Re: My relationship with pancreatitis Welcome!!!!

[Guest guest]

Hi,

What's your name? I too have had pancreases for the past 13 years. Since 90

too. I feel like we have alot in common. It took me many years to get DX. I

have chronic pancreatitis, since official in 96, they decided it was then

chronic and wasn't going away. I know exactly what you mean by protecting you

love ones, by having someone else to talk to who understands what you going

thought. Family and friends are great, but sometimes I really don't think to

they truly understand what we are really going thru, like someone else who has

this dreaded disease. You have come to the right place. We are very

understanding, sympatric, and caring group. If you every need to vent or just

get something off your chest, we are very good listeners. I have gain all lot

of good information from this group that I have found useful.

I just want you to know that all the information here is what we have been

through and is just our opinions. Do not substitute it for good medical advise.

I feel we have all lot to offer you and you will have all lot to offer us as

well. If your ever having a bad day, we understand that. We also like to hear

when things are going for you, as well. If I can ever be of any help, just

ask. That's what we all here for, to help each other.

Please let us know your name and what state you from. We might have someone in

our group that is close by you. Welcome and we are looking forward to getting

to know you better.

Take Care,

Louie( A lady) in WV

[Guest guest]

Louie

I did not realize you had been suffering for so long. I totally agree with

you about family and friends and how they react to this disease. Believe it

or not, when I 1st started getting on line and finding out about CP my

parents, brothers and sisters went into total denial about the whole thing..

mom, dad & 2 of my brothers still are. My mother even wanted to come into my

home and take my PC away so I couldn't get on line. They all kept telling me

that I was only visiting horror sites related to CP, Cassie would never get

that bad...I was misinformed... there had to be a cure...that only happens to

drunks. Do I need to go on. Without the group here I really don't think

Cassie, Mike and I would have made it through the last 3 1/2 years without

you guys.

Beleive it or not when she's hospitalized I have to beg to get any family to

visit her. I don't know how many times I have to tell the they can't catch

it. It really effect her recovery each time, yeah they care she's in yet

they can't stand to see her, and people wonder why she also has depression.

At the same point in time she has a baby brother 3, the rest of the family

think it's ok to give him all the things she can't have..Fatty foods, candy

etc... They think us cruel for appling the same rules to him as we do to

her. We just look at it as teaching him healty habits. It really makes her

feel left out.

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Dear Patty,

I am recently new here, and therefore don't know the whole story,

but if you don't mind me asking, How old is Cassie? Do both you and

she have cp? She is your daughter right?

Confused in MN

[Guest guest]

,

Cassie is going to be 13 in May. She had her 1st attack at age 9, it was only

after they went in and removed her appendix that they discovered she had

Pancreatitis. She has always had some type of stomach pains for as long as

we can remember, most the time it was put off to her having ADHD. ADHD

causes stomach problems in some people. She has had many attacks each time

amylase and lipase higher than the last. ERCP in Jan 2002 was a disaster.

Every test imaginable was done so... In November of 2002 we were sent to

see Dr. Fox at Boston's Children's Hospital, after much family medical

history and mention that Cassie's cousin has server stomach problems he

decided to check for hereditary pancreatitis and SPINK1. I had mentioned

this several times to local Drs. Noone had any idea how to get her tested.

Dr Fox had blood drawn for whole family and it was sent to U of Pittsburg,

Dr. Whitcomb. By Thanksgiving we had answers no hereditary pancreatitis but

Cassie and I had SPINK1 n34s. SPINK1 does not cause pancreatitis but seems

to predispose about 30% of the carriers to it. It also increases risks of

pancreatic cancer, ovarian cancer and numerous other problems. SPINK1 is a

mutation on chromosome 5.

As for me, I have never been officially diagnosed with Pancreatitis...Knowing

what I know now I beleive I have had several attacks that yes a few have

hosptialized me. Yet pancreatits has never even been explored. Since then I

have spoken with my Dr about the problems I have and we will explore

possiblity next time I feel I am having an attack. I have a good idea on my

triggers but I don't intend to eat something bad just to get diagnoisis.

Hope this helps, god bless

Patty Hurst

Bangor, ME

Maine State Rep

PAI

[Guest guest]

Dear Patty,

Thanks for filling me in. Hope you and Cassie are feeling better

today.

Friends,