Diane’s Story

Site created on February 29, 2008

Welcome to my CaringBridge site. It has been created to keep friends and family updated about my progress in this walk of life with chronic pancreatitis and the side effects of treatment. My Story is the introduction to my CaringBridge site. Be sure to read the latest in the journal, view the photo gallery, and post your thoughts if you like. I do read them and it encourages me to know that people are reading what has come to be my personal journal of sorts.



I finally decided to sit down and get this out. It took me awhile to get it together, so I hope it makes sense to everybody.

It all started in 1986 when I began to have right upper quadrant pain that started 3 hours after a meal. I was put in the hospital for some tests and ultimately ended up having my gallbladder out. There were no stones, but they called it a "strawberry gallbladder." Things calmed down for about a year and a half and then returned.

But this time it was pain under the ribs in the abdomen. I was sent to St. Louis to have my first ERCP. I had my first documented case of Pancreatitis after that ERCP. That was when they thought they found the divisum, and it was confirmed 4 weeks later. I went to Barnes Hospital to have a surgery that opened the pancreatic duct for more normal function. The post-op pain was the most pain I had had up to that time. I had no idea that this was the beginning of a life of pain every day.

Things seemed to calm down for a while until 1992. The pain and nausea returned and I continued to have to return to the hospital every few weeks for IV's, pain meds, and NPO status.

By 1995, I was having epigastric pain after about one and a half hours of eating just about anything. I was referred to Dr. Peter Cotton at MUSC in South Carolina and he gave me the diagnosis of chronic pancreatitis.

By this time I was taking Percocet for pain and Zofran for nausea. A couple doctors had said that I had a motility disorder (IBS) and should push fluids, eat high fiber and not take narcotics for pain. When things continued to go downhill, I was eating very little, losing weight, and generally felt puny. I was still working full time at a hospital and most of my co-workers said I needed to change doctors. So in October of '95 I began going to an internal medicine doctor who I stayed with until June of 2006 when he retired. On the first visit he told me, "I have not cared for anyone who has what you have, but I will not give up on you." I burst into tears as I had already had 3 doctors give up on me and I knew I could not handle that anymore. I think he did too.

By 2002 I was having so much pain I was on 160mg of MSContin plus Morphine every 4 hours for breakthrough pain. I heard about something called an intrathecal pain pump that patients with many different painful conditions have used and been able to drastically cut down on their doses of pain medicine. I knew this was something I needed to pursue eventhough the first clinic I went to didn't seem to interested in helping me get it. The second pain clinic I visited told me on the first visit that I was a good candidate for it and sent me home with a video and written information on the pumps. Two weeks later I called them back and said I wanted to go forward with it. Not surprisingly the insurance covered it without a problem. I was admitted to the hospital for the trial and surgery was scheduled for August 22, 2002. The only problem was that I got a surgeon that was not very experienced in putting in pumps and about a month later I had to return to surgery with a different surgeon to fix what the first doctor messed up. But what a difference!!! The pain doctors gradually increased the rate of the pump until I had good relief with very little need for breakthrough medicine. As time went on, I needed the rate increased as my pain increased, but it was working wonderfully. I no longer felt drugged up and sleepy all the time, I felt like I had a life again and until around 2006, I was able to stay out of the hospital with the acute attacks. I did have a period of time where I was on hydration IV's at home to try to prevent more hospital stays, but that was only for about 2 months.

That brings us to about where my journal starts here. I know it is quite long, but it would be difficult to understand where I am now without knowing what has gone on so far. Your determination to read through the entire story gives you an idea of the determination I had to have to get what I felt I needed to get through this difficult time...and the determination continues...with God's help...





Newest Update

Journal entry by Diane Hollister

   So here we are in June already! Nashville is only still in phase 2 of opening. Our numbers are higher now than they were when everyone was staying home...but they kind of expected that. People have stopped wearing masks in grocery stores and such as if everything is all over and I think that's part of the reason why our numbers have increased too.
   But here's the good news! Sue and I were finally able to go on our Florida vacation the last week in May. It started out kind of rough because the resort had cancelled her reservation so when we got there, it showed as cancelled. She spent over 45 minutes on the phone with the timeshare company and they finally got it straightened out. But wait...there's more. Because of the confusion and stress of it all they gave us an upgrade to a 2 bedroom instead of a one bedroom. I think I actually benefited more than Sue because we had planned for me to either sleep on the sofa bed or on her blow-up mattress on the floor. Well... I got my own bedroom with 2 beds and a bathroom (and even a private patio--but I didn't use it).  We had free laundry too! 
   The first 3 days were stormy but Sue brought coloring books, a jigsaw puzzle and I had brought cross stitch so we had plenty to keep us occupied. We finally got down to the beach 3 different times and of course I came home with a sunburn. I also came home with a black eye because I slipped on the concrete on the way to the beach and slammed my face into a metal gate. A few nurses who were at the kiddie pool came to my rescue with ice and helped me up so we were on our way.   
   I'm telling all this because from the very start of trying to plan this trip, I could see God's hand. The last week in May was our last opportunity to go because Sue's work had already changed her vacation time once. Even though it was stressful at the start, we got more than we had planned for as far as accommodations, and my fall did not result in an ER visit as it very well could have. Our God is so good!! 
 I hope you are all doing well and will soon be able to get back to a "normal life", although I don't think any of us know what that will be...but God does...and that's all we need to know, right?
Many Blessings,
Diane
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