Remicade

Hi all.I have had Chrons for over 37 years.I had the majority,all but 1 c.m., of my large intestine removed at age 20.I am now 52.After my surgery I was blessed with years of remmision & minor flares. As we all know Chrons never goes away.Well its back with a vengenance.I have tried Immuran and had an alergic recation.I then was put on Entecort and gained weight back and have been feeling great.I went for a flex sigmoid last wed and the doc says the chrons is very aggresive.Thing is I still feel great.He put me back on prednizone,and cortisone enemas.I go back to see him Thursday.We have had many discussions about Remicade and I know he will suggest it again.I have heard of many bad experiences with Remicade.I know this is a last resort treatment for Chrons.Has any one else had these thoughts and or discussions? Am I being pairanoid for no good reason? My bigest concern is I feel great and have none of the usual flare up effects.Well thanks for your ear, and replies are appreciated.

Rememeber Paulines words...Living ith cronic illness builds courage!!!

Twitty ;

you sound just like me ! So similar - dx over 25 years ago ...now 51

I also had a ft of sml intestines removed - a few flare ups over the years but mostly remission -

however, when I did flare a few years ago it hit like a brick ; with no warning - as I think back over my past I realize that most of my flares were like that for the most part except for early on -

I had been on Remicade after my last flare ( in 2004 ) but went off after a year ; as well as quit the asacol ( which made me hurt more ) I felt better with no meds during this time then I did w/meds...

Had my 2 year colonosocopy a few weeks ago which showed active disease and 2 fistuals - so now I am having to go back on the cade - Like you , I feel really good - it is very hard to have to go on such "big guns" as my gi calls it when I dont feel sick -

BUT - if you are like me , the disease seems to hide, staying quiet until it attacks with all its weapons ! Then as most on here will attest to as well as the docs - it is a REALLY good idea to get going on the meds -

I don't regret stopping them , because during the time I was on it all - honestly I felt worse then I have for the last 2 years -For 2 years I have felt really good ! However, maybe I could have avoided the fistuals coming back ( ?? ) who knows? They can still come back if the meds stop working right ?

I am loving my doc right now ( we have had some not so good times : ) , but he knows me now ...and even though he wanted me on the prednisone he knows how much I hate it ...so, he is willing to wait for me to start the cade !

Keep in touch and let me know how you are doing and what you decide - also what are your symptoms like when they do happen ??

Marie

I have been on Remicade now for about 17months.  So far so GOOD.  but, i have no large intestine.  everybody experience is different.   

U.C.  diagonesed in 95

Large intestine removed in 02

Remicade in Nov 05

Hi all.Thanks for all the great responses they are well taken.My symptons,when I flare,are dieahera,loss of weight,fistulas,and loss of appetite.I have not had any for well over a year now.The last one was the fistulas.Doc had me on entecort and I was loving it till the flex sigmoid last week.I go to see him Thursday and will let you know what he has to say.

Sounds like the remicade is a mixed bag.I know its "the big gun" and I have a problem pulling it out of the holster at this time   I also have heard once you go off it there is no going back on it.I also know as it runs its course it looses its bang because we become resistent.Seems like a something I should not do at this point O well we will see what the doc says Thursday and hope for the best.I will keep you posted. Till then I wish you all remission.

Is there any way to reply to certain peoples questions or do I just do it in my reply?

Thanks for all your help.....Jimmy

Remember...Living with cronic illness builds couarge!!!!!