Liana

[Guest guest]

Hey Liana My name is Giovanni first and foremost. May God bless you and your

family. I know exactly what you are going through. I started this disease at 20

years old inside of Macy's. I happend to be shopping for a suit for a christmas

party and I passed out right there in the store with my Fiance. I went and saw

my PCP and she ran some tests and said the same thing. The gallbladder needs to

come out if you dont get it out within the next 24 hours you could die. I was

scared and said sure lets do it. Well let me tell you it all started on the OR

table. The Anestesia guy was giving me meds and asked me to tell him when I was

getting sleepy. I said nothing yet and he was like um i have givin him enough

for a huge adult male. and the surgeon said give him more. Well they gave me 3

times more and then they said oh its locked and when they un locked it I was out

like a light. I was out for another 22 hours after that. should have woken up in

like 5 or 6 hours but i didnt wake up for 22 hours the RN said. Well 3 months

after the surgery is when it all started. The severe pain and Nauseau and

throwing up and you know it all. This was when I was only 20 well i was in the

hospital for 7 months out of that year trying to find out what happend. I had

every test done 3 times over until the hospital and GI doctor said there is

nothing else we can do you need to see another more experienced doctor, That

started it all. Let me tell you all my tests were normal all my labs were always

normal for years but i was in constant pain and admitted constantly. Well after

4 or 5 years the GI doc said I want to try this test that is the golden test of

tests to find out and it was the EUS. Well after the test he said you have CP

and its to advanced to do anything right now. If we caught it earlier we could

have done something. I was so upset. I went out and seeked other GI docs. But no

one will take my case because i am that 5%of people that the case is so hard and

a doctor needs to work with me in order for it to work and I got blown off so

many times its pathetic. One day the GI doc said im sorry Giovanni there is

nothing that we can do for you you need to take meds and pain meds and thats it.

Well i do that but i have flare ups like every 3 or 4 months and I go to the

hospital and all the labs are normal or borderline and the MDs and RNs think oh

him again what is it this time. what kind of meds does he want now and so on.

and I feel like crap. On top of all of this i got married 2 years ago been with

her for going on 8 and just had a new baby boy and Im going through this. It is

so difficult for her to see me in pain and uncomfortable and so on and not be

able to carry the baby because of pain or in going to throw up. she is fed up

honestly. But she prays everyday that the lord does a miracle on my belly and

make me a witness and testify. But i can relate to everything you say i mean i

am the man of the house and I cant even do alot of things without having to rest

because of the pain. But i do thank GOD for my wonderful wife. God knows all and

he put us together for a reason. to make it work. I would like to talk about the

meds though. See she doesnt understand that I have to take my meds or i will get

sick and end up in the hospital. I take 125 mcg duragesic patch q 48 hr and the

Actiq 200mcg PRN like5 day. and she says that I am addicted to them and I have

to say that I am addicted to them because im caught if i dont have them im in

pain and because i have been taking them for a long long time i will go through

the withdrawls and she saw me once going through really bad withdrawls because

MD cut me off and Dropped me on that drop of a hat and she said that was the

scarriest thing in the world she has every seen and she was in the bedroom with

the 1 month old baby praying to Jesus to help me get through this and her

prayers worked everything worked out the next day but it was hard. See i am 28

male from NYC and i never thought I would have this disease but look it hit me

hard and fast.I am loosing so much weight. I am 6ft and about 190 lbs and for

the wedding I was 280 to 290 i was a big guy and then i lost alot of weight i

went down to 210 because of the disease and now im down to like 190 in the last

3 weeks i lost 20lbs. Well i have talked alot im sorry for going on but i wanted

to let you know that you are not alone and I am here young and have this

horrible disease but I do have one thing up on this disease I have Jesus Christ

My Lord and Savior. One day he will do a miracle in my life and body and get rid

of it. Well if you ever want to talk or need someone to listen too I have a

great ear and give good advice. Well God Bless you and Your Family and may the

angles in heavan watch over you and your family and bless and protect them. God

Bless..

P.S. sorry for the length so long... sorry

God Bless you and everyone in this wonderful Disease struck Family..

Gio

[Guest guest]

Hello Giovanni,

Thanks for sharing your story with me. Congratulations on your

recent marriage and on the birth of your son. I'm so thankful to

the Lord for my son. At times when I feel my worst, just looking at

him makes me feel a little better. Enjoy him to the fullest....they

grow up so fast! I can't believe my baby is 2 1/2 yrs old! I hate

that at times I can't get out of bed to play with him. My husband

tells him " Mami has a boo-boo " and he comes over to me and gives me

lots of kisses....that makes me feel better =) Daily I thank the

Lord for my husband. I know it's not easy for him either. He tells

me " I believe God put you in my life so I can take care of you. "

And he has!

This is all for now. I hope you have a pain-free day! Take care

and God Bless!

Sincerely,

Liana

[Guest guest]

So sorry that you are having a bad time. This disease is so

incredibly unpredictable. Today I feel good, who knows what

tomorrow will bring. I have cancelled, postponed, and excused my

way out of so many things. I feel like a time bomb sometimes just

waiting for the next really bad day to happen. I feel your

frustration......hang in there.

Zoie