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...
My goodness, it's almost halfway through August already!
After 2 visits with my new PCP I realized that he was not really a good match for me after all. When I mentioned that I was still having pain in my head, but the the location and character had changed he didn't seem at all interested in even answering if he thought it was something else going on. He said something like, "well, which one started first?" and when I told him he said, "well it's probably the same thing" and left it at that. I walked out after that appointment knowing that this wasn't going to work out. So now I've found a Family Practice doctor with Ascension who's focus is women's healthcare and integrative medicine. I am looking forward to my first appointment on Sept 7th.
Regarding the pain in my head, on some days I have been able to get by with ES Tylenol twice a day and Aleve and 1/2 of a 25mg Amitriptyline at bedtime. I had to stop the whole dose because the imbalance issues and dizziness was just too much. It still takes me awhile to find a comfortable position to sleep in, but have been able to sleep all night most nights. I'm curious to see what the new PCP has to say about this ongoing issue. Swimming at the YMCA 3 days a week seems to help some as opposed to just walking for exercise.