Digestive issues and pancreatic cancer

Hello @kay2 , my wife is in a similar situation. She had a distal pancreatectomy in February 2020 at Johns Hopkins after 9 folfironox treatments and 5 days of SBRT photon radiation. At the same time as the pancreatectomy, they took the spleen, Gaul bladder, one adrenal gland and over 20 lymph nodes. Thankfully all were clear of active cancer. You can imagine that they also did some major re-routing of ducts. She lost 25lbs in 3 weeks and has had chronic diarrhea and severe gas pain ever since.

She uses Creon regularly and is still experimenting with timing and dosage every few weeks with the guidance of a nutritionist. The creon seems to have no bearing on the diarrhea. A few months ago, based on our research and request, her oncologist prescribed cholestyramine. The purpose of the cholestyramine is to sequestrate bile which is passing unregulated into the intestines due to the missing Gaul bladder and duct changes. Timing is critical. She recently started taking it 2x per day, 30 minutes before eating and it has reduced the bouts of diarrhea. Not saying that this is a cure, it just seems to help so far. We're told to be patient after such radical surgery the organs can take a year to recover.

Her gastroenterologist is ordering a SIBO test to determine if her small intestine has a bacterial overgrowth from the large intestine, another possible side effect of the surgical trauma to her system and possible cause of diarrhea.

Good luck in your recovery.

My wife was diagnosed in June 2015, head of the pancreas. After Gemcitibine/abraxan she was able to have Whipple surgery in December 2015. Has taken Creon before each meal and seems to work.Was all clean until July of 2018, CT scan showed a couple of small spots on the lungs. After 5 fu etc. radiation and gemzar as well as Xeloda her tumors show stable but Marker are slowly increasing. Had a biopsy and samples are being sent to be profiled, waiting for results. Have appointment with radiologist this week. She feels fine when not on chemo and not any digestive issues. marker are 550. Increasing each of the last 3 months. Very concerning

Thank you for your informative reply. I do want to tell your wife that it did take at least a year after surgery before I was my self.
Good luck on your journey.

Thank you for responding. I find it encouraging that your wife has survived 5 years. We get such grim diagnosis going into this.
Sorry she may have new tumors. I will pray for her to have strength and courage as she moves forward.

Thank you, we are hoping to receive effective data from the profiling. We also stay in close touch with the Pancan network
Avery good and supportive organization. A wealth of information on Pancreatic Cancer

I agree

Hi @kay2 @charliegolfrep and @beachdog, you may also be interested in this related discussion:
- Pancreatic enzyme replacement https://connect.mayoclinic.org/discussion/pancreatic-enzyme-replacement/

All, my husband had the Whipple in April 2020 and immediately gained back 20 of the 70 pounds he lost through the diagnosis and treatment program. He has struggled since the surgery to control very loose stools and in the past two months, developed a partial blockage in his colon, which was relieved with a stent placement (the new problem then is trying to control fecal incontinence but that's another matter). My inquiry today is looking for any and all advice on how to put weight back on! He has a good appetite and eats everything but it just doesn't stick, he has no fat on his body at all and it's depressing. Has taken Creon since the Whipple with a brief detour to ZenPep with no improvement so back on Creon. Docs and nutritionists have him on Immodium and Benefiber for the diahrrea but told us that sugar contributes to this problem, so we have to back off on that for a weight gain solution. Butters, cheeses, gravies, mayo, etc. - none of it seems to help him put weight back on. We do daily Ensures with high calorie content but not gaining ground. Has anyone with a Whipple ane resulting digestive/weight gain issues found something that works for you? Thanks in advance!

@buckslayer sorry to hear about your husband. My wife had an Appleby as well as other organs removed including the gallbladder. You don't mention whether your husband had his gallbladder removed. The loose stools/chronic diarrhea and weight loss have all been issues for my wife since her surgery 1 year ago. Unfortunately, I can't say that we have a remedy. We worked with a nutritionist to get coaching on food selection but that wasn't as helpful as we hoped since she already has good dietary habits, but try it if you haven't already. We have also seen a gastroenterologist to rule out whether blockages in the rerouted ducts were an issue. The most likely issue for my wife was that bile was uncontrollably dumped. She now takes cholestyramine to help limit the bile but it's only marginally effective. It can take a long time to gain weight while all this is going on so look for small victories. Has his weight stabilized yet? Good luck and God bless you both.

I should have mentioned also, that the dietary supplement shakes don't always work. Everyone wanted my wife to use them and we even found one that was mostly "clean" (Enu). Most of the shakes are filled with chemicals AND sugar, lots of it. While she was supplementing with shakes only once per day, the diarrhea escalated. She stopped the shakes and things improved slightly. The docs unfortunately mean well but the dietary aftercare isn't something they seem to know much about.