Questions about pancreatitis

Pancreatitis
#1

I was recently diagnosed with pancreatitis, docs aren't sure what is causing it except that I was on very heavy doses of antibiotics for an MRSA infection post-op for a hysterectomy, and they think the antibiotics may have caused it.  They told me it goes away for most people and they never have to deal with it again.   However, the only time I have normal amylase and lipase levels is if I haven't eaten at all for many days.  Now they say it may never be normal again.  I can't eat any fat or I am dying in pain, and sometimes it doesn't even need to have fat in it and I can be in serious pain!  I have Vicodin and the enzyme medicine, but I am confused about how all this works.  I last saw the physician's assistant in the GI office, and I want to ask you "experienced" people how this really works.  I can't see the specialist until April 23rd!!

 Does the enzyme medicine prevent pain?

Does it STOP pain you are currently having? 

Does it "trick" your pancreas into thinking it already produced enzymes so it doesn't produce anymore and cause you pain? 

Or, does it only help with digesting the food you are eating so it doesn't go straight through you without digesting?

What tips do you all have for seeing the specialist? 

Someone on here said that when you have an attack, you should go to the emergency room.... I want to avoid the hospital at all costs!!!  I have gone for about 4 days without food, just fluids, in extreme pain but nothing worth going to "hospital jail" for....  I have done this about 4 times in the last 2 months.  I thought the only thing the hospital does for you is IV fluids and IV pain meds, and anything else is done by the specialist on an outpatient basis. Right?  Or wrong?  What is the benefit of going to the hospital? 

Can you lead a normal life with this?  Does it get better? I can't even go back to work because I'm in pain almost every day, and taking narcotics and driving doesn't sound like a good idea.  What do others do?

Thanks for any advice you all may have to offer.

 

#2

  Hi, Susie-Q.  I'm certainly not the most experienced one on the forum, but I have done a lot of reading.

  The pancreas has both exocrine and endocrine functions.  The exocrine function is secreting pancreatic juice which has important digestive enzymes that help digest fats, proteins, and carbohydrates.  The endocrine functions are the production of the hormones insulin and glucagon as well as an inhibtory hormone called somatostatin.

  There are two main types of pancreatitis with several sub-headings under these.  The first is acute pancreatitis which can sometimes be a single event during your lifetime.  There is also recurrent acute pancreatitis.  The second type of pancreatitis is chronic.  Chronic pancreatitis can either be genetic (familial), alcoholic pancreatitis, or caused by multiple acute episodes.  Acute pancreatitis often resolves with no lasting effects to the pancreas.  Chronic pancreatitis happens when the pancreas is damaged permanently.  The enzymes in the pancreas are either not released into the stomach or are activated before leaving the pancreatic duct.  In either case, the enzymes actually start digesting the pancreas itself which is the pain that you feel.  Of course the damage makes the tissue become inflamed.  You might notice that doing things involving the stomach muscles causes an increase in the pain due to the stomach muscles tightening over the inflamed area.

  The enzymes are primarily to aid in digestion of the foods you eat.  Some people have noticed that their attacks are less frequent and severe after they start on the enzymes and start following the dietary restrictions.  As far as I know the enzymes won't help with the pain during a flare-up, but some others here might have different experiences.  Yes, the enzymes also help keep your pancreas from producing too much enzyme.

  I really don't have any tips on seeing the specialist as I will have seen mine for only the third time on the 26th.

  With chronic pancreatitis the damage that is there is permanent.  What going to a hospital for a bad flare-up does is allowing your pancreas to rest.  Sometimes they use a feeding tube and sometimes IV feeding.

  There are stages for what can be done to control the pain.  The first is the enzymes and dietary restrictions.  You can also try NSAIDs (not Ibuprofin though!).  The next step is narcotics- things like Oxycodon, morphine, fentanyl, etc...  After that, they might try a nerve block.  The last resort are various surgical procedures- removing the most damaged areas of the pancreas and various Whipple procedures and finally removal of the pancreas entirely.

  I am also a "neophyte" at this pancreatitis, but hopefully this helped somewhat.  Best of luck. 

#3

I also have pancreatitis with no real reasons why. After many emer. visits, ercp’s and lots of specialist. I am all pain pills since January. I made a choice as to letting this disease run my life. also when I am sick which is most everyday i just do not eat (or very little). When i do eat i vomit and suffer more pain in my back. for me going back to work and spending as much time as i can physically keeping myself busy helps the pain. (no lifting)… The most frustrating is family understanding the pain we suffer. I cry a lot, but think of my children to work thru the difficult times.

Hope this helps.
LMS

#4

Thank you, each of you, for your replies.

Blessings,

Susie-Q

#5

 

Hey, Suzie,

Like you, I've been diagnosed with "idiopathic" severe acute pancreatitis, but have been lucky it seems.  After an initial 12 day hospital stay last December in London, England, it took about 3 months to recoup at home here in the US with a bland diet, lots of fluids, antibiotics and pain meds -- Percocet.

This disease is really strange and it's as individual as each of us, in that every case is different, and it sounds like no two people are alike.  Same thing with doctors.  After seeing two surgeons and my own internist, they have no explanations for my developing this disease, as there is no family history, and no personal history -- alcoholism, drug abuse, smoking or gall bladder disease.  As a matter of fact, I've always been in exceptional health my entire life!  I also developed a large pseudocyst which hasn't resolved -- now almost 4 months post initial attack.  The surgeons are also quick to promise I won't have another severe attack, and of course want to do an open surgery to remove the cyst.  I have another appointment with another surgeon at Duke University Medical Center tomorrow, so I'm very curious about his opinion!

Anyway, I've become my own expert (whatever that means!) by reading everything I can, being keenly aware of my body, differentiating between gas pain (horribly painful) and "pancreas" pain, and being okay with the times when I just don't feel 100%  If it is my pancreas -- my own diagnosis! -- I almost always get nauseated with violent bouts of emesis afterward for about five hours.  Again, I'm one of the lucky ones in that I've been pain free now for almost a month and living a normal life with lots of excercise, and okay diet -- I can tolerate pizza and chocolate, so I'm a happy camper!  -- and using a lot of creative visualization about a clean, healthy, non-cystular abdominal cavity which I've done for years.

Research everything you can and try and find a doctor with whom you can establish trust and become your advocate.  Like I said, this is a very strange disease, but this sight is a great tool with lots of good information.

Here's to good health and taking each moment as it comes!

Best,

Flyboy73