I have been posting on and off the past few months about my ongoing condition. Today I went to my surgeon's and he officially dx'd me with Crohn's. I was put on Asacol, Imuran, and scheduled a remicade treatment on top of the Rowasa and Cipro that I was already on. I just wanted to see what everybody's experience with Crohn's and the pouch is and the sucess rate with Remicade. How many of you were able to keep your pouch and live a decent quality of life and how many of you went to the perm. ileo (or other alternative)? Also, I've heard of a drug used for alcoholic treatment that is now slowly being introduced into the Crohn's community. Does anybody know the name of this drug? Thanks.

Hi RJ,

The new drug you're referring to is Naltrexone - Dave has been successfully trialling it:

http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/7281042902

I was never on Remicade but there have been a lot of recent posts on this matter, so you may want to do a search. In my pre-pouch days, I was on Imuran for Crohn's and it did a good job in keeping me in remission. Only problem was I ended up with cancer ... thus the pouch.

By the way, I've had my pouch for nearly a year now and I'm not on any medication, other than an imodium before dinner. So, once your inflammation is under control, there's no reason why you can't live a decent life, even with Crohn's.

I hope you start feeling better soon. At least now you know what you're dealing with so the doctors can give you the proper treatment.

Nikki

Hi RJ, Dr. Savoca is also my surgeon, and I am also on Remicade. I am doing well.
I'm not sure why he started you on Asacol, but he may have his reasons. Let me know if I can help. Where are you having your first infusion?

I have been on Remicade/6MP since early Dec and doing well too. I am also on Cipro and being treated for a fistula. I had UC but they now think it is Chrohns. Since taking the meds my symptoms all around have gotten so much better. I hope you are feeling better soon.

Dr. Savoca only prescribed the rowasa, levsin (for spasms), cipro and HIGHLY reccomended the 6mp/Imuran and Remicade, but said to go to my GI to inquire about it. He said if I still am having bad enough problems in 1-3 months to come back to him to inquire about surgery. I was able to get into my GI (but saw a different doctor) the same day I saw my surgeon and he prescribed the remicade, asacol, imuran. My remicade treatment is sometime next week (probably Thursday), once they preauthorize it w/ my insurance and I go get a TB test. Dr. Brown (the GI I saw) said Remicade has also been found effective in treatments of severe pouchitis which I found interesting. Shelby, it is probably going to be at Potomac hospital being that is where my GI practices. Thank you everybody for your input and it gives me hope hearing from other people doing well on the Remicade treatment.

This message has been edited. Last edited by: -RJ-,

After reading this thread and having never heard of Remicade I did some research on it.... low and behold it is in the same family of drugs as Enbrel which I inject twice weekly for my moderately-severe psoriasis. Since my GI is thinking I have developed Crohns, maybe my Enbrel injections are performing double duty and helping with Crohns inflammation??? Just a thought and something I will be talking to my doc about at the next office visit.