To Andre

[Guest guest]

Hi Andre,

Of course I had no idea you had had so much treatment and so many

procedures. Like you, I have had CP symptoms for a long time......54

years! I have hereditary pancreatitis and had my first vicious

attack at the age of about 4.

Last year I was seriously considering a TP although it is not done

with ICT in my hospital. (In any case, as my CP is virtually end-

stage now and I am expected to be diabetic very soon, it is unlikely

that I would have had enough islet cells to make the transplant

viable.) The surgery was suggested for consideration because I was

in very bad pain for much (not all) of the time and HP carries a

very high cancer risk. However, I responded well to the treatment

(Creon, no alcohol and pretty low-fat diet) so the surgery has been

shelved for the moment anyway. I will see my pancreatologist again

in July when, hopefully, all my genetic tesys will be complete as

well.

I can't see what you have to lose by at least discussing the TP/ICT

if life really can't be managed reasonably at the moment in any

other way. I think most of us have real problems. I still have some

very bad days. But this is a question of degree isn't it? I am

still working, for example, and still function pretty normally most

of the time. Once it gets to the stage where constant bad pain and

inability to eat becomes the norm, then some serious measures need

to be taken, I would think. You could at least consult Dr

Sutherland as this would give you something new to focus on and a

new hope. All your other surgeries have left part of your pancreas

behind. This one would remove it completely. I don't know what the

siuation is with the TP when one has had previous surgery.

I do hope things improve and you find at least a partial solution to

the problem.

With very good wishes for your better health,

Fliss (UK)

[Guest guest]

Andre,

I have to admit that I feel much the same as you do about my

smoking habit. I don't want to give it up, I enjoy it and it's one of

the few things I have left that I can enjoy. I've had to give up the

sports activities that I dearly enjoyed, and then those other

pleasures, like a glass of wine and/or a fine meal to go with it

are also forbidden.

My decision about the peridontal surgery has not been made yet.

My dentist was not aware that the underlying reason for my bone

loss is the malabsorption from the chronic pancreatitis, and that

because of that, it isn't a problem that can be correctly fixed now

and expect to remain fixed. The malabsorption will always be

there, so the problem with the bone loss will be ongoing. I don't

want to spend the thousands of dollars for something that in

less than a year or two will just have to be done over again, and

again. Dentures do seem like an easier, less expensive and

certainly less painful alternative.

My gums have receded also, caused by the acid/bile from the

vomiting, and my dentist also wants to do the gum procedures

on me, once the peridontist is finished. I forgot to mention that

earlier, or perhaps I just didn't want to think and talk about the

whole thing any longer.....yuck. I won't know what I will decide or

what the best options are until after I meet with the peridontist

next week. Since four of the teeth are already loose and easy to

move with my finger, the dentist says it won't be long before they

will come out on their own. They've already moved out of their

usual positions which have caused some gaps that weren't

there a couple months ago. So the whole situation has

happened very quickly and I feel like I'm being railroaded into

having to make a decision too fast.

Thanks for your comments and for explaining your attitude about

this. Now I know I'm not the only one who could feel as I do.

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

qualified medical professional.