My Experiences with Pancreatitis

An Important Note About My Experience With Pancreatitis:

I am not a doctor or a health care professional of any type.  This web site records my personal journey and is an attempt to share the information that I find as I look for ways to deal with my Pancreatitis.

My First Acute Flare Up

So, here is my story.  I am a 64-year-old man who lives in Denver Colorado. A lot has changed since I first wrote this article.

About ten years ago I was diagnosed with my first case of Pancreatitis.  It started with unbelievable pain in my upper abdomen.  This quickly became worse than anything that I had ever felt before.

Even though I toughed it out for most of the day I finally caved.  Somehow I made it to the car and my partner drove me to the hospital.  After some quick tests in the Hospital ER, they diagnosed me with Acute Pancreatitis.  I was sent upstairs to a room.

At least they gave me some great painkillers.  This was before everyone became so obsessed with the “opioid crisis”.

This first time I ended up spending five days in our local hospital.  There they did multiple tests and a variety of scans as they tried to find out what caused this flare-up.

Are You An Alcoholic?

There was one thing that every Doctor and Nurse kept asking me.  It’s something that I’ve since found out is usually asked to everyone who suffers from Pancreatitis.  Are you an alcoholic?

I wasn’t and never had been more than a social drinker.  But I kept getting asked this same question over and over again like they didn’t trust my answer.

At the time I didn’t understand why they kept asking.  But now, of course, after a lot of research, I know that one common cause of Pancreatitis is alcoholism.

But there are a lot of other reasons as well.

Latest Studies

Now though, there are new studies.  These are showing that the number of people who get Pancreatitis from alcoholism is actually smaller than previously thought.

Plus – another study shows that a newly discovered gene abnormality can make a person prone to Pancreatitis.  Whether they are a drinker or not.

Still, I’ve been asked that question more than a 100 times now.  With it all over my medical charts, I still get asked it every time that I end up getting a flare-up.  It gets really annoying.

More And More Attacks

Since that first attack, I have had Acute Pancreatic attacks at least 60 or 100 times.  Many were severe enough that I ended up in the hospital.  At this point, I’ve lost count.

That’s because many attacks I’m able to deal with at home.  I either use the meds that I have or often by stubbornly enduring the pain.

This is because over time I’ve become more and more reluctant to go to the ER.  I won’t go unless I absolutely have to go there. Going to the ER can be a real pain.

I’ve also developed Chronic Pancreatitis that gives me problems nearly every day.

Other Problems

Then at the same time that I had my first Acute Pancreatic flare up, I also developed Diabetes.  I have to take a handful of pills twice a day along with injecting myself with insulin every day.

Then I have a number of other problems including high blood pressure, high triglycerides, high cholesterol and a hypothyroid.  All of these other conditions are well controlled with a variety of medications that I take daily.

Because of the Pancreatitis I’ve also developed Gastroparesis (slow moving stomach) and Ileus (slow moving bowels).

These last two issues have become almost as problematic as the Pancreatitis.  When I have a flare up these can stretch my average hospital stay from a few days into a week or longer.

When I Go Into The ER

I don’t know why but Pancreatitis attacks always seem to happen in the evening or weekends.  This is when my normal doctors offices are closed so I end up going to the emergency room frequently.

When I go to the ER with a Pancreatic flare up I usually have a pretty good idea of what is going on.  But Doctors tend to get a little cranky if you try to tell them what is wrong with you.  No matter how many times the same thing has happened before.

The only reason that I am going to the hospital though is for the pain meds and maybe for IV Fluids if I am dehydrated.  I already am pretty sure what is going on and I just want help with the pain.

Most of the time these doctors are well meaning but even the best of them don’t like it when a patient try’s to tell them what is wrong.  So I’ve learned the best thing is to go along with their process and try to grease the tracks as much as I can to speed things up.

But the Doctors always have to run their tests and scans to figure out what is going on.  This all happens before they really want to give you too many pain meds.  They are afraid you are just drug seeking, and this can take a while.

My Spiel

So I’ve developed a spiel that I use to try and move things along.  I say:

• no – I have had no recent trauma to my stomach
• no- I have not had recent surgery to my abdomen
• no – I am not a drinker
• and no – I have never been bitten by a scorpion

That last – about the scorpion bite will usually cause the Doctor to chuckle if they have a lot of experience.  Very few people know it but you can get Pancreatitis from a scorpion bite.

My experience is also that the ER – once they decide that you are actually in pain – is a lot more willing to give you pain meds than once you get moved into a hospital room.

Hospital Stays

When I am in the hospital the standard treatment is pain meds and always no food or drink until the Pancreas has time to cool down.

It always seems to bother the Doctors that they can’t seem to figure out what is causing the flare ups.   But I’m convinced that in my case it is at least partially hereditary.  My older sister also suffered from Pancreatitis.

There is also the constant blood tests and vitals and visits from the Doctors.  One of my least favorite parts is when the Doctors always want to poke and prod you in the area around the Pancreas.

Sharing A Room

As an added torture, I am frequently put in a shared room with another patient.  They never put you in a room with someone who is also banned from food or drink though.

So you get to lay there hungry and thirsty as the person in the other bed orders from room service.  You get to smell the aroma of the food as they eat.

An Interesting side note: The hospital that I routinely go to is converting all of their rooms into singles.  There have been studies that show that this helps with cross contamination of illnesses and that people who are in single rooms get better quicker and spend less time in the hospital.

Pain Meds

Once you get checked into a room in the hospital it also starts the battle to get enough pain meds.  Doctors always seem to want to stop giving them to you as fast as they can – leaving you always on the knife edge of pain.

I always tell my Doctors that I will tell them when I don’t need the pain meds anymore.  But even when you prove this by voluntarily cutting down on them the Doctors always want to trim the meds even faster.

Do They Read Your File

Over time I’ve become convinced that many times in the hospital and the ER they don’t read your medical file.  Even though medical files are now required to be electronic and available for anyone who treats you in the U.S.  It still seems like at most they will skim as little as possible.

I became even more convinced of this the last time I was in the hospital.  My GI Doctor had clearly put in instructions on how to treat my Gastroparesis and Ileus.  Yet the Hospital Doctor insisted that I was going to be treated in a way that had caused major problems before.

It wasn’t until I had refused the treatment and insisted for the third time that they check with the GI Doctor or read the house notes in my medical file that they changed their approach.

So you have to know and understand what is going on, what has worked in the past, and what has been tried and not worked.

I’ve become convinced that the more you know and the better you can communicate with your Doctor the better care you are going to receive.

Finding A Good Doctor

Since Pancreatitis is a disease that isn’t going to go away anytime soon.  You are likely going to be seeing your Doctor a lot.  Because of this, I think that it is very important that you find a good one.  You should be able to deal with well and one who won’t cause you extra stress.

When you are dealing with any disease the last thing that you need is added aggravation.  Avoid dealing with someone that isn’t interested in your problems or that thinks you are exaggerating.

Almost every insurance plan lets you change Doctors if you need to and you should if you have problems!

I’ve been very lucky and both my regular Doctor, my Doctor for my Diabetes, and my GI Doctor are all people that I like and who take extremely good care of me.

The Hospital Doctors

That being said, the Doctors that I seem to have the most problems with are the ones that I have to see when I am in the hospital.

Even though I’ve had a few good ones the ones that I would consider bad out number them.

In fact, one of the worst stays in the hospital was because of a Doctor that refused to listen to me.  She insisted that her way was the best – no matter how much pain it was causing me.

The Deal With My Doctor

Since there is nothing that could be done to treat the problem there are times when I choose to stay at home.  When possible I use the percocet pills the doctors have prescribed for my pain.

This saves on the the cost and hassle of the hospital stays just for those times when I have a larger attack and need more powerful pain medications.

I’ve also developed a deal of sorts with my regular Doctor.  As long as I can stand the pain he doesn’t mind if I stay home where I am more comfortable – as long as I see him within a week or so later after the attack and agree to come in to get checked out if the pain is different or I get dehydrated.

Final Thoughts

So, over time I’ve had multiple x-rays. MRI’s, and ERCPS’s.  The doctors are trying to find a physical cause for me to have recurrent Pancreatitis but they found nothing.

One thing that my GP did was take a careful look at the meds that I take.  He was thinking that one or more of them might be the cause.

There were two meds that I take that have a potential history of causing Pancreatitis and those were changed.   But this made no difference.

I think that I have been lucky because so far, knock on wood. I haven’t had any pancreatic cysts and the damage to my Pancreas has been pretty minimal.

Where I’m At Now

So finally we reached the point where, as a frustrated young doctor once told me on my last hospitalization.  We just don’t know what caused my Pancreatitis in the first place.  We don’t know what causes the recurring attacks.  And we don’t know anything that can be done to stop future attacks.

Hence this web site, as I try alternative treatments and diets to try to curb whatever it is that is slowly destroying my pancreas.

I’ll also post as much information as I can about ideas or treatments that others are using. Plus find as much information as I can to educate you and me about this disease that you or a loved one is struggling with.

Share Your Story

I also invite you to post your own story or ask questions.  Check back here often to see the latest.  You can also check out my facebook page to get my latest ideas and links.

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