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kay2 (@kay2)

Digestive issues and pancreatic cancer

Pancreatic Cancer | Last Active: Sep 15, 2022 | Replies (29)

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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.

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Replies to "Hello @kay2 , my wife is in a similar situation. She had a distal pancreatectomy in..."

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.