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...
I'm not sure if anyone is still reading this, but maybe I'll find out! Hope you all are staying warm in this weather. It's been crazy the last week here in Nashville having a 30 degree temperature drop in one day! My first visit with my 3rd PCP went really well. He really seemed to listen to what I was saying and didn't have this attitude of "this is what we're going to do" and I didn't feel rushed at all. He even apologized 3 times for the wait that I had in the exam room! He suggested that talking with a pain clinic doctor might yield some results, but if what they suggested didn't sound like a good plan, I could just say no. He also suggested possibly seeing a neurosurgeon too (not necessarily for surgery, but because they understand the nervous system more completely).
I did have a pain clinic appointment 2 weeks ago and he spent quite a bit of time explaining to me what he thought was going on and what we could try. He did another nerve block, which so far hasn't seemed to make much difference. The other thing he brought up was a nerve ablation (basically according to medical websites it burns/destroys the nerve and may or may not help). It's a very long process to get the insurance to approve it and it may not even help. So of course I'm not too keen on the idea... I have been able to sleep better and swimming and the hot tub still give me a day of less pain right after. I'm praying that God will give my doctor wisdom as to the best way to approach this thing that has been going on for over a year now. I'm trying to be patient...
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