Foods after Pancreatectomy/Splenectomy

Posted by flashbackfcr @flashbackfcr, Aug 19, 2022

My husband had a total pancreatectomy/splenectomy and gall bladder removal on 8/11, so he's now a Type1 diabetic (was a Type2 for a couple of years before). He was in the hospital for 6 days. They started him out on clear liquids (1 day), then moved to soft foods for a couple of days and then put him on their "regular" diet. I absolutely understand that he needs to eat whatever he can in very small amounts, but we're definitely struggling. Nothing appeals to him and even eating small amounts causes diarrhea. I'm trying for high quality protein, low fat, low fiber foods. This morning's breakfast was 1/2 hard boiled egg, 1/2 slice cinnamon bread (no raisins), 1/4 banana, and no sugar added cherry juice diluted 50/50 with water. Can anyone offer any suggestions of what foods might be good to offer at this point? He's beginning to stress over the diarrhea because he says he has no warning and many times can't make it to the bathroom 12 feet away. He doesn't move around much, and I'm wondering how to motivate him to do more of that too? I know it will be a LONG road ahead, but today it seems longer than he will tolerate. Any advice or tips would be much appreciated!

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Welcome, @flashbackfcr. Food, digestion issues and recovering from pancreatectomy are things that fellow members @luckyone4321 @wrolsen @beachdog @kay2 @kyaeger @drileymn @buckslayer and @marvinjsturing know about first-hand either as patients themselves or caring for someone living with pancreatic cancer.

While we wait for others to offer tips and support for you and your husband, I think you might find some useful posts in these related discussions:
- Total Pancreatectomy https://connect.mayoclinic.org/discussion/total-pancreatectomy/
– Help…need guidance on eating after whipple https://connect.mayoclinic.org/discussion/help-need-guidance-on-eating-after-whipple/
- Life after Pancreatectomy: How was your recovery? https://connect.mayoclinic.org/discussion/life-after-pancreatectomy/

No warning diarrhea and stressing over it don't go well together do they? Would wearing underwear for fecal incontinence make him feel more comfortable and confident? It could be helpful to reduce the stress and likely a temporary need.

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I would assume a pancrealipase was prescribed to address Pancreas Enzymes Insufficiency (EPI). When the dosage is optimized, it usually ameliorates symptoms of urgency and diarrhea.

There are five Rx brands of pancrealipase- Creon is the most prescribed brand followed by Zenpep, Viokace, Pertzye and Pancreaze. The only similarity between the five is being derived from
Porcine pancreas. The manufacturing process in extracting the enzymes differ as does binders, fillers and coatings of the three enzymes. That affects performance in individual patients. So if a dietitian has already suggested increasing the dose and the issues are not resolving, inquire about evaluating other brands.

Before I was prescribed Creon, I relied on Anti-diarrheal medications such as Lomax, Lomotil and diphenoxylate atropine as Imodium was ineffective for me. Once I was prescribed Creon and determined the correct dosage based on meal type and quantity, the GI tract returned to normal and I gained weight and have been able to easily maintain it.

Here are a few links I’ve found helpful-

Pancreatic Enzymes
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/


https://www.pancan.org/facing-pancreatic-cancer/living-with-pancreatic-cancer/diet-and-nutrition/pancreatic-enzymes/
Controlling Diarrhea
https://www.pancan.org/facing-pancreatic-cancer/living-with-pancreatic-cancer/diet-and-nutrition/diarrhea/
Management of Diarrhea
* Limit or reduce excess fiber and gas forming foods such as beans, whole grains, raw vegetables, and fruit.
* Avoid sweets and foods containing a lot of sugar.
* Increase fluid intake to avoid dehydration.
* Strive for 5-6 small meals of low fiber foods such as applesauce, bananas, white toast, oatmeal, crackers, or a plain baked potato.
* Avoid dairy products other than yogurt containing live cultures called probiotics.
*
Source: https://pearlpoint.org/nutrition-guidelines-following-a-whipple-procedure/

DIET AND NUTRITION
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf

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@flashbackfcr I had my Whipple 8 years ago. I reviewed my notes about my diagnosis and surgery last week. One of my symptoms was diarrhea. My doctor started me on Creon the day he diagnosed my cancer. I currently take 3 Creon 24,000 with each meal and 2 with each snack. If I forget to take even one dose of Creon, I will have diarrhea in 24 hours. As long as I take my Creon, I can eat just about anything I want.

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Without a gall bladder, he can be experiencing bile dumping. Too much bile because it's not getting properly metered by the gall bladder. My wife's gastroenterologist prescribed cholestyramine in addition to the Creon. The cholestyramine binds to bile essentially neutralizing some of the bile and reducing the effect of dumping. Ask if he'd benefit from cholestyramine.

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@flashbackfcr, how are you and your husband doing? Would love an update.

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Thanks for asking. He's not doing very well - he's been re-hospitalized twice for serious GI bleeds. He's on day 8 of the 2nd hospitalization today. Mayo surgeon thinks the problem is solved - they "clipped" a stomach ulcer and put a stent in a narrowed vein coming from the liver. From the most recent endoscopy, the ulcer no longer seems to be bleeding and the bile seems to be freely flowing from the stent placement. However, his hemoglobin remains between 7.5 & 8.5, even after several transfusions. They just gave him another 2 units today, hemoglobin is at 10.1 now. If it trends downward again, they'll repeat the endoscopy/colonoscopy procedures looking for the cause. The continuous diarrhea hasn't let up, but it's looking more like stool than just frank red blood now. The many "procedures" he's had while hospitalized have left him weak and with lots of muscle wasting since he's been NPO for so long. Hoping the upcoming week will bring better things!!!

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@flashbackfcr

Thanks for asking. He's not doing very well - he's been re-hospitalized twice for serious GI bleeds. He's on day 8 of the 2nd hospitalization today. Mayo surgeon thinks the problem is solved - they "clipped" a stomach ulcer and put a stent in a narrowed vein coming from the liver. From the most recent endoscopy, the ulcer no longer seems to be bleeding and the bile seems to be freely flowing from the stent placement. However, his hemoglobin remains between 7.5 & 8.5, even after several transfusions. They just gave him another 2 units today, hemoglobin is at 10.1 now. If it trends downward again, they'll repeat the endoscopy/colonoscopy procedures looking for the cause. The continuous diarrhea hasn't let up, but it's looking more like stool than just frank red blood now. The many "procedures" he's had while hospitalized have left him weak and with lots of muscle wasting since he's been NPO for so long. Hoping the upcoming week will bring better things!!!

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Fingers crossed. I'll be thinking of you both and hoping for that the clip resolves the issues. Keep up posted.

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@marvinjsturing

@flashbackfcr I had my Whipple 8 years ago. I reviewed my notes about my diagnosis and surgery last week. One of my symptoms was diarrhea. My doctor started me on Creon the day he diagnosed my cancer. I currently take 3 Creon 24,000 with each meal and 2 with each snack. If I forget to take even one dose of Creon, I will have diarrhea in 24 hours. As long as I take my Creon, I can eat just about anything I want.

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Hello & good day. Hubby had lap distal panc & spleen on the 6 Sept. and on regular diet. A few weeks after, he was put on 25,000 creon 3x a day but he's been getting abdo pain @ times esp when he doesn't snack or pass meal times. How long can you go on it? and should Dr lower its dose?

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Is he taking creon before he eats? I ate chicken noodle soup to start and egg whites and toast. Couldn’t eat much in the beginning but it gets better as time go by.

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@c2pricorn66

Hello & good day. Hubby had lap distal panc & spleen on the 6 Sept. and on regular diet. A few weeks after, he was put on 25,000 creon 3x a day but he's been getting abdo pain @ times esp when he doesn't snack or pass meal times. How long can you go on it? and should Dr lower its dose?

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I took 36,000 3x per day for the first 8 mos. Then took papaya pills when creon became unaffordable ($2500 per bottle). I didn’t experience diarrhea but did experience pain if I didn’t take it before eating. After taking papaya pills I found out I didn’t need to take those either and now I take nothing. However due to my now diabetes type 1 situation I’m careful with what I eat which is mainly low carb and low sugar. Maybe low carb and sugar diet would help?

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