Long term side effects from whipple surgery

Hello Panda 82

I dont have any experience of this but there are a few folk on here who have had a Whipple and im sure they will be along soon.

Squeaky

Hello Panda82:

I had my Whipple 8 years ago and I have had the same problem.  It comes and goes, but I have had terrible abdominal cramps as well.  I even had an ulcer due to the internal scarring and that was very painful as well.  I have not been able to find anything to eradicate the problem, as I believe that the GI I have seen do not have experience with Whipple patients.  Hang on in there, it might get better.  Good luck!

Ceteco, thank you for the sharing and encouragement. Nice to hear more about your experience in last 8 years. Possibly not too many Whipple patients around, not easy to find a GI has experience on it. What medical exam helps to diagnosis the ulcer result from the internal scarring?

I still can't get over diarrhea, particularly worst in morning. Breakfast don't stay in my tummy more than 30 minutes.  It's really painful. Persistent abdominal pain and severe iron deficiency anemia disrupted my works and social life.  What other problems still bother you?  How you manage them?  Hope all things go well.  Pray for you too. 

Dear Panda82:

Thank you for your reply. My life has completely changed after the Whipple.  My social life is null, always worried I am going to have an episode of the dumping while out.  On top of it, I am always passing foul gas, so I am afraid of being near people for this reason. Anti-diarrheal medicine doesn't seem to work.  I make appointments early in the morning so that I can do whatever I need to do prior to eating, but honestly, I only go to the supermarket and to doctor's appointments.  I can eat the same thing every day and respond differently to it every time.  I cannot tell what agrees with me and what doesn't.  

The ulcer was diagnosed by a GI by doing an endoscopy.  I already know how it feels and what medicine to take for it, so I am sure that I have had two more ulcers after being diagnosed the first time.  

Wish I could be more positive, but this is my reality. Going out to eat is a big no-no. I only have breakfast and lunch.  I cut dinner completely so that I don't have to deal with the pain before going to sleep.  If by any chance I am able to keep lunch in my stomach, I will still be burping it at 10 in the evening, which makes falling asleep rather difficult. 

It is a price to pay for being alive.  At least that is the way I look at it.  

Wish you good luck.  Thank you for your prayer.  

You should be taking Creon 25000 capsules with every meal to stop this happening, need to see your consultant urgently .

That is why you carnt eat any think because with out tablets just double up in pain.

Thank you Oldbone, but I have been taking Creon ever since my Whipple operation.  I have also tried Zenzep and Pancreatin.  Check the side effects of Creon.  It is a long list.  

Hi Cetero, thanks for the sharing again.  I fully understand how you feel.  My GI is scheduling the endoscopy, hope he will arrive the correct diagnosis soon.  I have most of the trouble that you described.  I frustrate with eating the same thing everyday but the body response differently, passing out the embarrassing foul gas all the time. Anywhere I go, I have to look for the closest washroom first.  I lie to myself that others would embrace me and keep the social life as much as I could (though not many!).  A positive emotion make me feel better.  

Creon not works on me too. I had it since Whipple operation. It is expensive and I stopped it after a while. It did not make much difference.  I have dumping, hope not going to be diabetes. 

Please consult your GI more often. I wish your condition will improve shortly, and more valuable advice to be shared. 

My husband had the Whipple surgery 3 years ago for an IPMN non-malignant cyst on his pancreas.  He was told that not having the surgery could lead to (80% chance) developing pancreatic cancer.  He chose to go forward with the operation.  He was in the hospital for 5 1/2 days.  And spent several months regaining his strength.  Normal eating took a long time.  He was prescribed Creon.  This is hit and miss and no nutritionists, surgeons, or medical professionals can tell you how much to take.  He started out with the recommended dose of 2 pills with each meal.  He continued to suffer with abdominal pain, diarrhea, and much discomfort.  After much research, I concluded he wasn't taking enough Creon.  He adjusted his dosage.  This was, hit or miss, an experimental process.  I think each person is different, so dosage could vary.

He now eats what he wants, when he wants.  He usually takes 6 Creon for normal meals and up to 8 Creon for fatty meals.  He also adds Beano (2) if the meal consists of a lot of fresh vegetables or beans (as in Mexican food).  He may start a meal with 4 Creon and half way through take another 2-4 depending on fat content.

Creon is very expensive, so I think many people limit their intake based on cost.  Understandable!  My husband is so blessed to receive his Creon from the V.A., as he is a Veteran.  This makes it so affordable for him and he can take the amount he needs without the worry of cost.

He does still experience abdominal pain, without explanation, at times.  A year after his Whipple, he had an operational hernia repair, some of his unexplained pain could be from this.  What is referred to as, mesh pain.  He can't be certain.  But for the most part, he has recovered 100% from the Whipple and works, plays golf, and is enjoying his life. 

I had a full Whipple nearly 4 years ago for a pancreatic Cyst.  The tumor was benign.  I was originally prescribed a prescription pancreatic supplement at 2 pills per meal.  I found out how expensive the pills were once my deductible started on the new year.  I have switched to taking over the counter Ox Bile instead of the prescription (pig bile).  The over the counter medicine cost $.50 a pill instead of the prescription $8.00 pill.  It seems to work just as well.  I also have cut my usage down to one pill a day.  I avoid animal fats as best as I can.  I am still susceptible to their terrible affects.  My diet consists of a lot of vegetables and starch.  I get most of my protein from seafood, nuts and protein bars.  I will have an occasional steak, but it must be a lean cut of meat.

My Whipple was 8/13 and I’m still here too. I did heavy workouts, ran and lifted weights, before and after surgery. Combined with regular doses of “Creon” I’ve had no major side effects. I got back to work, and my life was restored. I’m feeling pretty lucky . I’m playing golf and enjoying my restored life at 79 years.