old kid on the new block
hi all. thought i'd join to share in my experience and help out where i can. i was diagnosed back in 1994.
i took solazopyrin (spelling??) for about 3 months after the diagnosis and never touched it again, or anything else for that matter.
the crohn's flared up seriously in 2002. i lost a lot of weight and was basically bed ridden. i tried various diets, etc, but i think most of them just made me even more ill. i battled for about 3 years to get back on my feet. (refusing to have an op)
eventually i heard of a medical trial for crohn's patients going on in the city where i live. the medication is called CDP-870. i'm not sure what the final product's name is even though it has been released on the shelves recently in europe.
basically it is something very similar to revelex. it fights infection. the difference is though that it is injected directly in the tissue right underneath the skin in the abdominal area. thanks to this drug i was able to go back into remission.
i get monitored very closely. monthly blood tests, stool samples, urine samples, etc. every 6 months they also take x-rays of my lungs to check that i do not contract something serious like TB.
lately i have been getting a bit worried about the medication because of all the stories about remicade that can cause cancer. so i'm considering going off the trial.
in all honesty. i can't say for sure whether this medication is still working for me as i still get occasional flare-ups even though they are not as bad as they used to be.
i have learned to control this disease through eating properly. and by this i am not saying that i am following any prescribed diet. i have simply figured out for myself what works for me through trial and error.
i don't eat a lot of red meat. when i do have the occasional bit of red meat, i don't eat any meat for at least 3 days after. i eat mostly white meat (not everyday) and live on things like pasta, potatoes, etc etc.
i avoid eating a lot bread and pastries and i don't touch beans, nuts, seeds, all those kind of things, even though i have to admit, when i get blocked up, nothing helps getting unblocked like a piece or two of well toasted wholegrain bread. oh, and believe it or not, pure filtered black coffee without milk and sugar first thing in the morning!!
anyway, i've learnt to live with crohn's. i'm in control. it does not rule me, i rule it. i don't let it get me down. it does get difficult when i have a severe flare up and the pain simply does not give, but i always come out on top. it makes me a better person. i see crohn's as my gift.
when i was ill over an extended period of time, i was forced to quit my job and look for alternative means of income. i started studying web designing through the greatest university of all, GOOGLE!! so i am in the position where i work from home.
i joined this forum hoping that i could maybe assist wherever possible. i have been at the bottom of the pit, i know it inside out. maybe i can help someone looking for the way out of there.
regards,
björn
hi all. thought i'd join to share in my experience and help out where i can. i was diagnosed back in 1994.
i took solazopyrin (spelling??) for about 3 months after the diagnosis and never touched it again, or anything else for that matter.
the crohn's flared up seriously in 2002. i lost a lot of weight and was basically bed ridden. i tried various diets, etc, but i think most of them just made me even more ill. i battled for about 3 years to get back on my feet. (refusing to have an op)
eventually i heard of a medical trial for crohn's patients going on in the city where i live. the medication is called CDP-870. i'm not sure what the final product's name is even though it has been released on the shelves recently in europe.
basically it is something very similar to revelex. it fights infection. the difference is though that it is injected directly in the tissue right underneath the skin in the abdominal area. thanks to this drug i was able to go back into remission.
i get monitored very closely. monthly blood tests, stool samples, urine samples, etc. every 6 months they also take x-rays of my lungs to check that i do not contract something serious like TB.
lately i have been getting a bit worried about the medication because of all the stories about remicade that can cause cancer. so i'm considering going off the trial.
in all honesty. i can't say for sure whether this medication is still working for me as i still get occasional flare-ups even though they are not as bad as they used to be.
i have learned to control this disease through eating properly. and by this i am not saying that i am following any prescribed diet. i have simply figured out for myself what works for me through trial and error.
i don't eat a lot of red meat. when i do have the occasional bit of red meat, i don't eat any meat for at least 3 days after. i eat mostly white meat (not everyday) and live on things like pasta, potatoes, etc etc.
i avoid eating a lot bread and pastries and i don't touch beans, nuts, seeds, all those kind of things, even though i have to admit, when i get blocked up, nothing helps getting unblocked like a piece or two of well toasted wholegrain bread. oh, and believe it or not, pure filtered black coffee without milk and sugar first thing in the morning!!
anyway, i've learnt to live with crohn's. i'm in control. it does not rule me, i rule it. i don't let it get me down. it does get difficult when i have a severe flare up and the pain simply does not give, but i always come out on top. it makes me a better person. i see crohn's as my gift.
when i was ill over an extended period of time, i was forced to quit my job and look for alternative means of income. i started studying web designing through the greatest university of all, GOOGLE!! so i am in the position where i work from home.
i joined this forum hoping that i could maybe assist wherever possible. i have been at the bottom of the pit, i know it inside out. maybe i can help someone looking for the way out of there.
regards,
björn