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My Experience Living With Pancreatitis

Disclaimer

I am not a doctor. I am not a Ph.D. I didn't even attend college. Read everything on this page. If you need to leave, bookmark the page. The reason you'll want to do that is because I seriously doubt you will find this kind of in-depth, from-the-horses-mouth kind of information about living with pancreatitis anywhere else on the net unless it is on one of my sites.

Why Listen to Me?

Just because I am living with pancreatitis doesn't mean you should listen to me. I may have been living with pancreatitis for over 30 years, but that simply means I could be a lucky idiot; length of time in the saddle certainly doesn't mean I am a skilled rider does it? So, what is the real reason you might be interested in listening to me?

I Am Pain-Free-—and Symptom-Free

This is the most important reason. I was driven to uncover the formula, the secret to healing. If you are looking for information on how to beat pancreatitis and live pain-free I will share what I have learned with you.

The information you'll read on this page is not from someone who has simply read about the condition in order to gather the information necessary to write an article. This information is from someone who was diagnosed with pancreatitis, lived with the condition for a long time, and has found ways to adapt, improvise, and overcome.

That being said, please consult a licensed healthcare professional before beginning any dietary changes or treatment plans. But take their advice, as well as mine, with a grain of salt, and make sure you are well-informed before choosing any course of action.

Don't Take it Lightly

Sure the overall death rate from acute pancreatitis may average at less than 10 percent, but if you are one of the unlucky 10 percent, that would certainly suck, wouldn't it? Complications such as necrosis, infection, hemorrhage, and organ failure can bring that percentage up to 50 percent. The damage caused by acute pancreatitis often leads to chronic pancreatitis, causing long-term suffering.

If you have been diagnosed with acute and/or chronic pancreatitis, want to prevent more attacks and resulting damage, and lessen your pain and other symptoms without narcotics—and possibly heal your pancreas as well—this may be the article you've searched high and low for.

This article contains information on:

  • My personal pancreatitis story
  • How to stop an acute pancreatitis attack in less than 90 minutes
  • Which foods are safe to eat and which foods will make you sick
  • Why you should drink grapefruit juice
  • The five supplements that helped me tremendously

And much more.

Why I Want to Share This Information

After gathering tons of information via research, and successfully getting rid of my pain and other symptoms, I was asked to share what I have learned. I compiled everything in one place for people who are suffering from pancreatitis or know someone who is.

As you read, you will learn about symptoms, my experience with doctors (and what I think of most of them), the primary and secondary causes, and the possible complications of the condition. You'll also discover what I have learned through experience about such things as diet, alternative home remedies and supplements, and my own regimen that I follow in order to make living with pancreatitis a lot easier, and I think safer.

My Pancreatitis Story

I was playing center linebacker for my high school football team when the injury happened. The fullback had the ball. He came through the line, head lower than mine (dummy me), and when we collided, his helmet smashed into my gut. About 200 pounds of charging meat smashing into my gut at full bore. I made the tackle, but he tagged me hard just below the rib cage—center mass. It felt great.

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I sat out the rest of the game and my folks took me to the family doctor. I lay flat on my back as he put his hand on my abdomen and asked me to do a sit up. I couldn't. He figured the contact had torn my abdominal muscles and told my folks that I was to sit on the bench the rest of the season.

I started having more problems soon after: heartburn and nausea. My doctor thought it might have been an ulcer. That led to my first upper gastrointestinal (GI) test—the results turned up negative. He then scheduled me for a dye test for gallbladder disease. I guess teens can have gallstones, too; however, my gallbladder worked fine with no signs of gallstones. So, when tests didn't reveal any cause for my symptoms, I was, of course, diagnosed as a "headcase" with hypochondria. He obviously didn't remember I had been hurt playing ball. Here's the funny part...

My Symptoms Simply Disappeared

After several months of feeling like crap—with bouts of nausea for as long as two weeks and heartburn that started in my gut and traveled all the way to the tip of my tongue—my symptoms simply vanished. I was fine. Hey, I was damn glad they were gone. I didn't miss them, the doc, or the medical tests one bit.

I graduated from high school and enlisted in the Marine Corps. Towards the end of my last tour of duty, I started getting sick again. This time, I experienced heartburn, nausea, and pain. The pain would start in my stomach and bore into my back or vice versa. I went to the sickbay. The corpsman couldn't determine what was wrong and figured whatever it may be way beyond his pay grade, so he scheduled a visit to Oakland Naval Hospital. I felt good about the appointment because military doctors are usually good; they have to be to save lives in wartime trauma situations. I was looking forward to a resolution of my problem.

While at the hospital, I was subjected to another upper GI test, more blood work, saw a Naval doctor, and was sent back to duty with a prescription for Librax. The Librax took nausea away, but it did nothing for the pain. After about 30 days of on-and-off sickness, the symptoms again disappeared. What a relief to feel normal again.

I'm Diagnosed a Nut?

I found out later—after my enlistment and an honorable discharge—that the Naval doc thought it was all in my head (tests showed nothing), and he put that in my selective re-enlistment bonus (SRB)! I found out when applying for life insurance. I was told that my SRB showed a possible mental disorder. If I had stayed in the Corps, that little bit of info in my SRB could have seriously damaged my career as a Marine.

The Hurt Locker

Then, in the late 70s, the symptoms came back with a vengeance, and I visited the ER seven times. Seven ER visits and none of those people could figure out what the problem was. I was beginning to dislike doctors and understood why their business is called a practice. I had one doctor—a digestive disease specialist—tell me after a whole five minutes that he thought I was too young to have a serious problem and that he was sure I had a spastic colon.

Back then, I did not have a computer or access to quick information online, so I spent a lot of time in the library reading about diseases and their symptoms. I found that gallbladder disease can present with similar symptoms, and passing stones can be painful, but there are some key differences between gallbladder disease and pancreatitis.

  • Alcohol doesn't affect the gallbladder but will cause major pain with pancreatitis.
  • With pancreatitis, the pain is usually more severe and sudden, but it can also have a gradual build up. Patients often experience a telltale pain starting in front and boring into the back or vice versa.

Symptoms That I Experienced

  • Severe pain
  • Swollen abdomen
  • Nausea and vomiting
  • Fever and chills
  • Sweating
  • Rapid heartbeat

One symptom I had when the condition was really bad was that I could not stand something, like an arm or hand, laying on my abdomen. It would make me nauseous and cause pain. At times, any motion (e.g. driving the car or running) would make me sick, and I had never experienced motion sickness of any kind before—even on board ships.

I finally found a really good doctor, Dr. Langdon, who not only reordered tests I had done previously but also ordered new tests, some of which he did himself, like sticking a scope down my throat so he could view my bile ducts.

He gave me two drugs that induced an acute pancreatitis attack while in his office. He then drew blood every 30 minutes for approximately three hours when my enzyme levels suddenly spiked. This confirmed his suspicions. He asked me how many times this had happened, and I told him of the seven ER visits and that those were just the really horrible attacks. He calmly mentioned that I was lucky I wasn't dead.

The "You're Gonna Die" Chat

We had our little discussion about "preparing for the worst." He told me I had been having acute pancreatitis attacks and that I'd probably continue to have chronic problems. He went on to say that within 10 years I'd be looking at a pancreatic transplant because my pancreas would cease to function; that I wouldn't be able to eat and that the success of pancreatic transplants at the time wasn't the best. I think he was trying to tell me that within 10 years I might be dead.

I had finally found a good doctor. He told me to cut out alcohol and gave me a few prescriptions. The first, Robinul, was to help slow down the digestive process. Compazine was for nausea and Demerol for the pain. The Demerol didn't help—it didn't even take the edge off.

However, one night, while I was in massive pain, I was going through the medicine cabinet when I discovered my wife's Motrin—big pills that the bottle said to take for pain. I was in extreme pain, so I popped one of those horse pills. In about 30 minutes, my pain started to subside and completely went away in less than an hour. I was one happy guy. I told Dr. Langdon about the pills. He told me they were an anti-inflammatory, and as long as they worked, he sure didn't have a problem with them. In fact, he was a little upset that he didn't prescribe an anti-inflammatory since pancreatitis is an inflammation of the pancreas.

Cool! Things were looking up! I had pills that would slow down my gut, pills for nausea, and pills that actually took the pain away without the chance of becoming addicted to opiates like morphine. Now it was time to learn how to heal and beat the 10 year time period.

I Wanted to Live

I did loads of research after my diagnosis that led me to completely eliminate red meat, pork, mayo, butter, cream, and everything else with high-fat content from my diet. In other words, I was on a diet of fish, poultry (chicken and turkey), fruit, vegetables, legumes, and whole grain products. I also started taking vitamins and minerals to enable me to get enough nutrients absorbed because one of the complications that arise from pancreatitis is malabsorption. Basically, it means you don't absorb nutrients from food like you should. I started taking a multivitamin/mineral formula.

Years later I found research on OPCs (antioxidants like Pycnogenol and grape seed) and curcumin (turmeric). The benefits of the two sounded too good to be true, but I gave them a shot. I started taking vitamin C, grape seed, and turmeric. Then, after six months of no problems, to test the effectiveness of the supplements, I stopped taking my prescriptions. Six months later, I still had no problems. The diet and supplements were definitely working.

However, I didn't know what part of my treatment regimen was most important, so I tried eating red meat. After a few days of steak, roast, and hamburgers I was sick as a dog. So that meant the diet was very important. Once I was symptom-free again I eliminated the vitamin C, grape seed, and curcumin. Soon I was sick again. I figured that meant that both the low-fat diet and the three supplements were necessary.

What I got away from this: I'm still alive and can still eat.

... inflammation of the pancreas causes some of the most severe pain that people have ever imagined

— Dr. David C. Whitcomb

Those of you who have friends or family who just can't get their head wrapped around the agony you go through and say stupid things like, "It just can't be that bad!" or "I've had a baby, that is the worst pain. I don't see how yours can compare." or some other ignorant, uninformed remark with regards to your ability to function—have them watch the video below.

Common Causes

The two most common causes of pancreatitis are gallstones and excessive alcohol consumption.

  • Gallstone pancreatitis occurs when a gallstone or stones pass from the gallbladder and get stuck in the pancreatic duct or the ampulla of Vater portion of the common bile duct.
  • Alcoholic pancreatitis has always been thought to occur in those who consume large amounts of alcohol (frequent drinking over time or binge drinking).

Other causes include:

  • Traumatic abdominal injury: A car wreck, bad fall, gunshot wound or a 200-pound fullback slamming into your gut at full speed may cause pancreatitis.
  • Pancreatic cancer
  • Autoimmune disease
  • Hereditary pancreatitis
  • Some medications (the list is long)
  • Surgery and certain medical procedures such as ERCP
  • Infections like mumps
  • High blood fat levels
  • Sphincter of Oddii dysfunction
  • Pancreatic abnormalities such as pancreas divisum

Research on Genetic Causes of Pancreatitis

Pancreatitis pain is horrendous. I wanted to post this so that patients' family members and friends can hear from a prominent pancreas doctor what the pain is like.

Researchers are discovering some types of pancreatitis are hereditary and that some patients may be genetically predisposed. This type of information may be of value to those who are like me and like to know why they may have this disease condition.

Dr. Whitcomb, Chief of the Division of Gastroenterology, Hepatology and Nutrition at the University of Pittsburgh Medical Center discusses the genetic factors involved in those who develop pancreatitis.

Complications

It is extremely important to understand what you are really dealing with and how important it is for you to keep your pancreas as uninflamed as possible in order to avoid serious complications that could result in your death.The more you do to help yourself, the better off you are going to be.

The more serious, life-threatening complications:

  • Pancreatic cancer
  • Necrotizing pancreatitis (infection)
  • Organ failure (kidney, heart, lungs, liver)
  • Systemic shock

Other complications include:

  • Pseudocysts
  • Breathing problems
  • Diabetes
  • Malnutrition
  • Acidosis

Pancreatitis Can Be Difficult to Diagnose

One reason is that many doctors have difficulty diagnosing anything unless it slaps them in the face. For example, only a CT scan showing damage due to inflammation or cysts the size of watermelons will help them arrive at a diagnosis of pancreatitis, but if you don't have those types of complications yet, it can be difficult to diagnose the problem.

If you have moderate to severe gastrointestinal symptoms and have yet to have a doctor give you a correct, common sense diagnosis, make sure you persevere in finding a gastroenterologist who received his/her degree from somewhere other than Cracker Jack University, is able to recall what they learned in medical school, and uses common sense along with the modern diagnostic tools.

I know I am asking a lot because finding a good doctor with great diagnostic skills is like locating a huge placer gold deposit, but I know there are at least one in 14 (7%) who have brains and diagnostic ability. In fact, here's one who wrote a review article about chronic pancreatitis and the current problems of diagnostic criteria.

Just make sure you don't give up. The sooner you get diagnosed, the better because there is evidence that the damage from both acute and chronic pancreatitis can be reversible if it is diagnosed early enough, if you take appropriate measures to ensure the inflammation has completely abated, and if the tissue is allowed to heal.

I wish you good luck.

Life Expectancy

I know, from personal experience and what I read on online support groups, that life expectancy is likely on your mind, and this is a difficult question to which I have no definitive answer—and neither does anyone else.

I was told I may have only 10 years left when I was diagnosed. A few articles say 7-10 years once diagnosed, while others say it takes an average of 10 to 15 years off your life expectancy.

  • "Determining the cause of acute pancreatitis and treating it quickly may help prevent chronic pancreatitis. Not drinking a lot of alcohol reduces the risk of developing this condition." MedLine Plus
  • "Chronic pancreatitis is associated with a reduction in life expectancy. Only half of the patients with a diagnosis of chronic pancreatitis will survive for longer than seven years following diagnosis." NetDoctor
  • "This is a serious disease that may lead to disability and death. You can reduce the risk by avoiding alcohol." PubMed Health
  • One article, published in 1994, states that survival rate at 10 years was 70 percent. That is good news! Seventy percent were still alive at the 10-year mark; maybe things have improved, and survival is much better today.
  • Another article, published in 1993, states that pancreatic surgery ends up being worthless as far, as pain management is concerned, and that survival time is about the same. This should tell you to search for other options. I absolutely believe I have survived for 20 more years than I was told because of changes to my diet, supplements, and avoiding the use of medicines and procedures that promote acute pancreatitis.

All of this tells me that even though the pain may make you wish you were dead, you can live for a fairly long time with this disease. In fact, I am living proof that you can live with, and overcome, pancreatitis as long as you are willing to change certain things.

To me, it boils down to is this: Most people who die from chronic pancreatitis likely die from an acute attack that turns into severe acute pancreatitis. If you look closely, none of the articles above state that patients die directly from chronic pancreatitis. It is usually the result of complications, and what is the most likely complication?

Acute pancreatitis.

This leads me to believe that if you can prevent acute pancreatitis, you may be able to extend your life. Would that not be a good thing? What are you willing to do to survive and maybe enjoy life again?

Are you willing to quit drinking?

Are you willing to avoid foods that trigger acute inflammation?

Only you can answer those questions.

Is There a Cure?

I know that when you are in extreme pain, there is nothing you'd like to find more than a cure.

I'm not gonna lie to you. There is no cure for pancreatitis.

However, my research is leading me to believe there may be hope of possible pancreatic tissue regeneration. If this is possible, the treatment would go further than just preventing pain and catastrophic damage and possible death due to shock, necrosis, infection, or organ failure. The less damage sustained, the easier it will be for the pancreas to regenerate.

Don't get your hopes up.

However, if there is any possibility of regeneration, I am sure it would only happen when the pancreas is not inflamed by alcohol or a poor diet.

I know that even though the possibility of pancreatic tissue regeneration may be good news—it isn't the news you were hoping to hear. You were hoping to hear that there is indeed a pancreatitis cure. As far as I know, there are none. Once the pancreas is damaged, it is likely you will have another event of acute inflammation, after which the condition will become chronic. Since there is no cure, we must adapt and improvise to manage the pain and damage and allow the pancreas to heal.

Mayo Clinic Pancreatitis Treatment

This fairly new surgical technique could be a real blessing for some people with necrotic pancreatitis. There really are some brilliant minds out there in doctor land, finding them seems to be the difficulty.

Surgical Procedures

Below, I have included links to information on what I categorize as "last resort" options. I do not recommend slicing and dicing. The sickest people—those who cannot seem to heal—are the ones who have been, what I call, "gutted" by some surgeon. There are instances (necrosis with infection) that certainly warrant surgical intervention, and the patient may not live without it. Under those circumstances, you may have no choice.

For those who are not yet seriously damaged, I am more inclined to suggest a total lifestyle and diet change. This has worked for me, though it isn't easy to give up foods you love. Still, I'd rather do that and keep my organs intact.

However, many people may not share my views. This is why I've gathered information on common surgical options. When you continue to eat foods that are inflammatory to the pancreas or continue to drink alcohol, sooner or later, you'll need this information.

Surgical Procedures

Surgery for Necrotizing Pancreatitis

I have been lucky. So far, to my knowledge, I have not had any major complications such as necrosis, cysts, or infections. The last thing I want is to now develop necrotizing pancreatitis. It has a fairly high death rate—as much as 50 percent when coupled with organ failure. This is why I take great care in adhering to my very low-fat diet, abstaining from alcohol in every form, and consuming sufficient quantities of certain vitamins, minerals, antioxidants, curcumin, grape seed, vitamin C, and enzymes.

The Puestow, Frey, and Whipple Procedures

These surgical procedures are done either to correct complications or alleviate pain. Once done, they cannot be undone, and most people who I have either chatted with online or read about are worse off after the procedures than they were before. Some experience pain relief for a brief time but then are back in the same boat—and usually worse because their boat now has holes.

Islet Cell Autotransplant After Total Pancreatectomy (TP/AIT)

Twelve-year-old Brittany Alexander suffered with pancreatitis since she was four years old. In May 2012, Brittany underwent a pancreatectomy and islet cell autotransplant. One month after her surgery, Brittany talks with Dr. Katherine Morgan and nurse coordinator Betsy Shuford at the Digestive Disease Center Division of Gastrointestinal Surgery at the Medical University of South Carolina in Charleston.

Important Note: Brittany and others I have found online have newly done procedures, all within the last couple of years. I have not been able to find any living patient experiences after five years. Make sure you read the next section about TP/AIT, including what little research there is online about outcomes—both short and long-term—that seem to be very elusive and non-existent.