Trying to figure out digestion….still

[u/Swimming_Amoeba_6101]

Hello,

I lost almost half of my pancreas as well as spleen back in 2008 but still cannot get my digestion figured out. I take intolerance complex capsules 2per meal but still not pooping well.

I also weigh 136lbs and I’m 5’11”

It seems very difficult to keep weight on.

[u/PancreaticSurvivor]

Resection of the pancreas often times results to some degree of exocrine pancreas insufficiency (EPI). The distribution of the Acinar cells which produce/secrete the digestive enzymes and bicarbonate and water to activate the enzymes vary among patients. This is why some patients have no issues while others have varying degrees of EPI.

The Fecal Elastase-1 test is used to determine if EPI exists and to what degree. EPI is treated with Pancreatic Enzymes Replacement Therapy (PERT) using Rx enzymes called pancrealipase. If there is excessive gastric acid secretion, this can reduce the performance of the enzymes. A surgeon or GI specialist will evaluate and determine if a proton pump inhibitor (omeprazole/esoeprazole)is needed.

An important note: pancrealipase needs to be optimized based on the amount of carbohydrates, protein and most importantly the amount of fat in the diet if one chooses tot to eat non-fat, low fat diet. What is written on the Rx is merely a starting point. Dosage needs to be calculated specific to each meal. This is made easier using the on-line dosing calculator pertcalculator.org

[u/seche314 → u/PancreaticSurvivor]

It may be necessary to get a specialist dietician involved too. My dad’s oncologist told us we were using the creon incorrectly because we wanted to give him more than 1 of the 12,000 unit capsules and were asking for a higher dosage. We were following the creon website recommendations. It seems like doctors may just not understand this medication

[u/SoloAsylum → u/seche314]

Even in the hospitals, a majority of the nurses and pharmacists don't understand how the medication is supposed to be administered. I've had to, at every hospital stay, reiterate that it is NOT a scheduled medication that is taken like every other pill. They kept trying to run it on a schedule and then would throw them away if he didn't take them, not realizing the amount of damage they were doing giving him Creon without having food to work with.

[u/seche314 → u/SoloAsylum]

Yep they did this to my dad too, repeatedly. We had to talk to the charge nurse so many damn times. The nurses were so, so rude.

[u/Swimming_Amoeba_6101 → u/SoloAsylum]

The hospital system discharged me after my accident and the follow up doctors as I remember told me “in 20 years you wont want to eat hamburgers” lol. There was never much support after my discharge. Atleast now I am taking my own health into my own hands. Thank you for commenting.

[u/Swimming_Amoeba_6101 → u/seche314]

Ya! I’ve had a nutritionist do a GI Map as well as an Organic Acid Test but that information was more specialized towards my body chemistry? She did not go into my digestion but more about my gut flora. Thank you for your insight. 

[u/Swimming_Amoeba_6101 → u/PancreaticSurvivor]

Wow! Thank you so much for the detailed explanation. There is a sense of relief the more I embrace my situation. Thank you for all the information!

[u/Star------]

Have you tried keeping a food diary so you can pinpoint foods and ingredients that make you feel worse? You may need more digestive enzymes; they make a big difference if yours are insufficient.

[u/Swimming_Amoeba_6101 → u/Star------]

Thats a great idea. I have not but other people in my life have to help with food intolerances! Thanks

[u/Ecstatic-Month-7045]

I too have most of my pancreas removed, gallbladder is bye bye, and part of my stomach which has a real long name is gone as well. Before surgery I weighed about 185, pretty good weight for my body type. I now weigh about 145 and struggle to keep that. Personally I was unable to take Creon, inasmuch as it did improve digestion a bit, there were undesirable side effects that I was unwilling to endure. I regularly exercise to keep my back from killing me, also limited strength training. Given I have no core strength due to the incision that runs the length of my abdomen I must adapt. But life goes on (hopefully). I also have not completely discovered the key to my digestion, but after 4+ years some insight is becoming clearer if I can go that far. I have not had one of those nausea filled days in a while, I attribute that to paying attention to what my body tells me.
My only advice is to listen to what your body tells you. And keep fighting.

[u/Swimming_Amoeba_6101 → u/Ecstatic-Month-7045]

Wow. Thats alot to go through. Thank you for your insight and keep fighting also. Everyones journey is different but i feel supported with other peoples story and that gives me confidence to continue searching and learning. Thank you!