chronic Pancreas pain.

[jeannie]

My husband has been having chronic pancreas pain for the last 2 years. He has had 7 ERCP's. His doctor is now saying that it is possible that he has sphincter of oddi dysfunction

[speck5]

I would just like to say watch out when after 12 years of ungodly pain you GI Doc descides to cut you back on your pain meds. I am in a living hell and can get no relief. and to beat it all the worse it has gotten with theenzymes tube feeding cox 2 inhibitors nothing seems to help but the pain meds you use to get. God Bless You all, for nobody really knows just the 24 hour intensity. Thank You all and just keep praying. thats the only way I get my help

[comments: from Monica 11/11/2000 did no]

this respond is to everyone related to the pangrea.
first think furst , you have to tell you doctor that you need
on immediately cat scan with dy meanig with contrast as soon you have the scan call you doctor go to him and then dipend where you are in the state let you doctor send you to a surgen immediately futher more let the norse set up  the appontenment for you they get faster appontment be very ash and persistent that you don't want to loose anymore time it as to be today the appontment. wantd you go to the surgen he will know excetly what it is. i'm telling you this because my daughter at the age 25 began to have pain in the center of her stomach after 2 weeks she call me that she could not take it anymore as soon i herad that i told her to get to the doctor immediately and i'm on my way to you home i said, by the time that i got to her she was back home and i ask her what did the doctor said to you? she goes upset stomach, immediately  i took my daughter in the hospital they give her pain killer and antacid but the pain was still there i ask the doctor are you going to give her a cat scan or MRI? AND HE respond to me no the staff left for the day, i said what about xray? and he said that i could do any one she got the xray show nothingthe doctor send my douther home at 3 am by 9 am i call her doctor telling him what  happen that we spend all night in the emergecy room, i said to him i need a referal for a cat scan  ASAP and he goes sure come in and pick up anything you want i went and i let the nurse set up the appontment for the suty the same day we went the same morning and as the girl began the ultra sound a gold stone showed as she goes futher up a cyst the size of on orange showed on the tail of the pangreas i alredy knew that somenthing was wrong the girl said to myu daughter old on i call the redialogist as soon i came i said is this the tail of the pangreas and he said how do you know? very rearelly people know what there is and i said i know i study medicine, any way immediately he order a cat scan with dy in the mean time i call her doctor grying and he said to me get the film as soon that you're done and come and see me i said ok we were done at 1:00 pm took my douther and go to him as soon i got to his office he said  don't worry the cyst is in the kiddney not on the pangrea and i reply the cyst is in the pangrea he repond it to me you do the mother and let me do the doctor, but anyway he said i'll sand you to a surgen the same day i said to the girl call the surgen see if they take us today and by 3 :00 o' clock we were at NYU HOSPITAL in new york city got there the surgen sees the scan and he said the cyst is in the pangrea,  well i told the surgen what the doctor said to me that i was wrong when i said that the cyst was in the pangrea . the surgen pick up the phone and call the doctor and said the cyst is in the pangreas now we have to find out if it contane cancer cells we need to draine the cyst and send it for test and in few day we should know the resoults. the reasons that my daughter had the cyst in the pangreas was that she had a gold stone the bile duck got blocked and the fluid was going up instead of down and thats why it formed a cyst in the pangreas. so' i'm saing to all of you do not take the doctor opinion follow up with surgen and bring a cat scan with you when you go so they have something to look at it

[glen meyer]

I HAVE CHRONIC PANCREATITUS STEMMING FROM PANCREAS DIVISUM, I HAVE HAD IT SINCE I WAS ABOUT 5, THOUGH EVERY DOCTOR I EVER SAW HAD A DIFFERENT IDEA OF WHAT IT WAS. IT WASN'T UNTIL I SPENT A MONTH IN THE HOSPITAL THAT THEY FIGURED IT MUST BE MY PANCREAS, AND ANOTHER SIX WEEKS TO FIND OUT WHY. WITH PANCREAS DIVISUM, YOUR AMYLASE AND LIPASE LEVELS DON'T ELEVATE, SO THEY HAD TO INJECT FLUID INTO MY DUCT BEFORE THEY SAW IT WAS SEALED. TWELVE YEARS LATER I STILL HAVE BOUTS WITH IT, BUT IN THE LONG RUN THE PAIN SHOULD GO AWAY AS IT DIGESTS ITSELF, THATS WHAT I UNDERSTAND ANY WAY. IN THE MEANTIME I'VE GIVEN UP ON TRADITIONAL MEDICINE AND AM NOW INTO ACUPUNCTURE, WHICH SEEMS TO HAVE DONE ALOT MORE FOR ME THAN THE SURGEONS AND DOCTORS HAVE. I ADMIT I STILL SPEND A DAY OR SO IN EMERGENCY EVERY MONTH BUT MY DAY TO DAY LIFE IS ALOT BETTER. IF YOUR DOCTOR DOESN'T HELP YOU, DON'T FEEL BAD ABOUT FINDING ONE THAT WILL, YOU LIVE WITH IT, THEY DON'T....

[coastTOcoast]

A related discussion, Chronic Undiagnosed Pain was started.

[CTReader]

A related discussion, ERCP risks was started.

[stephanie]

I am looking for information on pancreas divisum, particulary the symptoms.  Please share info.

[stephanie]

I am looking for specific information and symptoms of pancreas divisum.  I have chronic ULQ pain that radiates to the back.  Please email if you have info ***@****

[melba]

Very interesting reading.  I am just starting on investigational procedures to determine cause of severe pain under left ribs and across to middle and right side of stomach area.  I have hypertrophic myocardiopathy also so is difficult to discern at times if it is angina or other pain.  
Have had ultra sound so far and am in process of cat scan and further testing.  I agree...pain is not acceptable..Hope they can find the reason.  My MOm died at my age with esophageal cancer so am very apprehensive.  There is a lot of breast cancer, stomach cancer etc in that family.
The ultrasound shows "dilation of common duct"...
I can stimulate the pain be eating specific foods such as bagels.  Also have gerd so frustrated by this problem..
thanks,
***@****

[maggie]

has anyone out there ever had or even heard of esophagal spasms? I'm sure there's a medical term for them but for ten years I;ve been on the floor with them.  My gastro guy has done everythinh he can think of, run all the tess but in the end, no cure...just pain meds for the episodes.  this condition has run my life, missed work, don;t tend to socialize much, etc.  help.

[chris]

This site is amazing, just when you think you are on your own with this awful constant pain you can find so many people in the same boat. The awful thing is there are so many of us and the doctors are at a loss in most cases as to how to find the cause of it.
My story is very similar to everyone else.
I had URQ pain for over a year before seeing a doctor, he found my liver enlarged, 12 weeks later another check up showed the enzymes sky high, so I saw a Gastroenterologist.
At that time he had two problems to solve, what was causing the pain and the liver enlargement (he said it would not be the liver causing the pain as it does not have nerves to cause pain).
A liver biopsy showed severe fatty liver, was told to eat fat-free diet, lose weight and that will be fine on its own.
I lost 30lbs (5lbs a month for 6 months)and he said the liver would be thanking me for it.
The pain was another matter, I had an ERCP and a few hours later had my first case of pancreatitis, any one who gets this knows how devastating this is so I won't go there. In the last year I have been to the emergency room 13 times, admitted four times and life has been hell on wheels.
In September I had a CT scan and it was discovered I had pancreas divisium (a condition where the ducts in the pancreas are not formed properly at birth). They were looking for gallstones but found none.  It was also discovered I had a dilation of the bile duct(three times its normal size).  In November I was so ill with pancreatitis I lost a further 25lbs.  The next month I had an MRI done and there they find gallstones (I think the rapid weight loss caused them).  So March 1st 2000 they removed the gallbladder, end of story? NOT!!!
Three weeks after the operation, in which they found those ducts much larger than any tests showed, I am under the strong delusion that I still have post-operative pain (with the laporoscomy operation, pain lasts only a few days), but real life does not always smile on people and I am now waiting to see the Gastro man again to see if he can now find the cause of the pain again.
There is a lot of cancer on my mothers side, that is a worry.
Could it be the pancreas divisium?  Does that cause pain?
I can not sleep on either side because the pain gets worse, the pain is there 24 hours a day, gets worse when it feels like it(eating food can make it worse but even when I am hungry it can get just as bad).
Nausea is just as bad as before the operation too, the last two months I have managed to gain 5lbs, it was struggle, trouble is it has all settled round the stomach.
Is there an end to this???  I WANT MY LIFE BACK!!!!!
Anyone with anything similar can contact me at ***@****
I would love to hear from you.

[John M.]

Don't know if this is pancreatitis,been having pain under ribs
both sides for one year now,each spot about the size of a 50 cent
piece. never had these pains before,until i took sulfa antibiotics for prostititis for 2 mons.,pain started in the last
week of the antibiotics,pain go's back and forth but the same
spots,when it seldem does go away their both gone.lately,it just
feels sore like i did 100 sit-ups even when iwake up.(had ultrasond of pancreas/gallbladder,endoscopy,blood tests,liver
funtion,sig-endo,no blood in stool all normal)VERY FRUSTRAITING!
CAN SULFA ANTIBIOTICS CAUSE THIS TYPE OF PAIN? HAS ANYBODY TAKEN
ANYTHING LIKE THIS BEFORE THEIR PAINS (FIRST STARTED).all these
pains everyone is having has to start from somewhere.
             thank's for listening,JOHN M.

[sue]

Message for Teresa.  I suffered with chronic pancreatitis for years.  I am now pain free and living without my pancreas and yet I am not a diabetic because of a new procedure called an islet cell transplant.  Please take a minute to read my story.  It is on the address below.  You will need to type it in to access it:

www.insulin-free.org/stories/rebello.htm

Feel free to write to me at:  ***@****

[Teresa]

I thought I posted a question and i didn't mean to interfere on your sight.  If you have any comments I would appreciate them.
They still have not a clue on why my daughter is getting these attacks.  It's scares me because I don't know how long she can keep having them without serious problems.

Thanks

[Teresa Marozsan]

My daughter is 11 now.  However, she started getting pancreatitus when she was about 3.  She has been hospitalized 15 times.  Each stay is around 3 to 5 days.  The doctor's have ran several test, repeatedly and cannot find anything that would cause this.  She was doing well for about 2 years and then in Nov. 1999 she started her menstrual cycle and has been hospitalized 4 times.  She just came home today from the hospital, Feb. 7, 2000.  They still do not have a clue what is causing this.  If you have any suggestions or know of any new test that can be done, please help.

[tracy]

Hello all, I need some help, I recently had pancreatitis due to the Ercp procedure I had, now I have chronic pain in my ruq, back and hip, does any one know what this could be from ???? Please email me at ***@****. Thanks

[Greg Peters]

I don't know if my problem is pancreas related or not, but it sounds like it could be. In December of 1998 (after eating a lot of celebratory junk food) I began to have gradually increasing pain centered near the bottom of my lower left ribs. I went on a fast for about 10 days (February 1999) consisting mainly of water with small amounts of lemon or grapefruit juice mixed in. By the fifth day the pain was completely gone. I was pain free until December of 1999 when I started eating a lot more junk food than usual (just like I did in December of 1998). So I am fasting again to see if I get the same results. I am an experienced faster, so I recommend that anyone trying it get some advice from a knowledgeable health practioner before doing it.

(Staff, if you need to write me, I am at ***@****)

[sue]

I suffered with chronic pancreatitis for years.  I was very fortunate to have a doctor who diagnosed me as having chronic pancreatitis from pancreas divisum (I was born without the main duct in my pancreas).  For full details, please read my story on the web:
http://www.insulin-free.org/stories/rebello.htm

If you wish to correspond please email me at:
***@****

I know what you are suffering with.  I was hospitalized for 12 times totalling 86 days before I had a total pancreatectomy and an islet cell transplant.

[jean]

Any other symptoms?  I am having same thing and have ruled out GERD, diet and ulcers, bowel. Don't drink, don't take medications.

1) constant pain radiating out mid-back (worsens when I lie down)
2) bloating
3) change in stool (size/colour) but no constipation, ibs nor diarrhea
4) unexplained weight loss
5) odd skin odor
6) swelling out the left upper back (just below shoulder blade)
interferes with breathing only when I lie on it (nothing found in lungs)

No sign of pancreatitis, nor lesions on Chest X-ray nor CT Scan.

My gall bladder was removed many years ago so I suspect that makes tracking down signs/symptoms a little more difficult. (or so it seems).

[jeannie]

My husbands pain is constant. Lately nothing seems to help. It doesn't seem to matter what he eats. His doctor has recommended he see a surgeon. Which is really scary. He has been in the emergency room about once a week with severe pain that his medications are not helping. The pain goes through to his back. Every blood test he has comes back within normal range. I am hoping that the surgeon has good news for him. My main concern is cancer, even though there is no sign of it in the blood work. Any further information would be helpful. Thank you Jeannie

[Kathy]

I had pancreatitis 3 years ago.  Since then I have had pain in the mid epigastric region of my abdomen.  Under my ribs and by the xyphoid process.  Is this where your husbands pain is?  I no longer have elevated lipase/amylase levels, all I have is pain.  Especially after eating (especially fatty foods), but sometimes any food.  I am on Creon, and it helps some, but here is where the weird part of the pain comes.  I can stimulate the pain by doing a lot of bending.  Does your husband or anyone else ever experience this?  Or am I just crazy.  The pain is a milder version of the pain I had the night of the acute attack, but all my tests are coming back negative, so I just wanted to hear from another pancreatitis patient. If I could avoid eating or bending I bet I could get rid of the pain, but I've yet to figure out how to do this. ha

[HFHSM.D._gastro-RF]

Dear Jeannie,
Your posting allows me the opportunity to provide some general comments on pancreatitis.  Pancreatitis means inflammation of the pancreas.  Acute pancreatitis refers to a condition in which there is sudden onset of abdominal pain.  In North America the most common identified causes are common bile duct stones, alcohol use, and  abdominal trauma.  There are other causes but they are not common.  Included among the unusual causes are drugs and idiopathic.  There are certain medications (e.g. sulfa drugs, lasix, tetracyclines, estrogens. thiazides), vasculitis, infections, metabolic causes (high calcium, some patients with very high triglyceride levels)and genetic conditions.

Chronic pancreatitis refers to a condition in which there is irreversible structuraldamage to the pancreas.  A physician may see pancreatic calcifications or changes in the pancreatic duct by ERCP.

There is a conditi0on of chronic recurrent pancreatitis.  These patients have recurrent attacks of pancreatitis but do not have structural abnormalities.

Sphincter of Oddi dysfunction is a condition in which the opening of the pancreatic duct (the sphuincter of Oddi) does not function properly.  Patients have recurrent attacks of abdominal pain and slight elevations of pancreatic enzymes.  The diagnosis can be made by measuring the pressures in the sphincter (Sphincter of Oddi manometry is the formal name for the test.  Treatment consist of cutting the sphincter during the ERCp.

This information is presented for educational purposes.  Ask specific questions to your personal physician.
HFHSM.D.-Gastro-RF