Pancreatic Insufficiency
Posted , 5 users are following.
My Consultant has just confused me by saying my EPi is now mild. If it was mild would i be having all the symptoms and be taking Creon?
0 likes, 10 replies
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Notes on Pancreatic Insufficiency
vedawms sharon2510
Posted
If you are concerned, get a second opinion from a pancreatic specialist (not just a GI).
As for "symptoms", can you explain? Many pancreatic patients feel unrelenting pain, even if they are not having an acute episode.
CREON cannot hurt you, so it's not bad to take it. Even if you have a mild case, if you are losing weight or vitamins, you should keep taking it. Pancreatic insufficiency is a disease progression and will never go away.
sharon2510 vedawms
Posted
My Consultant is a Hepatologist so he knows all about the Pancreas. i used to have yellow oily stools but the Creon has helped with that. I get pain under my left rib after i eat. I can also only eat very small amounts of food before feeling full. I have constant nausea ad well.
Reefsider sharon2510
Posted
I wonder if your consultant just meant that you're no longer having a flare up which doesn't mean you're cured.
If you do things to aggravate your pancreas such as drinking alcohol or eating fatty foods or smoke and stop taking digestive enzymes you will probably cause another flare.
I assume you have been diagnosed with Chronic Pancreatitis which is progressive so you should do all you can to prevent a flare up. Some, especially those with mild CP don't experience pain, I don't (not often anyway), although I still have digestive/malabsorption issues and wouldn't stop taking Creon or my PPI.
sharon2510 Reefsider
Posted
My Consultant told me i dont have Pancreatitis. They dont know what caused the Pancreatic Insufficiency. They cant seem to explain the pain as they thought the Creon would have taken this away. I am now on nutritional supplement drinks as i am not eating enough food.
Reefsider sharon2510
Posted
Sorry for the assumptions Sharon.
The better question then is; what tests have you had?
It might be in your best interest to get a referral to a gastroenterologist who specialises in the pancreas. It's a specific field of medicine requiring years more training than regular gastro guys (and gals). They know more about the pancreas, much more than regular gastro's, perhaps more than your hepatologist who specialises in the liver and associated issues.
Despite your consultants expertise, who undoubtedly has more knowledge than a regular gastro re the pancreas, he/she doesn't specifically focus on the pancreas.
Something else to consider. Any issue surrounding digestion tends to take a long time to heal, months, sometimes longer, perhaps that's what you're currently experiencing, ask your doc.
sharon2510 Reefsider
Posted
sorry for the late reply. My consultant does also specialize in the Pancreas. I told him the pain and nausea come in cycles but he doesnt seem interested. For about a month or more the pain and nausea can be really bad and the it drops to a bearable level for a while before getting bad again. My diet doesnt change so i cant figure it out. Now on top of this my sugar levels have started to rise after i eat causing me problems.
marcus49438 sharon2510
Posted
Do you test your blood sugar levels at home?
I got diagnosed with hyperglycemia last year with bloating problems, after I lost weight since December of 2017 from having a severe abdominal gnawing pain.
Early this year, I did my first pancreatic elastase test and its abnormal of the level 164 low in the moderate range.
sharon2510 marcus49438
Posted
the gastro consultant wanted the sugar levels and BP checked before and after meals and when i was having symptoms. Sugar levels went to 9.9 and BP dropped to 94/74 . I was sweating, feeling dizzy/ faint. My faecal Elastase tests were normal but Gastro diagnosed me with EPi and put me on Creon in October.
marcus49438 sharon2510
Posted
So you can still have EPI even if the fecal elastase test is normal?
I really dont get why it would be normal in a fecal elastase test but can still have EPI.
Though here what started in my history before I got diagnosed with it:
December of 2017: I had a severe gnarling pain in my abdomen and they say it was gastritis. But didn't do a endoscopy at the time. So they gave me liquid medicine.
Early 2018: My weight was notified from a clinic and it was low (150s of pounds) So I got diagnosed with unintentional weight loss.
Mid 2018 my weight was below 150 and I had done both endoscopy and colonoscopy and there were no abnormal findings, which is normal.
Very Late 2018: my weight increases but got diagnosed with abdominal bloating and hyperglycemia(my blood sugar is in between 120 and 130. Also I had done a abdominal ultrasound and during the test, gas in my abdomen blocked the view on my pancreas with out knowing if it's abnormal or not.
Early 2019: My blood sugar level is still in between 120 and 130. Did a CT scan and it says that my abdomen is normal.
After the CT scan, I had done a fecal fat test and elastase test. They say my fecal fat test is normal, but my elastase test isnt which is a 164 in the moderate range, so I got diagnosed with Moderate EPI.
So that's my history.
eagle33050 sharon2510
Posted
epi will get better with perts but you need to always take them. there is no cure for so if u stop taking them it will get worse. i think your gastro means your Elastase-1 is normal due to the creon but still have epi. it increases with the enzymes. other things cause it too. celiac or crohns.