Medical Questions > Conditions and Diseases > Pancreas Disorders Forum

Severe chronic pain 3 years after Whipple Pancreatoduodenctomy

Must Read
Gastritis is a general term for stomach disorder. Learn more about types of gastritis, and the anatomy of the stomach in this basic intro to gastritis....
Gastritis occurs when the stomach lining becomes irritated and inflamed. But what can cause this medical condition? Are you at risk of this stomach disorder?...
Gastritis, or stomach inflammation, can be either acute or chronic. Learn how to tell the difference and know when to seek medical help by reading here....
Most of my Pancreas turned to a soggy mess(doctors description)
So 3 years ago I had a Whipple Pancreatoduodenectomy. The Gastro Surgeon who did it plainly does not want anything more to do with me. He says he has done all he can.He told me to go home and enjoy the rest of my life.
But I am still suffering nearly the same amount of brutally high chronic pain that I had pre Whipple. Even though I am on 2 Fentanyl patches every 3 days of 100mcg/H and 75mcg/H, plus 300mg of MS Contin daily, the pain is excruciating and is driving me into severe depression.
My life is not a life of any substance because of this non stop painful nightmare.
The only major pain difference is that the area high up in my chest where the large part of my pancreras was removed is no longer part of the the pain area. I am hoping for a celiac plexus block operation but it is another wait and wait game.
My questions are
a) Is the pain being caused by unavoidable nerve damage from the operation and stretching of scar tissue where my organs were cut and rerouted.
I'm not in anyway blaming the Surgeon for my condition. I'm grateful he initially saved my life. But I had no idea of the torturous life I have ended up with.
b) Is it normal to still suffer excruciating pain 3 years after a Whipple.
Sometimes I feel as though the little bit of my pancreas that wasn't removed is now deteriorating. I have a lot of the same symtoms.
Does that happen very often after a Whipple.
And of course I have also got severe constipation because of the Fentanyl and MS.
Did you find this post helpful?
First Helper mar24
|

replied September 16th, 2011
Hi, I had the whipple on 11/30/10 and then deeveloped pancreatitis 2 months after the surgery, had 2nd surgery on 3/15/11 to surgicaly open my pancreatic duct that closed due to scar tissue, now according to the pathology report I have chronic pancreatitis. I have severe pain episodes and my surgeons office told me they see no problems in my ct scans and blood is normal they told me that it could be post tramatic pain disorder. I want to scream because the latest pain attack I also had a fever, I guess my mind caused that too. It is so frustrating I guess there is nothing he can do for me surgically so they say that there's nothing wrong with me. I don't wish this pain on anybody but I do wish they could experience it for an hour and then tell me that its in my head!!!!
|
Did you find this post helpful?

replied September 16th, 2011
G'day mar24,.,I'm sorry to hear you haven't got a proper result from your operations.
Can I suggest that you should ask your Doctors about a celiac plexus block operation.
I'm a tad confused as to how you are describing your condition and the sequence.
You're saying that you have developed Chronic Pancreatitis after having a Whipple.
I assumed that we're all supposed to have a Whipple to try and fix up Chronic Pancreatitis or Pancreatic Cancer etc.
Can you clarify your story a bit better.
========================================== ======
Regarding the pain,.,
The amount of times I hear the same old crap about pain is being caused by your brain is just more corroboration that heaps of our learned sawbones know five eigths of all about real pain.
========================================
In my own comedically un-politically correct way....,
''I don't wish this pain on anybody''
People usually say this with the old cliche "I wouldn't wish this pain on my worst enemy"
Well, I would. Because if I had a worst enemy, I can't think of a more painful affliction to bestow upon them than the monstrously diabolical pain of Chronic Pancreatitis.
That's because I describe my pre Whipple Chronic Pancreatitis as
"a ravenous horde of starving rats, ripping, gnawing and devouring my intestines and bowels with red hot razor sharp teeth that were plugged into an electric socket."
PS,.,Post Whipple, all that's changed is that the !**@! rats have turned the electricity from 240 volts to 12 volts.
|
Did you find this post helpful?

replied September 16th, 2011
G'day mar24,.,I'm sorry to hear you haven't got a proper result from your operations.
Can I suggest that you should ask your Doctors about a celiac plexus block operation.
I'm a tad confused as to how you are describing your condition and the sequence.
You're saying that you have developed Chronic Pancreatitis after having a Whipple.
I assumed that we're all supposed to have a Whipple to try and fix up Chronic Pancreatitis or Pancreatic Cancer etc.
Can you clarify your story a bit better.
========================================== ======
Regarding the pain,.,
The amount of times I hear the same old crap about pain is being caused by your brain is just more corroboration that heaps of our learned sawbones know five eigths of stuff all about real pain.
========================================
In my own comedically un-politically correct way....,
''I don't wish this pain on anybody''
People usually say this with the old cliche "I wouldn't wish this pain on my worst enemy"
Well, I would. Because if I had a worst enemy, I can't think of a more painful affliction to bestow upon them than the monstrously diabolical pain of Chronic Pancreatitis.
That's because I describe my pre Whipple Chronic Pancreatitis as
"a ravenous horde of starving rats, ripping, gnawing and devouring my intestines and bowels with red hot razor sharp teeth that were plugged into an electric socket."
PS,.,Post Whipple, all that's changed is that the rats have turned the electricity from 240 volts to 12 volts.
|
Did you find this post helpful?

replied September 28th, 2011
Hi, The reason I had the whipple was because I had a tumor in the head of my pancreas, that I was told that I only had 3 months to get it removed before it turned into cancer, my tumor marker was 767 and they told me 1000 is cancer. I know have been having many problems and everything points to pancreatitis, but my tests are all normal. My surgeon thinks it could be mininal change chronic pancreatitis and he said if it is that I would have to get the remaining piece of my pancreas removed. I am now trying to see a pancreas specialist at the university of Florida but he can not see me until November 7. I know wonder if this is many peoples problem after the whipple because with this form of pancreatitis there are no major physical changes to your pancreas and your levels do not have to be elevated. I just would like to know what is going on so I don't feel like I am Crazy. After researching this disease it just means that chronic pancreatitis is taking its time to reveal itself with physical symptoms and of course NO CURE so because of the whipple I know probably have this Horrible Disease. This surgery saved my Life and also messed it up royally but I know it is still better than the flip that I would have had pancreatic cancer. So for that I am greatfull because my Grandfather died from pancreatic cancer.
|
Did you find this post helpful?

replied November 20th, 2011
You're not crazy!! I had my Whipple in 2009 and still experience pain and discomfort. My life is not the same! My ct scans and other tests, don't show anything either. The doctors do make you feel like you're imagining it! Don't give up. Keep investigating the cause. I just changed doctors so I could get a second opinion. Keep your head up and know, you are not alone.
|
Did you find this post helpful?

replied October 29th, 2013
I had my surgery in 07 and still going through pain. it has changed my whole life. I had a tumor on the head of my pancreas and if they didn't do the whipple I would of ended up with PC my grandmother died of PC. My digestive tract is all screwed up and I have a lot of burning sensation in my throat & stomach. I have a constant ache in my stomach that goes right up my back. I also run fevers. I am seeing a specialist at the MUSC in Charleston SC but cannot get in until Feb. They are going to give me a PH test. I just had a EGD and it was normal and also had a ton of blood work all normal. I can't help think its scar tissue or nerve damage. I just want to know that I am not going crazy because sometimes I feel like something is eating at my insides...
|
Did you find this post helpful?