Today wasn’t a good day again. I had pancreatitis in the 20,000 range about two weeks ago and was released two days later. Now, I feel like I am back where I was. I have seen three specialists including Dr. Freeman. What should I do? I am only 27 years old and I don’t know what is going on. I can’t live like this…not eating anything for days and losing a bunch of weight. Help?
Thanks Vonnie! This is so helpful to all of us!
Jackie
OOPS! You cannot look at the book online. I’m sorry, I thought I had done that, but evidently not. So for 30 bucks you can order the book and download it to your computer. I feel like it is $30.00 well spent. Again I’m sorry.
Vonnie
The Pancreatic Foundation has an article on understanding pancreatitis. It says: "Chronic pancreatitis . . . enzyme levels in the blood (amylase and lipase) are usually very high during acute pancreatitis, but may be only mildly elevated or even within normal limits with chronic pancreatitis."
So you might check to see if you have chronic pancreatitis.
I had an acute episode in Aug. In Nov, following an endoscopic ultrasound, I was diagnosed with chronic pancreatitis that had been going on for quite some time. Years, in fact. Now I'm trying to figure out just when I might or might not be having an episode. The article says that with chronic pancreatitis that pain may be totally absent. I now wonder if every stomach flu I had was really pancreatitis. Since I didn't experience any different areas of pain only an increased intensity of pain with my acute episode. Which makes me very lucky so far, compared to the awful stories I've read here. What this also means to me is that I am not crazy even if my enzymes are not elevated! I know my body better than drs do, I may not know why it is occuring, but I do know what I am feeling.
Keep after your drs and get 2nd, 3rd and 4th opinions if you have to!
Here is the site: http://www.pancreasfoundation.org/learn/pancreatitis.shtml, it is the 2nd article called: "Chronic Pancreatitis – A Frequently Misunderstood Disease"
and the whole article:
Chronic Pancreatitis – A Frequently Misunderstood Disease Michele Dominick Bishop, MD, MMScClick here for the article in PDF format. (requires Adobe Acrobat)
A 45- year old businessman is found to have calcifications of the pancreas on an abdominal CT scan after complaining of diarrhea and weight loss. A 30- year old housewife is now seeing her eighth physician for abdominal pain that started in her teens. A 70-year old man is found incidentally to have a mass in the head of his pancreas during a CT scan and is told by the surgeon after resection that it was benign scar tissue. These are examples of presentations of the same illness – chronic pancreatitis. The disease is poorly understood by most gastroenterologists, much less other physicians and the general public. Terms are used interchangeably, such as recurrent pancreatitis, flare of chronic pancreatitis, acute pancreatitis, and pancreatic insufficiency.
Let’s start with terminology. Acute pancreatitis is the sudden onset of inflammation and tissue destruction of the pancreas that may even involve other organ systems. The pancreas usually heals over time, and the damage is not permanent. More than one attack is termed recurrent acute pancreatitis, between which the pancreas returns to a relatively normal state. Chronic pancreatitis involves long-term inflammation and scarring of the pancreas that is irreversible. Pancreatic enzyme levels in the blood (amylase and lipase) are usually very high during acute pancreatitis, but may be only mildly elevated or even within normal limits with chronic pancreatitis. Pain is one of the diagnostic features of acute pancreatitis, but may be absent in chronic pancreatitis. However, some patients have severe abdominal pain with chronic pancreatitis either intermittently, after eating fatty foods, or constantly. Pancreatic insufficiency is when the pancreas is unable to produce enough digestive enzymes to break down and absorb food in the intestine. This leads to steatorrhea, a type of oily diarrhea associated with chronic pancreatitis and malabsorption. Diabetes may also develop in patients with chronic pancreatitis if the islet cells responsible for making insulin are scarred.
Chronic pancreatitis was first described over 200 years ago, but few significant discoveries about the disease were made prior to the mid 1990’s. Historically, it was thought to be related to alcohol consumption in 60-70% of cases, with the remaining 30-40% labeled as "idiopathic" or of unknown cause. In the last six years, however, advanced genetic studies have been reported that finally give insight to possible causes of chronic pancreatitis. We now know that many cases are due to DNA abnormalities in genes, such as CFTR (cystic fibrosis), PRSS1 (cationic trypsinogen) or SPINK1. Research is also underway to better understand how alcohol damages the pancreas, and why such damage leads to chronic pancreatitis in only a small portion of alcoholics.
The diagnosis of chronic pancreatitis may require several tests. The gold standard is an endoscopic retrograde cholangiopancreatography (ERCP), which requires IV sedation and passage of an endoscope into the duodenum, with contrast injections into the pancreatic and bile ducts seen on x-rays during the procedure. There is a 5-10% chance of causing acute pancreatitis just by doing the test. Other tests may include a CT scan, MRI, or endoscopic ultrasound to look for calcifications or chronic changes of the pancreas. There are also pancreatic function studies, such as a secretin or CCK test, to look for decreased production of bicarbonate or enzymes in the pancreas. It is not uncommon for the symptoms to go undiagnosed for months or even years. Unfortunately, treatment options are limited. Pancreatic enzyme supplements taken with food help in digestion, but treatment of pain is usually targeted at masking the symptoms with pain medications, such as narcotics or nerve blocks. Surgical options have reported pain relief in up to 70% of patients, but require technically difficult procedures that carry some risks.
Overall, chronic pancreatitis can be a devastating illness for patients and family members. The care and advice of a "pancreatologist", a gastroenterologist or surgeon with expertise in pancreatic diseases, is of utmost importance. Hope lies in continued research of the causes and potential treatments of chronic pancreatitis, and in education and public awareness of the disease.
Michele Bishop, MD Assistant Professor, Mayo Medical School Division of Gastroenterology and Hepatology Director of the National Pancreas Foundation
Copyright © 2003 The National Pancreas Foundation. All Rights Reserved. This work may not be reprinted in any form without express permission of the author.
I just went on the website and saw many conditions but could not find
Pancreatitis when I scrolled down- please advise
Thanks Jackie
I am so sorry to hear you feel miserable. All I can think of to suggest is to call the doctors…all 3 of them if you have to and tell them how bad your feeling and that you need help. They should respond to you with something to help you. If they don’t, keep calling them until you get the help you need. God Bless you Janelle
Janelle,
All will be well. Thanks-
I think of you everyday and pray for you and your family. How are you
honey? Take it a day at a time, an hour at a time, a minute at a time if
you have to. Just know that we are all standing firm shoulder to shoulder
like a wall surrounding you, praying in unison, and stand firm on a miracle
healing.
We love you! Keep this picture in your mind and mentally stand with us!
Love to you,
Jackie
I am on vacation starting Tuesday, Nov. 18th and returning on Monday, Nov. 24th.
If you need assistance, please contact Lon Dunn at (562) 208-9490.
Thank You.
Sharon Maines
I agree with Janelle. Keep calling til you get one of the doctors to hear
you!!! Fight back and get the doctors to pay attention!
I am so sorry you are in this spot. WE can relate to it thought 27 has come
and gone in my life. I understand your pain.
I tried digestive enzymes tonight and the pain got worse! Ugh! I have the
opposite, I am always nauseous so I am constantly eating carbs like
crackers,etc… I have gained a bunch of weight but when I hurt and feel
sick, I need to put crackers in my stomach-
I hope sure hoping Dr Freeman can help you!
Love to you!
Jackie
Jackie, don’t feel alone about the weight gain, i am right there with you as i crave the carbs, but my diabetes is a low carb thing, it is damn if you damn if you don’t. what we don’t go through. healthy people have no clue how good they have it !!!
Hello All,
Thanks for the words of wisdom. I emailed Dr. Freeman this morning and he said if I had pancreatitis again, here is what he’d suggest: 1. try another ERCP and then 2. total pancreatectomry with islet transplantation. I really don’t understand this because I supposedly have nothing wrong with my pancreas. I just had an MRI and it showed no damage. I also have no cause for my reaccurent bouts of pancreatitis. Why in the world would they take out my pancreas if there is nothing wrong with it and they don’t know what is causing pancreatitis to begin with. If I did have it removed, whose to say that my pancreatitis would go away if we don’t know the underlying cause. The underlying cause could still “fire up” and cause me damage, possibly of other organs. I am just so confused! My attacks started last year and they are coming closer together…why? I would just like to know the underlying cause or get some better answers. Anyone have advice on what I should do, say, or where I could go next for another opinion. Life I have stated before, I have already had three opinions…none are very good. They do say I have pancreatic divisum…is there a different treatment plan for this? Total pancreatectomy is serious business for someone who doesn’t know what is going on in her body. HELP!
Danielle
Sorry to hear about all of your troubles…I truly hope you find relief.
The best place I’ve ever found on the web for information is on the Johns Hopkins’ site: http://gastro.nts.jhu.edu/pancreatitis/
Take a deep breath, then take another, and then spend at least an hour reading through this site. Research the medical terms (on either this site or wikipedia) that you do not understand. It will help you better understand the disease and what to do about it. It may be scary, but you will feel better once you put in the time. After this, I guarantee you can have a better discussion with your doctor.
Archer
Hi Danielle,
I hear your frustration and it is no wonder you don’t know what you should do. I want to caution you because of what happened to me. My experience is that even though we have all of this modern technology, it seems when it comes to organs (especially the pancreas) doctors are shooting in the dark much of the time. I had many tests. One doctor said I had divisum and tried to place a stent but couldn’t. So I was sent to Dr. Freeman. He told me it wasn’t divisum, it was idiopathic or auto immune pancreatitis. He also told he the treatment option of removing the pancreas and transplanting the islets to the liver. (I was devastated by such a suggestion). I think the idea there is to treat the pain. Remove the pancreas- get rid of the pain, tranplant the islet and keep normal insulin functioning. Needless to say after all that Dr. Freeman had Dr. Mallery take a look at my tests and he did another ultra sound and now they say I have terminal cancer and going to die. So my point is…it took the doctors 2 MRI’s, 2 EUS with ultrasound, a colonoscopy and an ERCP and one biopsy to determine their final diagnosis. They do not know necessary have it all figured out. I then took this information to the Mayo Clinic and even though they agreed with the diagnosis…I was presented with different treatment options. Then Mayo referred me to a oncologisit near my home and he has presented me with even more options that none of the doctor’s prior had even bothered to tell me about. So again…back to my point…I know it’s hard but I suggest you keep calling and keep getting additional opinions until you feel satisified and confident in a treatment plan. It’s your life and your body. Only you can decided what it right for you and the doctors do not always know. You have to tell them. Ok, sorry. I will get off my soap box. My heart just hurts hearing about your struggle. I wish I could fix it for you. Hang in there. Janelle
Amen! Sending you a big hug!!!
Jackie
Danielle,
I am hoping you’ll get some good advice from our website. The only advice I can give you is…take your time! Don’t rush into anything!
Sending love,
Jackie
Danielle,
There is a website called Medifocus.com. It has a whole book on pancreatitis. You can download it or just browse through it. It defines all the different kinds of pancreatits, sypmtoms and treatments. I printed it out and put it in a notebook. When I get confused I read through it. I see something new every time I read it. It does have information on pancreatitis divisum. There are also articles that you can access on the web about different issues of the pancreas written by medical people.
Also go to the posts from Joe M. about his experience with the total pancreatectomy. You can add him to you friends list and email him directly. He is really good to answer all questions about his experience.
I pray this will help and give you some peace of mind.
Keep the Faith and God Bless,
Vonnie
I thought I was the only one who feels like the doctors are just making wild guesses at our condition and treatment options! My pain and nausea has returned full force, again! My family doc is in the process of trying to get me into Dr Aliperti in st louis, in the mean time he sent to the er yesterday, even though I explained why it would do no good. They did exactly what i said they would, stuck me 6 freaking times! got the blood, fluids and pain and nausea meds thru iv. then told me everything looked “normal” and sent me home. i looked at the lab results and they are far from “normal”! Their own report said some things were out or range! so I know how you feel and am praying for you dear. please keep us posted on how things are going.
hugs and prayers,
dream
Yup, they don’t call it “Practicing medicine” for nothing, after having at least 40 attacks in the last 35 years 85 percent of my blood test were in the “normal range” And they really do not know much more today than they did 35 years ago ! Sad but true. Not to mention having to move on to new doctors because of the way they make you feel after awhile when they can’t help you! Like your faking it, or just a lowly scum bag addict, trying to get drugs from them ! I became disillusioned with the medical profession a long, long time ago.
I don’t mean to sound so negative but that’s just the way I see it ! Sorry, You just have to do the best you can and unfortunately sometimes learn to live with it. I am at the point that if I can keep my intractable pain in check, it’s a good day! And not to mention how they turn you away the minute you have no insurance or cannot pay off the balance on your account ! Any thoughts on this??? ettibec@yahoo.com But then I’m not sure anybody is reading this or even cares???
You are right on many issues. Insurance is a biggy! I am so sorry that you have been treated like garbage. It is so shameful that doctors behave so badly!!! Of course, you missed the part where the doctors think we’re all alcoholics. I will say that the doctors I have encountered haven’t been too bad and one has been very compassionate BUT if I had no insurance… it would definitely be a different story!
When I am not in pain it’s a good day,too. The pain pills are so tough and make me even more nauseous! I seem to be throwing up more lately. Anyone have any suggestions to keep the nausea in check. I tried the rubbing alcohol and giner that people suggested…
I also found that digestive enzymes actually make it worse! Ugh!
We really picked a dilly of a disease didn’t we? Well I send love to all and praying for you
Janelle, I am sending you a very special hug today (and every day)
Jackie
Fredo,
have you checked with your local community clinic? also if you have no insurance do you qualify for any kind of government assistance? I know you have probably already checked these avenues out a long time ago, but I’m still relatively new to this and still fumbling my way around it myself. Luckily i have insurance through my husband, but that might not last very much longer. funny how when you get sick that’s when you become the burden huh? when i made 30,000+/yr everything was hunky dory, now that I’m unable to work due to ever increasing pain we are losing everything. Don’t forget to check with charity organizations and the local churches, sometimes they can point the way to something that just might help us out.
harlsp,
I was just thinking that same thing this morning. Why couldn’t I have gotten something more common that they know about and can treat. Oh well, I guess life just had something else in store for us. I just try hard to keep my faith in God and that he will bring me through this.
I hope everyone is having a wonderful weekend,
dream