whipple survivor pain, ibs?,nausea

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whipple survivor pain, ibs?,nausea

by ozzy969 on Tue Aug 18, 2015 06:18 PM

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i survived the whipple hooray didn't know my life was going to be so painful after.  with the cancer i had a dianosis with this i have nothing. nobody knows whats wrong or how to help.  i can't eat most of the time when i do the pain is terrible even if i don't eat most of the time i have bad pain in my stomache. nausea all the time and diarhea constently ever morning til about 2pm i am going to the bathroom or nauseated.  somedays its 3 times so days its 5 times i need a toilet nearby always. i have tried different diets wrote down what i do eat and nothing pops out as being a trigger.  i feel like i am bearly living.

RE: whipple survivor pain, ibs?,nausea

by AliveInOldeTown on Tue Aug 18, 2015 07:21 PM

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How long ago did you have Whipple surgery?  Are you taking Creon or other prescription strength pancreatic enzymes with meals/snacks?  I found these to be absolutely necessary after surgery to prevent constant abdominal pain (very bad gas) and oily diarrhea after meals or even a snack.  Re. stomach pain on empty stomach:  Are you taking Nexium or similar pump inhibitor drugs?  After time and trial, I found Nexium was the source of persistent stomach pain after surgery. I stopped taking Nexium, pain went away.  I have been so far successful  controlling acid stomach with old fashioned Famotidine.   Some pain medications cause stomach pain as well.  (Advil, Aleve, Motrin, plus many prescription pain meds.)

I'm sorry you are having a really hard time.  Getting food/diet worked out after Whipple Surgery can be a big challenge.  My experience was things worked out well as soon as I got the Creon prescribed and figured out how much I needed to take.  I have been on Creon for over 12 years now, and accepted long ago I would have to take it for the rest of my life.  I hope you can find help soon.

RE: whipple survivor pain, ibs?,nausea

by ozzy969 on Tue Aug 18, 2015 07:58 PM

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my surgery was 3 years ago my doctor doesn't have any knowledge about pc.  my surgeon is in another province so not available my systom have starting getting real bad i don't take anything prescription but i tried taking probiotics. my doc says ibs but this seems worse than that. it never lets up.he sent me to dietician who said i should blend all foods and not to eat solid anymore since my body can't handle it???i know alot of this advice seems to be crazy i am lost and confused.

RE: whipple survivor pain, ibs?,nausea

by AliveInOldeTown on Tue Aug 18, 2015 09:12 PM

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I am sorry you are having all the problems, with so little support.  If you can get your doctor to just go along and prescribe Creon for you to try, it may help you with some of the problems you are having.  From what I have learned over the years, almost all people who have had Whipple surgery will need to take pancreatic enzymes with food.  My surgeon thought at first they had left enough of my pancreas to allow for normal digestion, and to prevent me from developing diabetes.  Wrong on both accounts, but in my case the need for Creon was found pretty quickly.  Since you do not have direct access to the specialists who know about treatment after surgery, maybe you can convince your doctor to let you try Creon.  I hope so.  If yes, there are many threads on the Pancreatic Cancer forum on this site that will help with how/when and how much Creon to take.  There are other brands of pancreatic enzymes available, I am familiar with Creon which is why I mention it.  Probiotics can be beneficial to people who have had Whipple surgery, but they do not replace the digestive enzymes necessary to break down foods for digestion that are no longer being produced in adequate amounts by your pancreas.  I hope you can get some assistance with this from your doctor.  

(Blending foods probably won't help at all, and may make things worse.  The undigested foods in the blended concoctions will travel through your stomach to your intestines more quickly, and can make some of your symptoms worse, and also could cause "dumping syndrome" (blood sugar rises quickly, heat rate increases, cold sweats, dizzy feeling and sometimes also nausea).  I am not a medical person, and just speaking from experience and years of reading of others experiences.) Best wishes for finding some relief from your problems soon.

RE: whipple survivor pain, ibs?,nausea

by ozzy969 on Tue Aug 18, 2015 11:25 PM

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thank you i did write that down i will be seeing my gp soon and will ask for that enzyme. i agree the smoothie or blended food really went through me and made me sicker.  so did a veggie diet wow what pain. bless you in your journey as well

RE: whipple survivor pain, ibs?,nausea

by Dumpling on Wed Aug 19, 2015 08:18 PM

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It wasn't part of my pancreatic cancer, but it was the catalyst for its diagnosis: colitis. Its symptoms, like you are experiencing, are similar to pc's complaints. Get it checked out (ct scan) as it can be deadly, but antibiotics can put a stop to it. Blessings and prayers for your recovery!

RE: whipple survivor pain, ibs?,nausea

by pednursedeb on Wed Aug 19, 2015 09:03 PM

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On Aug 18, 2015 11:25 PM ozzy969 wrote:

thank you i did write that down i will be seeing my gp soon and will ask for that enzyme. i agree the smoothie or blended food really went through me and made me sicker.  so did a veggie diet wow what pain. bless you in your journey as well

See a GI doctor if you can. I started having problems 3 years after my whipple. The GI doctor put me on Zantac and Protonix and that has helped. I've been taking Creon since the surgery. My doctor told me a lot of patients have problems several years after the Whipple. He said it's a different type of acid that is hard to control. I also have a lot of nausea, but I'm back on chemo for lung cancer, so it's hard to know for sure what's causing that, the whipple or the chemo. I do better with small, frequent meals. Hope you can get some help. The creon is expensive if you don't have insurance. I have ordered it from a Canadian pharmacy when I had to. Good luck to you. 

RE: whipple survivor pain, ibs?,nausea

by windawoo02 on Wed Aug 19, 2015 10:09 PM

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On Aug 18, 2015 9:12 PM AliveInOldeTown wrote:

I am sorry you are having all the problems, with so little support.  If you can get your doctor to just go along and prescribe Creon for you to try, it may help you with some of the problems you are having.  From what I have learned over the years, almost all people who have had Whipple surgery will need to take pancreatic enzymes with food.  My surgeon thought at first they had left enough of my pancreas to allow for normal digestion, and to prevent me from developing diabetes.  Wrong on both accounts, but in my case the need for Creon was found pretty quickly.  Since you do not have direct access to the specialists who know about treatment after surgery, maybe you can convince your doctor to let you try Creon.  I hope so.  If yes, there are many threads on the Pancreatic Cancer forum on this site that will help with how/when and how much Creon to take.  There are other brands of pancreatic enzymes available, I am familiar with Creon which is why I mention it.  Probiotics can be beneficial to people who have had Whipple surgery, but they do not replace the digestive enzymes necessary to break down foods for digestion that are no longer being produced in adequate amounts by your pancreas.  I hope you can get some assistance with this from your doctor.  

(Blending foods probably won't help at all, and may make things worse.  The undigested foods in the blended concoctions will travel through your stomach to your intestines more quickly, and can make some of your symptoms worse, and also could cause "dumping syndrome" (blood sugar rises quickly, heat rate increases, cold sweats, dizzy feeling and sometimes also nausea).  I am not a medical person, and just speaking from experience and years of reading of others experiences.) Best wishes for finding some relief from your problems soon.

I agree with AliveinOldeTown about the Creon.  I had the Whipple in 2009 and kept having stomach pain, oily stools, diarrhea, swelling of the feet & legs.  Two years later I ended up in the hospital for several days and they called in a GI doctor.   That's when he put me on Creon and it has helped ever since.  I can really tell if I skip a dose, too.

RE: whipple survivor pain, ibs?,nausea

by ozzy969 on Thu Aug 20, 2015 06:53 PM

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thank you for all that have replied it is nice to hear such heart felt thoughts.  i went to my gp he is really not well informed he didn't prescribe the creon he prescribed pancrelipase more pain meds blood tests, and a stomache ultrsound. back to wait and see

RE: whipple survivor pain, ibs?,nausea

by loutomes on Fri Feb 17, 2017 11:43 PM

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After 4 years on creon , I developed stomach pains and weight loss. Had Scan and Upper Gi procedure---ended up having operation where adhesions ere discovered.(Had operation ) 2 months later pain is gone but I can't get any of the lost 15 lbs, (Actually 25 lbs. from 5 years ago ) back  !!!!Consulted with John Hopkins (did the whipple)---no response on re evaulting my creon consumption !!Not sure where to go next  !!Was told by my recent surgeon,adhesions were the result of my whipple surgery!!!

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