CP and Cystic Fibrosis

[Guest guest]

I have CP. I had a total pancreatectomy without islet cell transplant

in 2000.

I am also a Registered Sick Children's Nurse (and Registered General

Nurse), and i work with children and young people up to the age of 18

who have cystic fibrosis. I have not yet seen any of my patients with

Cystic Fibrosis also develop pancreatitis, so maybe that happens

later, but i am interested in the link between the two conditions.

Sue (UK)

[Guest guest]

Sue, I live in the USA and have cystic fibrosis and chronic

pancreatitis. My first bout was this past summer, in July. My enzymes

are still three times the normal. Having difficulty eating and gaining

weight. Almost any fat bothers me. All my studies came back normal. I

am a nurse that has had to go on disability due to my CF in May of 2004.

I am 50 years old and have fought this disease for all these years. It

truly is a struggle.

I have a consulting business that I do to keep me active. I really would

like to keep in touch with you. Do you have drug reps in your country?

What therapies are they doing? I have a group of CF patients and

mothers that meet periodically and I would like to give them information

from some of your drug companies and also see if any of them would send

me promotional gadgets, and especially pens and post it notes, because

the kids just love them and they would think it was great that they came

from across the ocean.

What do you eat and how do you treat your cp? I am being told that my cp

is from the CF due to a fatty pancreas. I also have colonic dysmotility

that causes many ileus with severe pain. They want to do an ileostomy

but I am very reluctant. Please write back and see what you can do about

the drug reps in your area. I will pay for shipping if that is a

problem. Thank you. My address is 361 Merrymount Road Wheeling WV

26003. Take care and may God bless. Deb 50 w/CP/CF