Whipple procedure recovery

Jennifer SJ

My Friend had the Whipple procedure several weeks ago. She has pancreatic cancer. The surgery was successful but the recovery is very difficult. Can people share their experiences with recovering from the Whipple and what helped them get through?

NEGU23

FB page

There is a Facebook page called, "Whipple Surgery Survivor Group" that has 6,000+ members. I think it would be very helpful to your friend.

rebelwhg1

Hi Jennifer

it is very hard after a whipple surgery, with the pain and sickness.  it took me over a year just to be able to get around good. its been over 7 years now and doing real good considering. you just have to think possitive and alot of praying.. at times the first couple years it made me feel like giving up but everyone said to keep fighting and with support from friends and family i did and i'm glad i did. main thing is to maintain your weight, that was the hardest part for me as i lost 65 pounds and ended up with fluid in my stomach and had to get drained a few times. but tell your friend to never give up no matter what, she can fight this..

Oneshot

Bump

Bump

Yukio1

Weight Loss

This is probably the worst aspect of the Whipple and the subsequent recovery.  I have lost a ton of weight and have had damn few days of solid bowel movements.  Creon works if taken thirty minutes previous to ingestion of food.  But gaining weight?  Forget it.l

Oneshot

Yukio1 said:

Weight Loss

This is probably the worst aspect of the Whipple and the subsequent recovery.  I have lost a ton of weight and have had damn few days of solid bowel movements.  Creon works if taken thirty minutes previous to ingestion of food.  But gaining weight?  Forget it.l

Weight Gain

Yikio1,

 Weight gain/loss can be  tough problem(s) for sure. The pancreatic cancer itself causes all sorts of reasons for weight loss. That being said, getting back weight after the Whipple was a tough one for me to do also.  In my case . I was starting more follow up chemo a month afterwards.  While I'm not sure what all you had removed or repaired.  So I'll explain what they took out of me during my Whipple. Then tell you what I did to gain weight back. If  I remember correctly . They removed 1/3 of my pancrease, 1/2 my stomach,gall bladder, almost 2ft. of small intestine,17 lymphnodes and I think somthing else I cannot recall. But, that was 10 yrs. ago.   

The nutritionist and oncologist told me to eat whatever my stomach would allow me to keep down. With the exception of salads and to be warry of strawberries . Due to the small seeds. I eat them now both with no issues. except for Iceburg lettuce.  But, it was a VERY LONG and SLOW process for me. I drank a lot of Chocolate flavored BOOST at first. Not always keeping it down either! It took well over a year in my case to eat and keep down much of anything! No matter how little the amount I had swallowed. I finally found something that I could eat and keep down and I found it quite by accident. My wife knew I like thin mint Girl Scout cookies so she bought me a box. (I was pretty much bed ridden at the time). I was able to eat two of them (2 cookies, not boxes) and drink a little bit of grape juice.  To everyone's surprize. I kept it all down!  Needless to say she went back and bought them out and had the mom of the Girl Scout get any more she could find!   We had 72 boxes of thin mints in our house!  I will say I did try eating other things but, most of the time the other things came back up or I could only (possibly) eat one small bite of something else without it coming back up.  So, believe it or not. Those thin mint cookies, grape juice and boost were my main food intake for quite some time! Eventually I could eat more than two at a time. I can safely say I lived off those for at least a month!   I will tell you one of my ( and I figure everyone who has had a Whipple with some organs removed) the lack of eating much due to the cancer and surgery. The stomach and intestines have to get used to getting much of anything in them again and not reacting violently.  In my case for months before surgery. I literally survived off a feeding tube in my intestine. Thus bypassing my stomach. So not counting the surgery my stomach and anything in the line after it were not ready for normal food intake.  It took a long time for my organs to get adjusted to the shock of the surgery and even settle back into thier normal places. Due to the cutting and re-attaching alone. I figure! Not to mention chemo after and not eating anything besides what a feeding tube put inside of me for months before.   I didn't see what all your Whipple proceedure involved is why I mentioned some of what I experienced.  So don't give up trying to gain weight. Just know it can take a longer than any of us want or expect!

My nutritionist informed me that guacamole put on weight better than anything !  Now, I wasn't a big fan of guacamole but, I learned to eat it and it did slowly put weight back on.  Here I am now. Less than 2 months away from my Whipple being 10 yrs. ago. I can pretty much eat what doesn't try to bite me first and weigh 20 pounds more than I ever had in my life!  There are some exceptions though.  I can eat pork products but, very little at any meal . I found this out like all other foods. By trial and error.  I wish I could tell you it's all cut and dried on finding what you can and can't eat as well as how much you might be able to eat and how soon it gets back to something you can call normal. <--- I think we each find a new spot we accept as our new normal when it comes to eating and how much.  Myself, I had very small portions for a while before getting back up to what might be considered a kids meal even.  Still to this day . I have learned to notice and make myself stop eating well before I get to that  "I THINK I HAVE ENOUGH ROOM FOR MAYBE A COUPLE OF MORE BITES" feeling.  I stop well before I get there !  This saves me a ton of other problems with extreme pain and keeping food down.

As far as the Creon. While I'm not sure what the unit count is on your capsules are or the amount you take with you meals are. I do understand the frustration with the normal bowel movements.  Hopefully your oncologist is or has figured out your best dosage.  I have learned to accept not knowing what my bowels are going to do. Well, I guess as much as a person can accept this.  Some days, I just accept the fact I will not be going away from the house. As far as being solid ...... Well , I try to make light of it with my oncologist. When asked " How are your bowel movements?"  My answer "Well doc. When I go to the bathroom,it's just a crapshoot! I never know what to expect!"

But, with what I've been  blessed enough to survive. Even with all the major and minor issues I have now. I see it as a pretty good trade off! 

 If my experiences can help answer any questions you might have. Let me know.

Take Care and GOD BLESS,

Oneshot

Yukio1

Oneshot said:

Weight Gain

Yikio1,

 Weight gain/loss can be  tough problem(s) for sure. The pancreatic cancer itself causes all sorts of reasons for weight loss. That being said, getting back weight after the Whipple was a tough one for me to do also.  In my case . I was starting more follow up chemo a month afterwards.  While I'm not sure what all you had removed or repaired.  So I'll explain what they took out of me during my Whipple. Then tell you what I did to gain weight back. If  I remember correctly . They removed 1/3 of my pancrease, 1/2 my stomach,gall bladder, almost 2ft. of small intestine,17 lymphnodes and I think somthing else I cannot recall. But, that was 10 yrs. ago.   

The nutritionist and oncologist told me to eat whatever my stomach would allow me to keep down. With the exception of salads and to be warry of strawberries . Due to the small seeds. I eat them now both with no issues. except for Iceburg lettuce.  But, it was a VERY LONG and SLOW process for me. I drank a lot of Chocolate flavored BOOST at first. Not always keeping it down either! It took well over a year in my case to eat and keep down much of anything! No matter how little the amount I had swallowed. I finally found something that I could eat and keep down and I found it quite by accident. My wife knew I like thin mint Girl Scout cookies so she bought me a box. (I was pretty much bed ridden at the time). I was able to eat two of them (2 cookies, not boxes) and drink a little bit of grape juice.  To everyone's surprize. I kept it all down!  Needless to say she went back and bought them out and had the mom of the Girl Scout get any more she could find!   We had 72 boxes of thin mints in our house!  I will say I did try eating other things but, most of the time the other things came back up or I could only (possibly) eat one small bite of something else without it coming back up.  So, believe it or not. Those thin mint cookies, grape juice and boost were my main food intake for quite some time! Eventually I could eat more than two at a time. I can safely say I lived off those for at least a month!   I will tell you one of my ( and I figure everyone who has had a Whipple with some organs removed) the lack of eating much due to the cancer and surgery. The stomach and intestines have to get used to getting much of anything in them again and not reacting violently.  In my case for months before surgery. I literally survived off a feeding tube in my intestine. Thus bypassing my stomach. So not counting the surgery my stomach and anything in the line after it were not ready for normal food intake.  It took a long time for my organs to get adjusted to the shock of the surgery and even settle back into thier normal places. Due to the cutting and re-attaching alone. I figure! Not to mention chemo after and not eating anything besides what a feeding tube put inside of me for months before.   I didn't see what all your Whipple proceedure involved is why I mentioned some of what I experienced.  So don't give up trying to gain weight. Just know it can take a longer than any of us want or expect!

My nutritionist informed me that guacamole put on weight better than anything !  Now, I wasn't a big fan of guacamole but, I learned to eat it and it did slowly put weight back on.  Here I am now. Less than 2 months away from my Whipple being 10 yrs. ago. I can pretty much eat what doesn't try to bite me first and weigh 20 pounds more than I ever had in my life!  There are some exceptions though.  I can eat pork products but, very little at any meal . I found this out like all other foods. By trial and error.  I wish I could tell you it's all cut and dried on finding what you can and can't eat as well as how much you might be able to eat and how soon it gets back to something you can call normal. <--- I think we each find a new spot we accept as our new normal when it comes to eating and how much.  Myself, I had very small portions for a while before getting back up to what might be considered a kids meal even.  Still to this day . I have learned to notice and make myself stop eating well before I get to that  "I THINK I HAVE ENOUGH ROOM FOR MAYBE A COUPLE OF MORE BITES" feeling.  I stop well before I get there !  This saves me a ton of other problems with extreme pain and keeping food down.

As far as the Creon. While I'm not sure what the unit count is on your capsules are or the amount you take with you meals are. I do understand the frustration with the normal bowel movements.  Hopefully your oncologist is or has figured out your best dosage.  I have learned to accept not knowing what my bowels are going to do. Well, I guess as much as a person can accept this.  Some days, I just accept the fact I will not be going away from the house. As far as being solid ...... Well , I try to make light of it with my oncologist. When asked " How are your bowel movements?"  My answer "Well doc. When I go to the bathroom,it's just a crapshoot! I never know what to expect!"

But, with what I've been  blessed enough to survive. Even with all the major and minor issues I have now. I see it as a pretty good trade off! 

 If my experiences can help answer any questions you might have. Let me know.

Take Care and GOD BLESS,

Oneshot

Thanks.  I mean it.  Dealing

Thanks.  I mean it.  Dealing with this is a lonely task.  No matter who you have in your life, it is still just you that bears the burden of the eating and defecating and all the stuff in between.  I get what you mean about trial and error.  And man!  Have I made some errors.  I found that refried beans are a no go at this point and yesterday I had Eggs Benedict for the first time and the Hollandaise sauce just about killed me!  But that reaction was also true when I first tried a carne asada burrito or pepperoni pizza.  They damn near killed me but now I can handle it.

About my surgery: they took just enough pancreas to keep me from becoming diabetic (all of this is seventeen months ago) as well as my gall bladder and a mess of intestines.  That is why I now have malabsorption of nutrients but I am a persistent cuss and have now moved on to ice cream before bed.  it is weird but all my bowel movents occur when I wake up.  All day I eat and am good to go with occasional intestinal distress but come late evening or early morning I have some incredible "blow outs!"

Stay in touch,

You seem like an honest, no **** person.

Oneshot

Being Persistent.....

Yukio1,

       Being persistent is a good trait to have while going through or recovering from a battle with pancreatic cancer. Or any other cancer for that matter!  But, it can be very painful.

I'll mention a few things I have learned over time in my dealings with pancreatic cancer and recovery from it. While I might be reinventing the wheel for you. I'm hoping I'm not and you might find a nugget of info from my experience. That might somehow ,someway help make it a little less bumpy of a recovery than mine.

 You have, IMHO, one of the main traites it takes! Being persistent.  

Try to always find a positive in even the worst situations !    I realize this can seem difficult to do sometimes. 

If all else seems to fail.... find the humor in the situation.   I know, now you and anyone else who reads this will think  " WHAT KIND OF DERANGED PERSON IS THIS ONESHOT CHARACTER?"  All I can say is "It worked for me!"  And yes, sometimes that humor was dark!  But it was better than getting upset about sitting on a toilet with a trash can in front of me. Feeling sorry for myself. It got my mind off of the pain and obvious other issues. By thinking about what would my response be if someone knocks on the door and asked "Are you OK?" .... "Yep! Food test 16938-C was no good! Back to the drawing board!"   Depending on the situation and how well the person knew me. Dictated how graphic my response would be.  I found out later on it put most people at ease a little bit also.   There's a lot more to that story but, you get the picture!

As far as food. I'll share some things I found out.

Straws are no good for you at this point!  THEY CAUSE GAS BUBBLES!   Same for CHEWING GUM!   The doctors are right about these two!  While I can drink with a straw. It still has a negative effect on me.  If you read some of my older posts . I've explained my issues in detail. 

You mentioned eggs. A lot of folks have issues with eggs. Myself included! While I eat them more now. I had really bad issues with them at first and quit eating them altogether for some time.  Then once I was eating somewhat back to normal. I tried them again. I found out I can still eat them but my stomach handles scrambled the best. As far as seasoning them. Well, to each their own but, mine are done lightly now days.

I mentioned pork before (since you mentioned pepperoni)   I'm thinking since CREON incorperates pig pancreases. It might have something to do with why ,to this day, I can only handle pork of any kind in very small amounts. Which really sucks! Because I love ham and bacon and such.  I hope anyone who likes anything with pork has better luck!  I did find that I can eat the brand name OLD FOLKS SAUSAGE PATTIES AND LINKS (mild seasoning) with no bad side effects. Oh! pepperoni made from turkey I have found to sit better with me now days than regular.

As far as fish and sea food. I used to eat my weight in it! Post cancer. I seemed to have lost my taste for it. I'm not sure why . I still love the stuff but, it just doesn't excite me the way it did most my life before cancer. While it is still good. It just doesn't taste quite the same.  It darn sure has to be fresh and cooked right! Needless to say raw oysters are out for me now also but, I still eat some mud bugs when in season. Just not to spicy

I tend do stay away from anything that is greasy looking ,smelling, or feeling.  I love deer chilli, if made right and not greasy No bad side effects there. Go figure how that happens!

I eat jalapenos but, not whole ones anymore. Grow my own. No bad side effects there. Other than I do sweat badly while I eat them . This used to not happen! Even if they are not hot. I would have figured if anything. Those would have really bad effects on me. To my surprise no stomach or other issues! 

When I'm hungry I eat. My wife says If she ate like I did. She'd be as big as a barn. But, I eat smaller amounts just several times more than most folks. From the time I get up till just before bed.

For me my seasonings are pretty much light to mild as far as the spicy stuff. I have found out what causes nausea,vomiting for me and pretty much what to stay away from for those ( a majority of the time and a lot of factors there for me). But,  the loose bowels and such. Your guess will be as good as mine!  I will say this. If you are taking pain meds. Take plenty of stool softners and make sure and drink plenty of water.  Loose bowels are one thing but, to be really constipated after a Whipple,hurts more than I can describe.

As far as vitamins ask you oncologist. I take Super B Complex, B-12, C, Multi, Fish Oil and vitamin E.  Also If you start to take any other supplement as time goes by. Let you oncologist know. I have severe fatigue issues and I take one I found that really works for me. The only issue was if taken once a day (per instructions) it caused my liver counts to go off the charts!  Believe me it put a scare into everyone from the dr. on down.  Once he looked at it . He said all ingredients were great for me but dut to what we have had done. It had to much vitamin A in it. So I /we found out all is normal if taken roughly every 3'rd day. With the liver stats looking great.  That's just a heads up for you.

If you think I might be able to give you any insight. just Let me know via post or CSN e-mail.

Take Care and GOD BLESS,

Oneshot