On 12/15/2007
gardenlady wrote:
I had the Whipple prcedure done in May of 2007. I was in the hospital for 16 days and did very well. My recovery at home was just over 2 months with very light house work. I did need to sleep in a recliner to keep from getting dizzy spells while laying flat in bed. After August I was back out in my garden doing planting and weeding while sitting on a low bench. By this fall I was digging holes for tulips and lilies and trees with only my arthritis pains in the lower back.
I take 3 Pangestyme with meals and hydrocodone for unrelated pain. Sometimes I need to take something stronger for severe back pain and also to help the ease the bloating. The gas can be very embarrasing when eating out, shopping or even having friends over to play cards. Has anyone had that problem and how else can I control it?
Occationally I can feel a tugging on my right side below the ribs. An x-ray showed some adhesions but my specialist wasn't too concerned. I'm keeping an eye on that in case it needs to be hyphricated at some time. Other than that, I thank God everyday for being alive and being cancer free and not needing any Chemo.
Hi Gardenlady,
I am so shocked to have found anyone else that has had this surgery. And so grateful and excited. My best guess is that the pains that you feel tugging are adhesions. My oncologist said to imagine that most normal people have free flowing organs and intestines. Ours however because of the amount of surgery, are stuck together with scar tissue. He said to imagine chewing gum stuck all over the organs and how mixed up and painful it could be when the tissue doesnt allow something to move freely. So when the organs and bowels move....as they should...and you have scar tissue you can develop pain. I wish I could tell you that my pain became better over time. However it did not. Some Drs. say that adhesions don't cause pain. If they did not then I would hope that they would have found other causes. AND fixed them. So let your drs. work you up from time to time and if for no other reason alleviate your fears about recurrence. I know that every pain I had for years I thought must be a tumor growing somewhere. Sometimes test results that are clear ease your mind a little. And make you feel a little like a hypochondriac. Oh and the gas....it can be helped with gas pills....I use the generic CVS brand but I think they are all about as good as the others.
I have never chatted with anyone that has had this surgery. There are about two procedures performed in our city yearly. I had mine in November of 1992. I was 23. I think the age that you see people that start to have this sort of cancer is about 50-65. Its very rare. (Duodenal adenocarcinoma with pancreatic involvement) I was left with an unexplained chronic pain problem. They worked me up for years....gave me pain meds and..when my complaints got worse and then they would send me home with stronger narcotics. The pain they believe relates to the large amounts of adhesions I developed in the 10 1/2 hour surgery. I have the part of my pancreas that produces insulin and after some time, my body and pancreas adjusted to make enough enzymes that i did not have to supplement them. I have bouts of "drop you to your knees" very sudden pain, and then just constant pain in the abdominal and back area. A heating pad doesnt do very much but is comforting to me although I have been using it so much lately that I have had blisters on my back from laying on it too long. I tried the pills, mepergan fortis, tylox, etc. and found that I could not function to work. Most of my pain can come on so quickly that by the time i was getting some relief sometimes a couple of hours had passed. My oncologist then tried a narcotic called stadol....a nose spray. Quick pain relief via the nose that is typically used for migraine headaches. I had to dilute it with saline because again it was too strong to function at work and since a few years after the surgery I used it and phenegren almost every day for nausea either from the surgery or from the meds used to treat pain. Any one have a lot of nausea? I also find that sometimes I have gastric stasis. Your food stays in your stomach too long and makes you very sick. That can also be caused by narcotics because they slow down the intestinal system causing constipation, and stasis. Another good reason to not use narcotics.
Does anyone else have unexplained pain after whipple? Severe pain? Not just discomfort? I would love to talk to anyone that has insights into this and possibly ideas for relieving this. I am now on a patch.....fentanyl but if I forget the patch on the fourth day I start going through withdrawal symptons. It is scary for me to be so dependant on something . It does help the pain more than anything else I have ever tried and my MIND is clear. That is the big payoff. I have also had a hernia repair and an exploratory and recently i had gastric bypass surgery.(Funny they said I would probably never be able to keep weight on after this surgery-boy were they proud of me!) Probably the only person that ever had a whipple and the GBS in their lifetime. So I have adhesions that get worse with every surgery. I am finding that the 50mcg patch doesnt do the job the same....have gone through another workup....of course they never find anything of substance that is wrong, then they adjust narcotic meds. I just confess this time I am afraid of asking to have my patch upgraded. It is a highly addictive medicine yet when it comes down to it, I think my fear of constant pain and the stress that it puts on you outweighs my fear of addiction. I have had two years of the least amount of pain that I have had in the last fifteen. There is a lot to be said for that.....so I am conflicted.
Thoughts? Anyone having issues? I also had the whipple followed by chemo and radiation.
I know I am very lucky girl. I have one doctor that reminds me constantly that I am lucky to be alive....and that the pain....just has to be dealt with and that I should be grateful.
That doesn't mean that I will ever grow completely complacent about trying to continue to improve my situation. I married a man a couple of years back, and one of my biggest problems was that when I hurt, I had to go to bed. I missed life and still continue to have to sit out on things when the pain is really bad. Our marriage has ended and I can't help but feel like this was a great part of the problem. I don't plan on burdening someone else with it in this lifetime though.
Thanks for reading and I would love to hear any thoughts.
Traci