If you attempt to reach me, you will have to leave your email address. The way these blogs are set up, there is no way for me to know your email address. If you want me to respond to you, somehow you will have to leave away for me to contact you.
It is my sincerest desire to assist ALL who have suffered with this affliction. Please allow me to respond to your requests.
Lisa
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8 comments:
Hi Lisa,
My name's Chris and I'm 43 years old. I developed a cyst-like tumor in the distal third of my pancreatic duct fourt years ago and it caused sever bouts of pancreatits. I was treated at the Mayo Clinic in Rochester and shortoly after discovering the tumor, they removed the dital half of my pancreas. The Islet Cell Transplant was not succesful and subsequently I'm type I diabetic and due to numerous/chronis pacreatitis the remaining poancreatic body and head have become scarred/calcified and I produce no insulin of my own. I take Novalog 3-15 units 3 times per day (sliding scale) and 20 units of Lantus at bed time.
A few months ago, they discovered two very small tumors in the pancreatic head. After two fine needle aspirations at Cedars Sinia in Los Angeles, they cannot decide if it is adenocarcimoa or not. Amonth ago, I came back to Mayo Clinic and it has been decided that remval of the remaining organ is the best option. Since I produce no Insulin, diabetes management will remain the same. However, Enzyme replacement will be the new challenge.
Will you procide me with an accurate description of yoru personal experience with Enzyme management? What is your daily regimen with respect to nutrition? I'm 5'10" and weigh 165 pounds. I'm very athletic and muscular with low bady fat. I'm very concerned about losing weight, specifically muscle mass.
I would also like to hear your opinions regarding pain management. As you know very well, pancreatic pain is horrible and very difficult to control. I live with base line of 4-5 pain and can get through it with no pain medication. However, five to seven times per year, I develop full blown pancreatitis for no apparent reason which pushes me to a eight to ten pain level requiring IV pain meds for a few days and then a week or so of Oxyxontin and Dilaudid for break through.
The goal of next weeks surgery is primarily to decrease pain level as much as possible and to obtain final pathological results ruling out adenocarcinoma or confirming it.
Any and all information would be greatly appreciated.
Sincerely,
Chris Marrs
cdmarrs@ymail.com
530-307-2008
My name's Chris and I'm 43 years old. I developed a cyst-like tumor in the distal third of my pancreatic duct fourt years ago and it caused sever bouts of pancreatits. I was treated at the Mayo Clinic in Rochester and shortoly after discovering the tumor, they removed the dital half of my pancreas. The Islet Cell Transplant was not succesful and subsequently I'm type I diabetic and due to numerous/chronis pacreatitis the remaining poancreatic body and head have become scarred/calcified and I produce no insulin of my own. I take Novalog 3-15 units 3 times per day (sliding scale) and 20 units of Lantus at bed time.
A few months ago, they discovered two very small tumors in the pancreatic head. After two fine needle aspirations at Cedars Sinia in Los Angeles, they cannot decide if it is adenocarcimoa or not. Amonth ago, I came back to Mayo Clinic and it has been decided that remval of the remaining organ is the best option. Since I produce no Insulin, diabetes management will remain the same. However, Enzyme replacement will be the new challenge.
Will you procide me with an accurate description of yoru personal experience with Enzyme management? What is your daily regimen with respect to nutrition? I'm 5'10" and weigh 165 pounds. I'm very athletic and muscular with low bady fat. I'm very concerned about losing weight, specifically muscle mass.
I would also like to hear your opinions regarding pain management. As you know very well, pancreatic pain is horrible and very difficult to control. I live with base line of 4-5 pain and can get through it with no pain medication. However, five to seven times per year, I develop full blown pancreatitis for no apparent reason which pushes me to a eight to ten pain level requiring IV pain meds for a few days and then a week or so of Oxyxontin and Dilaudid for break through.
The goal of next weeks surgery is primarily to decrease pain level as much as possible and to obtain final pathological results ruling out adenocarcinoma or confirming it.
Any and all information would be greatly appreciated.
Sincerely,
Chris Marrs
cdmarrs@ymail.com
530-307-2008
I had come across your blog while doing yet more research on pancreatitis. My story is long and miserable which pretty much seems to be the lot in life with those who fall under pancreatic patients. I had a, "simple procedure" done in August 2007, a gallbladder surgery. Ever notice how surgery is always presented as, "a routine, simple procedure" as if I were having a cavity filled. Well the surgeon cut my common bile duct during the surgery. JP Drain and T-Tube for 7wks. I had then developed a stricture within my duct. I had stent placements every 8 to 10 wks for a year in an attempt to reduce any scar tissue build up. After one of the ERCP stent placements I developed pancreatitis. Now I have pain every day and am approx 6Rx's. I get what I call a flare. I get that stennoreah (I can't remember how to spell it) for days, almost constant nausea, some vommitting, usually stop eating, pain in my abdomen that bores though to my back, right side pain like where my gallbladder should be, fever. I go through a CT and they do the amylase & lipase test. Almost every time they come back normal. I get the, Yes, you had pancreatitis at one time but your levels are normal, nothing that points to pancreatitis. I get angry and depressed. I'm sorry, but none of the other symptoms say anything?? I have been miserable since my surgery with all the procedures and then the pancreatitis which has just taken over my life, leaving me with not a whole lot of anything else but pain, vommitting, nausea...
I am SO frustrated. I feel like the doctor's never hear me. I have called the Mayo Clinic and they have agreed to see me. Perhaps they can provide some answers. I've run out of hope here. I'm miserable, my marriage is on its last leg, I lost my job due to all the pain and time I spent in the hospital. Are amylase and lipase the only thing they look at. The blood test results in black and white on a page? What about every other symptom I have? I'm so at my end. Then I came across your blog and all you've been through. So many things sound similar to what I've experienced. I wanted to share and reach out. Thank you for taking the time to read this long post. I really appreciate it.
Sincerely,
Julieann
JulieannsSerenity@gmail.com
Julieann I have sent you an email let me know if you have not recieved it.
How do i participate?
I want to respond to your comment, but I don't understand. How do you participate? Do you mean by adding a comment? It is the same as what you just did. I however have no other way to write people back other than responding to their comments here. Your post does not leave a way for me to find anyone through email.
Hey Lisa,
I am so glad that I found your blog. My nephew, 30 has been suffering with pancreatitis and was finally diagnosed in April 2011. They found psydeuocysts that were 8-9cm. The stints/stents helped to shrink the psydeucysts but his bouts with pancreatitis are worsening. He has lost about 40 pounds and is in constant pain. He has since had 5 ERCPs done, one this past Monday and ended up back in the hospital an hour after being released from the procedure in severe pain and vomiting blood. A recent scan is showing a scar on his liver that will not heal. He shares the same symptoms of pain and suffering that you have blogged about. We are trying to get him the best care but his doctors don't feel that surgery is necessary yet. We are considering Mayo, Johns Hopkins, NIH for second opinions and would love your input as someone who has been there! Thanks so much!
~Kitty Janney
kittyjanney@aol.com
I get the same thing when I go to the hospitas and my lipids and everything are normal but I've been in pain and sick throwing up for days. I only have half of my pancreas though so I think that has alot to do with it since it's not normal. But I'm glad to hear there is someone else who has it and gets results back normal even though they've been sick for days it just makes no sense.
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