Post Whipple Surgery - Pain

I had whipple surgery in July 2007.  The surgery went well and I had no complications.  Within the past two weeks, I have had 2 episodes of severe pain in the whipple area.  The pain is so severe that I break out in a heavy sweat and it lasts for about 2 minutes and slowly goes away.  I have had 2 C-T scan show nothing and several blood tests that are normal.  I have developed a hernia around the incision area.  I have been feeling very good with occasional days of tiredness.  Does anyone have any idea what is happening? 

 

On 1/11/2008 mulberry wrote:

I had whipple surgery in July 2007.  The surgery went well and I had no complications.  Within the past two weeks, I have had 2 episodes of severe pain in the whipple area.  The pain is so severe that I break out in a heavy sweat and it lasts for about 2 minutes and slowly goes away.  I have had 2 C-T scan show nothing and several blood tests that are normal.  I have developed a hernia around the incision area.  I have been feeling very good with occasional days of tiredness.  Does anyone have any idea what is happening? 

 

My husband had the Whipple on 8/22/07 and he is 47.  I don't know what is taking place for you but I know my husband has had the exact same symptom and frustration.  He has a continual sharp pain in the whipple area but then once in a while gets a pain that takes him to his knees and lasts about 2 minutes.  He remarks it feeling like a wedge.  

I have read different message boards and have heard the same remark from other people.  No one seems to diagnose it and they seem to just persevere.  I would appreciate hearing any findings you may have and he has a pt scan on 1/22 which we hope gives some answer. 

 

I had the Whipple procedure on 12-16-2005 and have had the same pain since. Sometime is it light and other times as you describe it will take you to your knees. I have no idea why but have found that taking Gas-X strips when I first feel it helps. I feel that it might be scar tissue irrated by the processing of food but am just guessing.  I am just glad that I am still here to feel that pain.

Ken 

 

Hi, I had whipple surgery in November 2002.  The pain you are having is sometimes called simply the Whipple Pain.  I found users on another board that described it, and I was so glad to find I was not the only one who has experienced it.  Not that I wish that kind of pain on anyone, it's just that every pain after diagnosis of PC can be very scary. 

It really is an awful pain.  Hard to breath when it hits, and I break out in a cold sweat during the episode. I do still have it, but only occasionally now.  I have found it is linked in my case to over doing it, especially lots of bending like I do when working in the garden.  I have also learned to recognize the beginning of the attack, and if I stand up immediately, drink a glass of cold water and walk around for a few minutes, this will usually break the pain cycle before it gets bad.

It seems this may be something Whipple survivors have to deal with since most folks who have written about it say the doctors have no explanation for it.  And it appears to be not uncommon in people who have had this surgery. I hope you can find a way prevent it.  Best wishes.     

    

 

Hi, I am a long term Pancreatic Cancer survivor who had a whipple back in 1990.  I had this pain also and it scared me senseless.  I think that it is a gas pain, also.  It is very severe and it is dificult to breathe when it is happening.  My Dr.'s don't know what it is.  I don't remember the last time I had it but probably will, tonight, since I just said this.  Good luck with your recovery.  I guess we all know that it could be much worse.

Larry

We are coming to terms with the severe sudden pain that occurs, but my husband is still experiencing pain at the top of his incision along the upper stomach.  It has been 5 months since his Whipple.  This is a continual pain that nothing shows with ct scans or endoscopy.  This pain never goes away and his stomach is distended.  Can anyone relate?  Is this normal for 5 months post whipple?

I appreciate everyone's feedback.  It is tremendously calming to know you are not alone. 

 

 

On 1/19/2008 Mich1031 wrote:

We are coming to terms with the severe sudden pain that occurs, but my husband is still experiencing pain at the top of his incision along the upper stomach.  It has been 5 months since his Whipple.  This is a continual pain that nothing shows with ct scans or endoscopy.  This pain never goes away and his stomach is distended.  Can anyone relate?  Is this normal for 5 months post whipple?

I appreciate everyone's feedback.  It is tremendously calming to know you are not alone. 

 

I understand there are different approaches to incisions for Whipple surgery.  Mine was a vertical incision, ending below my belly button.  These incisions cut through a lot of nerve tissue.  The incision area above and below my belly button resulted in a raised scar.  The doctor refers to it as hypertrophic scarring.  It was extremely sensitive for the first couple years after surgery.  I found early on any pressure from clothing on any part of the raised scarring resulted in constant pain along the incision, even the part that was normal scarring.  The pain was not overwhelming, but bad enough to keep my attention.  I found that wearing lose clothing helped, no fitted waistbands on jeans for example, only the off the waist style.  

 For me, year three started showing improvement.  The scar became less sensitive.  I am past five years now.  I still cannot wear anything fitted at the waist or I will have the pain.    

Re. distended stomach.  Does your husband take pancreatic enzymes with his meals.  If not, or if he doesn't take them in sufficient quantity, he can have lots of gas problems that can cause bloating.  Could it be possible that the distended stomach is putting pressure on the incision scar thus putting pressure on it and causing the pain?    

Don't know if any of this will help, but I hope it does and I hope your husband improves soon. 

  

 

I had a whipple in 1992. I have never seen this website before tonight and I am finding it hard to log out and go to bed. You can only know if you have had the whipple....and the pain.....what it means to me to know that I am not alone. Every doctor that I have been to tells me that this pain is unknown, no cause, maybe adhesions, but they dont have other patients that experience it. I use a pain patch after 15 years of various meds that didnt help much. The patch has served me better, but I don't know that I would feel that this was something to start if you didnt have to. The pain finally debilitated me to the point that I quit work. It was only with narcotic drugs that I have had something of a normal life. I finally have some reassurance that it is not me, is not in my head, and is a valid problem with this life saving surgery. I knew that for the most part always, but I just never knew anyone else that had this. Exactly the way that I experience it. I will write more when I stop crying these tears of relief and get some sleep about the things I have found to be somewhat helpful. Not much to add here. But maybe something.

Thank you. All of you. My fifteen years of wondering if it was only me just came to an end. I am so sorry that you have this problem. I am so grateful that you shared it here.

Thank you.

Traci

 

 

On 1/18/2008 AliveInOldeTown wrote:

Hi, I had whipple surgery in November 2002.  The pain you are having is sometimes called simply the Whipple Pain.  I found users on another board that described it, and I was so glad to find I was not the only one who has experienced it.  Not that I wish that kind of pain on anyone, it's just that every pain after diagnosis of PC can be very scary. 

It really is an awful pain.  Hard to breath when it hits, and I break out in a cold sweat during the episode. I do still have it, but only occasionally now.  I have found it is linked in my case to over doing it, especially lots of bending like I do when working in the garden.  I have also learned to recognize the beginning of the attack, and if I stand up immediately, drink a glass of cold water and walk around for a few minutes, this will usually break the pain cycle before it gets bad.

It seems this may be something Whipple survivors have to deal with since most folks who have written about it say the doctors have no explanation for it.  And it appears to be not uncommon in people who have had this surgery. I hope you can find a way prevent it.  Best wishes.     

    

 

Could you share the other website? I would really like to know more about what others are experiencing.

Thank you.

Traci

 

 

On 1/11/2008 mulberry wrote:

I had whipple surgery in July 2007.  The surgery went well and I had no complications.  Within the past two weeks, I have had 2 episodes of severe pain in the whipple area.  The pain is so severe that I break out in a heavy sweat and it lasts for about 2 minutes and slowly goes away.  I have had 2 C-T scan show nothing and several blood tests that are normal.  I have developed a hernia around the incision area.  I have been feeling very good with occasional days of tiredness.  Does anyone have any idea what is happening? 

I had a whipple in oct 06. Since the surgery I have had six similar episodes. Where i go from feeling fine to intense upper abdominal pain "10"  and breaking into a sweat, sometimes almost losing consciousness.   the onset of pain is often very sudden. The second episode was attributed to an incisional hernia but that was repaired and i have had 4 episodes since. The pain has been so severe that i have been hospitalized for an ave of days each time. One episode developed into a liver sand the last three into blood infections. The onset of abscess and blood infections seem to follow the pain by two to five days.  All have been cured with a lot of antibiotics. The Drs had been telling me that these were recurring bouts of pancreatitis that would decrease over time. It seems that this my not be the case because my lipase and amylase levels were normal during my episode. I have had every kind of test ct,mrcp,percutaneous transhepatic colangiogram etc. All the tests have come back negative. The Doctors don't have any good answers. As you can see the episodes could be a lot worse,hopefully somebody will figure this out soon. I am scheduled for a post whipple ercp next month. If anybody has any more info relating to similar problems please let us know.