Living Life to the Fullest With It, Not In Spite of It.

I generally do not mention my personal ailments in the open forum, but I have been asked about this by several persons in the last few days so am writing about this in hopes that it may help someone else.  Please understand that I am not asking anyone to feel sorry for me, but I do want everyone to know that there are those of us that have become accustomed to living with this horrendous disease and are doing okay with it. 

I have what is called “severe chronic pancreatitis” but there is nothing cute about it.  For those of you who may be unaware what this disease encompasses, in almost all pancreatitis attacks it involves a stay in the hospital, and at minimum a trip to the ER.  Mild cases of pancreatitis generally improve in a week or less. Moderate to severe cases take longer to improve. Severe acute pancreatitis usually requires a longer hospital stay; patients with complications may be admitted to the intensive care unit. Persons are classified as “chronic” if pancreatic tissue is permanently destroyed and scarring develops causing attacks on a recurring basis.  I average 3 attacks per year that require hospitalization, but I have learned how to eat to control it for the most part so I am luckier than most.  Most people with chronic pancreatitis experience upper abdominal pain, although some people have no pain at all. The pain may spread to the back, feel worse when eating or drinking, and become constant and disabling. In some cases, abdominal pain goes away as the condition worsens, most likely because the pancreas is no longer making digestive enzymes.

Other symptoms include:

  • nausea
  • vomiting
  • weight loss
  • diarrhea
  • oily stools

People with chronic pancreatitis often lose weight, even when their appetite and eating habits are normal. The weight loss occurs because the body does not secrete enough pancreatic enzymes to digest food, so nutrients are not absorbed normally. Poor digestion leads to malnutrition due to excretion of fat in the stool.

 

Normally persons that have pancreatitis smoke or drink heavily which I do neither one often, I never smoke and drink only on special occasion. Other causes of chronic pancreatitis are hereditary disorders of the pancreas, (such as cancer, which two persons in my family have already died from) Cystic Fibrosis—the most common inherited disorder leading to chronic pancreatitis, hypercalcemia, hyperlipidemia or hypertriglyceridemia, or certain autoimmune conditions.  I am repeatedly checked for cancer because none of the other conditions apply to me, and it is a huge pain in the a$$ to go to the doctor so often.     However I have lived with this ailment for the last nine years of my life, realizing that I will have to make multiple trips to the Emergency Room, and spending several days, and sometimes weeks in the hospital if my enzymes are too elevated. Additionally, most of us have had our gall-bladders removed because that is a trigger in some pancreas issues. 

 

There is currently no cure for those of us that have this disease; treatment includes controlling the pain, allowing the pancreas to rest and restore itself to original while restoring a normal balance of fluid and electrolytes. Because the pancreas is active when eating, they generally plug me up to IV’s to receive the medicine and fluids I need to keep from getting dehydrated until my pancreas is back to normal.    Because most of the pain medications that they give for pancreatitis are so addictive the recurrence of attacks makes it harder for doctors to control the pain for those of us that have multiple attacks each year.  It is controlled more with a change in diet which includes less fat, more enzymes in the form of these pills you take before, during, and after meals, and watching body protein levels closely.  Past the control of this disease with diet surgical management techniques include resection where they do surgery to block the nerves in the abdominal area that cause pain (which I had done but it doesn’t really stop the pain) and a pancreatectomy although there is no cure and in most areas all surgical intervention is considered experimental and insurance doesn’t generally cover this cost.

 

Yes, I am living with pancreatitis.  While I have a deep appreciation of how bad this could be,  I choose to live with it, and not to allow it to keep me down.

 

 

 

 

fungirlmmm fungirlmmm
46-50, F
24 Responses Mar 10, 2009

my name is alexa i have recently been diagnosed with acute [pancreatitus i think i have chronic pancreatitus i have dirrea for 3 or 4 days i have not been hospitalized as of yet. but i an very worried about all this i have had stomach problems all my life but never knew what to eat or not eat. i was a drinker but now i think not drinking is the way to go if you eat right and dont drink why do you keep getting pancreas attacks. so sad about all this........

Stress is another fa tor for some and others smoking... also sometimes it is hereditary factors. I very rarely drink... I do not smoke....another thing that can cause it is diuretics. I wish you well.

Oh and with the chronic usually it is a lot more pain and u throw up horribly. Make sure you see your dentist often because good oral care is important because your stomach acid will erode your teeth away if you don't. I have been lucky that I am obsessed with oral hygiene and always taken care of my teeth. Some people don't.

i hav been fighting wid chronic pancreatitis from last 12 years and i am 21 now..i havent seen much in my life. but this disesase has eaten me up, i wanted tu achieve so many things, i am very ambitious. but i hate this. In my family i have all doctors but they cant help me wid same. m frustrated, this thing has troubled me alot n i **** achieve wat i wantu..m a law student stiving hard tu du best in my career..but because of this i couldnot..still there lies a hope that il be fine one day..

I just can't control my feelings. I have exact same story like you. But,now I am 21.Still hoping good... Same like you...
Actually, if you don't mind... May I know your condition now? Pls?

i hav been fighting wid chronic pancreatitis from last 12 years and i am 21 now..i havent seen much in my life. but this disesase has eaten me up, i wanted tu achieve so many things, i am very ambitious. but i hate this. In my family i have all doctors but they cant help me wid same. m frustrated, this thing has troubled me alot n i **** achieve wat i wantu..m a law student stiving hard tu du best in my career..but because of this i couldnot..still there lies a hope that il be fine one day..

i hav been fighting wid chronic pancreatitis from last 12 years and i am 21 now..i havent seen much in my life. but this disesase has eaten me up, i wanted tu achieve so many things, i am very ambitious. but i hate this. In my family i have all doctors but they cant help me wid same. m frustrated, this thing has troubled me alot n i **** achieve wat i wantu..m a law student stiving hard tu du best in my career..but because of this i couldnot..still there lies a hope that il be fine one day..

hey im luke :) im twenty three years of age and i also have chronic pancreatitis, i have had it as long as i can remember. it was finally diagnosed when i turned eighteen, but the cause unknown. ive given up drinking and ive never smoked, and try to eat as healthy as i can but my attacks are becoming more and more frequent. this year ive been admitted into hospital six times with quite severe attacks. which i spend a couple of weeks in hospital, plus like a thousand mild attacks lol its quite scary stuff :( especialy cause i know it only gets worse down the line, i dont feel so alone in this when i read your stories.. i know how you guys feel! the pain is tramendous! and trying to sleep with this pain is impossible! and the pain releif only takes away so much.. i agree with fifa, as soon as i feel a attack coming on, i jump straight into a hot shower or fill my hot water bottle and press onto my abdomen lol, i find heat settles the mild attacks which is great!! i work full time and try to live my life as normal as possible, but it is getting harder! i have felt quite depressed over it but try to keep my chin up, i prey that they will find a cure for us soon, thanks for reading.. godbless :)

I'm sorry...<br />
<br />
Must be painful?

Very much so... I do not eat any fried foods nor do i. I literally only drink water by sipping it from a spoon for a few days when I think I am getting an attack because if i keep eating I end up in the hospital and being fed through IV's. Go to your doctor soon. One thing I know that I do when it gets really bad is I drink a really warm glass of water and that buys me about an hour while I get driven to the hospital. Believe me you will know... you literally puke up soured creamy looking water and you double over in pain from it. I have been shot, given birth, and been dog bit but I will tell you that pancreatitus hurts 3 times worse than any of those things.

I have been dealing with upper abdominal pain after eating, nausea, puking up frothy foamy stuff on occasion, unexplained weight loss and slightly elevated amylaze for the last year. They have done countless tests and can't seem to figure out what is going on... I finaly gave up and refused to be a guinea pig any longer. I started to get better and things were going okay and then I want to a local festival and ate tons of fried food... that was 4 days ago I am in TERRIBLE pain and am unable to eat more then two or three grapes or half a cup of jello at a time and I am dropping weight. Does this sound familiar to anyone on here I am lost and have almost given up on going to see doctors as they just don't seem to have a clue.

Thanks. I don't eat fried food and I only sniff coffee as it is being brewed. I hate the taste but you are right they told me not to consume those things.

Thanks to all of you who are transparent about your challenges, it is a learning experience. I had my<br />
<br />
in1999, and for the past five yrs. they have become moire frequent, painful and konger lasting. I had <br />
<br />
an attack March 11th and still "going through". Up to this point green bean juice and or dandelion <br />
<br />
root usually restored me to "norm" in a day or two, not thiis time. I alsonam in-between insurance<br />
<br />
until medicare beefits begin in July. My body is hypooglecemic so it has been a great challenge to <br />
<br />
avoid going to the hospital. I was advised to try chronium, and it seems to help balance my <br />
<br />
glucose levels. <br />
<br />
Having read the variuos psts I am going to Google which enzemes I should be trying,. again <br />
<br />
I say thanks for sharing, as until I read your post I was fighting the good fight of faith-in God- not to <br />
<br />
give up, as I am not a giver uppera and your sharing has been very encouraging and enlightening. <br />
<br />
Heavy constant coffe intake( I worked in hospital unit/ sugical/i.c.u foe years) and fried foods are<br />
<br />
also causes of this ailment.<br />
<br />
ciao bella!

hi , sry to hear abt ur pancreatitis condition. <br />
<br />
My wife currently is in the hospital n diagnose with acute pancreatits. X-ray shows no gall stones. She doesn't drink but smokes. When she was admitted, she had servea pain on her left n middle abdomen. Her lipid level was 113. <br />
<br />
Docs put her on drips n morphine to ease the pain. <br />
<br />
Second day, doc did a blood test again n found that her lipid level drop to 32. They couldn't figure y the sudden drop . The only advise they could offer was to let the pancreas rest n waiting more test to be done........ <br />
<br />
Can u advise me on what I should do...... It's soo depressing to see my wife lying in bed.... Sob...<br />
<br />
Eddy

The only options left for me at this point is to have to have a transplant, or to live with it and take my little enzymes.

I too have just been diagnosed with CP. what surgery did you have for this? was your pancreas removed?

Thanks Rikki.

My name is Rikki i know how this is i have it too ,you have a good positive attitude and that is what you need...

Fifa, I am sorry you are having to go through but also a relief that someone else understands the intense pain that we go through. I do the same with hot water bottles and I also drink as much scalding hot water as possible to get as much heat to me as possible. Sometimes it helps and sometimes not. Thanks for sharing.

i also have chronic pancreatitis and have had it for about ten years now. Ive been in hospital too many times to count now. When the pain gets really bad i put a hot water bottle straight onto my stomach without a towel which has left blister marks on me.Sometimes i cant cope with the pain and wish i was put out of my misery but i have six kids to live for and a beautiful grandson.so life goes on

I will answer you in general here but it you want to know more about me then PM me as well. Yes I had the surgery. yes, it helped some for the pain but it does not totally block it as I thought it would beforehand. Additionally, you will always have to take those enzymes.

hi, read your story....nice.<br />
i, too, have this.<br />
did you get an operation?<br />
<br />
i am suppose to get one in a few weeks and am nervous as hell.<br />
plus, no insurance.<br />
what is your opinion on an operation?<br />
i have had chronic pain for 7 months and have been to the hospital 3 timess, but, because of the insurance, they did everything except the operation.<br />
thank, peace, bill

Thanks guys for your comments.

Well, keep hanging in there, I hope they find a cure. I never knew what pancreatitis was, so I'm glad you educated us. I am very sorry to hear about your struggle with this disease. People don't realize how fortunate they are to have a "normal" body that isn't sick until they hear stories like this.

fungirl i wish you well...i'm so sorry you have to go through this...i admire your courage and determinination to live through this<br />
what gets me is the ones like you who have not abused their bodies have to suffer so ...when i see so many willingly drinking their pancreas away...knowing they will get the disease<br />
i will keep you in my thoughts and wish you a healthy life<br />
cheers

This is just one of the reasons why I like you soooooo much. I knew without “knowing” that you are someone who has been challenged but doesn’t let any problem stop them.<br />
<br />
I know you have the spirit but I worry that you are looking for a job and have to be concern about health issues. I could not survive without health insurance. My duel retirement, Medicare and support from my wife keep me afloat but what about you?<br />
<br />
I know you want only a chance to help your self and I hope your talents will attract a descent job so you can get your life in order...DD

I like that weight loss thing, so it isnt all bad then.