T1D and pancreatic enzyme insufficiency


(clbj) #1

Six months ago, an internist diagnosed me with exocrine pancreatic insufficiency. It has been a hellish and nightmarish diagnosis. I have had to take prescription enzymes and I feel lousy the majority of days. I have been told there isn’t a lot known about those with type 1 being diagnosed with this. Most of those taking prescription enzymes have cystic fibrosis or pancreatitis.

If anyone might have information about this, please email to let me know what you might know. If I could get my life back before this diagnosis, Imwould take it in a minute. By the way, my diaversary of 45 years was last July.

clbj


(isabelle) #2

I lost my pancreas to pancreatic cancer 5 years ago and I have been taking Créon enzymes ever since. About 13 pills a day. I am also type 1. No having enzymes plus type 1 is a nightmare. But don’t get depressed.
Like you taking those make me sick most days.
I have learned to eat as little as possible so I don’t have to take many enzymes.
I eat vegetable soups. Some fruits.
No meat. Even with enzymes I can’t digest meat or fish.
No dairy. So no milk, yogurt or cheese.
No beans. No eggs.
Very limited Foods available.
Eat little meals. Easy foods.
I hope it helps.
Isabelle


(clbj) #3

Thank you, Isabelle. I will be going to a new gastroenterologist next week and will see what he says might be making bowed issues worse.

I will need to try to incorporate the smaller meals idea. I feel so lousy most days I can hardly function. My family members do not understand this at all and wonder why I cannot function. I wish I didn’t have to take Creon. Besides it making me feel lousy, it is so darn expensive. Another example (like insulin) of pharmaceutical companies and their managers becoming greedy and making those of us who are ill pay exorbitant prices for medication we absolutely have to have to keep us alive.