by Anonymous
(England)
Hi
I dnt want to bore you with the extent of how bad my crohns is. Ive been on PN the last 2 years due to fistulas on my stomach. I have 300cm of lower intestine left and have had the last surgery i can possibly have without becoming PN dependant for life. Anyway since last month ive been really well,ive been eating meals without being sick and eating loads,im really happy as its the 1st time in 11 years ive been in a good place crohns wise. However i recieved some worrying news today that im not allowed to continue my unliscensed drug Orinzole/Tiberal which has been working like a diamond for me.
From some of the posts im assuming this is a Amercian site. I live in England and have the NHS and they have provided my PN and nursing care at my home for the last 2 years at the running cost of £1000 a week. Now im off the PN and hoping to get my hickman line taken out in December,ive been put on Tiberal/Ornizole for proxlatic use. Like i said above its been excellent for me now ive been hit for six after being told i cannot have anymore due to the fact its hard to obtain and its unliscensed.
Can anyone tell me if its liscensed in the USA and if theres anything similar to it.
Thank you for reading