Whipples Operation Survivors

Hi,

Sorry to hear your dad is still suffing so much pain, I know how you feel.  My husband had a whipples operation in July 2007 and is still getting severe stomach pain, his chemo has been stopped half way through the 26 week course so that they can try to find out the cause of so much pain but it has taken a long time for the Doctors to listen to him and start investigating.

You don't say what kind of pain relief your dad is taking. If it is any help my husband is on 150 ml Durogesic patches which he changes every 3 days, he takes copious amounts of Oramorph and CoCodamol tablets. He does have good days but the pain never goes away completely.

So far he has had a CT scan which has shown no obvious cause for the pain and is awaiting an appointment for a laproscopy, but being the British Medical Profession it could take months.  Where are you from? you may have a better health care system.

Diet and weight gain is a big worry, it took 7 months for my husband to eat any savory food.

I wish I could offer more help I know how hard it is to try and find help and for somone to listen to you. My husband is sitting here with me now and says to tell your Dad to make sure he takes all the pain relief given to him and make the best of the good days because he will get them as time goes on.  He also says look back at the the months or even weeks and see how he has progressed since his surgery even though it seems slow, they may seem like small improvements but they are massive leaps post whipples.

Mandy & Pete

Hi Mandy and Pete,

                       Thank you so much for replying to my message.  To be honest I dont know what pain medacation my dad is on, i know he has codiedromol (sorry dont know how to spell it) but he says they dont work.  The thing is my dad is worried that if he tells them how bad it is they will have him back in and operate again.  We are from the UK, south coast and so far everything hospital wise has been great, but he just wont ask for help.  My mum is near her wits end because he has questions she cannot answer, thats why its nice to come on here and talk to peole such as urselves.

             Thank you again and pete i hope they find a way to help u

kim x

Hi Kim

Tell your dad he MUST ask for help with with his pain control he won't start to feel any better untill he does. we were told that once you start chemo your recovery from the surgery stops at that point. They won't automatically do another operation they would probably do a CT scan.  Tell him to ask about DUROGESIC PATCHES they start from 7 micro grms over an hour and you change them every 3 days. My husband is on 150 micro grm patches so it is quite a lot more, they may help. Also ask for the Oramorph solution.

Your poor mum I know how she feels, you just want to scream and shout for someone to help you and make it all go away, but no one can. I don't have any magic words to help her I don't know how iv'e coped myself, you just do you have to.  I found screaming and crying in the car when your on your own is a bit of a release, other road users think your a bit of a mental case but hey your never gonna see them again so what the hell.  

 So please print this and show it to your dad.  "Don't be afraid to ask for help with the pain, you could be suffering when you don't need to, talk to your GP or if you have access to a McMillan nurse talk to them they can help you if you let them".

Best wishes to you all.

Mandy 

Hi, I am a long term Pancreatic Cancer survivor.  I had my Whipple almost 18 years ago.  The only pain I EVER experienced was a digesive pain.  The way the Dr. explained it to me was that I was replumbed inside.  If you look under a sink and see the U trap and visualize that same U or maybe a double U in your body and then realize your body digests food 1 way for many years and then is forced to do it another way.  I was told and always believed that it was the food moving along my digestive track and maybe gas being forced along and expanding intestines that have never experienced this.  I do remember the pain was crippling and I could not even breathe or stand up straight!  I remember the fear when it first happened and for quite a while when it kept happening.  Thank God, I have not had that pain in a very long time, now.  I wish you the best and think that you are over the worst part and now, just relax, don't have too many physical expectations of your body.  1 day you will have the realization that you actually feel pretty well.  There is always "stuff" that we go through but take it a day at a time.

Larry

Hi - hope your Dad is doing better....

I had the Whipple done August 9, 2006.... Did radiation and am still on IV chemo once a week and a new oral chemo daily.

After my Whipple I was in so much abdominal pain for at least 8 months.... Always bent over etc.. Surgeons said it was because of the procedure, they take half of your intestines, half of your stomach, your gall bladder, the tumor and whatever else, then they have to piece us all back together so we can function...... So I can see why the pain lasts....

To this day I stll have much pain, most of the time bearable. I am on Oxycodone. Doesn't help that much, but I survive. I am sure there is something they can get for your Dad to help him with the pain.

God bless you and your Dad - stay strong............