A Helpful Patient Blog on Chronic Pancreatitis, with CP-Friendly Recipes

Happy Panky BlogA reader recently directed me to the blog of another pancreatitis sufferer, Sherry.  It tells her story of CP, which began after eating too much junk (on top of underlying susceptibility due to cystic fibrosis) and landed her in the hospital for a week.  The blog also gives her very thoughtful coping tools for living with CP, which she calls “10 Ways to a Happy Panky.”    They are spot on and well worth a read.

Sherry also includes recipes for dishes that are low fat, but inventive and appealing.  One nice surprise was chili dogs and fries with carefully picked ingredients.

Kudos to Sherry for creating this helpful and inspiring site!  Check it out at http://happypanky.wordpress.com/.

One Patient’s Story of Recurrent Pancreatitis Due to Sphincter of Oddi Dysfunction

One reader was kind enough to send in his story, which is dramatic but probably not atypical for CP sufferers.  I hope you find it useful.  Please feel free to respond to some of his questions at the end.

From R.:

If you don’t mind, I’d like to share the story of my own pancreas odyssey, in hopes that it might be helpful to you or one of your sites visitors as they navigate their way through life with a pesky pancreas. There is such variance in knowledge of the pancreas in the medical community and such a real potential for misdiagnosis that I would be happy if I could spare one person from an unnecessary procedure or an avoidable delay in the improvement of their condition.

And maybe you, or someone visiting this website, might have some information useful to my situation.

For fifty years, my pancreas and I quietly coexisted in symbiotic harmony. Four years ago, that relationship changed — for reasons that none of the top pancreas specialists in my region can fathom.

None of the etiological tick boxes fit me: not a drinker, no gallstones/gallbladder issues, quit smoking years ago, followed (and follow) an exercise regimen and have always been in very good shape, always ate thoughtfully, no problems with triglycerides, no auto-immune issues, no genetic markers for cystic fibrosis or any other known hereditary cause. No scorpion bites etc…Because of this, Doctor Freeman at the University of Minnesota Pancreas Center calls me his 54 year old poster-boy for idiopathic acute recurrent pancreatitis.

My first attack happened late in the evening of a very stressful day in February 2010. I had the sudden onset of a stabbing pain just beneath my sternum that radiated to my back. I waited a day and a half before going to an urgent care center, where lab tests showed my amylase and lipase levels were sky-high (a hallmark of my attacks) , and I was formally diagnosed with acute pancreatitis. I was transferred to a hospital and spent 5 days getting x-rays, ultra-sounds, blood tests done, while being given IV hydration, analgesics and no food for several days to rest the pancreas. The hospital explained the common etiologies for pancreatitis and said that since they could not find a reason for the attack — that it could very well be a unique experience. (If only that had proved to be true!)

In March 2011, after my second attack, I had a EUS performed and the Dr. found no signs of a chronic condition, no signs of stones or any real sludge, but surmised that some micro-crystals may have played a role.

In May 2011, after my third attack, my GP told me ‘Why don’t you just go and get your gallbladder removed?’
So, in August 2011, I had my gallbladder removed; a lovely, gallbladder that had no signs of stones or disease. A week later, I was back in the hospital with another pancreatitis attack. (Major Bummer).

After this, I followed up with a G.I. specialist who was recommended by this hospital. This specialist thought I had pancreas divisum or auto-immune pancreatitis (even though my IgG4 lab results were fine) and even contemplated taking a biopsy of my pancreas for cancer.

By this time, I was getting frustrated and decided to find the best doctor possible. Due diligence and a ‘gut feeling’ led me to make an appointment with Dr. Martin Freeman at the University of Minnesota’s Pancreatic Biliary Center. Dr. Freeman is a world-renowned pancreas expert and his center is preeminent in treating pancreatic disease. He recommended an MRI with secretin, to get a clear picture of my anatomy. The imaging positively ruled out pancreas divisum and revealed no structural signs of why I was having these attacks.

In November 2011, after my fourth pancreatitis hospitalization of that year, I told Dr. Freeman that I had to do something about this… the pancreatitis attacks were affecting my ability to plan my life.

In January 2012, he performed an ERCP on me and checked the pressure on my biliary and pancreatic ducts and found the pressures were very high… so he performed a dual sphincterotomy to relieve the pressures. I now became well-versed in the literature on Sphincter of Oddi Dysfunction and the role it can play in idiopathic pancreatitis.

After the ERCP, I felt great and began to feel that I could actually resume a ‘normal’ life. Five months later, however, everything went Haywire. In a six-week period I had five consecutive pancreatitis hospitalizations. I had absolutely, no idea what could be contributing to this flurry of attacks: my diet was the same very low-fat regimen that I had been on since my second attack of pancreatitis, I was on no medications, etc… nothing made sense.

In those five weeks, I lost twenty pounds and experienced the physical and psychological trauma that comes to those of us who have encountered real uncertainty about our health.

I also received a gift that I am truly grateful for. During my last hospitalization at the University of Minnesota hospital, Dr. Steven Miles visited me with a team of young doctors who had taken an interest in my case. Dr. Miles proceeded to give me an elaborately researched presentation on his laptop. He explained every test that the doctors had run on me during this flurry of hospitalizations and concluded that since my pancreatitis attacks always heal consistently — my disease is ‘simple’ and therefore, in the future, I could treat myself at home during an attack with a prescription for a pain reliever.

As a fellow pancreatitis-experiencer, I don’t have to tell you what a godsend it was to be told that I did not automatically have to be hospitalized if I had a pancreatitis event!

After I had recovered from my flurry of hospitalizations, I saw Dr. Freeman in September 2012, for a follow-up ERCP to try and ascertain why I had these attacks. Dr Freeman scoped me and said the ducts looked fine and saw no reason to intervene surgically.

In March 2013, I went for a second opinion at the Mayo Clinic in Rochester, Minnesota. They performed a battery of blood tests and reviewed my medical charts and confirmed that I was one of that rare subset of people who are experiencing true idiopathic recurrent acute pancreatitis. The two doctors who met with me, presented something of a good cop/bad cop dialogue. The ‘good cop’ said that my illness may well be an anomaly that vanishes from my life as mysteriously as it arrived. The ‘bad cop’ was more prudent… escorting me out the door with assurances that future pancreatic research may someday offer me relief.

I am delighted to say that I have not been in the hospital since August of 2012. Since that time, I have continued to have attacks – but they are now getting further apart. (Six months between the last two attacks.) Between acute attacks, I am fortunately, pain free.

There are many things I’ve learned on my journey with pancreatitis. Being diagnosed as idiopathic, has encouraged me to be very proactive in researching and understanding the probable and possible causes for my condition. This knowledge has helped me to better understand and communicate with my personal medical team and to maximize the value of the limited time these professionals can offer. My experience and research has also illuminated the great discrepancy that exists amongst medical professionals in terms of real knowledge of the pancreas and the Sphincter of Oddi. I highly recommend that anyone who has — or thinks they may have — a recurring or chronic issue with their pancreas to seek out the services of a Pancreas specialty center in a research hospital. Before, I found myself in the good hands of Dr. Freeman at the University of Minnesota, I had been erroneously diagnosed with pancreas divisum and recommended for a gall bladder surgery that I very likely did not need. A pancreas specialty center will have the best diagnostic tools available and the most experienced researchers and surgeons.

The more I learn about pancreatitis and Sphincter of Oddi Dysfunction… the more questions I have:

I wonder about the role of stress in pancreatitis and Sphincter of Oddi dysfunction. My first pancreatitis attack, came on a day of great immediate stress, superimposed on a a host of more chronic stressors. Several other attacks have occurred during stressful periods. I am curious if any other pancreatitis-experiencers have attributed their attacks to a stress overload and felt some kind of attendant muscle or sphincter tensioning might play a role in these. Has anyone had better control of their flare-ups with anti-anxiety medication?

I also wonder about the role of medication in the origin of my pancreatitis. I had been on a generic fluoxetine prozac prescription for a few years prior to my pancreatitis attack. After my second attack, I discontinued this medication — but continued to have attacks.

Also, I wonder about the true role of diet in this condition. I maintain a very consistent, very low-fat diet… and still have pancreatitis attacks. (Though, I have had less frequency since switching to a gluten-free diet). I am curious as to what other people who have a similar profile to mine are able to eat. Am I needlessly, depriving myself of some healthy fats out of an unnecessary fear?

Finally, the onset of pancreatitis turned my employment situation topsy-turvy. Now that things have appeared to stabilize, I’m in the process of rebuilding my life and trying to reintegrate myself into the work-world. I’m curious to know how other pancreatitis experiencers manage their work-life while navigating this condition. How do they deal with absences from work? If they are looking for work, how do they explain a gap in their resume caused by illness? Are many pancreatitis experiencers able to create self-employment scenarios that allow them to work around flare-ups?

I know I’ve written a book here, but if I can help anyone out, or if someone who reads this can identify with or assist me in my own healing… these words will be meaningful. I wish you and all others who negotiate this condition; great wisdom, love and healing.

Sincerely,

R.

Becoming Better Everyday

Video: Life after Pancreatic Surgery (TP/IAT) for Patients with Chronic Pancreatitis

Earlier this year in South Carolina, some of the world’s top physicians and researchers gathered for the International Symposium on the Surgical and Medical Treatment of Chronic Pancreatitis. Organized by the Medical University of South Carolina, the goal of the Symposium was “to bring together leading scientists, physicians and surgeons interested in improving patient care in chronic pancreatitis.”

One presentation from Dr. Katherine Morgan examined outcomes from TP/IAT surgery, which involves removal of the pancreas and simultaneous transplant of pancreatic islet cells (responsible for production of insulin) to the liver.  This surgery seems to be the last, best hope of those suffering from chronic pancreatitis, so this topic is one of keen interest.

Dr. Morgan first recounts several cases with very positive outcomes and several with less successful outcomes, and then goes into some depth on the history of the surgical procedure and how outcomes have been measured.  Starting at about the 12 minute mark, Dr. Morgan discusses how patients fare before and after TP/IAT surgery.  She notes that chronic pancreatitis patients before surgery are a “pretty miserable group” in terms of physical and mental health– something patients will definitely relate to.  After the surgery, there was a significant increase in both physical and mental health ratings, getting closer (but not equal) to the benchmark for healthy patients.  Notably, most patients were not able to stop narcotics (75% were still on them post surgery), but quality of life did improve nonetheless.  Improvements applied both to patients who were undergoing their first surgery and those so-called “salvage” patients who had been through pancreatic surgery before without relief.

Interestingly, even those who experienced significant surgical complications still saw significant improvements in quality of life.

Dr. Morgan wraps up by discussing the data that her group collects on patients with CP, called the “Element System.”  It includes assessment of quality of life, depression, a pain inventory, a narcotic misuse measure, and then a detailed symptom and behavioral questionnaire.  This seems to be more systematic and thorough than most centers for pancreatic disease.

There are other videos from the Symposium, many of which can be found here.     This one is worth watching for anyone considering TP/IAT surgery.