I remember all too well, the debate I had with myself on trying to decide whether or not I wanted to have the total pancreatectomy and islet cell autotransplantation (TPIAT) surgery. I spent many nights researching, compiling information, talking to others and even had a list of pros and cons. Pancreatitis is some of the worst pain you can have. Being in constant pain made me desperate for any relief. Nothing I had tried to mitigate the pain was working except high doses of strong pain medicine and that was only temporary. The doctors were reluctant to prescribe that and I didn’t want to take it. Treating pancreatitis is like throwing darts blindly. You never know what is going to help or how you will respond as the disease progresses. There is no one size fits all for pain relief. Patients try many different things, including diet change, yoga, mindfulness, medication’s non-opioid, and opioids. A patient can spend years trying to find anything that will help if at all. And let’s don’t forget the fight with insurance companies to get tests or treatments covered. Support or lack of from family and friends and the medical community is also a factor that can have a huge impact on the long-term outcome. I have had many tell me they have considered suicide at one point. It certainly crossed my mind.
If you have kept up with me or read my blog, you know I have said having this disease is the most demanding thing I have ever dealt with. Physically, psychologically, and financially, it is a never ending. Trade one serious problem for other chronic problems. My problems include diabetes, GI issues, malabsorption, PTSD and abdominal pain, although the pain is lower than before surgery. My bowel perforation last April was from scar tissue of my previous pancreas surgery.
A study was recently published by the University of Cincinnati, Long-Term Survival Outcomes after Operative Management of Chronic Pancreatitis: Two Decades of Experience. The study covers 20 years of 493 patients who have had operative intervention for chronic pancreatitis (CP). This is the first time a study has been done on long term outcome.
This is a direct quote from the study – Chronic pancreatitis (CP) is a debilitating disease process, causing refractory, chronic abdominal pain, narcotic dependence, frequent hospitalizations, pancreatic endocrine and exocrine dysfunction, and decreased quality of life. The last four words from that statement is really what it is all about. Decreased quality of life!
This link will take you to the article about the study. A link on that page will take you to the published study
Study of pancreatitis surgeries finds steady decline in survival (statnews.com)
These paragraphs from the study say a lot-
Findings from this study identify just how critical psychosocial care is for patients in the post operative period and beyond. Persistent narcotic dependence was the only factor associated with worse overall survival in the final multivariate model. While 73% of patients achieved narcotic dependence after definitive surgical therapy, the remainder continued to require narcotics. Weaning narcotics for these patients after surgery is a clinical challenge and often takes several months to achieve. These findings confirm just how important this process is in the recovery of these patients. Narcotics and psychosocial issues, including substance abuse, alcohol abuse, tobacco abuse, end-stage liver disease and suicide, are a major source of mortality and also identify an unmet need for these patients. A study from Estonia found similar issues regarding poor outcomes in this patient population and behavioral risk factors which they included continued tobacco and alcohol abuse, and alcohol-related liver disease.(25) It remains unclear how much of these deaths are preventable, but it is an area in need of targeted intervention.
This study serves as a benchmark for outcomes in patients with refractory CP requiring surgical intervention. It also identifies a major area of need in this patient population. The care for these patients must continue well after the date of surgery. These patients require coordinate care which should focus on and potentially alleviate some of the major sources of mortality including cardiovascular health, endocrine and diabetes management, as well as oncologic surveillance. Additionally psychosocial support is critical for these patients.
Conclusions: This study represents the largest study to date looking at long-term survival after definitive surgical intervention for chronic pancreatitis. 1-, 5-, and 10-year overall patient survival is 96%, 81%, 63%. Median age at time of death is 50.6 years. The most common causes of death include infections, cardiovascular disease, and diabetes-related complications. Psychosocial issues including narcotic dependence, substance abuse and suicide are a major source of mortality in this patient population.
The results of the studies do not surprise me. I have known from personal experience and meeting approximately 250 pancreatic disease patients face to face plus talking to many more online that there are many complications from this disease and treatments. I know of at least 20 people I’ve personally met who have passed away. I know of many more who have passed from the support groups online.
The fact that 4 out of 10 will die with in 10 years is sobering. Surgery is supposed to improve your life. Not having surgery on your pancreas and what your life expectancy is would be debatable. It would be good to see a study of patients who do not have surgery intervention, and this is mentioned in the study. Every person having surgery is looking for relief and a better quality of life. It would be interesting to know if patients who continue to have problems and are subject to more things like X-ray/cat scans, anesthesia, or multiple surgeries, if that contributes to pain, cancer or heart problems? What about replacement of insulin, enzymes, iron, other vitamin deficiencies? Patients are often less active and become socially uncomfortable. Current therapies do not work well for numerous patients who are just trying to have a better quality of life.
In the several speeches I have given at conferences, I have mentioned almost every item in this study. I’m glad a study was done that affirmed what deficiencies there are treating CP. As I have said before, it isn’t about me, it is about us, the pancreas community. What I have learned, written about and spoke about is what many I have talked to have mentioned to me. I’m glad there are numbers to support the problems. There are some pancreas centers who have not practiced good follow up care, patient surveys or psychological care. Some patients have been left in limbo after surgery, feeling left out in the cold. Now, how the medical community decides to manage this will decide the fate of many post-surgical pancreas patients.
Dan's fight with Hereditary Pancreatitis 