Re: to Fliss

[Guest guest]

Wow! I am glad to hear from someone who has pancreatitis for a very long

time. I really didn't think someone would be able to survive that long

with pancreatitis. I am glad you seem to be doing o.k.

The reason they want to do a total pancreatectomy is mainly because of

pain. They said my pancreas is damaged so badly from the years of

drinking alcohol. They told me my pancreas was like a piece of shoe

leather. They didn't recommend taking just part of it because I get pain

at both the head and the tail. I have had them put stents in all

locations of the pancreas to help me out. If they (and I) decide to go

ahead with a total pancreatectomy I will be getting the islet cell

transplant most definitely. On Wednesday I am going in to get a EUS

celiac plexus block for the first time. It is only going to be a

temporary one they told me.

I noticed a lot of people are on Creon. Is that a better enzyme than

pancreas?

Thanks for the support!!

Darren Olson

To Darren

Hello Darren,

Welcome to the group. I know you will find a tremendous amount of

support here. I joined about this time last year and couldn't have

managed my first year after diagnosis without the support of the

group.

My case is rather different as I have hereditary pancreatitis and

have had symptoms of one kind or another all my life. My final

definitive diagnosis came only last year......my first attack having

been when I was 5 years old. I'm now 58! I was offered the

possibility of a total pancreatectomy last October, but for a

variety of reasons, it is on hold for the time being. As I said, my

case is different. My pain and other symtpoms responded well to the

medical treatment (no-alcohol, low-fat diet and high doses of Creon

enzymes)so it was decided that, as I am managing for the moment, I

should wait and reconsider the TP later. The reason why I was

offered the TP, apart from controlling the pain, was that hereditary

pancreatitis carries a very high cancer risk. After all, I've been

ill with it on and off for 53 years!

Anyway, back to you. At the time, I read a great deal about the TP.

There are people on this site who have had this operation and I'm

quite sure they will respond and let you know about their surgery.

Are you going to have it with the ICT (islet cell transplant) which

lowers the risk of diabetes after this operation? What tests and

test results have led the docs to think that a total is the right

option, as opposed to a Whipple or something similar? I hope you

don't mind my asking....it's just to clarify matters. Don't feel

obliged to answer!

Keep trying to be as positive as possible and I know it won't be

long before someone replies to share their own experience. There are

plenty of people on the site who will relate to the pain and misery

this disease can cause. Hopefully, it won't be long before you

experience some relief.

With very good wishes,

Fliss (UK)

[Guest guest]

Dear Fliss,

I know you're attentive to this potential problem and have been monitoring

yourself. With your history, this has been a smart approach, and I've always

found you to be on the ball with your whole attitude about how you deal with

your CP. Certainly it's good that your pain-in-the-toes wasn't due to diabetes,

but fallen arches, yet you were prompt to address the problem and find the

cause. Others should take lessons from you!

I know the comments of that professor must have prompted you to have a lot

of soul searching and rudely interrupt your peace of mind. I do believe you

need to have that peace of mind, no matter what your future brings. And

there's nothing wrong with a little break from having to worry about your future

every minute, as long as you can slip back into reality and deal with things in

a timely manner. I've always thought of you as being very realistic and aware

of how you're doing, anyhow. I know that each test, CT-scan, ultrasound,

EUS, etc. brings with it a fear of what they'll find, and we worry needlessly

beforehand, because no matter what it is, there's really nothing we can do

about it. I know I was (am) so disappointed with my ultrasound results, finding

that the pseudocyst has actually increased again to a size that puts me at risk,

instead of resolving.....but there's really nothing I can do about it. That's

the

type of thing that I'll just have to deal with one day at a time, since nothing

else

can be done.

I know you'll deal with the results of your EUS the best way you can when you

know them. I don't know what your expectations are, but I do know that it's

most natural for one to hope for the best, just as well as it's natural for some

to

expect the worst. That's just the way people's differences in personality are,

and both are " normal " . It's how you deal with the information once it's

received, that matters, and I know you'll do just fine in that area.

About your awarenss of what's going on with your health, you weren't here in

the group when this whole diabetic ketoacidosis thing happened to me last

year, but I'm sure you've heard me talk about it enough in more recent posts.

I do urge people to be well-informed and suspicious of any peculiar changes,

or early warning signs......because those of us with CP are at high risk for

diabetes due to our pancreas deficiencies. No one really wants to think about

it, but the risk is there and it's my belief that the earlier you catch it, the

easier it

can be, and perhaps the person won't end up with brittle type 1 diabetes like

myself.

My demise was because I had a doctor (a GI, no less) that just didn't see the

whole picture, and I wasn't aggressive enough to address the whole picture

until it was too late. Even though in his first consultations with me he

discussed that the potential of diabetes was there for a person with chronic

pancreatitis, when I asked him to test me after my first year with CP he

refused. I had asked that time because I'd had an episode of light-

headedness one night right before dinner and noticed that as soon as I ate

something it went away. I mentioned it on the MB and a friend said maybe it

could be a hypoglycemic episode - potential diabetes. When he said it was

too soon for me to worry about diabetes, I was more than happy to stop

thinking about it and just continue on as usual. It was 5 months later when I

started my downhill slide, losing weight rapidly, increased pain, blurred

vision, and then at 7 months, frequent urination and increased thirst..... And I

was so fatiqued all the time that I was back to having to nap every day. The

doctor knew about all of this, I was calling him, pestering him, for weeks about

it, yet still he didn't bother to test me for diabetes. He saw me a week before

I

was admitted and even then his diagnosis of my problems was that I had

" bacterial overgrowth " .

All this time he kept telling me that it was too soon to be worried about

diabetes, and I just wasn't aggressive enough to take it any further until a

month later. I finally set up an appointment with an Internist to get a second

opinion. Truthfully, because the high BG's had messed up my brain enough, I

couldn't even focus on the facts and was so out of it that my husband had to

lead me around like a pet on a leash. I was so weak and confused at that

point that I couldn't figure out how to dress myself or put on my shoes.

Oops, I didn't mean to start rambling on about this again, but I just don't want

to see something like this happen to anyone else. I should write a book about

it or something, and get it out of my system!

You asked about when we take our enzymes. I always take mine right at the

start of my meal. I take 5 or 6 Viokase 16's, the higher amount for a meal with

higher fat and protein content. I've never taken them during the meal unless

it's an occasion where the meal is going to be spaced out during a long time

frame, like Thanksgiving or a formal dinner at my SIL's house......LOL! She

talks so much and is so theatrical that each course is a lengthly process and

the dinner itself ends up being an hour and a half or more of us sitting at the

table. Then I spread out taking the enzymes. That doesn't happen often at all,

or I decline an invitation because this type of dinner is so difficult for me to

handle with my diabetes and insulin injections. Because of the diabetes, I

really have to eat all my meal within a 15 minute period of time. I inject

before

I eat and have to time the meal to utilize the insulin when it peaks.

I don't take Zotan but I do take a proton pump inhibitor, Protonix, twice a day.

I

also take one Rantidine (Zantac) each night before bed. This helps to reduce

the acid level and I imagine works in a similar manner to the Zotan. My GI felt

this was more effective than taking an antiacid before each meal, and I will

have to admit that I have no problems with my meals anymore, no after-meal

stomach upset, bloating or pain. My bowels look good, and are regular and

normally formed. Gross to discuss, but that is a reflection on how well your

enzymes are doing their job, so it is important and relevent. I think it was

Karyn who said that that's the first thing she pays attention to, and she's

right

about that....LOL!!!

I've read different opinions about the enzymes and when they should be

taken, before, during or after.....it's one thing that docs can't seem to agree

on.

So I don't know which way is best, I'm just following the directions given on

the

literature that came with the product. Since I've not had any problems with

this, I've just stuck with it.

I hope this information is of some help. I didn't mean to ramble on so much,

but I caught the chatty bug today and, as usual, just had a lot to say!!!

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,

and should not be substituted for consultation with a medical professional.