To Deb

[Guest guest]

Hi there,

I have CP and have had my pancreas removed.

I'm also a nurse in UK and i work with children who have cystic fibrosis.

I'm afraid the bloating that you can describe if often part of the condition.

I know you must be taking pancreatic enzymes as part of your CF management,

but if you have CP as well, i wonder if your dose needs increasing. Maybe it

would be worth asking your doctors. Also, do you take Omeprazole or something

similar to aid the absorption of the enzymes? I'm sorry if this is something you

already know. It may also help to eat small amounts and often. I'm sorry if

you already know this. I don't wish to sound patronising.

Sorry i am not able to answer all your questions. If i can help at all,

please contact me.

Sue (UK)

[Guest guest]

Dear Deb,

Welcome to our support group. You have come to the right place if you're

seeking support and the knowledge and experience of others who have dealt

with CP for a long time.

It sounds like you've already got your act together, and you're asking

questions that plague us all, but there are some easy answers. The bloating

and distention is a common problem with most of us. If you're not taking

pancreatic enzyme supplements yet, I suggest that you discuss this with your

doctor. The enzymes will help a little with this problem. They're composed of

the pancreatic enzymes lipase, amalyse and protease and designed to

replace those of your own which you aren't producing properly.

If your lipase is running that high, your doctor may be waiting until it comes

down before he puts you on the enzymes. I know that when I had my first

acute attack and had such high lipase levels, my doctor made me wait about

4 weeks until they came down....then he started me on the enzymes. Use of

them doesn't totally reduce all that bloating, tightness and distension, but

they

help a lot. Most brands will do a great job of helping with the pain that you

have after eating, too, which is an added benefit.

The times we usually stay on clear liquids is when we're in the midst of a

severe flare up, or anytime we're hospitalized with an acute attack. It's best

then to let the pancreas rest and not have it stimulated by the injestion of

food.

Caffiene and chocolate are considered harmful to our CP diet. As far as diets

go, most of us find that a low fat, low protein and high carb diet is the most

pancreas friendly. If you go to the main page of the PAI yahoo website, and

click on the icon that says " Files " , you will open to a page that has

" Nutrition "

as one of the subjects. Click on that and it will take you to a file called

" Diet

Tips " . I've put together a whole page of dieting and cooking suggestions that

most people have found very helpful to use when considering what they can

and can't eat.

The fatigue is common, too. I've found that by taking certain antioxidants that

are helpful for pancreatitis, plus additional supplements and vitamins, have

helped greatly to ward off that continual fatigue. We get that way because our

bodies aren't absorbing the right nutrients and vitamins. I've been taking the

pancreatitis antioxidants now for nearly three years and rarely feel that

oppressive fatigue like I felt in the beginning.

I was diagnosed three years ago, but have already reached pancreas burn-

out and brittle diabetes, so I know quite a bit about dealing with this disease.

I'd be happy to help you out any way that I can. If you'd like more information

about the antioxidants and vitamins, please let me know.

You seem like you're already thinking about your plan, and are motivated to

follow a positive course of action to make dealing with your CP easier. Your

attitude will make all the difference in how hard or easy it can be to adjust,

and I certainly think you're headed in the right direction. Let us know how we

can help.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI

Note: All comments or advice are based on personal experience or opinion

only, and should not be subsituted for consultation with a medical

professional.