Spasms after Whipple

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I am a non cancerous person that underwent a full open whipple in July 2024 (almost 2 years ago). To this day, I still get spasms a few times a month, generally I have come to learn that these spasms lead to what I have come to refer to as an "episode" or an "attack" as generally, after feeling the spasm, I know that I am going to have a greater abdominal issue that usually brings me to the ground in pain and loss of breath. These episodes generally last about 3 to 4 minutes, then I feel the "trauma" from the episode for generally an hour or so. These episodes are mostly manageable, but I have a few from time to time that really knock me out for a bit....

I have had the spasms, like you, but I never have light ones since my Whipple surgery. All build up to the same intensity and last about a minute or two, which may not sound long but it is very painful. I have not seen any information as to the cause, but having a Whipple surgery is the common factor for those who have these spasms.

@sara53 Thank you, for your feedback! I suppose there are too many variables to identify their root cause, additionally every body may react differently post Whipple. As bad as the spasms feel when having one, they don't appear to be life threatening.

@luke333 After I had the Whipple procedure, I experienced painful GI cramping. It was being triggered my my meals as I had exocrine pancreas insufficiency (EPI) and was never prescribed an Rx pancrealipase like Creon or Zenpep.

Once I started Creon, the painful episodes of cramping ceased immediately. Because there was an insufficiency of digestive enzymes, food was fermenting in the intestine producing large amounts of gas. The gas pockets were trapped by packets of stool and caused expansion of the intestine wall triggering nerve receptors.

Never had another painful episode since starting Creon over 5 years ago.

@carfbuch
I had my non pylorus preserving Whipple 8 years ago for pre cancerous, but still benign, adenoma deep in the bile duct. I would get these horrendous spasms after Whipple initially every few weeks but they have gradually increased in frequency and now happening several times a week. This week , I had 2 back to back and had to take 2 bentyl… I also have gastroparesis and having a new study later this month. There is no rhyme or reason to what triggers these…sometimes on an empty stomach , sometimes after a cup of yogurt..sometimes not at all, even after a decent meal. I have very poor appetite but am one if the “ lucky “ ones that keep gaining weight from bloating and constipation, This causes edema in my legs and stomach and pain when walking. I feel blessed to be alive, but live in fear of these debilitating random pains that take my breath away and make me double over, Tired of looking like a parade float ( yeah at least I have a sense of humor yet) Drs have no clue. I have tried Creon which caused massive vomiting …

So sorry, sounds awful.

Have you gone somewhere like the Mayo where different types of doctors can be involved in diagnosing. I am not necessarily a big Mayo fan, but they can offer that to you.

In any case, hold you in my thoughts.