IS THIS EVEN POSSIBLE?

HEALING MY PANCREAS
Nov, 2003 – Jan, 2021
INTRODUCTION

I would like to say first off I have nothing to sell. This is my honest account of my journey from the beginning of this disease until now. I did some things right, I made mistakes. I’m not perfect and I don’t judge anyone. My story is as it is.

It has been over 18 years that I have dealt with the medical industry version of chronic pancreatitis, but this problem most likely began before I was born. My initial diagnoses was ‘pancreatic divisum” but the repeated episodes of pancreatitis caused other damage to my pancreas. But not every damaged pancreas is the result of drinking alcohol. I can recall being 7,8,9 years old and having ferocious pancreatitis like pain that only lasted a couple of hours at a time.

What I intend to do with this paper is to share some of what I learned throughout my journey with the medical profession, the health insurance industry, the pharmaceutical industry, pain management professionals, private hospitals, university hospitals, trying to work full-time, leave of absences from work, random admissions via the emergency room, surgeons and ultimately social security disability and life thereafter. I learned so much during all these processes and hope to share what I learned as well as what I wished I had done. Hopefully there will be people can benefit from my experience.

Pancreatitis didn’t happen like a lightning bolt hitting all at once, rather it occurred over a longer period of time. The windup to full blown pancreatitis happened over about 4-5 months from late 2003 until early 2004. A curious part was stepping on a scale in my bathroom and seeing that I was at 226 lbs and that was heavier than I had ever been. I was 42 years old, married with 3 kids and a successful career in the gaming industry. My interpretation of my health was very good (we’ll get into that later) and life was going along great. But I thought that I needed to drop 15-20 pounds and it was beginning to lose weight is where the pain gradually became worse. As the pain became worse, my weight continued to drop. I was taking over the counter remedies like aspirin, Tylenol, Pepto- Bismol, Roll-Aids, anything I could think of that might help. Beautiful family, good job, friends and good health. Nothing on the radar, nothing foreshadowing this disease.

Chapter after chapter I’ll discuss many of the underlying issues that we all face, but I assume if you’re reading this, you or somebody you know has a weak link in their pancreas and that can be fatal. Being diagnosed with pancreatitis can be horrifying. Especially since most of us had no idea what the pancreas was or what it did.

The first thing we need to understand is what does our pancreas do and what is pancreatitis. If you’re like most people, your first question is most likely what does a pancreas do? We heard about it in high school biology but most of us don’t remember what a pancreas is for.

The clinical definition goes like this: The pancreas is a glandular organ in the digestive system and endocrine system of vertebrates. In humans, it is located in the abdominal cavity behind the stomach. It’s important to know that where the pancreas is located, as one Doctor put it to me “in the area of some very expensive real estate”. Near the heart and lungs and next to the solar plexus. It is an endocrine gland producing several important hormones, including insulin, glucagon, somatostatin, and pancreatic polypeptide, all of which circulate in the blood. The pancreas is also a digestive organ, secreting pancreatic juice containing bicarbonate to neutralize acidity of chyme moving in from the stomach, as well as digestive enzymes that assist digestion and absorption of nutrients in the small intestine. These enzymes help to further break down the carbohydrates, proteins, and lipids in the chyme. The pancreas is known as a mixed gland. I’ve been told that the pancreas is the only organ that produces both a hormone and an enzyme. Pancreatitis, like tonsillitis or appendicitis is the inflammation of that organ, anything -itis is inflammation.

So why not just take it out, like a gall bladder or appendix? Short answer is you’ll die without it. Since the digestive enzymes and the insulin, it produces break down proteins and carbs and fats while keeping your blood sugar in balance. Without a pancreas, you probably wont last long. My first surgeon said, “without it, you’ll be a pancreatic cripple”. There is a procedure now called ‘Total Pancreatectomy/Auto Immune Transplant (TP/AIT). This procedure is fairly young in that it has only been done successfully for barely a decade.

I’m not a doctor and while there are a whole host of pancreatic abnormalities, my emphasis is to focus on the overall health that we maintain in an effort to keep our pancreases functioning and keeping us healthy possible. While there isn’t a magic cure, many of the topics I will discuss can and will help you.

So, the pancreas is an endocrine gland AND a digestive gland. The fact that it produces both hormones and digestive enzymes should make you realize just how important it is. While those hormones and enzymes can be substituted, your pancreas is one of a kind and cannot be duplicated. Occasionally we see articles about Doctors developing a mechanical or artificial pancreas. Hopefully it will help someone in the future, but could you imagine having an artificial sex gland? How weird would that be? It certainly could never be the real thing, lol sorry I couldn’t resist.

WHAT CAUSES PANCREATITIS AND WHAT CAN I DO?

There are a number of causes of pancreatitis and while I’ll list a few, what is more important than what caused it is figuring out how to stop it. Pancreatitis is one of the most painful events that can happen to a human. So if your pancreatitis was originally caused by alcohol use, that doesn’t necessarily mean that by stopping drinking your pancreas will heal. A damaged pancreas doesn’t really heal itself like other organs can. Many times it was the alcohol that irritated a weakened pancreas, but not really the cause of the disease.

Some of the more common causes of acute pancreatitis are:

Genetic mutations like pancreatic divisum
Congenital abnormalities
Cystic Fibrosis
Alcohol
Smoking
Autoimmune
Idiopathic
Overly fatty diet (triglycerides)
Gall stones
Several medical procedures can cause an attack

Idiopathic pancreatitis is diagnosed often and that simply means the underlying cause can’t be identified or is unknown. So, peoples’ lives are upended and turned inside out and the medical profession does not know why. I’ll address that later and what some of the potential causes are that aren’t talked about. While everything can’t be known, there are obvious environmental abnormalities at work.

So these are some of the underlying causes of this disease, but what can you do to prevent it once it has happened or at least manage it? There are a few surgical procedures that are available but all of those come with dangerous and potentially deadly complications (as do all surgeries). Morbidity rates are high with any pancreatic surgery, remember it’s in a high rent area of the body. There are many instances whereby surgery is the only really viable option. But in most cases surgery isn’t really necessary.

Whatever the cause of your episode of pancreatitis is, your goal has to be to do everything in your power to prevent another one. Getting through an attack will probably mean taking pain medication, Intravenous fluids (if you are admitted to a hospital) or staying fully hydrated with water at home. We’ll talk more about this later, but good hydration is crucial for healing. You’ll also want to fast while the attack is still active. It’s hard, but you have to get by an attack as soon as you are able and not eating will help.

Dealing with an attack will be enormously difficult, I never found or heard of an easy way, period. But the steps you take during an attack are critical.

GETTING GOOD MEDICAL ADVICE

Always get the best medical advice you can get. The beginning stages of this disease are so confusing and honestly there are many in the medical profession that aren’t up to speed on some of the more obscure health problems like pancreatitis. There is a long-standing stigma in the medical field that pancreatitis only happens to alcoholics, or that people seeking narcotics use this disease as a method to get drugs. I won’t try to dispute the fact that alcohol is bad for your pancreas, but only 2-3% of alcoholics ever have pancreatic problems. And since children can get this disease, obviously not everyone who is diagnosed with it are alcoholics. You will hear a lot of random information when it comes to pancreatitis and it’s your responsibility to make sense of it. A second opinion can save your life. I found a GI that I trusted and did an amazing job getting the right referrals approved by my insurance company and I trusted his advice and was comfortable with him. We’ll call him Dr ‘K’ and I seriously hope you find your Dr K.

Unless you are talking to a good or great Gastroenterologist (GI), you probably aren’t going to get the best advice or the proper referrals. The problem is the really good ones are hard to come by. Depending on where you live, there may only be 1 or 2 or even none in your area. I can’t tell you how many General Practitioners and pain management specialists looked it up while I was in their offices. It’s no slight on them, it’s just most people in the medical field don’t come in contact with pancreatitis very often.

I distinctly remember my first visit with a real GI (turned out to be the best one I ever saw) and by that time it was chronic. I had lost so much weight and the pain was unbearable. He gave me all the time I needed to ask all the questions I wanted. And one thing he said that I never forgot was “if you take really good care of yourself, no smoking or drinking, a healthy diet, a positive lifestyle, sleep good, exercise and all that, the nerves can burn out. And while the root problem wont go away, you can have a normal-ish life.

One of the best things I learned is to ask questions when I did have an appointment. In fact, I began to write a list of questions to ask. This is invaluable because there were so many things I wanted to know but forgot to ask when I was at the appointment. I traveled to so many hospitals to see specialized surgeons and then didn’t remember to ask really important questions. Make a list! Ultimately your healthcare is going to be up to you, you have to be persistent.

Insurance companies are notoriously tough to deal with when it comes to diseases like chronic pancreatitis. I wish I knew a magic word to say to them, but the truth is they have all the cards, and they know it. The only thing that really worked was persistence. When I was at my lowest point, I was spending hours making phone calls, writing letters and emails and using every option I had. It shouldn’t be like that, but I never really found it to be any other way. They didn’t want to pay for certain prescriptions, they wanted a second opinion, they didn’t have a contract with the hospital I needed to go to etc. You have to work with your doctors to make your case.

One thing that people don’t think of in the beginning is to start that paper trail. It’s all a whirlwind process and stuff falls between the cracks, but you may need all that documentation later. I’ll revisit this later but you may need to “connect the dots” later on and reproducing those documents later can be difficult. Save the MRI stuff, save the diagnosis stuff, save the CAT scan stuff etc! Very important.

MEDICATIONS

Kind of a touchy subject these days but it’s part of the puzzle that is pancreatitis and no way around it. I’ve lost track of the number of medications that were prescribed to me over the years. Everything from digestive enzymes (some too expensive for insurance companies to cover), pain medications (Lortab, Percocet, Oxycodone, Morphine, Fentanyl, Oxycontin) by the truckload, xanax to relax, meds to help with appetite, muscle relaxers(?) and on and on.

So what works and why. Creon and Zen-Pep are digestive enzymes that are most commonly prescribed for pancreatic deficiency. Some people get some relief from these enzymes. My hope was that they would help me gain or at least maintain my weight and it just never happened. Also, I really didn’t like the fact that these enzymes were extracted from pig/swine pancreases. In trying to craft a diet that would help me, I didn’t like the idea of pork products. If you look at the label of these prescription enzymes, all of the ingredients are available over the counter also. I had to do a little mixing and matching, but they can be duplicated. When last I took the Zen-Pep, one month’s supply was over $800, and the insurance company forced me to get authorization every month in order to get it filled.

I’m not here to judge anyone about opioids, but where to start? Pain medication definitely has a place in dealing with pancreatitis, but how much for how long? It is such a complex, individual decision that no person can really be an authority on the subject. I found that pain medicine was most helpful in the early stages of an episode (2-4 weeks) but when I was honest with myself, they were probably causing more problems the longer I took them. I don’t believe long term use of opioids is a good solution.

So, do any pain medications really work? Absolutely! During most of my 17 hospital admissions, dilauded was the pain medicine of choice, it was the only thing that really worked but it also incapacitated me. The shots would offer relief, but I couldn’t even function and often drifted of into unconsciousness. Over some 11 years I took every pain med available to try and ease the pain, fentanyl, morphine, oxycodone, oxycontin all with some success. Anybody who has been off and on these types of heavy narcotics knows that quitting them is a monumental task in itself. I went to a few different Pain Management specialists over the years and found that whole business kind of hit or miss. Some were top notch professionals, some not so much. I saw one Specialist who for about a year and half and she thought I was seeing her for back pain? After a while I just went a long it. I would show up for my appointment and she would ask every month “how’s your back pain” and I’d answer it’s really bad. She wrote the scripts and I’d make an appointment for the next month, and that’s how it went for a year and a half.

I now believe that the addictive powers of these drugs is so strong, that your body/person can seduce you into continuing to use them by manufacturing a pain like sensation. In other words, your body can physically trick you into wanting/needing more. So even when you’re ready to stop, your body casts its own vote to keep them. Withdrawal can be a nightmare in itself. Whenever it was time to quit, I would start by cutting all the pills in half and then reduce it over a week or so

Part of the reason I wanted to spend time on this subject is to illustrate that the medical industrys’ approach is to deal with this problem are with the chemicals that are in pharmaceuticals. Short of having surgery, I never came across a better solution and that’s what prompted me to write this book. Your problem is not a deficiency of pharmaceutical chemicals, your problem is an unhealthy pancreas.

There are several surgical options, but they range from gruesome to something that is at the jagged edge of our surgical capabilities. So like a lot of people, I found myself in a place where I wanted the surgery to make the pain stop, but at the same time able to wait another 3 months or even 6 months. Long term pain management was not an answer either. There had to be a better way, somehow.

After 10 years of living this way, I knew it was now or never. I’d lost 90 pounds, taking handfuls of pills every day, trying to eat right but mostly not eating at all and one more thing..still smoking. Quitting drinking alcohol was easy. I drank a few beers almost every day but didn’t feel like I needed it. It had become a habit, but the pain was a bigger motivator. I kept smoking, I had smoked for a long time and to be honest, didn’t really want to give it up. Like most people I thought that giving up smoking is the end, once I do that, I’ll be healthy. Turns out to be just the beginning.

My last visit to UCLA University hospital in Los Angeles was for a consultation regarding the surgical procedure that was approved by my insurance company. It’s called a Total Pancreatectomy/Auto Islet Transplant (TP/AIT). This is the latest surgery to cure pancreatitis once and for all. Just like it sounds, your pancreas is removed and the islet cells that make insulin are harvested and transplanted into the liver with the idea that those islet cells will reattach themselves and begin making insulin. Since the pancreas also manufactures digestive enzymes, the patient will need to take digestive enzymes most likely for the rest of their lives. The plan was to begin the surgery, remove the pancreas then fly my pancreas via helicopter to a lab in San Francisco to harvest the islet cells. The patient would remain under anesthesia until the helicopter returned. I had to do more to help myself. I felt so weak at this point I did not believe I would survive this surgery and the lengthy recovery process.

My family thought that I wasn’t going to survive. My friends thought I was dying for sure. I was on and off medical leave from work and I knew I wouldn’t be able to return to work after this latest leave of absence. Bills were piling up, if I couldn’t work, I had no insurance and without insurance I couldn’t get back to work. House payment falling behind, my life was becoming desperate.

ALL DOWNHILL

At this point I had been dealing with this illness for almost a decade and I was no better off than when it started, in fact I was worse. I had been through so many MRI’s, ERCP’s CAT scans, stents and poked and prodded half a dozen specialists at a half a dozen hospital. Somethings helped and somethings made it worse, but I never felt like I was on the right course toward a real solution. I asked hundreds of questions and got different answers from different surgeons. They were all nice guys, but I felt like I wasn’t going to make it. There was no clear path back to health for me. There was no reasoning with it, no positive attitude and everything would be great. I was just miserable physically, mentally, emotionally, spiritually and financially.

One particular encounter it was explained to me that after a 14-hour surgery and up to 2 months in the hospital to recover, that I had a 50% chance of getting better!? It had gotten to the point that I knew I wouldn’t and couldn’t keep my job, I would probably lose my house and I was going further into debt everyday chasing an answer.

And in hindsight, this is why I wanted to write this book. Our pancreases are like oysters in a bay, they filter everything that comes into our body. Not in the sense that they clean anything, but rather through a process of osmosis. A lot of what I was drinking and eating, my lifestyle and my approach to this disease was compounding my problem of having a sick pancreas. I had made some minor adjustments at the margins but hadn’t made the wholesale changes that would truly help me.

Not a particularly religious person but I’ve always felt myself spiritual. But if I ever needed a divine intervention, it was now! I was falling apart; it was do or die time.

One of the very first pieces of the puzzle came in the form of water. If you pay close attention, ideas and concepts are often repeated in your life. Often, they seem coincidental or random, but it’s as if your subconscious is trying to communicate with you. Thousands of messages, ads, ideas and thoughts fly by us every single day (especially in this connected world we live in) but virtually all of them are ignored but a select few resonate with us.

SO WHAT AM I SUPPOSED TO EAT?

This seems to be the most commonly asked question by people trying to figure out how they’re going to survive after getting diagnosed. And since every person is different, there isn’t one answer. But there are common denominators, there are guidelines and there are suggestions that we can pay attention to. Some black, some white but mostly it’s all gray.

I’ll go first, I’m sure your situation is unique just like mine is and we won’t tolerate or be the victims of the exact same things. There are somethings that are indisputable, alcohol and cigarettes. While I’m not sure that alcohol causes chronic pancreatitis, but I can verify that it irritates the hell out of it. When I was first diagnosed with pancreatitis the Dr told me in no uncertain terms “NO ALCOHOL”. I didn’t want that pain ever again, so I quit. After about 6 months I was feeling better one day and I thought a couple beers wouldn’t hurt, boy was I wrong. After two beers I was thrown into a horrendous attack. I ended up in the hospital for almost two weeks. I haven’t had a drink since then and I enjoy my sobriety to this day. So that one is easy. If you Google pancreatic cancer and cigarette smoking, those results are obvious. Over 20% of pancreatic cancer patients are smokers and over 40% of those patients will die from pancreatic cancer. Those numbers are huge! I added information on quitting smoking later in this document.

Ok fat. No fat, low fat, some fat, dairy fat, monounsaturated fat and on and on, what can we eat? As humans we have to have some fat. Our brain and our systems wont function properly without some fat in our diets. My diet consists of lots of fresh vegetables and fruit, but I eat mostly grilled boneless, skinless chicken breast on a regular basis. Usually about a half of one grilled chicken breast (they’re huge now so it seems like a lot). with steamed or sautéed vegetables. I had been eating brown rice on a regular basis, but I’ve cut back on my carbohydrates (listening to the Keto diet people, no other real reason). I took that picture of the vegetables because I began to realize that almost all my meals started with that foundation. It starts with onion, always green leafy stuff like spinach, kale or bok choy. Tomatoes a big percentage of my diet. It’s very unscientific but I often slice up a Roma tomato with a sprinkle of salt and they seem to help keep me leveled out. Love fish at every opportunity, generally grilled or sautéed with extra virgin olive oil, not regular olive oil, but extra virgin olive oil. Whatever oil you can tolerate, use as little as possible. Don’t tempt fate.

I’m not a foody so I don’t miss not eating many things. I know some people have a hard time giving up certain foods, but it wasn’t that difficult for me. I’ve completely quit eating the other mammals like red meat or pork. Every time I’ve tried to eat red meat or pork it has caused me problems. I like eating less carbohydrates because I’ve found one of the biggest mistakes, I make is over-eating at one sitting and carbs just feel like more filler. If the digestive enzymes the pancreas produces break down fat, carbohydrates and proteins it only makes sense to reduce the fat and carbohydrates. I don’t think reducing protein makes a lot of sense.

I cook all my own meals. Processed foods are loaded with stuff that isn’t going to help you. Lot of chemicals, preservatives, low quality fats etc. it’s a little bit of Russian roulette with packaged and processed foods, I avoid them all. I’ve had so many attacks from restaurant food that I just don’t trust it anymore. It’s been years (5 or 6?) since I’ve eaten any restaurant food, sorry. Doesn’t mean you can’t eat it though. One thing I practiced when I was going through this process was to keep track of what I was eating. If I thought, it might be trouble, I just mentally made note of it. There will be times when nothing you eat will ‘sit’ right and may cause pain. Many times, it’s just your pancreas being disagreeable and if your instinct is right, go back and try that food again later. It’s part guessing game it part random with what works for you.

I don’t do much in the way of breakfast. Maybe a banana or oatmeal or both. Lunch very little also. Dinner is where I get most of my nutrition. It’s an important event for me and I’ve turned it into a meditative process. I look forward to it and spend much more time making it than it takes to eat it. I see the vegetables and other natural ingredients as precious. It’s kind of a Zen like experience every day. I enjoy doing it.

Everybody cheats, what do I cheat with. My Achilles heel is ice cream. I can have some now but there have been long periods of time where ice cream was a no-no. I also love Fig Newtons. Once you get balanced a cookie here or a snack there will be tolerable. Keep in mind the only thing I drink is water, about a gallon a day and some tea and some coffee. Nothing else.

The first nutritionist I consulted with was familiar with chronic pancreatitis and told me when I asked what I should be eating to “eat every single thing you can tolerate”. I had lost a lot of weight and it was refreshing advice. I think that’s the best advice for everyone who is suffering with this disease. You really need to keep in mind that too much fat will likely cause you problems, over-eating isn’t a good idea in fact lots of small meals/snacks are helpful when you are having pain. Sometimes just a saltine cracker or two will let you now if you can eat more. I can’t tell you how many times I’d eat a cracker or small piece of bread and let it sit for 15-20 minutes and try to get a reading on where I was at, and whether it was ok to eat more.

If you are having an attack my advice is to not eat anything, to fast for a day or two. Stay hydrated with water or something similar.

I believe that the more natural foods I eat, the more helpful my diet is to my health. I think we all know intuitively that fast foods and heavy fat foods aren’t beneficial to our overall health. Clean, healthy food in appropriate portions will help us to stay more balanced. Maintaining a healthy weight is also ideal when dealing with any disease. It’s absolutely true that we are what we eat and since pancreatitis is a digestive disease, a balanced diet is critical for our good health. Your eye knows what the good stuff is.

WATER

I was at the point where carrying cases of bottled water into the house was just too demanding. I was sick, I was weak, and I was losing my will. I lived in Las Vegas in the 1980’s when the Kerr-Mcghee rocket fuel plant exploded. They manufactured a chemical called ammonium perchlorate and it was used to ignite solid rocket fuel boosters for things like the space shuttle. After the explosion, the media found out that the ammonium perchlorate was in our drinking water which came from Lake Mead. What triggered this memory was a contemporaneous article about traces of multiple prescription medications showing up in drinking water all over the country. Prescriptions like birth control, anti-depressants and even pain medications.
But if I’m drinking bottled water, I should be okay, right? So why bring this up?

I started to dig deeper on the water issue. I made coffee in the morning with tap water (which was horrible water), washed my clothes with that same water. Brushed my teeth, washed myself and my hair, washed my sheets and pillowcases that I slept on, it was everywhere. So if this water permeated my life and it was all bad, what could I do?
If I couldn’t clean up the water in my life, how was I going to clean up anything else?

Whenever you’re having pancreatic pain or feel an attack coming on, one of the most important things you can do is stay hydrated. Being dehydrated is not a cure for anything. In fact, I had become scared of trying to drink anything but water. I wouldn’t drink coffee, tea or any soda or any sweetened drinks. Just water. I think we’re all aware that our bodies are made of some 70% water. So if we’re 70% water, what could be more important to us? And where do we go to get good water? I ask a lot of questions, hopefully it prompts you to think about these things. One of the first things they do when you’re admitted to the hospital is start and IV bag with a saline solution, so you begin to get hydrated. Hydration is critical.

Ninety-nine percent of the water that is used by Americans in this country is city water or at least processed in the same fashion as city water. Much of it is recycled from a previous use and all of it has fluoride and some form of chlorine. Many municipalities use more and more aggressive chemicals to treat the water, kill harmful bacteria and germs and remove sediments.

Our ancestors drank a different kind of water, true it was free of chemicals, but it was filled with deadly bacteria. Obviously, we don’t want deadly bacteria, but also would rather not have the treatment chemicals and pharmaceutical residues either. It’s a conundrum and I’ll tell you later how I approached this riddle, but it illustrates the level of focus you need to decide what you should and shouldn’t put in your body. You have to respect the process of how to determine what is worthy and why. No measuring cups or devices, very few hard and fast rules, just fine tuning your intuition. Re-learning what is actually good for you versus what you’ve been told is good for you. Hopefully with the right information you can decide for yourself. You already know more than you realize what your body needs, you just need to be able to interpret what it is.

Water in the 21st century has begun to feel like it’s the result of pure thought, that all we have to do is think of it and there it is. It is so ubiquitous that we’ve come to taking it for granted. Very few things are really more important than water, and not merely the acquisition of water, but clean, healthy water. It’s vital to good health and water is the foundation upon which you will build your pancreatic health.

Types of bottled water
It may seem like a lot of my time used on water, but I believe it is the weight bearing part of the foundation. If we don’t get the hydration part right, the rest of the structure will fall in on itself. What kind of water might seem like a stupid question but trust me on this part. Here’s a list with a brief description of what is available.
Artesian
Water obtained from a well that taps a confined aquifer, an underground layer of rock or sand that contains water. Example: Fiji Natural Artesian Water.
Distilled
Water that has been boiled and then recondensed from the steam that the boiling produces. Distillation kills microbes and removes minerals, giving water a flat taste. Example: Glacéau Smartwater.
Mineral
Groundwater that naturally contains at least 250 parts per million of dissolved solids. All minerals and other trace elements must be present in the water when it emerges at the source. Example: Calistoga.
P.W.S.
Public water source, also known as municipal water supply, or tap water. Fun fact: Aquafina, one of the top 10 selling domestic brands, used to say “P.W.S.” on its label—but changed that in 2007 under pressure from Corporate Accountability International to make clear that the water came from a public supply and not some pristine mountain spring called P.W.S.
Purified
Water from any source that has been treated to remove chemicals and pathogens according to standards set by the U.S. Pharmacopoeia. Must contain no more than 10 parts per million of dissolved solids. Distillation, deionization, and reverse osmosis are all purification methods. Examples: Aquafina, Dasani.
Sparkling
Water that contains carbon dioxide at an amount equal to what it contained when it emerged from its source. Carbon dioxide lost during the treatment process may be added back. (Carbonated waters such as soda water and seltzer are considered soft drinks, not bottled waters.) Example: Perrier.
Spring
Water derived from an underground formation from which water flows naturally to the Earth’s surface. Spring water must be collected at the spring or through a borehole tapping the underground formation (aquifer) feeding the spring. Examples: Arrowhead Mountain Spring

Ok so water, water, what is the best type to drink? In my opinion, the best water to drink is the one that you’ll be able to consistently drink every day. I prefer mineral water or even carbonated mineral water but I’m not sure that’s realistic that I drink that every day. Occasionally I spring for carbonated mineral water (I think the carbonation also helps settle my stomach when it’s acting up) but for the most part I drink a 4-stage filtered public water service water. It goes through a sediment filter, a charcoal filter, reverse osmosis and an ultraviolet light treatment. The ultraviolet part kills any bacteria that has survived the particulate filters and the chlorine gas. If you’re only drinking water and a lot of it, you need a potassium supplement. Large quantities of water will flush the potassium from your body and can adversely affect you heart.

SMOKING

Real quick (smokers hate being lectured, I know) If you’re still smoking it’s time to quit. I smoked like an old Buick for over 35 years. More than two packs a day and in combination with pain medications, I lusted for every cigarette. I visited dozens of Dr’s over the years and I’m certain every one of them said that I needed to stop smoking. And for years I said “yeah, I’m trying” and I hadn’t really done anything. Eventually it felt like my time was running out and I had to get serious. What I did was get a vape device. These are simple little devices that produce a steam that has nicotine and flavoring mixed in. I started with 18 mg flavored juice and within a week dropped down to 12 mg and then 9 mg, then 6 mg then 3 mg and ultimately 3 mg mixed with 0 mg and finally to 0 mg. It took about 4-5 weeks, and I was vaping 0 mg of nicotine. Not only do the vape devices deliver nicotine, but it also occupies your hands. They are simple, inexpensive devices that charge with USB ports like your phone. It’s been almost 8 years since I quit, and I think this is a great way to do it. I kept using the 0 mg for about two months just to prevent me from buying cigarettes again. People who have quit, if they’re honest, will tell you it’s not that hard to quit. Everybody has been told quitting smoking is SO hard, don’t believe them. I was mildly uncomfortable for 3 or 4 days. The pancreatic cancer rates and deaths from pancreatic cancer are staggeringly high for smokers.

AN ORGANISM IN AN ENVIRONMENT

Over the years I’ve come across dozens of articles and a handful of videos that related to pancreatitis. Of all these, a video on Youtube that was an interview with David C Whitcomb MD, PhD who at the time worked at the University of Pennsylvania. The video caught my attention because he states unequivocally that pancreatitis pain is the worst pain a human can experience, and I believe that. But I also learned that while students are taught in medical school that alcohol causes pancreatitis, however in the real world only 2%-3% of hardcore alcoholics have an issue with pancreatitis. So why the huge discrepancy?

I also had an epiphany when he started to talk about the complex interactions between genetics and environmental factors. That individually genetic and environmental elements are harmless but when mixed in certain combinations they can cause severe disease. They had proven this in a study of over 2,000 pancreatic patients at 30 different hospitals. They are still trying to figure out how the pieces fit together, but I think we can all take heed from this study and try to figure out which environmental combinations can affect us.

I started to consider all the chemicals I was using in my house. Bleach, ammonia, caustic cleaners, fertilizers on my lawn and all that stuff in my garage (I’ve been working on cars since I was a kid). One thing I did notice is when I used bug spray it appeared to always negatively affect me. Sadly, the all-natural stuff doesn’t work as good, but I did find peppermint oil worked well on spiders and some other small insects. Like everything else, it’s a process but I do avoid strong chemicals at every opportunity. Anything that’s toxic shouldn’t be in your home. It’s a good idea to take inventory of your exposure to toxins in your home, your work environment and your community.

I don’t believe we are an organism in an environment but rather part of our environment. Our relationship is transactional with the environment, this world is the sort of environment that grows organisms.

TIME OFF WORK AND SOCIAL SECURITY DISABILITY

I’ll go over my trajectory towards SSDI and then talk about what you can or should do if you believe you won’t be able to return to work. Like I wrote earlier my issues started in 2003. As luck would have it I had applied for a great job that I wanted and had no idea what the future held. The process of getting hired dragged out over 4 months before I started working at this new job. My pain was getting worse, and I had seen a Doctor but hadn’t been diagnosed with pancreatitis. I was told it was acid in my stomach, another Dr said it was probably an ulcer. Nothing worse than starting a new job and being in misery with pain. I had started losing weight, hard time sleeping and little if any appetite. Fortunately, I made it through the probationary period and was able to see a doctor who referred me to a GI. That was the beginning of my 17 hospital admissions via the emergency room.

It was just before Christmas 2004 when I was diagnosed with chronic pancreatitis. It had been about a year since my problems started and I had lost some 40 pounds. I was told at the hospital “there is some sludge in your gall bladder and removing it might help” (found out later they tell everyone this). I wanted relief so I agreed. After 9 days I left the hospital but other than that specific attack settling down, I was the same. My employer was a gift. They were very generous with me taking all the time I needed. I did have to file for ‘intermittent medical leave’ to be able to take additional time off for individual attacks. Intermittent Medical Leave is a Federal Program passed during the Clinton Administration that allows an employee to take time off from work to take care of their own illness or the illness of a family member, regardless of company policies. It has been a while since I had this medical leave, but it was 4 days of sick calls per week without being charged with a sick call and charged points for calling in. At the time, it was good for 90 days, but it could be renewed. Your Dr knows how to fill out the paperwork and it’s a fairly simple process. Employers don’t like it because it allows employees time off without being questioned or harassed.

In addition to Intermittent Medical Leave, my employer had an option for 6 months leave of absence for medical reasons. I used this 3 times in 6-7 years. I had signed up for ‘Short Term Disability’ insurance through my employer which paid 75% of my earnings (after tax). They (short term disability insurance companies) are brutal to deal with and they make you fight for your check every week of those 6 months. They try to cancel your policy at every chance but since I worked for a large corporation, they were stuck insuring anybody who applied. As unsavory as these insurance companies can be, sometimes you have no other option that stand and fight with them.

While I was negotiating this maze of trying to keep my job, I was also trying to figure out every medical option I could find. I travelled from Nevada to California dozens of times. I was first referred to the Univ of CA Irvine and then to UCLA, The MAYO clinic in Scottsdale AZ, the Univ of AZ at Tempe and the Univ Medical Center in Las Vegas. All of those were in addition to my local hospitals that I had been admitted to 17 times not to mention my GI, a pain management specialist every month, pharmacies and an occasional visit to my regular General Practitioner Dr. By the way, most of those travel expenses will be reimbursed by your insurance company-save those receipts.

One thing I alluded to earlier that I really want to stress (write this down it’s so important), keep all your paperwork! Everything that your Dr wrote on, everything that says pancreas/pancreatitis/chronic pancreatitis. Most pharmacies will print out all your prescriptions and you may need those too. If at the end of doing all you can to get back to work, you aren’t able to return to work, it’s time to think about SSDI. I haven’t watched TV in 6 or 7 years, but I’m sure we’ve all seen the ads for the law firms that will get your disability insurance for you. If you have your paperwork in order, you won’t need to pay those people. When the Social Security department processes your claim, they contact you. If your attempt doesn’t work, you can always get a law firms’ help later on.

The bad news about the SSDI process is how long it takes. I waited almost 8 months before I got a check. The good news is once you’re approved it’s retroactive, so you’ll get one big check to start with and then be paid monthly after that. If you go through a law firm they’ll take 10% of your check right off of the top. I recollect getting almost $15,000 of which the law firm took about $1,500. Social Security Disability does allow you to earn other money if you are able but there is a cap on how much you can earn. I’ve tried 2 times to do some work but was unsuccessful in both attempts. Both of those jobs were more physically demanding than I could handle. I continue to look for opportunities to earn money. Most of the time I’ve been on SSDI has been trying to get healthy.

It’s been 7 years since I started collecting and I’ve been contacted once for updating. Fairly simple process of just filling out paperwork (one page) and they followed up with a phone call. It has been a lifesaver, but I would prefer to support myself.

LIFESTYLE

I hear people ask all the time “does stress/anxiety affect your pancreatitis?” and my response is yes, absolutely. Your pancreas is really at the center of your body and everything you do has an effect on it. The air you breathe, the water you drink, the food you eat, how you sleep and how you live. Having a life-threatening illness is stressful enough, you need to manage the other stress in your life. I’m not a counselor but you need to have or learn mechanisms to deal with anxiety. Going for a walk, meditation, spending time in nature and just avoiding conflict. Breathing exercises are easy to learn and available on Youtube. High blood pressure is real problem with pancreatitis and doing everything in your power to control high blood pressure is to your advantage.

I learned about environmental factors and their effects on your organs. The chemicals we use, the chemicals in our air and toxins in our environment team up with the things we ingest to cause a lot of diseases to increase throughout our population. There is no doubt that pollution has an effect on every living thing on our planet. There are so many elements that play a role in human disease that they transcend our ability to fully understand all of them. Look at these factors in your life, in your home, at your job and let your intuition decide, trust your instincts.

A BODY IN MOTION…

Some form of exercise is required if you expect to regain or stay healthy. A sedentary lifestyle only invites other health problems. Circulating our blood helps to reduce our blood pressure, provides oxygen throughout our extremities and helps our overall well-being. One thing I’ve used when I was experiencing pancreatic pain was to use a loofa in a hot shower to help my circulation because I was told the circulation reduces the pressure in certain areas of the body.

The last few years I have been walking or hiking after I eat dinner. I believe it helps with digestion and helps me to relax and sleep better. No need to spend a bunch of money, no drive across town to a gym or health club, no expensive equipment to buy. Pair of comfortable shoes and walk a mile or two. There are a lot of different apps you can get that will keep track of your route and your distance. I use the ‘Under Armor’ app ‘map my ride’. I started using that app when I was riding my bike and it has a walk or hike option too. There are 2 minute or 5-minute Yoga exercises on Youtube that are great for circulation also. It doesn’t take long to create a new habit. Before I started walking, I was biking every day and when the nice weather returns, I’ll do both.

SUPPLEMENTS, YES, OR NO?

I probably shouldn’t even write this part so having said that, I haven’t found any supplements that helped me. I’ve tried vitamins, grape seed, licorice, pro-biotics and a host of others and didn’t find any help or relief. My wife ordered a bunch of different supplements that came up in her Google searches and I had no discernable improvement. If you take something that truly helps you, I’d like to know about it. And if it does help by all means keep taking it.

CBD/THC MARIJUANA USE

Everybody wants to know, what about smoking weed? will that help? First of all, smoking is bad for you we already talked about that so don’t smoke anything. However, weed is now available as edibles and in controlled doses. It comes as Gummy Bears, Chocolate, vape, Ice Cream and on and on. So, is there anything to it? Absolutely!

The CBD part of the equation is very helpful. It can help with pain, it definitely helps with sleeping, anxiety, arthritis and I’ve heard it can reduce cancer, but I don’t know about that and a whole host of other ailments. CBD is the part that doesn’t get you high and is legal in a lot of states. It is a cannabinoid and one thing I’ve found interesting is that humans have cannabinoid receptors in their bodies. Everybody should use CBC, it’s harmless and has a huge range of benefits. Anxiety is a major hinderance to getting healthier. Anything you can do to reduce stress and anxiety is a plus.

The THC part is what gets you high and if you’re my age this isn’t the same stuff we got in High School. The potency of THC these days is strong. You will sleep better than you’ve slept in years and there are many options that will help your pain, not like an opioid but different. There is a concoction called Ricks Special Oil (RSO) that got me through several episodes of full-blown pancreatitis along with ibuprofen and lots of water. Unfortunately, THC is not legal everywhere, yet. Minor side effects but effective.

It’s my opinion that CBC and THC be used together. I like the higher percentage CBD and milder or lower percentage THC mix. I think they work best in concert. I live in Oregon and it’s readily available and it can be so helpful to the people. The closest business to our house is a cannabis shop and most of the people who frequent it are in their 60’s and 70’s. pharmaceutical companies will fight this tooth and nail from becoming legal in all 50 states, but I think their pitch is disingenuous.

If you decide to try it, it does take a little while to work effectively, give it a least a week to 10 days. Start slow and find a mix that makes you feel groovy, lol

WHAT DOES IT ALL MEAN?

If you are reading this you or somebody you know has had at least one episode of pancreatitis, the chances are you won’t have another one. The overwhelming majority of people only have one attack, and I don’t know why but those are the statistics. But that doesn’t mean you should disregard this information. You probably have a weak link within your pancreas, and you could have future problems related to your pancreas.

Becoming healthy is the goal and going on to lead a productive life. Eat right, scrutinize everything you drink, adopt a chemical free environment, learn relaxation techniques, sleep well and take care of yourself as you regain your health.

I tried in earnest to find a medical solution to my chronic pancreatitis and ultimately ended up at the doorstep of the total pancreatectomy with islet transplant (TP/AIT) and I needed to ask myself and be honest with my answer, had I done everything within my power to give my body every opportunity to heal or at least reduce the pain? And the answer was that I had areas in my lifestyle that could be improved upon. And you may also have to ask yourself that question and be honest. It’s not easy but it really only takes a few dozen days to create a new habit. Quitting all the negative patterns can be changed in a short period of time. I’m no genius but living with this suffering forced me to look long and hard at my shortcomings and bad habits and to change in a positive way. There’s a saying that suffering is the greatest teacher of all. It’s hard while it’s happening, but in hindsight that saying comes into focus. We all want to be healthy but getting to that destination of health takes time and some discipline.

My first real Gastroenterologist appointment was back in 2004. He said if you take really good care of yourself, no drinking, no smoking, eat a healthy diet and live a healthy lifestyle you can survive this. He explained that sometimes the nerves will burn-out and the pain will diminish but your pancreas will still produce insulin and enzymes without surgery.