Bird picking at food after Whipple surgery and Creon

Posted by happyjack @happyjack, Jul 5 9:25am

In a week I go in for my Whipple surgery. After the surgery my doctor and others on this forum have said I need to eat very small amounts of food but to keep eating. Like a bird that will pick at something then wait a few minutes and then pick a little more. I am on Creon and take 2 24k capsules with regular meals. Will I need to get a new script for a lower dose capsules or how is this delt with?

I do not feel bad right now. I have been drinking 2-3 boost shakes a day and that has really helped. May have even gained a pound or 2. I am really dreading the surgery and the recovery. Then the Chemo if I make it through to that ok. I have been getting things ready and going through stuff and getting rid of a lot so my sons will not have as much to do. I feel well enough to do this now and I am sure I won't after next Friday. Just thought about getting a living will. Hope I can get that done next week. I really don't want to have my innards cut up and removed and re-routed. And follow it up with taking meds that make me really sick. I really don't want to do this. I have decided I would get it a surgery and one chemo series. I just don't want to stay on chemo for the rest of my life. And spend the rest of my life suffering from the chemo sickness. Just a week away and I'm just getting really nervous about what I am doing to myself.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@dalegantous

That's great!! Getting through Whipple is hard and you've done it, good for you!! Modified Whipple is great as well, that's what I had and I eat normally now with the help of Creon, and a daily pantoprazole. My stomach was hugely puffed up after surgery, it has since gone down to normal. If it's cancerous then of course they'll give you chemo, pancreatic is so darn aggressive you'll want to get rid of any lingering cells. I'm in Canada and the protocol up here is Folfirinox. It was tough on me (diarrhea and exhaustion) for the first few cycles, then my oncologist reduced the concentration and for the last few cycles I've had almost no side effects at all.
Best of luck on your recovery!

Jump to this post

Best wishes to you and everyone who has gone through this.

My understanding is that pan can in the early stages is often a benign growth. Read where one guy was confirmed the tumor was benign and when it was removed it was mostly malignant. Really difficult to do but when caught early enough before the tumor develops into cancer and the Whipple or modified Whipple surgery is done then pan can can be stopped. My health is not good and I will not qualify for trials and it seems that depending on how far the pan can has developed the Chemo has different levels of effectiveness on the pan can cells that are left and any new tumors that occur. The best hope is that early Whipple surgery will get all of the benign or even when just a few of the tumor cells have turned to pan can. With my doctors information that my tumor was large it seems probable that I do still have a number of pan can cells in me. I would also guess that the earlier I am strong enough for Chemo the more effective chemo will be.

That is my game plan. The Whipple surgery as fast as possible and chemo as soon as I am strong enough. After that if all is good and clear sailing then not much more will be needed. If the chemo has little or no effect on the pan can left inside me and more tumors occur then I am leaning with hospice.

Latest word is that the surgeon may keep me in the hospital until my INR (blood thinning) is in range. That will take another 5-7 days so I really hope not. Chances are he will see the amount of time this will take in the days that follow and get me out of here by this weekend. I am a fall risk and in what I call bed and chair jail when in the hospital. I have an alarm set up to go off if I get up. My activity is very low and I will do much better if I can get home to manage my medications and increase my activity level. This hospital stay is just slowing my recovery. Not much I can do about this though. I was feeling really bad yesterday and was grumpy with him. I have not seen him today yet. Just the one associate.

I hope nothing but good things to you and everyone else out there.

REPLY

No worries on that stomach. They inflate you with air or gas(?) to be able to work in there! It will go down. As it does you may feel shoulder pain. Weird, but that’s where it goes sometimes! Glad to hear you are on the other side.

REPLY

I made it home yesterday. They used glue on the robotic incisions. They said I can shower but not to scrub. I found out what that's about when my clothing rubbed on them. I am short one of my neds, Metoclopramide 5mg as the pharmacy did not have it. I have 2 days' worth of 7.5 mg Oxy. 20 Nausea pills. They cut my acid blocker in 1/2 from 40mg Omeprazole twice a day pre op to once a day post op. Blood sugars have been really high. 400 at times and 200's most of the rest of the time. So far, I have just been eating Steel Cut oats with sugar free coco mix and chocolate Boost Glucose Control Shakes. Takes about 2 hours to get them down and I still feel like I have overeaten thanksgiving and my stomach is swollen tight.

But man is it great to be home and to see my dog. Home health is supposed to call. I need to shower and go to my primary care doctor for an INR. Need to make a follow up with the surgeon in 2 weeks. Then I hope I can take the weekend off and rest and recover.

I need to go grocery shopping. Maybe tomorrow for that. I am on a 15lb. weightlifting restriction. Just need to use a lot of lightly loaded bags.

Last night was a bit of trouble with pain sleeping as I tried to sleep on my side. Hope to get that worked out a bit by this weekend. And get home health for some PT to speed recovery so I can start Chemo as soon as I can. The quicker I recover the quicker I can start Chemo and the quicker I will get to the end and have the answers.

Wishing nothing but good things for you and yours.

REPLY
@gamaryanne

No worries on that stomach. They inflate you with air or gas(?) to be able to work in there! It will go down. As it does you may feel shoulder pain. Weird, but that’s where it goes sometimes! Glad to hear you are on the other side.

Jump to this post

Post surgery hospital pain was of course my whole abdomen, my feet with neuropathy pain from high and irregular blood sugars, and neck/shoulder pain from aggravating my C5/C6 stenosis. I had been putting off the surgery on the stenosis and had 2 problems with Blood clots in my left leg. As I am now forever on warfarin I can no longer have the neck surgery.

When I eat my tiny little bits or sips, I seems to really hurt my abdomen. And I swell up like a twisted ancle. I think I have a very slow-moving blockage. And it is moving even slower than I am eating. Still waiting for my bowels to move. Or that is what it feels like.

I really hope my swollen abdomen will resolve soon.

REPLY

Hi happyjack. I’m just wondering how you are coming along after surgery. I hope you have family and friends to help out. And you mentioned your dog. Our animals most certainly can help us heal. I don’t know how I would have made it through the initial recuperation stage without my collie, Poppy. I’m sending you healing thoughts.

REPLY

Thank you whipple2232. It was my job (fun) to take Linda my Husky to the dog park everyday that weather permitted. My sons are now doing so and I went for the first time today with my son and Linda to the dog park. I am still on pain meds and the problems they cause. I have not lost weight and am holding the same weight I was pre op. I have been going through my room. And doing some work on my work bench, Not a lot but a little when I feel like it. Working on meals I can eat. Mostly oatmeal, toasted oats, yogurt, applesauce, Boost shakes, scrambled eggs, cantaloupe, mashed potatoes, and I even went out to eat and had some plain refried beans and flour tortilla's. I even tried a pancake. Some of those foods they give me and I tried in the hospital. I go in to see the surgeon on the 1st for my check up since I left the hospital. Home health is sending out PT sometime soon.

Had some bad times. I do not like pain meds and they make me sick. Took a while to balance pain vs feeling sick. Had a lot of pain the first week out of the hospital. I am still sure I made the wrong choice to have the surgery. If I could go back I would not do it. Just too much pain on top of what I have all the time. And I can't really manage my chronic pain let alone what this adds. The surgery pain is reducing and much of my activity has been trying to walk off the pain so to speak. I will see what PT can do to help.

Take care and best wishes to all with your fight.

REPLY
Please sign in or register to post a reply.