusting. Big hugs xxx

So sorry you had such horrible treatment. My enzymes very rarely raise anymore and if they do it is usually a slight elevation. I went through years (about 14-15years) of being told I was nuts and needed therapy and all I had was IBS. I finally found a good primary doctor who believed me and seen the pain and other symptoms I was having. He gave me a referral to IU Med to the pancreas specialist group. I had my first appt with them and they scheduled an ERCP the following day and sure enough I had an angry pancreas. They did a sphincterotomy on my bile and pancreas ducts. Then started me on creon. It hasn't help much so now they are considering other things. But I do have a copy of their records that I take with me to the hospital if I can't manage it on my own during bad flares. This has helped tremendously and I don't get the your just a hypochondriac or med seeking response. I hope you can find a good doctor who is willing to help. If your willing or can travel (I know it's expensive and hard when you have a family to look after) I can give you IU Meds info so you can see about going there. They are supposed to be one of the best and I know they treat people from all over. They have a map in their office that shows where patients come from...other countries even.

Good luck and lots of hugs! I pray you get some relief soon.