Arizona Questions

[Guest guest]

Fred,

You wrote, " We live outside Phoenix, AZ. In 2001, she had major surgery to

open up the pancreatic ducts.... I keep a journal of her flare-ups and lately

they are becoming more and more frequent ... she takes Vicodan ... feels

bloated, uncomfortable, and gassy. ... She will not go to hospital as all's they

do is give her pain meds and IV fluids. "

1. Again, welcome, glad to see you post an intro note to let us know

what's going on. I was curious what the name of the pancreatic surgery she had

and

where she had it?

2. That is great that you have been keeping a journal. The PAI encourages

people to do this for numerous reasons. First, time can slip away and before

you know it you can't remember what happened or when. My journal even records

my appetite, nausea, and bowel and bladder elimination. People may laugh, but I

look before I flush. What you see can be significant information to know

what's going on. If there is an Exxon Oil Spill, I know I need more enzymes. It

also allows me to have an intelligent discussion with my healthcare providers.

When they ask a question, I can answer succinctly, instead of Well? Uh? Hmm?

For women, most of us who are still menstruating are extremely irregular, and

that is the first question the nurse asks, beats me, if I don't record it.

Trends are important. It is often the patient and family that will identify when

early onset of a problem. When these logs are looked at carefully, often the

thing that caused a change usually happened a day or two earlier than the

symptoms.

3. Most people who takes narcotic have the expected side effect of

uncomfortable bloating. It is caused when the bowel takes a rest along with the

pain.

They all shut down. The PAI makes no medication recommendations. What works

for me is a medication my doctor orders called Miralax, a clear, tasteless

powder that I take at bedtime when I see things slowing down. It isn't like any

over the counter stuff, like Maalox, or MOM. It doesn't get hard. It dissolves

in any fluid. And it works with no known side effects. No cramping. It will

help postpone long term problems from narcotic usage called Mega Bowel, but

keeping them regular.

4. The gassy feeling you commented on, may be like other people with

Pancreatitis. It isn't caused from the narcotic, per say, but coincides with it,

since she is taking Vicodan because of an attack causing pain, necessitating the

increased narcotic. It is the malabsorption that is occurring during this

attack that is not allowing for proper fat metabolism, and it therefore builds

up

in the bowel. Additionally, because there may be low enzymes contacting her

food, the food she eats is not going through normal digestion. Combined with

the slow down in bowel motility, the food often becomes somewhat of a " human "

compost, producing it's on aerobic bacteria, which produces gas and bloating.

(Oh, the miseries of this disease.) My doctor prescribes enzymes for me to take

on a regular basis. There are two main brand name and several generics. It is

6 of one a half a dozen of another of which would work for one vs another. I

take Creon Brand name capsules.

5. There are many, many, many over the counter enzyme preparations

available in health food stores. Though I also am on a comprehensive

complimentary

vitamin / mineral / herbal / amino acid program, I never take anything that my

healthcare team is not aware of. There are known side effects even with

" natural " products. For myself, the Creon enzyme preparation has the balance of

lactase, amylase, and protease that I need.

6. Most of us have the same opinion about hospital care we expect when we

go, IVF and pain med. The key ingredient for most is the IVF. Dehydration can

exacerbate an acute attack of Pancreatitis or prolonged the attack.

Maintaining adequate hydration is very important. I often have a lot of nausea,

though

it cycles. My doctor prescribes Zofran Liquid which works like magic in

minutes. The Zofran tablets do not work. I don't absorb tablets well. Phenergan

does

nothing. Everybody responds differently to every medication. That is why we

can't give advice or direction re: specific medication or treatment.

7. I hope through your association with the PAI you can get the support,

education, advocacy, and with your health care provider develop a Pancreatitis

Management Program. Crisis management does not work. I have a 'good day' care

plan and a 'down day' care plan, and the tools and therapeutics to deal with

whatever I wake up with. This takes time to develop. And, when you think you

finally have it down, this disease throws you a loop hole.

8. Our goal is to empower you to make informed healthcare decisions. For

more information, please visit the PAI Top5Plus5 Incredible Library of

Information. Our Northwest Regional Representative is the webmaster for this. We

applaud his efforts to keep plowing through cyber space finding answers to any

questions we have.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International