Long term side effects from whipple surgery

I'm almost 6 years post Whipple surgery and struggling daily with nausea, dumping syndrome, pain in lower left abdomen daily. I take Creon with each meal, I get anxious about eating out and if I do eat out I usually dash straight home afterwards, my social life as changed dramatically, I usually take imodium when I go out to avoid any embarrassing mishaps, I was told by my surgeon this was a life saving life changing surgery, I accept the life changing, I'm still here with my family.

Ditto I'm almost 6 years post Whipple surgery and can relate to everything you mentioned. 

I am over 20 years post whipple, and it has been a huge learning curve! I had all the things you have mentioned, plus swings of low blood sugar, but i have overcome them, most of the time. Over time, I worked out that I needed to totally change what and how I ate. No cereal and toast type breakfast - I need higher protein, low sugar foods, and not too oily or fatty either. I've even been trhough periods where cooked veg is easier to digest than raw, though i can manage both now.

A decent breakfast for me these days is a mackerel salad!! Or scrambled eggs on toast - but bread is brown, rice and pasta are brown as often as possible. I had to adjust my enzyme intake enormously. I ended up.with 120,000 units of creon with a main meal, having started on 20,000! I need more if a meal is more oily. So it's worth seeing whether adjusting the dose or changing the medication to a different enzyme therapy makes a difference. I was on pancrex first, and that was hopeless for me I take famotidine to help with the acid levels in the stomach, and I think that also reduces nausea. I ended up seeing a gastroenterologist for while (not my surgeon, as he ran out of ideas pretty quickly). But most of it my husband and I worked out between us. Nobody else is living your experience after all! Regarding the internal scarring, I started yoga after a couple of years and that was wonderful for gently stretching the scar tissue. By now I have no mobility issues, though I did at first, and I am no longer woken with pain at night. The type of yoga is important though - I do iyengar yoga which uses lots of supporting equipment and this is essential. And it is a very precise type of yoga so the teachers are trained to be able to really see what positions will work for you. Good luck with experimenting. 

My husband has suffered from small bowel blockages for the past 8 years, which were caused by adhesions.  We sought out help from having to undergo another surgery that would of let to a colostomy bag.  We found Clear Passage out of Gainesville, FL.  They taught me how to basically unbind the adhesions or to "get rid" of them with myofascial therapy. The therapy was expensive, however, it was a week long.  BUT it has managed to keep him out of the hospital for bowel obstructions.  He was diagnosed with pancreatic cancer last Easter, and had the Whipple surgery in January.  The myofascial release has been a big help with managing the adhesions after such a massive surgery.  The myofascial release is definitely something to look into.  It is not difficult for a partner to help you with. And will definitely help alleviate a lot of those reoccurring issues resulting from the whipple surgery.

I had a whipples 2 years ago and the most worrying side effect is the foul wind. I cannot say that I get any abdominal pain as well. My problem is that I stopped taking Creon. I will start back on a higher dose with meals after reading  your post.

We ae so fortunate here in Austalia, we get 4 large bottles of Creon 35,000 units for only $7. as it is heavily subsidised by our Government for Concession card holders and seniors.

Hi all

i had the Whipple in August.  In the end it turned into a total pancreatectomy and splenectomy with vein resection due to the position and size of the tumour.  Since then I have had diarrhoea every day, reducing in frequency as time has gone by.  I was referred to gastroenterology in October and I’m still waiting for an appointment so I have no idea what the issue is.  I take a lot of Creon and 16mg of loperamide a day plus penicillin and anticoagulants due to having my spleen removed.

three weeks ago I had a UTI and needed different antibiotics.  Since then I’ve had abdominal and back pain, bloating, gas and feeling full.  I’ve reduced loperamide because I’m now sometimes “ bunged up”.  I’m hoping it’s the antibiotics that have caused a change?

I had my 6 month CT scan last week so it may show what’s happening?  I was pinning my hopes on the gastroenterologist but reading these comments I’m not convinced now.

otherwise I’m enjoying life, exercising, going out and successfully managing type 3c diabetes and being immunocompromised.

I’m interested in the comments about low FODMAP and will speak to my dietitian about it.

thank you all for your thoughts, experiences and suggestions.  They have been really helpful.