pancreatitus

[chad]

I am a 33 year old male. About two years ago I was hospitalized with acute pancreatitus (pancreatitis) from drinking. My amylase were 220 with all other functions showing normal. within 24 hours my amylase were at 110 which I was told were at the high side of normal. I should also mention that I have generalized anxiety disorder which I have been taking buspar about 20 mgs a day and zanax in difficult situations . At the time I left the hospital 3 days later my amylase were at 23, they said anytime you have pancreatitus (pancreatitis) it deos damage to it. they never did any scans. I been in to have my amylase checked every 6 months and they have never been over 50. Althogh I have drank since then  on very few occasions, I haven't had a drink for the last 6 months. Everybody told me this was such a painful experience. I never had the pain they were talking about, I had body aches and I vomited for a couple of hours, and that was about it. Is there any safe amount of alcohol that one can consume once they have had pancreatitus (pancreatitis)? Due to my anxiety, I excessively worry about this daily, and do I need to worry about getting pancreatitus (pancreatitis) back? Could you please tell me the level of amylase in a severe case of Pancreatitus (pancreatitis)? They told me that I had a very mild case. In a normal person that has never had Pancreatitus (pancreatitis), if they were to drink, would  their amylase be risen? Why can some people drink their whole lives and never get this? Is it hereditary?
Please note that when I first was diagnosed with this, I was having some personal problems, and I was drinking excessively the week before.
Any information would be greatly appreciated! I have talked with numerous doctors about this and have been given conflicting information, I would like to learn as much as possible about this, so I don't get it back.

Sincerely,
Chad

PS Does smoking play a role in this?

[HFHSm.D.-Gastro-rf]

Dear Chad,
In the United States, alcohol is a very frequent cause of pancreatitis.  The alcohol alters the secretion of pancreatic juice which results in the inflammation recognized as pancreatitis.  Unfortunately, there is no amount of alcohol that I can tell you is safe, i.e. will not cause subsequent attacks of pancreatitis.  We know that there is individual sensitivity.  This means that an amount of alcohol that may not cause me problems may cause you to have severe pancreatitis.  We also know that the more one drinks, the greater the possibility of developing pancreatitis.

It is difficult to tell you how much damage there has been to your pancreas.  The height of the  enzyme (amylase)elevation is a poor correlate or predictor of the degree of total or irreversible damage.  In gnereal, however, low elevations of amylase that occur only once are less likely to forbode chronic damage (assuming that you are not still drinking).

With regard to the issue as to why you developed pancreatitis and not someone else who drinks an equivalent amount, there is a variability in th eeffects of alcohol.  Although genetic (hereditary) causes for pancreatitis have been identified, it is currently uncertain whether alcohol-induced pancreatitis has a genetic component.  

Smoking is bad but should not cause pancreatitis.

[kim]

Chad,
  Hi! I am a 25 y/o other of one and an armywife. I was recently hospitalized for a severe case of pancreatitis and was told if I did not get to hospital when I did I would have died by the next day bc my levels were dangerously high. It all came about on friday afternoon of sept.24th. I got an attack that was 10x more severe than my gall bladder attacks. Which I had my gall bladder removed in July99 by AF doctors . I had to have an immediate ERCP done and it did well for me. My drs informed me that they widend my bile duct going to pancreatic duct and should not go thru this again. I was on ice chips for 5 days straight and developed pnuemonia (pneumonia) ib hospital. I was hospitalized for 10 days and I am doing good right now besides the pnuemonia (pneumonia).Wish you the best....kim

[kim]

Chad,
  Hi! I am a 25 y/o mother of one and an
armywife. I was recently hospitalized for a
severe case of pancreatitis and was told if I
did not get to hospital when I did I would
have died by the next day bc my levels were
dangerously high. It all came about on friday
afternoon of sept.24th. I got an attack that
was 10x more severe than my gall bladder
attacks. Which I had my gall bladder removed
in July99 by AF doctors . I had to have an
immediate ERCP done and it did well for me. My
drs informed me that they widend my bile duct
going to pancreatic duct and should not go
thru this again. I was on ice chips for 5 days
straight and developed pnuemonia (pneumonia) ib hospital. On the fifth day my levels were back to normal. I wouldn't wish this pain on m worst enemy.
I was hospitalized for 10 days and I am doing
good right now besides the pnuemonia (pneumonia).Wish you
the best....kim

[John]

I believe I achieved an amylase of over six thousand at my last attack so you seem to have had a very mild attack indeed.  I am a non-drinker since my first attack.  I have seen one of the best gastroenterologists in this country (UK) and he says that most people who have had acute pancreatitis should be ok on one unit of alcohol per day or less, but the trick (apparently) is to wait six months to a year after the attack before starting drinking again.

[Elizabeth]

In answer to your question about alcohol...no amount of alcohol is 'safe'. Every time you take alcohol in it can cause more damage. You are very lucky to have had pancreatitis and not had the usual pain. I was in so much pain I was getting shots every 4 hours right on the nose. At the height of my pancreatitis my amylase was 4500. That gives you an idea of how high those levels can get...I don't know what a MD would tell you but as far as why some people do and some people don't get pancreatitis from drinking it is probably the same as why some people get lung cancer from smoking and other people don't. But...90% of people who get pancreatitis get it due to alcohol, and that says a lot.
Elizabeth

[kim]

I went to see my MD tody and I am having a blood test taken tomorrow to recheck my Amalyse levels again. I am a on drinker. I hadn't had an alcohol since April of 99 and When I was hospitalized n Sept. I was recievingDemerol every two hours the first three days in the hospital.Then when I was ut into CCU I was given morphine every 4 hours on the nose. I was never told the number of my amlyse levels except that they were dangerously high and I would've died if I would have waited another day . So I am thankful to be alive and the ERCP I had  has done good or me, not everyone has a bad experience from it.I am on a low fat diet and have loss of appetite still can't eat alot no more . I am eating very small meals nowadays. I never was a big eater, but am eating in smaller amounts than ever today. I wish everyone well.
Kim

[chad]

This is in reply to john I appreciat your comment it gave me an insight as to how bad it can really be. If you dont mind me asking how did you first get pancreatitus (pancreatitis) was it from drinking. The way you worded it , it sounds like you have had this more than once. If this is the  case do you now why?

[chad]

This in reply to Kim since you havent drank anything since april did the Drs. tell you a reason for your attack? was it a duct blockage and if so did they say why it came about. Most of the Drs. that I talked to told me that if I didnt drink anymore I shouldnt get it back and Iam beginning to wonder if that is true.

[John]

Yes, I have had two attacks.  Up until my first attack in October 1997 I had been a drinker but my normal consumption was much less than average and I had probably been drunk less than ten times in my life (I am now 41).  I spent a week with tubes in almost every orifice and even on supplementary oxygen - I nearly got hooked on pethadine.  They did all the usual tests for gallstones and decided that the probable cause was alcohol and that I was just particularly sensitive.  I was never satisfied with that verdict but as I seemed to have recovered completely I just got on with my life, just mostly without alcohol.  I did have a little - the occasional half glass of white wine, or a can of 1% lager, but certainly no real drinking.  Then in April this year I had another attack.  In the preceding week I had drunk a half glass of wine on the day before and a can of 1% lager the same evening with dinner - the attack began about 10pm.  This is the attack that the 6000+ amylase count came from, though it was apparently less severe than the first (pain eased quicker and I was discharged from hospital after only 3 days).  I have since had a CAT scan and an ERCP under one of the best pancreatitis specialists in this country (UK) and there is nothing wrong with the tubes, no tumours, etc.  So I think I have to accept that I am super sensitive to alcohol and just stay clear.  I now don’t touch any alcohol - I even avoid it in things like mouthwash (which contains a surprisingly large amount) and I eat nothing that has been cooked with it.  If you can put up with it this is probably the best policy.  Good luck.
PS I am happy to pass on the name of my pancreatitis expert here in the UK to anyone who is getting nowhere with their ‘ordinary’ gastroenterologist, but please be aware that he is very busy and there will be a long wait for national health appointment.  His private fees are high, as befits the level of his experience.

[R]

With my first attack of Pancreatitis (which happened as a result of an ERCP), my Amylase was at 15,000 when I was admitted.  The Dr. said that was the highest he had ever seen in his career as a Physician (This was a Gastroenterologist).  I spent five weeks in the hospital, went home for two weeks, and then back in for another four weeks.  I have been in and out of the hospital probably 15 times for flares.  

Mine did not happen as a result of alcohol, but if alcohol is a trigger, then my advice would be to not drink!

Good luck, and I hope you find long lasting relief!  

R

[niña]

I am a 20 year old female, and have been suffering with what started as acute pancreatitis for two years now.  It developed into chronic pancreatitis.  My first attack was on November 3, 1997.  I was admitted to the hospital with amalyse of over 6,000, and Liapase of over 8,000.  I spent 6 weeks in the hospital, and was only released because Christmas was only a few days away.  My amalyse and liapase levels were still severly elevated, however all symptoms were gone.  The cause for my pancreas attack was unknown.  In mid-April of the following year, I had another attack.  This hospital stay was only a week long, cause still unknown.  My levels were never normal, but I was released because I had to get back to college, which I had missed enough of already.  I had another attack on Memorial Day of that year.  I went to a different hospital.  They ran some tests, and found that the cause of my pancreas attacks was tissue growth in my bile duct.  It was cut during an ERCP.  I was fine for almost a year.  Then last April, I had another attack.  I was in college, so I went home and my doctor prescribed pain medication and I stayed home for a week.  I did not go to the hospital becasue finals were around the corner.  I have had many attacks since then, but not anything severe.  I have heard that this is a sign of pancreatic cancer?  Should I be worried?
Anyway, to answer your question about alcohol, I drink, but only on rare occassions.  And when I do, I have yet to experience any pain.  My pain comes for no apparent reason.  I wonder if maybe the tissue grew back?  So, I think that it all depends on the person as to what should cause their attacks.  Mine seem to occur during stressful periods, maybe it is connected with your anxiety.  I can only imagine how much stress that brings you.  Good luck, and I wish you a quick recovery.
Nina

[Robert]

I am 25 yr. old male.  I was hospitalized in March with acute pancreatitis.  I had 6000+ amylase and 9000+ lipase.  I had not drank alcohol in a good bit of time (1 yr.).  One thing that no one has mentioned is that it was waaay painful.  Did anyone else have pain?  I would have almost rather have died.  Except for the morphine I was miserable.  Nothing but an IV for 8 days.  Did this happen to any of you guys? I would like to hear if it was painful for anyone else or am I just very sensitive to pain? I was stupid to have waited for 4 gall bladder attacks to go to the doctor.

[niña]

Pain?  Yes A LOT.  It was the worst pain I've ever felt.  It felt like someone was kicking me in the back, and the stomach simultaneously.  I was in pain for 12 hours straight the first time.  They didn't want to give me anything because they needed to see where the pain was coming from, and what was causing it.  I was on demoral, every 4 hours.  The last time, I had a demoral pump that I used.  It is just like a morophene pump.  I take percaset now.  I have a prescription, that I need refilled actally.  But, yeah, I have experienced much pain.  I would have rather died as well.  Sometimes it would get so bad, that I'd be delirous.  I hope they find a cure for this soon, for all of our sakes.

Take Care,

Nina

[Response to Chads comment on 10-13]

Well since my acute pancreatiis was not caused by alcohol  . I did find out that I had a blockage in the bile duct going to the pancres and liver.It was caused from my Gall Bladder surgery that I had in July99. They  did an ERCP and widened the bile Duct opening at the same time. I still eat very small meals and I can not eat reasy foods. The first question the drs asked was if I wasan alcoholic and when I said "No" they were shocked bc like many have stated predominatly is caused by alcohol but I was a rare case caused by the bile duct being blocked from my gall bladder surgery. I haven't had a problem since my hospitalization and hope  you are well. My blood tests that I had taken all came back normal. Take care, Kim

[kim]

This is in response to if any had pain. I wasin SEVERE pain from the acute pacreatitis going from front to back simultaneously . the pain stated at 4 pm and  I went to the hospital at 10:30 am the next morning and waited in the ER waiting aea for 2 1/2 hrs while ppl with broken arms went in ahead of me after I was there before them. I was nt given any pain meds til Iwsadittedto hospital, then I agiven dmerolery 2 hr bc hepain as so seveeI ws pin for4ys.fte 3 dy hpial I finlly ake or smethingroer anthewasgienMrphinevr rsor atil my amalyse

[kim]

This is in response to if any had pain. I wasin SEVERE pain from the acute pacreatitis going from front to back simultaneously . the pain stated at 4 pm and  I went to the hospital at 10:30 am the next morning and waited in the ER waiting aea for 2 1/2 hrs while ppl with broken arms went in ahead of me after I was there before them. I was nt given any pain meds til Iwsaditted into the hospital. I was given Demerol every  2 hrs bc my pain was so severe . The drs could touch me  hardly. After 3 days of no relief from pain I asked forMorphine and . I had morphine every 4 hrs for 2 days. My amalyse was so high that IfI would've waited another day to go to the hospital that I would've died.  I had an immediate ERCP and CT done. Its funny how life is and that we take so much for granted. I cerish everyday since this happend. Hope everyone is doing well and take care, kim

[mohammed aboads]

how i can gain more information about pacreatitis
my e-mail is ***@****

[kristin]

I had severe pain on the day I found out I had pancreatitis.  I recieved demerol every 2hrs for the first few days and then about every 4-6hrs.  I was in the hospital for about 6 weeks because I developed an abscess then a pseudo-cyst.  I have since been discharged on IV antibiotics and TPN for another 4-6 weeks.  I can only have ice chips by mouth and they can't promise that I wont have to have surgery in the end.  They are trying to avoid it at all cost because they say it is risky.  I have two drains that are supposed to drain the cysts.  The only positive I can find from this whole thing is that I lost 30lbs.  The doctors have yet to find out what caused it which is scarey because what if it becomes chronic.  I'm keeping my fingers crossed.  I am only 28 years old.

[james]

I have had occasional attacks now and then since my first initial attack 12 years ago,that attack was so bad i felt as if something was going to blow out of my stomach I started to sweat profusely while I was going to the bathroom the pain got so bad my palms started to itch as something toxic was released into my system...I felt like I was going to die and all of a sudden keeled over on the toilet and passed out then taken to the hospital. they ran a barium enema for my colon but found nothing.
since then I have been eliminating bad foods from my diet and taking enzymes for digestion ,my attacks are not as bad now and I know that alchohol can cause thse attacks,since 1986 ive noticed its painful to drink alcohol,I drank 12 screwdrivers on a boat at the statue of liberty celebration in 1986 mixing valium and qualudes , I think that incident triggered everything so now I dont touch alcohol.I still get although not as often an attack that will waste me for at least 24 hrs but finally I am having tests done now to see whats WHAT.
I can definately tell you all stay away from alcohol,fatty-greasy-oily foods,cheese,cows milk,shell fish,pork,high doses of zinc,carbonated beveregesand caffiene.
I really feel sorry for anybody who has this type of pain it is a major crimp on life.............james

[comment to James]

James, I know exactly what you mean about eating. I have cut so much out of my diet.sincemy attack. I thought i was going to die from my attack drs did say if I waited any longer than I did would have probably died from the pancreatitis. I can no longer eat greasy foods . I eat very little cheese and drink very little milk nowadays too. I hope to never experience that kind of pain agai. Its does crip the life we live. Take care and wish you well, Kim

[kristin]

I was wondering: I have had pancreatitis since Sept29th.  I have not eaten since then.  I was sent home from the hospital Nov5th and the doctor told me he wanted me to continue to rest the pancreas for 4-6 weeks.  I am on TPN.  Has anyone else gone this long or close to it without food?  I am starving.  I go back to the doctor on Nov 29th when he will decide if I can start eating or if I continue TPN.  It is very hard not to cheat when evryone else is eating.  I hope someone can relate to my situation.

[Trisha - Boston,Ma]

This message is for Kristin.  You left your message on 11/23/99.  This part of pancreatitis sucks!!  I developed this in april of 1995.  I was in the hospital for 1 week.   Then I was fine for a year and a half.  Then I had a huge attack in November of 1997.  I was in the hospital for 1 week.  I was perscribed prednison, a steriod, and that made me feel better.  In April of 1998,  I had another huge attack and was in the hospital for 1 month.   I was on pain meds and TPN.  I had a central line put in for this.  I was released after 1 month and was on TPN there for almost 3 months.  I think that was worse than the pain.  I was so obsessed with food.  When I would slip up and eat a cracker, I would feel as if I had just killed someone.  Hang in there,  it's hard!  Please let me know if you want to talk,  I had no one who knew what it felt like.  I hope you feel better!  Trisha- age 25-Boston,Ma

[kristin]

Response to Trisha:  Do you think it effected how long you stayed on TPN when you cheated.  I feel so guilty when I cheat, but I can't help it.  I'm human and I'm starving.  Today(Thanksgiving)will be the worst.  I find out Monday what I have to do next.  I had a CT scan yesterday.  What caused your pancreatitis?  We still don't know what caused mine.  I figured I am extra sensitive to alcohol, but they don't agree.  I drank probably once a week, but when I was younger I drank heavily.  I just hope this doesn't become chronic.  I can't afford to stay out of work.  Kristin,  Pennsylvania

[sue]

I suffered with chronic pancreatitis for years.  I was hospitalized 12 times for a total of 86 days.  I had no choice but needed to have my pancreas removed.  I was very lucky to learn of "Islet cell transplant".  This is where they removed your pancreas and transplant your islet cells into your liver.  Your islet cells control your insulin.  I was extremely lucky and I am not a diabetic after having my pancreas removed.  I no longer suffer with chronic pain.  I have written a story detailing my whole experience with chronic pancreatitis.  You can find it at:  http://www.insulin-free.org/stories/rebello.htm

Anyone wishing to correspond is welcome to email me at:
***@****

God bless you all and I hope anyone suffering with chronic pancreatitis will take a few minutes to read my story and the miracle that ended my chronic pain.

[trisha]

Kristin- First of all, good luck on turkey day.  If you cheat...
who cares your only human.  I slipped all the time.  The TPN is there to nourish you so your pancreas doesn't have to work.  Once you are healed, You'll be able to eat normally.  If you are feeling hungry right now, try some mashed potato with a little broth.(I cant believe i'm telling you this because ever since I was stuck on that phase I diet, I have hated broth.)  Also cream of wheat is a good filler upper.  As long as you stay away from high protein and high fat,  I think you'll be ok.  I think that if you slip up sensibly, you won't set yourself too much.  remember, you are human and you brain wants you to chew something.  It always made me feel better to hear someone else say that.  Please feel free to email me anytime you need to.  I wish I had someone to talk to when I was going through this.  I always got so frustrated with my doctor because he had no idea what it was like not to eat for three months. He had no idea how hard it was not to eat.  Hang in there!!!  My email address is
***@****.   Trish

[R]

My mom is 58 years old and experiencing pancreatitus (pancreatitis).  To complicate things further she was diagnosed with Graves disease and over-active thyroid about 3 months. Two weeks ago,after receiving a flu shot, she developed jaundice,vomitting and itching. She had a cat scan which showed nothing.  An ERCP was done to look at the liver.  In the process a wire poked the pancreas.  From the ERCP till now she has been in the ICU with assisted breathing and IV food.  Her lungs have improved but her WBC count is up and she is running a fever.  There is blood in her stool and urine.  Has anyone delt with this or have any suggestions?  Your response is appreciated.

[Pat]

My daughter has had recurring stomach pain for 10 month's. In march she went to the hospital and they removed a normal appendics.  She continues to have pain and has lost a lot of weight.  She has had an slightly elevated lipase that has come back within normal range. Her doctors insist it is not chronic pancreatitis.  The pain has taken her to the hospital on two occasions and has made her uncomfortable after eating more and more frequently.  She is having endoscopy and colonoscopy in the A.M.  Does anybody know about chronic pancreatitis when there has not been an acute pancreatitis attack.

[Sylvie]

I had pancreatitis in '88, I was hospitalized for a month and a half, transfered to a bigger hospital and even seen by an oncologist.  I remember having ulcers at the time and thinking they were the cause of the pain.  felt like they were trying to bust out of my stomach.  I then developped a fever 46.5c and don't remember my first week in ICU.  I was put on ensymes to help my pancreas rest.Futher tests revealed a cyst on my pancreas. The question I have now is I still get pains in my upper right abdomen off and on but have never had my pancreas re-checked.  The pain never gets too severe, but my blood pressure drops to as low as 96/66.  could  this be chronic pancreatitis?  Seems the pain is at the same place, almost feels like ulcers but doesn't go away or get worst when I eat.  What are the classic symptoms for chronic pancreatitis and are they always severe?

[Betty]

I HAVE A QUESTION FOR ANYONE WHO CAN ANSWER.  I ALSO HAD AN ERCP
PROCEDURE TO REMOVE A STONE IN THE DUCT.  PANCREATITIS WAS OF COURSE WHAT FOLLOWED.  ALOT OF THE STORIES I HAVE READ ARE VERY SIMILAR TO MINE.  I ALSO FEEL ALOT OF PAIN ON MY LEFT SIDE UNDER MY RIB CAGE  BUT THE DOCTORS HAVE HAD ANOTHER CT SCAN AND THEY SAY MY PANCREAS IS ALL RIGHT.  BUT I SURE DON'T FEEL ALRIGHT.  BUT IN THE PROCESS OF ALL THIS THEY FOUND A TUMOR MASS IN MY LEFT KIDNEY AND I WILL HAVE MY KIDNEY REMOVED ON DEC 13 1999 .  I AM PRETTY SCARED BECAUSE FROM WHAT I HAVE READ JUST ABOUT ANY THING CAN SET OFF  YOUR PANCREAS.  IF ANY ONE CAN SHED A LITTLE LIGHT ON WHAT I AM EXPERIENCING I WOULD GREATLY APPRECIATE IT.  

[Milt]

I am a fifty-two year old man who drank fairly off and on for most of my adult life.
I have had chronic pancreatitis since my first attack of acute pancreatitis, a little over three years ago.  Since that time, I've had recurring pseudo-cysts on my pancreas, one of which had to be surgically corrected.  I've also become diabetic since the tail of my pancreas has almost totally deteriorated, and the intense pain coupled with the varying rate of digestion I experience makes it almost impossible to control my blood sugars, which puts me in danger of a whole plethora of other complications.

Today I live it almost constant, intense pain.  The pain is located sometimes up under my rib cage on the left side, at other times it feels like it's everywhere inside of me, and at still other times, seems to be centered in my lower back.  The pain varys a bit in intensity, from extreme discomfort with a pressurized feeling in my side, to near agony.  The one constant...it's always there.

I'm currently taking enzyme supplements, am on a low fat-low protein diet, am taking Zestril to protect my kidneys, and am taking percocet for the pain.  I haven't had a drink for over eighteen months as alcohol in any amount for me is instant, crippling agony.

I have had the whole battery of tests, MRIs, CAT scans, ERCP.  The last trip to the University Hospital was for the ERCP and the results were, I was told there was nothing they could do for my pancreas.  That the only thing they could do was to try to control the pain.  My options were, continued narcotic medication, Octreotide Injections, a pain clinic, and as a last resort, surgical removal of my pancreas.

Has anyone out there heard of Octreotide?  I believe it's some sort of nerve blocking injection.  Any experience with it?

Has anyone had any experience with Pancreas removal.  Any side effects?  I've heard that once the pancreas is removed, there are many times side effects that are as bad or worse than the original pancreatitis.

To anyone out there with questions about drinking and pancreatitis. If the choice were mine to make again, I would certainly give up the alcohol.  The risks are far too great to offset the benefits of drinking and the end result just too excruciating.

[Milt]

I am a fifty-two year old man who drank fairly off and on for most of my adult life.
I have had chronic pancreatitis since my first attack of acute pancreatitis, a little over three years ago.  Since that time, I've had recurring pseudo-cysts on my pancreas, one of which had to be surgically corrected.  I've also become diabetic since the tail of my pancreas has almost totally deteriorated, and the intense pain coupled with the varying rate of digestion I experience makes it almost impossible to control my blood sugars, which puts me in danger of a whole plethora of other complications.

Today I live it almost constant, intense pain.  The pain is located sometimes up under my rib cage on the left side, at other times it feels like it's everywhere inside of me, and at still other times, seems to be centered in my lower back.  The pain varys a bit in intensity, from extreme discomfort with a pressurized feeling in my side, to near agony.  The one constant...it's always there.

I'm currently taking enzyme supplements, am on a low fat-low protein diet, am taking Zestril to protect my kidneys, and am taking percocet for the pain.  I haven't had a drink for over eighteen months as alcohol in any amount for me is instant, crippling agony.

I have had the whole battery of tests, MRIs, CAT scans, ERCP.  The last trip to the University Hospital was for the ERCP and the results were, I was told there was nothing they could do for my pancreas.  That the only thing they could do was to try to control the pain.  My options were, continued narcotic medication, Octreotide Injections, a pain clinic, and as a last resort, surgical removal of my pancreas.

Has anyone out there heard of Octreotide?  I believe it's some sort of nerve blocking injection.  Any experience with it?

Has anyone had any experience with Pancreas removal.  Any side effects?  I've heard that once the pancreas is removed, there are many times side effects that are as bad or worse than the original pancreatitis.

To anyone out there with questions about drinking and pancreatitis. If the choice were mine to make again, I would certainly give up the alcohol.  The risks are far too great to offset the benefits of drinking and the end result just too excruciating.

[Betty]

I am very concerned about the PAIN and VOMITING that occur approx. every several months, then I am hospitalized for pancreatis, r/o gallbladder dz., dehydration. My family think maybe it is psychological too. They suggest that I try to control the pain at home, because may be I am addictive to going to the hospital or may be my home life is too stressful. I do not think this will ever end, I just always sick. How can I help myself. Please help me.

[John B]

What are the specific areas of pain and the range of symptoms of pancreatitus (pancreatitis)?

[Mary]

For all those who have had chronic pancreatitus (pancreatitis):

Five years ago, during routine blood work, the doctor saw that my amalase and lipase was high.  I had cat scan, bone scan, etc. The doctor thought there was a possibility of cancer in the pancreas.  Everything was negative. Thank the Good Lord.  Since then the doctor has me have a amalase and lipase every three months.  He said that in case it took a sudden jump we would be aware of it.  I have never had pain.  The tests are usually elevated slightly.  Lipase is around 500 to 700 every 3 months.

I worry slightly when it it time to have another test. Has anyone else had this "silent pancreatitus (pancreatitis)".  There are times when I wonder if this is normal for me.

Thanks for any help.

[sue]

Message for Milt! and any others suffering from chronic, painful pancreatitis.   I have had my pancreas removed.  Minnesota is doing a great surgery.   When removing your pancreas, they are transplanting your islet cells (that which control your insulin) into your liver.   I had the pancreas removed and islets put into my liver.  I celebrated 2 years (on Nov. 17, 1999) of having my pancreas removed and not becoming a diabetic.  The chronic pain is gone.  There is no need to suffer daily with pancreas pain. I was hospitalized off and on (more on) for a total of 86 days before learing about islet cell transplants.   Please read my story on:

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

If you wish to correspond with me my email is:

***@****

[from Carol D. to BETTY]

Betty -

You mentioned in your post that the CT scan did not show anything with the pancreas but they discovered a tumor in your kidney.  Was that discovered in the same scan?  I had a scan that they said appeared normal, but I had 2 urine samples saying I had 0 - 3 red cells (indicating blood) but that was dismissed as a normal level.

I hope all went well with your surgery.  If you're feeling well enough to reply I'd appreciate more details.

Thank you.

Carol D.

[Maria]

I am 36 years old. I suffer from chronic idiopathic pancreatitis. I had my first bout of pancreatitis in 1991. My gallbladder stop functioning and got inflammed after my firt pancreatitis attack. The doctors then removed my gallbladder. After my gallbladder was removed in 1991 I had another pancreatitis attack. For several years I did fine then in 1996 I had 6 to 7 pancreatitis attacks. In 1999 I was hospitalized 4 times with pancreatitis.

The doctors do not know what is causing my pancreatitis. I do not nor have I ever done drugs or drank alcohol. My CAT scans come back normal.

My symptoms are similar to many of the symptoms others experience with the disorder. I have chronic nausea. I have midepigastric pain which often radiates to my back. Sometimes the pain goes into my chest. I vomit bile sometimes. I do a lot of retching.

I was in the hosptial last month. I was hospitalized for 4 weeks. I was discharged from the hospital on christmas eve. While in the hospital I was given TPN. My pancreas specialist inserted a feeding tube into my nose, down my throat, and into my small bowel. I have been on tube feedings since leaving the hospital on December 24, 1999. I am supposed to be on the tube feedings for 6 weeks. Since I've been on the tube feedings, my pain has decreased dramatically. I haven't had to take pain medicine. After the feeding tube is removed I will able to eat again. I am on a lowfat diet and have taken Pancrease capsules with each meal before. I know what Kristin of PA and Trisha of Boston have gone through. I feel like I've been starving for over a year. I see the food commercials on tv and I find myself having cravings for the food that I see on tv.  

My lipase and amylase levels have been in the thousands. When I was hospitalized last month, my enzymes were in the thousands and decreased slowly. My doctor felt that my pancreas was still too "hot" and decided to rest it further. This is why I'm doing the tube feedings until I see my pancreas specialist again in the future.

I have a question for the doctors at Med Help International. After reading my story, especially the part about the feeding tube, do you think that my chances for pancreatitis occurring after the feeding tube is removed is high or low? Is a feeding tube a solution to chronic pancreatitis?

[tom]

regarding chad's posting--does anyone know the effects of smoking cigarettes on the pancreas--ive heard from several (somewhat dubious) sources that is aggravates the pancreas--any info would be greatly appreciated--post here or email me at ***@****-- Thank You

[T Wayne]

To the discussion,
I found this webpage this morning and it is very helpful. I came down with what I thought was the flu last October 1999 and have been off work except for about 8 days. I have had tests and bloodwork done and am scheduled for a colonscopy February 2. I have had 2 catscans done and the first showed my pancreas had an enlarged head. The second, about 30 days later, revealed a normal pancreas. I also have had the constant pain in the upper right abdominal area through to my back as mentioned by some of you. The pain has since quit, thankfully. I do not know what my amylase and other levels are yet, but I feel now I may have been going through what ya'll have described as pancretitus. I rarely drink as approximately 10 years I was discovered to have gout and the first thing I had to give up was alcohol and red meat in great quanities. I was taking Nyquil, for the flu, and not eating properly for about 3 to 4 weeks and I was wondering if the alcohol in the Nyquil is the culprit.
Wayne
P. S. I would like to say that my alcohol consumption is less than a six-pack a year.

[sue]

For all you sufferers of pancreatitis.  I suffered with chronic pancreatitis for years.  I was 42 years old when I had my pancreas removed.  One doctor suggested tube feedings for an extended period of time, but the consensus was that it doesn't work to well for many people.  My pancreas was no good and needed to come out.  I had it done in Minnesota where they are doing islet cell transplants.  This is done so you don't become a diabetic after having your pancreas removed.  If anyone is facing a pancreatectomy, please read my story first - you don't need to become a diabetic.   Also, you don't need to continue to suffer chronic pain.  my story is on the Insulin-Free World web site at:  
www.insulin-free.org/stories/rebello.htm

you can also correspond with me at: ***@****

[B. Scheelk]

My husband just underwent emergency surgery last night- his third within the last month.  The diagnosis- acute pancreatitis.  The abdominal incision from his previous surgery was re-opened and we are looking at possibly another week-long hospital stay.  

This all started when my husband underwent Nissen fundoplication sugery January 6, a relatively common and non-invasive procedure, which involved a two day hospital stay.  The initial surgery involved 5 small arthroscopic incisions.  He was 2-1/2 days later, on Saturday.  The following Tuesday he developed severe abdominal pain and was transported to the hospital.  On exam he had signs and symptoms of perintonitus.  He was taken into the operating room, underwent invasive surgery - this time involving a full abdominal incision- and it was revealed that in the initial surgery, his stomach was perforated.  The perforation was surtured and the abdomen irrigated.  

Now this latest (complication??) has me extremely concerned.  My husband has never had any symptoms of pancreatitis.  Yes, we had occasionally drank alcohol, but prior to the first surgery he never experienced any abdominal pain like this!  I am worried that there may damage to other organs perhaps from the perintonitus or the now recently diagnosed pancreatitis.  Has anyone had any similar experiences?  I am very concerned that he may have damage to other organs.  My husband is 41 years old, and aside from acid reflux (which prompted his decision to undergo the first surgery) has enjoyed good health.  In reading your comments- it frightens me the extent of the seriousness of this disease.  In watching the pain my husband went through last night my thoughts and prayers are with all of you experiencing this.

[Mary Kay]

I am a 35 year old female.  Three years ago I had a systic papillary tumor removed from my pancreas.  I had a whipple procedure where they removed over half of my panceas, the duodynym and gall bladder.  Because there were some cancer cells found in one lymph node inside the tumor, I was advised to go ahead with a routine chemo/radiation treatment.  I went through 6 weeks of radiation, once a day for 5 days, 6 weeks and a continuous infusion of chemotherapy.   Since that time I have suffered from recurrent acute pancreatitis.  I have had 3 ERCP's, and several other tests at Mayo Clinic in Minnesota.  As of yet, noone has been able to decide exactly what the problem is and how to treat it.  I am very afraid that I will eventually kill off my pancreas.  I seem to have attacks every 5-6 weeks.  My amylase levels are usually about 2-3,000 with lipase 4,000.  Because I hate going to the hospital I take pain meds at home and stay off food.  The episodes usually last about 3-4 days.  I am wondering if anyone out there has any suggestions for me or has had radiation to the pancreas and has had my same problem.  Luckily, the tumor type that I had was not an aggressive form of cancer, and so my recovery is excellent, from the cancer.  However, I really do not like pancreatitis and what it does to me and my family.  Any suggestions or advice welcome.

[kim]

I',m 19 and i don't drink and i got pancertititis for 8 days

[sue]

Mary Kay,

I suffered with chronic and acute pancreatitis.  I also had a Whipple but the pancreatitis kept coming back - made me anemic and malnourished. I had to go on TPN feedings.  I wrote a complete story about my experiences and the new surgery available in Minneapolis, Minnesota where you can have an islet cell transplant when you have your pancrease removed.  They are having a 80+% rate of success.  I had to have my pancreas removed - but I am not a diabetic because of the islet cell transplant.

Please take a few minutes to read my story.  You will need to type in the web address:

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

Please let me know how you are doing.

***@****

Sue

[robyn]

I have just been informed after months of agonizing pain and visits in and out of the hospital, and passing Gallstones, that I too have pancreatitus (pancreatitis).
I still, even knowing deep down, that I am in fact an alcoholic at the age of 29, still havent "really" come to terms with it.
I lost an uncle two years ago to pancreatic cancer, and am "quite" aware that it runs in my family, (both, Alcoholism and Pancreatitus (pancreatitis)), However, something...perhaps satin, is telling me that there is just NO way this could happen to me!! I cant possibly JUST STOP drinking!!!  Not with a vacation in two weeks to california, and my wedding in October!!
I also am soo confused as to why the drs can narrow it down to drinking when there are sooo many that have this and it is caused  in soo many other ways, perhaps i am just kidding myself, but what if it isnt due to my drinking?  How will I really know? How many drs do I need to tell me it is Definately due to drinking? How stupid do I have to be in order to wait till I too die from it?  Im soo scared and feel helplessly alone even though I come from a huge (Italian) family. I say Italian, because if anyone knows how close Italian families are, then you realize the last thing I should feel is alone.
I also am Loved very much by my six year old daughter and my fiance' which you think would give me enough reason NOT to want to drink again.
The Pain alone should make me want to NOT drink again!!!
Does this ever go away? will minimizing my drinking do much damage?  im going out of my mind wondering wether I drink or not will REALLY make a difference at all?  anybody??!!!  pls give me some suggestions!!??

[rose]

I am recovering from an episode of acute pancreatitis. My lipase went from 91 to 14,000 in just seven hours! I had 10 very painful days in hospital and I am now facing investigations into why I developed it.  So far, an ultrasound hasn't shown gallstones and the CT Scan is basically normal too.  My surgeon is now testing me for campylobacter bowel infection because I am getting recurring bouts of diarrhoea too.  
I have three questions for anyone out there.
Does anyone know of any connection between campylobacter and pancreatitis?
Has anyone else experienced diarrhoea after acute pancreatitis?
Has anyone else experienced recurrent episodes of pain in the weeks following hospitalisation for pancreatits?  Some days I feel like I'm taking one step forward and 2 back. Is this normal?
All comments welcomed.

[Julie]

In July of 1999 I was taken to the ER in extreme pain in all of the obvious areas of pancreatitis.  I went into a coma where I remained for 7 weeks.  My family was told that I would not survive the illness due to my kidneys failing and my lungs collapsing.  I was placed on dialysis and given a tracheotomy. This was the worst nightmare of my life-since I was still fighting the things they were doing to me, I was given paralytics to keep me still and as a result of the drug I suffered severe paranoia.  Anyway, when I awoke and shocked everybody, I was told that my pancreatitis was caused from high triglycerides (fats in your blood).  The normal level is approx. 150 and I was told my levels were 4000.  I am confused because they said that this was a recent increase and not accumulated over a period of time.  I am 34 years old and do not consume alcohol, however, I do admit that I did not always eat right nor did I exercise.  

   I came home on August 30, 1999 and have had only mild pain on a few occasions-just enough to scare me to death!!!  However, I did have an extreme fear of food because eating seemed to cause pain occasionally.  Recently, over the past month and a half, I have experienced 3 bouts with hives all over my body.  each attack was more severe than the other.  My doctor did not seem too concerned but you out there who have been in the pain I have been in know that everything is a concern to us, right?  Anyway, I was wondering if this was in any way connected to pancreatitis and if anyone out there had any similar experiences?  Please respond-my E-mail is ***@****.  Thanks in advance.

[Rick]

I have had it 3 times,first one in 1995,man there was pain bigtime amylase was 1000,that was the highest its ever been and had 2 more and not as bad. I was in the hospital 3 days each time,and my amylase was back to normal. I have been drinking alot since my wife and I were divorced. Knock on wood I havent had another attack,but after this weekend, I am going to chill on the drinking

[Dev]

I am 28 years old male software engineer from INDIA. I was working in USA for FedEx for few months.
From last six months I am getting pain in my stomach. Usually I get it once or twice in a month and it lasts for 4-5 days. Initially pain starts with stomach and then extends to both the sides on upper back. After taking painkillers tablets & injections pain reduces, but fear of getting the pain always exists.

I am not clear of what I should eat & what not. Sometimes pain becomes so severe I can't sleep without taking sleeping pills and painkiller injections.

Scanning & Endoscopy are done. The scanning report says Liver, Gall bladder, Spleen, Kidneys, Urinary bladder are normal. But pancreas, shows bulky head with heterogenous texture. Multiple calcific foci are seen within. Body and the tail region couldn't be well seen. Pancreatic duct is dilated upto 6-9 mm

Serum amylase 28 units/ltr when normal and 506 units/ltr when pains.

I am not a regular alcoholic and I rarely eat non-vegetarian food. Doctor says this may take few months or several years to cure. But How can I tolerate this pain for several years.

[debbie]

I am just getting out of the hospital after a 3 week stay with pancreatitus (pancreatitis).  I do not consume alcohol at all. My pancreatitus (pancreatitis) was attributed to a very high triglyceride count (over 10,000).  My doctors all say this is something that could only happen genetically or artificially.  They believe and we are testing the fact that oral estrogen can cause this artificial rise in triglycerides.  One of my doctors has done some research on this and is finding that oral estrogen can have this effect so they are switching me to an estrogen patch to see if there is a difference.  Of course, they can never be sure that I will have another episode of pancreatitus (pancreatitis) anyway but are using this as an extra precaution.  Has anyone else heard of the hormone or estrogen connection?

[traci]

I have had severe attacks since Jan of this year (2000).  They happen so suddenly that it scares me.  I have been to the doctor, did a barium swallow and ultrasound but nothing showed up.  Shen then told me that I had a hiatal hernia, and maybe a high percentage of acid that could cause my pains.  In April, I went out and had two drinks with my husband.  I wound up in the bathroom with diahrea (like water), and vomiting, and stomache pains that went right through me.  I was in sooo much pain!  I then had another attack about a week ago right after I ate a meal and it lasted about 45 min then I was fine!  
My pains were unusual though, first the diahrea, then severe vommiting, with stomache pains.  My friend was there helping me and she said my lips and nose were turning a greenish color.  I was in a cold sweat and I felt like I was going to pass out cold!  I felt like I was going to die!  
I went back to my doctor and she is now in the process of checking my blood for pancreatitis.  I am not a big drinker, if I ever drink at all.  I am only 24 years old, I am fit and healthy in every other way.  Did any of you people find you had the diahrea with this too?  I sure hope I don't have this, I am really scared.  I am so afraid of dying.  My husband is in the military and he is gone away right now for 2 months, but if this comes back that I have it, I am going to try to get him home.  I am so scared to have another attack while my babies are here alone with me at home.  Good luck to all of you, and you are in my thoughts... (please tell me if it sounds similar to your cases).  Thanks!  Traci

[Annette]

I have been told I have chronic pancreatitis and recently went in for an endoscopic ultrasound study.  The results were surprising - no damage to the pancreas and no sign of pancreatitis.  Previous tests, lipase levels have been from 233 to 1297.  Now they want to do an ERCP.  Anyone had experience with this procedure?  The pancreas spec thinks its a sphincter problem and I am a high risk case for this procedure.  Anyone have comments regarding this procedure and their results?  

[weezy]

I go back in to an endochronologist on the 25th to see how i am doing.  I had two attacks and they took out my gallbladder thinking that the polyps were the culprit.  After reviewing my pathology report, the Endo dr. and myself came to the conclusion that the gallbladder had NOTHING to do with my pancreatitus (pancreatitis).  The concern is on estrogen, so i will know more about this.  It's very hard to find info on estrogen affect on the pancreas, i have alot of bowels problems also.

Thank God i haven't had an attack since March, and i may never have another again.  But i really don't know where i stand on this very mysterious disease.  If there is anyone out there who has similar history, please share, i'd be very interested in sharing notes.

[nancy]

I have read all the posts on here but none address the problem that i have just had...i have drunk alcohol now pretty heavily for the past 3 yrs. ...a few days ago i got a discomfort in my upper stomach area and then had a bowel movement that was fairly loose and floating and smelled so bad i couldn't believe it...am too scared to go to the Dr. with this...has anyone else had this problem with Pancreatitis? ...since then i have quit drinking alcohol of any kind and have had improvement in my bowel movements as far as the smell and most of the time they do not float either and are better formed....also the discomfort in my upper stomach has gone away...also had what felt like arthritis discomfort in my rib area in my back that has also gone away....have no discomfort from eating except perhaps a little gas from time to time but certainly no pain like everyone else seems to be saying that they have had....would appreciate any input on this as i am worried....also one last thing...is there any way of telling an acute attack from chronic pancreatitis?...i do know one thing even if what i have described to you all is not pancreatitis after reading the posts about what some of you have gone thru due to drinking i have had my last drink and will never touch the stuff again...thanks in advance to any help anyone out there can give me!!!

[nancy]

One more thing....i have not had any weight loss,excrutiating pain,jaundice or any of the other symptoms such as vomiting or nausea either and eating never made my symptoms worse...the one day with the bowel movements that smelled extremely bad was all that i had plus the slight upper discomfort...i do have 3-5 bowel movements everyday but then i have always gone at least 3 times anyway....please need some answers from you all...thanks again.

[nancy]

I promise this is my last post...there is one other thing about the stools including the bad smelling one is that they are kind of a yellow to orange color...i have been taking a lot of vitamin B tablets that are a very strong yellow and also some Metamusil that is orange flavored and has an orange cast to it...could that possibly cause the stools to change color and if not is the yellowish/orange color anything to worry about either?

[Mark]

I have suffered from pancreatitus (pancreatitis) since 1970 (12 years old).At the time the doctors could not give a definate diagnosis as my age went against the drinking link.I have had many attacks over the years,ranging from controllable pain to being bent double.I have always been a moderate drinker until I had a severe attack about ten years ago.My G.P told me to lay off spirits and I feel that has made a big difference.Nowadays I get a `warning`,rather like a mild stitch,then I starve myself just taking painkillers and liquids, after 1-2 days it normally disappears.Every doctor that I have spoken to about this condition says that with every attack the pancreas becomes weaker which is worrying as I still like a drink(who doesnt)and I do think that there is a link to the stress side of things ,as with my attacks. I do hope this is of some hope to somebody .

Any comments  ***@****

[chica1763]

A related discussion, causes was started.