Long term side effects from whipple surgery

Sorry some were auto corrected

Thank you!

My whipple procedure was in response to an islet cell tumor when I was 38 in 2004, with AWESOME Dr. Pitt at IUPUI Medical Center in Indianapolis.  I went on to be pregnant with twins the next year, who were 7 weeks premature but are now beautiful, tall, healthy, redheaded young women.  I, too, have intermittent abdominal cramping that basically hits me every 1-2 months, brought on largely by stress.  I imagine strands of scar tissue blocking the normal movement in the small intestine;  this is supported by the fact that if I just lie down, massage my belly or apply heat to relax the muscles, and keep massaging, I can feel and hear the food move, and the pain passes.  I feel "echos of this for another day or two, but then it goes away.  I have had two incidents that are worth noting:  once, after eating seafood in China, I had horrible cramping with diarrhea with orange oil in it -- not a good sign.  I avoid shellfish and haven't had that issue since.  Secondly, I did develop a bleeding ulcer from the stress of making the set for a school play, so now I try to limit my stress as well.  I take no extra supplements (although I probably will soon, more for menopause than for my pancreas), and I take Miralax daily in my coffee.  I limit, but don't completely avoid, fried or fatty foods, but they don't bother me if I keep my gut moving.  I consider myself extremely lucky.  Good luck to all of you as well. 

I had my whipple surgery followed by chemo about 2.5 years ago (Male, 59yrs at surgery). I lost about 20kg during these interventions and I am not able to gain any weight so far (I look quite emaciated). About 6months after surgery, I developed severe heart palpitation especially in the mornings. A battery of tests were conducted and my heart was ok and no medicine was prescribed. Then I had to research myself and started supplements containing Magnesium and B1. This worked like a magic and I no longer got the issue.

I never faced any pain after the procedure. the only aftereffect I face now is tiredness in the mornings..say once a week.

Initially, I had a problem of infrequent diarrhea. But for last one year, my stomach is well settled. The only food item I avoid is sandwiches that contain butter. I eat everything in small quantity and mostly vegetables and fruits. I take one Creon1000 tablet a day with lunch. I walk for about 8kms everyday and I feel it is important to keep our body mobile. It is important to be patient and give our body a chance to heal itself. 

Wish you all the best.

i had mine a month ago n now when i bend over i throw up plus gas heart burn

Hi Michael, 

I was diagnosed with resectable pancreatic cancer in March of this year, had to be my own advocate and by May 8th, 2024 I was having Robotic Whipple surgery at UCLA. Deducted 1/2 of my pancreas and removed 22 lymph nodes of which “1” was positive, which meant it had traveled and I was told the average life expectancy was about 2.5yrs but if I made it to 5yrs it would be considered “cure”. I’m not allowing my Dr at UCLA (whom I greatly respect) to dictate my life, Gods got that one in the bag for me. I’m back home in far northern Cali (unfortunately LOL) I am also dealing with all the GI symptoms but their manageable… what else do you do?!

I guess my question for you is were you diagnosed with cancer and if so what stage? I am in awe that your Whipple was over 15yrs ago! So happy for you! 

Hope you’re doing well, 

Hi, BlessedGranny

1. i hope you are really blessed and I wish you all the best!
2. My husband has to make a decision about Whipple surgery and I would appreciate more information about the surgery if you are able to share it. 
   thanks

Hi. It's a long time ago now, but I had Whipples surgery in 2001 at the age of 32 and I'm still here! My condition was a benign tumour, but there's no doubt I wouldn't have survived much longer without the surgery. I was more debilitated than I knew before I had the surgery, and I think that contributed to it taking me a long time to get over it. That said, I was determined to make the most of still being here, and I made slow upward progress over a long time. I kind of had to relearn what I could tolerate eating after the surgery. I needed enzyme replacement therapy, but I didn't get onto the right thing at the right dose for over a year. If I had my time again, I would know not to settle with having poor digestive function after the surgery and to keep trying to get the required enzyme dose right. Eventually I was on 120,000 units of creon with a main meal, which was a lot more than what I started with!! 

In terms of the operation, I was in hospital for a good while, but I just held onto the fact that each day was taking me one day closer to feeling better and being able to leave. I had to take it gently for several months afterwards, in order to build strength and energy, and for healing of the scar (which can be large or small these days, but when I had it, it was big). My tips are:

1 Eat simple food and build up gradually. Clear nutricious soups and grilled white fish, mashed potato and parsley sauce were good options to begin with.

2 If the tummy isn't settling, use enzyme replacement, and adjust the dose until you are absorbing the food ok.

3 After about 18 months (because I didn't find out about it sooner), I started yoga, which has been wonderful for gently improving my ability to stretch and move naturally without the scar pulling, as well as being something I could do gently and rest in between as I needed. The type of yoga I do is Iyengar, which is very gentle and precise and you can use props.

4 I had episodes of terrible cramping, often at night. I found that, though it wasn't my instinct to do so, the best thing was to if I felt it coming on, was to get up and walk around gently. That helped it to pass.

Sounds as if you and your husband have some big decisions to make, and I wish you all the very best with it.

Hello,

 My father is 80 year old 5 months post whipple and has been throwing up once daily since the surgery. Surgeon has put him on reglan, zofran, protonix, pepcid, octreotide all with no relief. The vomiting always occurs in the middle of the night after he has been sedentary for a while. Has anyone experience anything similar and have any advice? I ask the surgeon about pancreatic enzyme replacement and she said since he doesn't have diarrhea that he did not need it. 

That's so difficult. Hope it improves soon. I don't have the same experience. I did have some daytime vomiting a few weeks after surgery, and had a barium swallow to check it out. There was inflammation at the join of the intestine and things just couldn't get through properly, so I went back onto the fortisip to have nutrition that could get past the inflammation point until it settled. I was very careful to have bland foods too, so as to reduce agravation to the healing tissue. I did sleep at a slope angle for months, because it was more comfortable than being horizontal. I've needed antacids ever since the surgery, and my surgeon told me to take them for life. I'm on famotidine. None of this may be relevant for your Dad, but I thought it was worth sharing in case.