Has anyone had post Whipple stomach issues ?

I did fine eating whatever I wanted after the pylorus-preserving Whipple, but after the recurrent tumor completely blocked my stomach outlet 2 years later, I had to get a "central line" (feeding tube) installed for TPN (12-hour overnight), and a "G-tube" (gastric venting tube) to relieve pressure and drain my stomach. All I could consume orally after that was liquids and super-soft solids like ice cream that could be drained out via the G-tube.

About 2 months later, on the second attempt, surgeons were able to open my stomach outlet enough to insert a stent. The stent keeps my stomach outlet open all the time, so it's sort of like a pylorus-NON-preserving Whipple now. After 2 months of the GI tract below my stomach being inactive, it took a little while for things to wake up.

I continued with the liquid and soft/blenderized diet for a few weeks, and then advanced to slightly more solid foods gradually. I did (and still do) experience some vomiting. There were times I was not convinced food was actually going down, but tests showed that it was. I was prescribed Reglan (Metoclopramide) to help stimulate the bowels, but didn't need a whole lot of it to get them moving.

I did (and still do) experience some stomach spasms that are occasionally painful, but am now (about 4 months after the stent) am able to eat a good range of foods that I ate before the blockage, but have to be careful. I still have to chew food to a very soft consistency, and try to wash it down with enough fluids so that it won't sit in my stomach and rot. I take Bentyl (Dicyclomine) when needed to manage the spasms, Protonix (Pantoprazole, a PPI) to minimize acid production, and Carafate (Sucralfate) to coat my stomach/intestines and make them less sensitive to food reactions.

Overall, it seems like a lot to manage, but between the ongoing TPN and my ramping up oral consumption, I've gained about 12 pounds since Thanksgiving and feel pretty good outside the chemo days. I do have to be careful to avoid reflux by not eating too close to bedtime, and by sleeping with the head of my bed elevated 6 inches to keep food flowing downhill.

Thanks so much for your reply! Very informative. I am going to rehab tomorrow and hopefully they understand the delicate stomach issues as regards to food and water before stomach wakes up.

One other related thought: I was originally taking some occasional oxycodone for the stomach spasms and stent-related pain. I knew they could occasionally cause constipation, but one my docs informed me that opioids could be especially problematic with a digestive tract that's still trying to wake up. I hope your rehab goes well!

Hey Mark
I’m caught up in the Medicare for profit rehab nightmare. Every place has rejected me because of my TPN nutrition bag. One accepted then changed their mind. What kind of symptoms or sensations (if you remember) does the stomach waking up feel like? I am on a strict water/ice diet, 2 cups of ice every 24 hours. When I go to bathroom bowel is full of green bile floating on top. If I could slowly move towards solid food I could go to the rehab of my choice! Many thanks

I don't really remember specific physical sensations other than the spasms that I described to some people as analogous to "pregnancy contractions," with which I have zero experience, so I was kind of at a loss for words. Some of that may have been ulcer-related due to excess stomach acid retention or side effects of radiation.

Technically I don't think my stomach itself was ever asleep for very long, outside of the surgeries and a few days in the hospital. Since I had the G-tube placed early on, I didn't really have any limits on liquid consumption orally. I drank a lot of bone broth and pretended it was coffee. Sometimes I would thicken it up with a little bit of chicken gravy. Jello and things that would melt into a liquid were fine, as long as they didn't contain a lot of emulsifiers or other thickeners that might clog up the drain tube. Whatever went into my stomach would just stay there until I puked or opened the G-tube valve to let it drain out. Sometimes I would have to suction it out by connecting an empty 60 mL syringe to the 3-way G-tube stopcock valve. With either the suction or letting it drain naturally into its bag, it was pretty nasty brownish-green stuff for several weeks.

I was surprised to be producing any bowel movements at all before my stent, since the TPN only went into an artery. But there is apparently some absorption of fluids into your intestines, and some sloughing off of gunk attached to your intestinal lining. Passing that assured me somewhat that my entire GI tract was not totally asleep or paralyzed. Since you don't have a blockage, it's no surprise that more bile, saliva, and gastric juice is making its way out your back door.

The only real "waking up" was my bowels/intestines below the stomach after the gastric outlet stent was placed, somewhere between 6-8 weeks after the blockage occurred and the venting G-tube was inserted. I was surprised again when I resumed light oral food consumption that the bowel activity didn't pick up substantially. I suspected a disproportionate amount of what I consumed was still going out the G-tube instead of down through and out of my stomach. Lots of diarrhea during that period, or steatorrhea (greasy orange stool) if I consumed fatty foods without taking my Creon enzymes.

At this point, I'm still on TPN (2000 calories/day over a 12-hour delivery), and probably will be the rest of my life. I keep trying, but am not yet able to consume equivalent calories orally without stomach pain. Higher-calories foods like meat (even soft meats like meatballs/meatloaf) feel like they sit in my stomach for a really long time, regardless of how much I chew them and how much fluid I try to wash them down with. That sensation is like a giant gas bubble or balloon inflating in my stomach that won't exit upward or downward, or even outward if I open the G-tube venting valve.

I think you will be able to move to thicker foods before too long, but don't get too aggressive. Remember that comfort foods like ice cream and mashed potatoes with gravy and butter are wet enough to go down easily, but are high in fat. If you forget the enzymes, you may experience diarrhea/steatorrhea, but if you take too many, you may constipate yourself and produce a lot of uncomfortable gas. Be sure to ask if Reglan could/should be part of your "RTO" (return to oral) plan.

Best of luck, and please keep us posted!

--mm

Sorry to hear that you are still on the TPN bag. Your post is extremely helpful and informative. My fear is quality of life when and if my situation progresses towards the removal of the bag. Honestly I would be bummed out to have to deal with it the rest of my life. But it’s out of my control. Your diet suggestions are very welcome.
Many thanks. Your posts mean a lot!!!!

Wife: Whipple surgery mid-December 2023, stage 2b.
Bile pump nearly right away and for an extended time.
TPN for two months.
Then J-tube/G-tube for 6 1/2 months.
Lots of weight lost, weight somewhat stable now, but wife is skin and bones.
Still gets hot pains in lower left moving upward to the middle. They provoke vomiting, no nausea involved.
Her third cancer, after ovarian 21 years ago, breast 11 years ago.

Thanks, Mark. Looking at that photo makes me want to ask if you are in Oregon.

I’m reading this now and it is a old response but I am wondering if you are still having issues with your stomach my brother Frank he went through so many things after his Whipple surgery saying they’re waiting for the stomach to wake up I can give you a lot of information

Hey!
Current status is soft liquid diet. No NG tube. No G tube.
Last night they wanted me to try Ensure protein drink. I tried the clear one and almost threw up 4 hours later. My basic relief system is to eat yogurt, pudding and ice cream, lots of water. Then use the toilet to blast out the green bile that builds up.
Counting calories to see when the TPN bag can be removed.
Any information about similar experiences is very welcome!!!! Many thanks