My Journey with Pancreatitis
Diagnosis
My journey with pancreatitis began in March 2016. My first symptoms resembled stomach flu accompanied by some mild discomfort, and a lack of appetite. I did not want to eat much more than chicken soup for a few days. I felt well enough to go to work, but after about one hour the pain I was experiencing escalated. I went home and took a hot bath, but it did not relieve the pain.
After about 2 hours, I asked my wife to take me to the ER as I could not even drive. My last memory was walking into the ER nurse station and then waking up as I was being loaded into the ambulance and transported to the main hospital. After that, I have no memory of those next three months [I was in a medically induced coma for three months]. This is when the long road to recovery began for me, which included learning to eat again and learning to walk after seven months of being completely bedridden.
There Were No Warning Signs
I did not experience any major warning signs before I was admitted into the hospital that day and diagnosed with chronic pancreatitis. Consequently, the lifestyle I envisioned for myself, and my family remains forever changed. I learned that pancreatitis may present quickly and without warning signs or symptoms. Pancreatitis, as a standalone condition, can be as fatal as being diagnosed with pancreatic cancer. I also learned that this is a disease that is hard to predict. I had a complete full physical three months prior to my health event and diagnosis. At that regular checkup, nothing flagged medically to the possibility of pancreatitis. I was age 52 when I was admitted to the hospital, with necrotizing pancreatitis, I had a complete physical 3 months prior with the advice to lose weight, as I was then about 35 lbs. overweight. I had a regular diet however, I could have been exercising more.
Detail of the Medical Procedures and Related-Challenges
I was hospitalized for 240 days (about 8 months) in 2016, 56 days (about 2 months) in 2017, 15 days (about 2 weeks) in 2018, 8 days in 2019, 2 days in 2020, and only outpatient going forward. My weight at the time of diagnosis was 235 pounds. I was then pumped up to over 300 pounds to flush out my system. At the time of discharge from the hospital, my weight had plummeted to only 110 pounds.
Unfortunately, I had to return to the hospital after 12 days (a little under two weeks) later, resulting in a 40-day stay, where I endured the following procedures: a Whipple, a partial pancreatectomy, gallbladder, and appendix removal, 4 feet of my colon removed, and a 14-hour abdominal reconstruction surgery with hernia mesh placement in late 2018.
Current Health Prognosis
I am currently diagnosed with chronic pancreatitis, exocrine pancreatic insufficiency, diabetes type 3c, hypertension, and suffer from retroperitoneal fluid seromas due to scar tissue. I have had 54 surgeries in total.
Today, I enjoy a healthy and pain-free (no pain meds) lifestyle. My doctors assure me I can look forward to a normal life expectancy. It is possible to overcome pancreatitis, at least to the point of having a fully functional life.
Self-Education and Advocacy is Important
My pancreatitis journey continues to provide many insights. Through my work with the National Pancreas Foundation as Michigan Chapter Chair, I have learned the importance of taking an active role in my treatment and the importance of individualized medicine or personalized medicine. We all react and respond differently to all the procedures, drugs, pain, and psychological aspects. Taking an active role in your own personal health yields much better results.
My take on self-advocacy is to help the doctors help me while also making that process as efficient as possible. This includes me asking as many questions as necessary until I am comfortable enough with any treatment advice they provide. If the medical professionals have issues answering my questions, I then seek out a physician that is more willing to have an extensive conversation with me regarding my care concerns.
To that end, I advocate that one needs to prepare your medical passport, or a short 2 or 3-page summary of your medical condition. Having a medical summary on-hand helps you become your best medical self-advocate or help a family member step into that role. I have found that my medical passport allowed me an in-depth understanding of how certain pain medications and supplementation regimens benefit my personal health the most.
My self-advocacy featured me developing a personalized diet that works for me and then assessing how my body responds to the various stimuli such as food choices, supplements, prescriptions, and stress. I have also learned how to save money on my medications – many of which I am able to get without any out-of-pocket costs.
Another important observation I have found helpful through my journey is that self-education works to your advantage. At this point, I have the knowledge equivalent resembling that of a medical professional. Some of this was out of necessity [wound care], however the bulk of it was aimed at educating myself on the items outlined in my medical passport. Through this process, I was able to learn and highlight specific procedures helpful to managing my disease, that my team of doctors had not before considered.
Type 3C Diabetes Awareness
It continues to surprise me that very few medical professionals know what type 3c diabetes is. In my medical visits, the doctors ask what my conditions are, and I tell them. They proceed to ask me what type 3c diabetic is, as though they have not heard of it before I mentioned. I educate them on what type 3c is and how it affects my health. I have come to realize that with my health history, I will always be a diabetic [missing a part of your pancreas will cause that], more like that of type 1 diabetes as opposed to those with type 2 since it can be eliminated with consistent changes and monitoring. It is a similar story with pancreatitis in that most doctors know what it is, even though with approximately 300,000 new cases in the US each year, most have no hands-on experience treating it.
Living with Pancreatitis
I believe that finding a doctor with experience is a major factor in the successful management of pancreatitis and in my case surviving to live another day. In my first hospital [5 days], a doctor took my wife aside and told her, if this went bad, I needed to be someplace else.
Fortunately, she found a surgeon with over 20 years of experience treating pancreatitis and pancreatic cancer and had many Whipple surgeries under his belt, 235 days (about 7 and a half months) later, I walked out of the hospital. Today, I am more knowledgeable about pancreas disease than when I am seeing physicians and other medical professionals, I often ask if I can answer any questions for them vs the other way around.
My pancreatitis and related health-issues have a tremendous affect on my mental health, at times, very badly. There were times during this journey where I was close to giving up, while in the hospital after I came out of the coma, I often begged to be knocked out due to the pain. When I was out of the hospital walking around with tubes sticking out, bags attached, I felt like a Borg from star trek. Overall, my focus changed to “my job here was not yet complete”, with 4 children and 5 grandchildren who still needed me, along with my wife and the community I am part of, I needed to be around to support them. Also being willing to ask and accept help positively affected my mental health.
Most days I am in pain. While it is low level of pain, 1 to 3 on a scale of 10, it is always present. I find ways to deal with it, and when possible, try to abstain from using medication. When the pain worsens, I deal with it as soon as possible rather than waiting. I find my diet is a major factor in dealing with pancreatitis and diabetes. Most days I walk with a cane, but I make sure I walk every day and exercise as best that I am able. Overall, this is a journey and not a destination, I am learning about my body and my conditions every day and making changes as needed.
There is hope in living with pancreatitis because it is a condition that can be managed and mostly overcome, as taken from my own personal experience. A myriad of daily challenges remains; however, I face and fight through them. My advice is for those who are newly diagnosed to educate yourself as best that you can, take an active role in the management of your own personal health, never stop asking questions, and to remain positive.
