Discussions that mention creon

Rare Disorders board


Quote from lotuslady:
I think I have carcinoid syndrome... can anyone give me advice on what I should do about it and disscuss my symptoms?
Thanks,
L.L.

hello, i also have carcinoid syndrome.... sept 2004 following years of intermittent bouts of ibs (i thought) was in considerable pain and tummy really bloated. i'd had a colonoscopy in the june after which a (horrible) doctor told me i had mild diverticulitis and to "live with it". so i was feeling so lousy all the time and thought it was normal for me until it got so bad i went back to doc. he was brilliant and this time sent me for loads more blood tests and also gave me an internal (vaginal) exam. he felt something a bit wierd and believed there was something else there. to cut a long story short, i had five weeks in hospital, they thought i had cervical cancer in the beginning and following every test going eventually found a massive tumour between my small bowel and the mesentery. the name of it was a neuro endocrine tumour and there are still some small ones left inside. it was actually strangling my bowel, i think it was like an octopus! then they took away my ovaries, my appendix and 18" of small bowel too. big op, however i felt better once i got over it. my treatment now is down to one 30ml injection of sandostatin LAR per month plus creon forte tablets as i do not absorb fat properly this is called steatorrhoea. i also have menopausal symptoms because of the ovary removal and take remifemin and b vitamins for general health.
the sydrome is still a bit of a mystery... i had scans done yesterday and there are larger lesions in my liver which is worrying as my cancer is supposed to be very slow growing. the hormone thing i need to find out more. personally i have the worst headaches now, sounds like my heart beats in my ears alot, i get so tired and can't remember things or find things! how much is menopausal i don't know, how about you? what do you know?
karen