I have been diagnosed with B12 deficiency two and a half years after my Whipples procedure. Still to have my first injection. I have tingling up my face and lips and a sore tongue. My tummy feels so tight. Don’t know if that’s to do with all the internal work they did when they removed my duodenum and part of pancreas. Also bowels are rubbish. Lots of cramps and loose stools. Never been the same colour since my op either. Also had a knee replacement 6 months ago so another major op.
Feel so tired. Anyone else had a Whipples that can relate to what I’m feeling?
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Maggie29
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Not personally but my aunt had the whipple and the Dr put her immediately on B12 to prevent a deficiency. She passed away last year from old age so she is not a point of contact I can ask.
You may be suffering from detox symptoms after getting B12. You have built up quite a backlog of metabolism that, once you get B12, is like a dam breaking and flooding your system with metabolic byproducts- mainly water and carbon dioxide.
One symptom I get after my weekly cyano jab is a soft stool about six hours after the jab. The gut becomes quite active after getting B12. Maybe it is nerve repair of my vagus nerve (goes straight from the brain to the stomach) sending (or receiving) stronger signals to (from) the gut.
I get a symptom of ravenous hunger after the jab as well but it is an illusion from the stronger signals that my brain is getting. It still feels real and I need to tell myself that I just had breakfast and the hunger is not real.
If you haven’t already, please start yourself a logbook and record all the symptoms (physical as well as neurological) as well as food, drink and meds. If you can assess a severity score to your symptoms you can help sort the ones from the jab (good) from ones from food.
Because of the whipple, your time scales and references will be different from the 24 hours delay in some symptoms due to the time it takes a normal gut to process food.
Are you gluten and dairy free as well?
Are you supplementing with folic acid and daily multivitamins?
The casein protein in dairy is similar to gluten and gives me the same symptoms of tiredness, brain fog and diarrhea as I get from gluten.
Pain is a counterintuitive symptom in B12 deficiency. If you have nerve damage (loss of myrlin sheath) from the deficiency, then when your body gets B12, it starts to repair the myelin sheath.
The signals travelling on the nerve are then stronger (maybe faster as well?) and when they get to the brain they are interpreted as pain until the brain can recalibrate to the stronger signals which takes about three days.
Worry and stress about this pain makes it seem worse and prevents the brain from adjusting to the stronger signals.
The pain seems very real but may only be an illusion so for muscular pain, gentle range of motion exercises help the brain figure out that it needs to adjust. For the face, who knows, pull faces, smile, frown anything to move the skin and muscles under the skin to help trigger repair of the nerve damage as well as to convince yourself (and your brain) that the pain is not real. If you are successful, the pain magically disappears.
If the pain is too severe, then traditional pain meds can help dull the brain while it is recalibrating.
The daily multivitamin is to support metabolism when you get B12. It replace the metals and minerals that are used up by the cells when they kick into high gear when they finally get B12. Same thing for folic acid up to 5 mg max.
The reason you develop a B12 deficiency with the whipple is because the hepatic loop (bile, duodenum, small intestine, illium, portal vein, liver, blood, back to bile) is broken by the operation. B12 is stored in this loop as it is water soluble and the excess passes out the urine and stool. Without a recycling/storage loop, it all passes out of the body.
Im ok with red meat but don’t really eat a lot of it. Veg I love but my bowels don’t like it. Used to love bananas, not anymore. I’m seeing a gastroenterologist this week so I’ll see what he has to say. Thanks for your help
it sounds like you probably have significant problems absorbing nutrients from your food which is scarcely surprising considering the amount of your gut that has been affected by surgery. May be worth talking to a nutritionist about suitable ways of supplementing.
As with pvanderaa's aunt the sensible thing after your surgery would have been to have put you on B12 shots to prevent you becoming B12 deficient.
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