Is the test different for acute vs. chronic pancreatitus?

[DigitalMan]

We are still trying to find the cause for my wife's attacks of massive upper abdominal pains that are below the rib case in the front and radiate around the back. Every time she has gone into the ER they have done blood tests and none of them have shown pancreatitus. She has had two ERCP's and both times they gave her pancreatitus and the pain felt identical to her attacks. In those cases, her levels showed she did have pancreatitus, but not any other time. I thought I may have read somewhere that the test for acute pancreatisus won't show chronic pancreatitus, or vice versa. Is this true? What tests do they do to test for each? I'm wondering if she has chronic pancreatitus and they have only been testing for accute all along of something like that.

Thanks,
Guy

[Addie]

I beliveve it was my posts saying I had an ERCP years ago and the diagnois was SOD stemming possible from the injectable material they used during this procedure. (Narcotic)  They stated this was seen on the 45 minute film.  After this report in 1990, they wanted me to go to Racine, Wisconsin to see the SOD specialists there and have surgery.  I did not go as I was fearful of the unknown and of a fairly new procedure.

These attacks are horrid but I watch everything going into my mouth and STAY away from all narcotics as these are the biggest triggers.

[Suncita]

Hello everyone:

I have just been diagnosed as having chronic pancreatitis and I have to ask what may seem to everyone as a stupid question:  Is smoking allowed to patients with this condition?

Suncita

[seashoretracks]

Thanks for the enzeme information.  I did not realize that taking it with food helps prevent pain.  Is that something your Dr. has to prescribe?

[seashoretracks]

Thanks so much for the response, that helps a lot.

Right now I am not eating much, because of fear of pain.  I miss so many things, I'm worried about even having a bite.  I especially miss anything peanuty (or any nuts) or chocolate.  I also miss being able to go out to eat like a normal person.

I was overweight, but that is melting fast (too fast).  I usually have to fight to lost weight, so this is scary.

Of course the Dr's have nothing to say about the weight loss and absolutely no advice on what to eat.

I usually avoid caffine anyway, but would like a cup of decaf coffee once in a while.  I am enjoying decaf unsweetened ice tea.  Sometimes I add splenda.

Taylee - That's hard with the 50% statistic on the ERCP.  I still wonder about scar tissue.

[Nanny]

I don't know if I mentioned this before, but I do take pancreatic enzyme supplements (Ultrase) with each meal and snack.  I wouldn't dare eat any of these "treats" without my enzymes, because that would cause pain!  Coffee, though, is without enzymes, as are juices and anything else that is totally zero fat.

Nanny

[taylee]

Nanny,
You are right on part of your response to my posts, but I have not had the ERCP years ago,and have not had it to diagnosed as yet with an ERCP. What is correct is that I have had all the tests, including 2 different amylase and lipase levels, which were 91 and 17 respectively. The other one, the amylase was in the 70's. They have told me those levels are fine, and would not think I have had pancreatitis or I would have really "known" it.
As if I wasn't sick enough.
I do watch everything I eat, mostly, I don't eat much at all because I don't want to suffer. I was always thin, but now I have really nothing left to lose.
I worry about pancreatic insufficiency and when I expressed that concern to a doctor last year, he thought I was a hypochondriac and to stop worrying about my pancreas so much.
Now I am seeing a top guy who is the director of the pancreas foundation and he hasn't mentioned it, just that I may have SOD type 3, pain only. And that cutting usually doesn't resolve the pain or problem in 50% of the patients.
So , that is my story, once again, I sound like a broken record.
Thanks,
Taylee

[aniee1]

Hi
I have changed my diet drastically. I consume no more than 20 grams of fat a day. I eat alot of veggies and fruits and drink only water and applejuice and one cup of coffee in the morning. I haven't had a glass of wine in 6 months. I gave up smoking 4 years ago. I've switched to Lactose-free dairy products. I get enough fiber, vitamins and minerals daily. I don't know what else to do.  It was the spasms in my common duct area that night that caused my toes to curl downward. The spasms happened the same time as the toe curling. There must also be some nerve entrapment. I have a large scar in that area from the gallbladder surgery. It may be possible that adhesions are also playing a part with this pain. The stone that caused all my problems years ago was located in the bile duct.  It was a servere attack that brought me the hospital the first time but I had no insurance and they didn't know what caused it at first so I waited 2 years. It eventually got to the point I was living on baby food.  It was dumb, huh! But I had four children to support and couldn't afford to be out of work.  Live and learn.........Aniee

[Nanny]

They "say" that refined sugars are not supposed to be good for pancreatitis, but I do cheat with low fat or no fat products, in moderation.  I love jelly belly's, and strawberry twizzlers....I know it's not supposed to be good for us, but gheez, you've got to have some fun on this low fat regimen! Those are something I will treat myself to once a week or so.   I also occasionally treat myself to Healthy Choice chocolate ice cream (Rocky Road), it's got 2 grams per miniscule serving (1/2 cup).  So far this occasional cheating has not seemed to make my pain any worse.

I eat lite yogurt all the time for lunch, it's no-fat and doesn't seem to bother me, and helps keep my weight balanced, since the enzyme supplements do cause weight gain.

Coffee is also another no-no, but I've been addicted to it since my teenage years, and it's hard to give up, so I've reduced consumption of that down to two cups in the a.m.  On days that my pancreas is acting up, I don't drink it at all.

[seashoretracks]

about the diet - do you know if once in while it is OK to eat lowfat or nonfat sweets?  What about yogurt does that cause a problem?  Also is coffee OK?  What about some type of non-fat chocolate dessert once in a while?

[Nanny]

I know you've had a lot of tests done, but have any of these doctors ever checked your amylase and lipase levels? Sometimes they'll show elevation with pancreatic problems, but not always.   LFT's are liver panels, right?  I was reading back through some of the posts and also saw that there was the possibility of SOD with you after a procedure several years ago, but they thought it was caused by one of the chemicals used in the procedure and wasn't accurate?  Was that your comment?

I guess I'm just mystified why the doctor's wouldn't even consider the possibility of chronic pancreatitis after hearing about your symptoms and the mention of possible SOD problems in your past.  There are other procedures that can be done to get a firm diagnosis, and sometimes you have to keep looking until the cause is found.

Have you done anything on your own to make it easier for yourself, like a strict low fat diet, abstaining from all alcohol, staying away from fried foods, etc., and has any of that made any difference in how you felt?

Just trying to help you find some answers.  And of course there is always hope, even if it is chronic pancreatitis.  I've got CP, it's not the end of the world, it just means some adjustments to diet and lifestyle, and it means finding a really good, compassionate gastro to recommend the proper treatment and pain maintenance to make things easier.
Nanny

[taylee]

Yes, Ainee, I have the exact same thing happen to me during the painful attacks that you described. I have severe charlie horse like feeling in my right leg all the way down to the toes and they curl under. I told my dr's about the leg cramping during an attack and they dismissed it as nerve pain, not related to the attack.
I too, have had the pain become more constant in nature and less cramping in the leg and toes. But my belly blows up like a balloon after eating the second meal of the day and for the remainder of the day it keeps bloating.
I have asked over and over about chronic pancreatitis and not a single doctor thinks I could have it due to normal LFT's.
I sit here at a computer, reaching out to you guys, because I have gone before so many doctors and have just suffered like an animal without relief.
I wish I could find an answer too. I feel sorry for everyone going through this misery. I want a life again, and to get rid of the pain.
If it was chronic pancreatitis,would there be any hope? I am losing my resolve.
Taylee

[Nanny]

These previous attacks do sound like SOD attacks, and what is happening now sounds like pancreatitis problems.  The bloating after meals and raised liver levels are both symptoms.  It is good that you are seeing a specialist, I would suggest that you tell him about the problems two years ago and what is happening now.  Ask the specialist to consider SOD and arrange to have you tested for it.  The best diagnostic tool for this would be an ERCP with manometry to check the pressure on the sphincter.  It is not always an easy condition to detect.

Do understand that with chronic pancreatitis many patients do not always have elevated amylase and lipase levels anymore during an attack.  My levels do not elevate during milder attacks, only during acute attacks and then not always.  The doctors may need to do further tests to make a firm diagnosis.

As far as the numbness and cramping in your toes...these SOD attacks can be quite severe, it may be that during the attack your clenched your toes and may have pinched a nerve, sort of like a charley horse affect, and that those nerves are still pinched or are still bruised.  I wouldn't worry too much about that at this point, it they should return to normal with time.  You need to be more concerned with the pancreas problem right now.  Good luck.
Nanny

[aniee1]

What you said about the "SOD" attack causing pressure and pain in the breast bone area and is servere describes the attacks I had two years ago. I was hospitized with chest pains that would come and go. The doc thought it was angina attacks but all the tests and there were many showed no signs of problems with my heart. These attacks went on for about 9 months and only Nitro would ease the pain.  They would happen all times of the day...some woke me out of a sound sleep.  Those pains have stopped but a new pain has emerged that is constant . It is below my right ribcage and radiates to my back. Two weeks ago, I woke in the middle of the night with severe spasms in the common duct area...Wham! Wham! Wham!...It took my breath away and also curled the two toes on my right foot downward. It seemed as though that whole right side from the rib down to my toe cramped. Have you ever heard of anyone having that sensation before. Now my pad underneath those toes are numb.  I also bloat severely after eating a meal with fat in it and the pain is only relieved by leaning over the couch. I have changed my diet drastically. I had my gallbladder taken out years ago..I'm being sent to Emory in Atlanta 'cause the doctors here can't help me.  What do you think about all this?........Thanks.......Aniee

[Nanny]

P.S.  I just read your earlier post about the strength and time of night of your wife's attacks.  When she had her ERCP's done did they think to do an ERCP with manometry to test her sphincter pressure?  Her attacks sound very similar to Sphincter of Oddi Dysfunction (SOD) attacks, and this is the only way to test for this particular dysfunction.  It often accompanies pancreatitis and can be difficult to detect.  When the person has a SOD attack, they feel a lot of pressure in the chest and sternum area, along with abdominal pain.  The attacks are very sudden, they happen often while sleeping, and are horribly severe.  

One of the frequent poster's on this board, I believe her name is Lor, suffers from SOD.  If she sees this she can give you some more firsthand information.

Hope this helps.

Nanny

[Nanny]

There are several different tests or procedures that can be done to show pancreatitis, acute or chronic.  No tests are definitive for only one or the other.  Tests for determining pancreatitis are, blood tests, stool tests, triglycerides tests, Xrays, ultrasounds, endoscopic ultrasounds, the secretin stimulation test, the bentiromide test (rare), CT-scans, MRCP's, MRI's and ERCP's.  

Your wife has tested positive for acute pancreatitis (I assume) by the ERCP's, in addition to her elevated amylase and lipase levels.  It appears now her condition has gone to chronic pancreatitis, which often happens after one or more acute attacks.  The same tests are used to determine this, but very often blood tests are inaccurate in determining chronic pancreatitis as the enzymes no longer elevate with an attack due to the damage already done to the pancreas.  Many of us with chronic pancreatitis do not show elevated amylase and lipase levels even during an attack, due to this deterioration, and other tests should be done if a correct diagnosis is necessary.  Most knowledgeable gastroenterologists who specialisze in pancreatic diseases are aware of this, and do not place as much emphasis on the amylase and lipase levels as an indicator of chronic pancreatitis.

I hope this answers your question.  If you need more information, please post again or email me.

Nanny
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