Does any one else have Exocrine pancreatic... - Kidney Dialysis

Kidney Dialysis

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Does any one else have Exocrine pancreatic insufficiency (EPI)

Charlene_Coxhead profile image
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Not sure if any one can help me but have any of you been put on Creon for exocrine pancreatic insufficiency (missing enzyme in your pancreas that breaks down fats, proteins and carbs) I've been told a lot of kidney patients suffer and just wondered if any one had any tips regarding diet and guide taking the medication as been told it's trial and error.

I've just started HD dialysis the end of Jan and actually now on HHD. Also have multiple food allergies to gluten, wheat, dairy and eggs. Not sure how relevant all that is but thought I should give you the whole picture.

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Charlene_Coxhead profile image
Charlene_Coxhead
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Jayhawker profile image
Jayhawker

Charlene,

Actually, I took Creon for a little over a year about 3 years ago. I was on the medication for a little over a year for symptoms similar to those you describe and the same suspected diagnosis.

During that time I saw a gastroenterologist to address this issue. That doctor wasn't sure I had the actual condition with which you've been diagnosed; instead, he thought I might be experiencing what he called "eat and dump" related to a gall bladder removal I had had in July of 2011. He said that it can take some persons in my age-range at least 5 years for their bodies to adjust to functioning without a gall bladder.

Fortunately, in my case a little more than a year after I started taking Creon my symptoms resolved. At this point, I not longer take Creon. So my situation may have, in fact, been a fairly typical reaction to a gall bladder surgery later in life:)

As far as your questions go, I did have to make changes in my diet during that time period:

1. Eat an extremely low fat diet. Any amount of fat would cause the eat and dup/cramping about 2 hours after the meal.

2. Eat cooked vegetables. In fact, for the first 5-6 months I not only cooked my vegetables, I also often pureed them. (I remember thinking that I might need to start watching natural baby foods! Thankfully it never reached that point:)

3. Eat white bread, toast, or soda crackers with meals. This helped a lot with the teat and dump symptoms along with the cramping. However, it is exactly what caused the weight gain I've experienced! That is definitely not a good situation for me . . .

I was told to take the Creon before each meal. I did that as prescribed and it definitely eliminated the eat and dump as well as the cramping and a few other symptoms that had been occurring.

It was after they took me off the Creon that I found I had to become particularly careful about no fat meals and found myself eating more white bread. By now, I'm able to eat low fat meals without difficulty most of the time. And, I no longer have to eat much white bread, etc. I still tend to eat cooked rather than raw veggies but no longer need to puree the vegetables. But I'm doing all of this without the Creon medication.

Marj

Charlene_Coxhead profile image
Charlene_Coxhead in reply to Jayhawker

Thanks for the info, i followed the low fat diet for ages and high veggies, unfortunately can't to the white bread and toast and crackers as coeliac (gluten allergies) dairy, egg and wheat. Because nothing has worked this is why they say it's the pancreas. It was discussed 5 years ago but my renal doctor sent a letter to GP and they didn't follow it up

I haven't had call bladder surgery and could explain why even as a kid I was always the smallest in the class.

Thank You for the advise as it was interesting to read your call bladder can cause similar symptoms

Jayhawker profile image
Jayhawker in reply to Charlene_Coxhead

Hum, it's clearly a medical mystery. I was definitely relieved when I started the Cron and it worked. I was also relieved when I reached a point where I no longer needed the Creon.

I, too, follow a low fat diet normally so when this began I had to move to an extreme low fat, virtually not fat diet. That wasn't too bad. The main issue was protein. It's difficult to eat any form of meat protein without encountering at least a little fat.

I hope they are able to get your situation under control and effective treatment. It wounds like your doctors are trying many of the same things my doctors tried. They wondered if I'd developed issue digesting dairy and so forth . . . The other thing my gastro talked a lot about was use of probiotics.

Marj

Charlene_Coxhead profile image
Charlene_Coxhead in reply to Jayhawker

Probiotic aren't allowed on dialysis plus no good for dairy allergy suffers. I can't afford a really low fat diet as get under weight as it is. I mean BMI of 14, only weighing 36kg so something had to change. Plus now I'm on dialysis you need a high protein diet. 1gram for every kilo that your meant to way.

So glad it helped and I'm hoping I have the same you. Will keep my fingers crossed

Jayhawker profile image
Jayhawker in reply to Charlene_Coxhead

I'm not surprised to hear about probiotics not being allowed when on dialysis. I am still not on dialysis atthis point but didn't try the probiotics anyway. Of course I run everything by my nephrologist.

Sending nothing but good thoughts your way with this!

Marj

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