Spasms after Whipple

@rashida @nortonrene I have not had any issues with gastro esophageal reflux post Whipple in 2024 and when I had my spasms not much relieved them. I just tried to relax, take deep breaths and wait them out. Some were much stronger than others, that literally took my breath away. It has been three months since my last surgery due to an intestinal blockage from the Whipple scar tissue, so it makes me think that possibly the scar tissue may be the root cause of the spasm, but time will tell. The digestive system is complex with many moving parts! Will keep the "Whipple Spasm-ists" posted : )

@sara53 Scanxiety gets me every time. I try to ignore it, and I am better at managing it after a few years of getting scans, but I still get it. Walking really helps me. It's getting rather hot for me to walk in the Arizona desert. I guess that you are in a colder climate?

@tomrennie
Scanxiety is a great term for it. It is such a relief when the results are in so I know where I stand. Yes, I am farther north than you as I am in Michigan, near Grand Rapids. I may be wearing my winter coat to watch the grands at soccer today, as I did last week. The wind has a bite to it.

I am almost eight years out and i still have those spasms on occasion. Usually milder, but once in a while it will be one of those big ones.
No clue why they happen except i guess that the stomach just preferred its old set up and needs to make that clear now and again. I am just happy it all works as well as it does.

@grandmahiker adhesions perhaps …?

@grandmahiker Indeed, since the digestive system consists of many parts working together, hard to identify which organ gets the spasms going. One thing that I have noticed, is that my spasm always have happened in the PM and never in the AM. Another interesting observation.

@grandmahiker So wonderful to hear you’re 8 years post-Whipple! So sorry about your spasms.

You mentioned they usually happen during pm hours. Lying down, standing, or both? Soon after you’ve eaten or more random? Any connection with certain foods?

I searched for spasms after Whipple, but only found the standard post Whipple advice: small meals only, digestive enzymes if needed, staying hydrated with water, walking.

I’m scheduled for the Whipple next week. Diagnosed 3 weeks ago, 1.6 cm mass at head of pancreas, ADPC. I’m fortunate to have found a well-versed surgeon in the Whipple procedure. I’m hoping he can preserve my pylorus, but no discussion of this goal.

My dad had stage 4 PC, neoadjuvant chemoradiation that almost prevented the surgery, but had the Whipple after a 3 month delay of neoadjuvant. The surgery gave him 9 to 12 months. The chemoradiation did nothing helpful. It did not “shrink the tumor”. Since I was not a doctor, no one listened to me about published info re PC being unlikely to respond to chemo, unlike breast cancers. To stay sane, I must now think at his stage 4 diagnosis w/vein involvement, it had likely metastasized already (although imaging didn’t show this) and had already spread to lymph nodes prior to enduring 3 months of ineffective chemoradiation which delayed his surgery.

I’m uplifted to learn your story, and thank you so much for sharing:)

I am not the one who has them in the PM. In fact, would say they are more likely to be earlier in the day.
And in more thinking about it, should also have mentioned that they often if not usually are associated with subsequent lower GI activity, either solid or air.
FYI, i take Creon and have almost since the beginning when we found that my enzyme production was less than 10% of normal.
And chemo worked well for me pre and post surgery.

The best on your coming Whipple. Sorry to hear about your dad. I think his experience was more the norm than ours.

@chuff333 Hi and welcome to Mayo Connect. I am sorry to hear about your father and recent diagnosis. I am glad that you found a surgeon that is well versed in the Whipple procedure. That has to be comforting? Where can I find the published information that states pancreatic cancer doesn't respond to chemo? I am very interested in reading it. Thank you.

Hi there.

I had my Whipple in 2022, and have had these spasms frequently since then. Over time, they became worse in pain and began to last hours. Turns out, I had a major narrowing in my bile duct that could only be found through ERCP. I’ve had a revision since then to redo my bile duct connection and clean out any scar tissue. The pain subsided for a couple of months, but eventually the scar tissue grew back. I’ve had stents in and out since then, which also cause some pain since my nerves are so bad from the procedures, but they do provide some relief. Has anyone else had this issue?