Hi everyone.  A reader, CB wrote to us recently and asked us to post her story:

“I have been suffering with pain since Thanksgiving 2009.  Actually about a month or two before but not as severe until Thanksgiving.  I am not an alcoholic and rarely drink.  On Thanksgiving I was admitted into our local hospital.  I was put on an IV and pain killers.  I was told that I had gallstones.  Two days later they removed my gallbladder and appendix and fixed a small hernia.  I continued to have pain on my left side right below my ribs which radiated to my back.  I continued to go to my family doctor and advised her of this.  She stated that it would take time to recover from this surgery.  I continued to have pain and she took a blood test which showed my white blood cells were elevated, so assumed that the pain was due to an infection.  I was treated with antibiotics and told that there was a pocket of fluid by the incision from the hernia surgery.  When the pocket of fluid wasn’t reduced after the antibiotic treatment, the doctor tried to drain the pocket by reopening my belly button.  Even after that I continued to have pain.  Finally after almost 2 months after my surgery, I was sent to a gastrinologist.  At first all he did was give me more pain killers and review blood tests.  He advised me that my pancreas and liver levels were high.  Which for my pancreas was told they should be between 0 - 300 and were coming back at the lowest 900.  I was then told to go on a low fat diet.  So I did, but I was still having pain.  I eventually went on a completely fat free diet.  I still continued to have pain.  Another visit and the doctor finally decided to schedule some tests.  The first test was an MR/CP.  The radiologist said that it showed nothing.  Thank God the doctor decided to review the scan himself.  He advised that he seen a small blockage in the tail end of my Pancreas.  He then scheduled me an ER/CP.

After that test he verified that there was a blockage.  I was then referred to a University for an EUS.  At that time a biopsy was taken.  I was informed that the test results came back inconclusive.  I was then referred to a surgeon.  On March 8th 2010 I went in for surgery.  The surgeon was almost positive that I had cancer.  75% of my pancreas, my spleen, 22 lymph nodes, a stomach biopsy and a wedge resection of my bowel was performed.

(It turned out to be a cyst in my pancreas which was not cancerous) I was in the hospital for 6 days.  My recovery started out good.  I had a JP tube in to get the excess fluids out of me.  After approximately 2 weeks the JP tube was removed.  On that day, I went to our local ER in so much pain, I could barely breathe or move.  They sent me back to the University Hospital who performed the procedure.  They ran several tests and came up with no cause.

I was kept in the hospital for 2 days and when released was advised that I needed to go back on a fat free diet.  The day after being released I went back to the gastronologist for his opinion and assistance.  At that time he referred me back to the University ER.  It has been 8 days now with only minor pain.  Today however the pain was back.  The only time I have had complete relief is when I have been on a complete liquid diet.  I know this is not healthy by any means.  I have lost almost 40lbs since the procedure that was done on March 8th.  I am absolutely terrified that I will die as the doctors seem not to be able to do anything except give me pain medication, which is beginning not to work anymore.  I need help and feel I have nowhere to turn.  Every doctor I see continues to refer me back to the Hospital that performed the procedure.  Even my insurance company which assigned me a case manager is concerned.  I have two children and am so worried.  I’m afraid to sleep or eat anymore.  I don’t know what to do or where to turn.”

As a postscript to CB’s original note:

“I have an appointment on April 15th with the surgeon and will press her for answers as to the diagnosis of my condition and what avenue I should take to finally be done with this extreme pain.  I will advise you of what I find out.  Hopefully my information and story will help someone out that is experiancing the same issues.  Thank you for your research and your support.  As bad as this may sound, it’s nice to know I’m not alone in my suffering.“

We’d love to hear from any others who have had similar experiences to CB (and I’m sure CB would love to hear from you as well!). 

I’m sure all of us wish CB all the very best.

Kind regards

Jenny

The final step in my approach, is to clearly state your expectations and goals for the visit to discuss pain management for pancreatitis.  This is the stage when both you and your physician establish the “game plan”.

Again, being specific is the best way to do this. For example, if you believe that more tests should be run to find a possible treatable cause to your pancreatitis pain, then state that. If, on the other hand, you believe that all appropriate tests have been done and all you want is assistance in controlling your pain, state that.

In my case I was up-front with my belief that the pancreatitis pain was not going to “magically” disappear; that I accepted that it was going to be part of my life; but I didn’t accept that there was nothing the medical field could do.  I made it very clear that I expected to leave that day with medicine to reduce the pain to more tolerable levels (I felt that an average pain of a 4 wasn’t too much to ask for) and with a treatment plan that acknowledged that I needed long-term medical care.

Like your pain descriptions, your goals will be unique to you. However, what is common to all pain patients is his or her right to have pain treated.  For most situations, do not accept the advice that pain treatment should be delayed until a cause can be found or withheld completely because all tests and exams are normal. In my opinion, pancreatitis pain should be treated through pain management for pancreatitis, regardless of why it is there.

The first step when discussing chronic pain for pancreatitis is to be comfortable talking about it.  In my case, admitting that I had chronic pain felt like announcing to the world that “I am a wimp and a failure.”  I became anxious, and I think my body language conveyed the idea that I didn’t deserve to be taken seriously.

After I learned to accept that pain was not a weakness in my character, I was able to discuss what it felt like, how often it bothered me, and how bad it gets in a more matter-of-fact way.  This also conveyed that I expected and deserved to be listened to.

Being comfortable also reduces the chance that your emotions could take over the situation.  Emotions are part of the examination, no doubt. Physicians will ask you how the pain impacts your quality of life, but they will also look for signs that suggest you are exaggerating your situation.

“Histrionics” is the term that is often used to describe overly dramatic examinations.  Bizarre and unusual descriptions or peculiar behavior can all be seen as dramatic.  Avoid focusing on frustrating or failed previous physician care because this can also side-track your doctor from properly treating chronic pain.

Talking to your Doctor about Chronic Pain
When asked about pain management for pancreatitis, I am frequently asked how to talk about it with a doctor.  It would seem as if this should be a simple matter.  After all, outside of routine visits, pain is probably the most common reason for seeing a doctor. It would seem natural then to assume your doctor would be very proficient in diagnosing and treating chronic pancreatitis pain.  However, in my experience, this is not so. I often left a physician’s office believing that my doctor didn’t quite “get it”.
Why is this? Over the years, I have learned that many factors affect diagnosing painful symptoms. The obvious factor is that there are many different kinds of pain.  Pain can be either acute or chronic.  Acute pain is relatively easy to assess and treatment is usually straight forward and curative.  Chronic pain, however, is the opposite: it is difficult to assess and treatment is complex and most likely will not cure.  Assessing and treating chronic pain requires time, patience and commitment from both the patient and the physician.

I think that the biggest factor that influences our treatment is that chronic pain often cannot be “proven” by methods that doctors are most comfortable with.  Lab tests, radiology procedures (x-rays, CTs, MRIs etc) and physical exams may not show reasons for the pain.  Because of this, doctors have to rely mainly on what the patient says or how s/he behaves during the exam.  That is why it is very important to learn how to communicate with your doctor. Your words as well as body language will virtually be the physician’s diagnostic tool and you want to provide them with the best tool you can.

The third installment of pain management for pancreatitis is coming soon

We would like to introduce you to our upcoming series of articles on pain management for pancreatitis.  We’re really happy that our friend June Henry has agreed to write a series of articles on this most important of issues.  June has suffered from pancreatitis for a number of years and has enormous personal experience in dealing with the day-to-day issues sufferers face.  She has ‘been through the mill’, so to speak, and has now kindly offered to give you all the benefit of her experiences, to be your friendly guide and to assist you through the ‘maze’ that dealing with pancreatitis can so often be.

As we’ve discovered over recent months, every person’s experiences with pancreatitis and with the medical systems they encounter because of it, are very different.  It’s impossible to cover every individual situation.  However, we’ve also discovered a remarkable similarity in the nature of treatment and the responses patients have had.  With June you will have a reference point – someone who has more than likely been through similar situations as you have been facing.  Consequently, we’re sure you will find June’s articles not only to be very, very informative, but also challenging – they will make you think about what your experiences have been, how they may have differed from those of others etc.  As a consequence, it is our hope (and June’s) that you will let us know what these differences have been and how you have been able to best manage them.  Through this exchange we should then be able to build up a body of knowledge from which everyone can share and benefit.

We’re really excited about this and we hope you are too.  The first of June’s series of articles on pain management for pancreatitis will be coming soon.