Hi, my name is Victoria Wade. I am 22 years old, and I have chronic/hereditary pancreatitis.
How old were you when you had your first bout of pancreatitis?
I had my first undiagnosed attack at 8 years old. However, my first diagnosed pancreatitis attack was at 18 years old.
What did you think it was initially?
Initially, it was believed to be constipation or a “nervous stomach” by doctors. But in my heart, I knew it was none of those things, but I did not know exactly what it was. At 12, I was diagnosed with irritable bowel syndrome (IBS). My doctors thought this was the root cause of the unbearable amount of pain I had been experiencing in my upper left quadrant of my abdomen, as well as my back, dehydration, nausea, vomiting, and weight loss due to my inability to eat.
It took my doctors 10 years before I was properly diagnosed, and they initially thought it was acute idiopathic pancreatitis. After a change in doctors, several procedures, an in-depth review of my history, and a significant amount of physical damage observed by my surgeon during surgery, I was diagnosed with chronic pancreatitis. It was determined to be hereditary pancreatitis, after I underwent genetic testing to find what had caused it at such a young age, with all possible explanations exhausted. No one else in my family has it, so I have a “De Novo Mutation.”
How often were your hospital stays?
I have always had frequent ER trips, but as far as in-patient stays, I was never admitted until I was 16. The first time I was admitted to the hospital was only because I was tachycardic during an undiagnosed attack- which later was confirmed as an active attack. The pain was only treated with NSAIDs during my hospitalizations as a child, and NSAIDs caused me to have IBS flares leading to additional pain. When I had my first attack as an adult, at 18 years old, I was hospitalized for the first time with a diagnosis of acute idiopathic pancreatitis. This hospitalization, I received proper treatment for the first time ever, and I was able to receive pain medication, fluids, and the necessary protocols to help me get through the attack. This attack was a huge turning point for me, because once it happened again doctors recognized that there was an underlying issue needing to be addressed.
Can you tell us what life was like before pancreatitis?
I remember life being seemingly normal. I do not remember much since I have been dealing with it since I was so young. But I do remember being less worrisome daily, because before I did not have my health to constantly worry about and take care of, especially since my surgery. I was also more naïve regarding my medical care, whereas now I struggle with trusting doctor’s experience due to encounters I have had, along with how long it took me to receive proper care.
What is your life like living with pancreatitis attacks? What do you do differently to work around this illness?
Life is more complicated with pancreatitis attacks with how unexpected they are. They can make trying to do almost anything impossible. I have had to learn to work through the everyday pains it has caused, due to permanent damage from these attacks. My social life has changed because I have had to miss doing things with people due to being in attacks and have reluctance meeting new people because I have to explain my diagnosis when it comes up like taking medicines when eating or taking insulin. Most of my friends understand what pancreatitis is because they have watched me live with it and have been there as it has progressed and witnessed its effects. It affects my schooling, because I may have ER trips or doctors’ visits that cause me to get behind on assignments during an attack, and it affects school during times when I am experiencing a lot of pain and do not have the ability to focus through it. I have to avoid high fat foods, alcohol, and meat because these are all triggers for me.
What was the main factor in your partial-pancreatectomy and how was your recovery?
The main factor in my surgery was brought on by an attack that lasted for almost 2 months, I was losing a ton of weight, and my only effective pain-management was opioids at only 19. At this point, my doctor ran some tests and did a procedure where he found a very large blockage that completely blocked the flow in my main pancreatic duct. He was unable to remove it during the procedure, and a team of doctors decided this surgery was the only treatment option for “long-term” relief. During surgery, the doctor found a countless number of other smaller stones and a ton of scar tissue from my many attacks over the years. The scar tissue between my spleen and pancreas led to my spleen needing to be removed, as well as 60% of my pancreas being removed opposed to the previously expected 20% due to calcification, along with my gallbladder.
My recovery was very difficult, because I did not know what to expect. My exact words the first time I was asked to stand were, “I feel like I am going to rip in half.” I eventually got up to walk my first lap around the hallway but made it just outside of my room before feeling very faint. I immediately had to be wheeled back to my room to lay down, in an office chair, because that was closest chair my nurse could get to. These few steps were my biggest accomplishment after surgery, and after getting back to my room and seeing a plate of warm waffles it was all worth it. Doing anything but laying -almost- completely flat in the bed was painful, and the simplest things I once took for granted such as sitting up by myself, also became accomplishments. Something that seemed so simple before became such a daunting and exhausting task after surgery, but with the help of my bee pillow-pet pressed against my abdomen, I was slowly able to make it through learning how to do everything I once knew. There is no way I could have made it through recovery without my family, my surgeon, and the staff cheering me on along the way.
Any illness will take a toll on you mentally and physically. For kids living with pancreatitis as well, what piece(s) of advice would you tell them to help them get through this? What would you tell other patients?
I would first and foremost say to kids, you can get through it! You can and will make it through the pain one way or another! Find someone who will listen to you and be with you while you don’t feel well and help you advocate for yourself. Watch your favorite shows or movies and wear a comfortable pair of pajamas during attacks, because the small things really do matter. I would tell patients that you are not alone in this fight! There are so many people dealing with the same thing who understand your pain and struggles, so please never feel alone in this. I also want to encourage you to never give up finding a doctor who will help you, because you know your body best! Most Importantly, you are so strong, and you can do it!
For you personally, what has helped you most during this ordeal?
My faith and my family were the only thing that got me through. I think falling back on them during these rough times were the only thing that kept me going. I honestly don’t know what I would have done without my family being there for me and caring for me mentally and physically throughout this battle against my own body. I also found people dealing with pancreatitis through Instagram, patient support groups, and Camp Hope as a counselor that have helped me feel less alone in my journey and more understood.
How are you feeling now? And how is your life now post-partial pancreatectomy?
I am still struggling with frequent attacks and some daily pain, but I am managing as best as I can, while trying to get in to see a pancreas specialist. My life is very different now post-op. I have diabetes and digestion issues associated with the surgery and damage from the disease progression but manage it with enzymes and an insulin pump. I have learned so much throughout the last 14 years I have been dealing with this, with the biggest being I’ve learned being what I am capable of! It is not easy, but it is possible. My life looks especially different right now because I am preparing to go in for my first pancreatic cancer screening in less than a month, and this is something a 22-year-old generally does not have to think about and prepare for.
Today I am in college and want to be a Child Life Specialist. I chose this career after going through everything with my health. When I was in the hospital, the Child Life Specialists made the biggest impact on me, especially when I felt terrified during my first hospital visit and also during other stays when I felt hopeless. They were able to give me back this hope and helped me to find joy within the walls of the hospital, despite all of the pain and uncertainty I was facing. This joy and hope they gave me inspired me to return the favor in my own life as I work towards being a Child Life Specialist.
How did you find out about the National Pancreas Foundation?
I found out about the NPF through simply googling to find Pancreatitis Support Groups. I found it looking for someone who truly knew what I was going through, when I was struggling to accept my diagnosis and how it would affect me in the future. Also, as I mentioned above, I volunteered as a counselor at Camp Hope which was one of the best weeks of my life!