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10 replies

crohn's now with the pouch

T TonyGMember
Hi everyone - I hope you all are doing well. I've had my pouch since 2002 from UC, and have definitely had the normal ups and downs along the way, from pouchitis to blockages. I've never really slept since the takedown but things have really gotten worse over the last few months. I was just scoped and scanned and found I now have colitis again (in the pouch) and now crohns above the pouch. Dr suggests remicade IV treatments over the next 8 weeks. I know I don't have a choice because the bag is my only other option, and that is no option for me :-(.
I was wondering if anyone might have had this treatment, I'm worried because there are many side effects and it lowers the immune system, but at the same time I am so hopeful that it works. It's so hard being so sick and this group (just by reading posts) has always helped me greatly.
Thank you so much for any input on remicade and/or discovering crohns after the pouch. I'm just trying to stay positive as I'm just so weak and drained but I know there are so many more people that have it a lot worse :-) thank you. Smiler
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MysticobraMysticobraMember
I was on Remicade for about a year when I had UC with no side effects and worked like a charm. I was very sick...very sick when I started and after the first treament I felt a change.
they said no that's impossible but I know I felt something. But not long after that I had a hernia and they told me I would have to stop taking it because of surgery.
Well I did and it never worked after that. But come to find out several years later a surgeon told me I didn't have to stop taking it which blew me away because that was the only drug that worked and it worked well.
But I never had any side effects from it..never.
K KeepFighting(Manny)Member
I am going through the same exact thing... Another choice is steriods like prednisone but personally I'd choose Remicade over prednisone because of all the side effects. What I'm doing right now is searching for alternative treatments because I don't want to do Remicade, I had good luck with it the first time i used it fir UC back in 2010 but I'm tired of all these medicines that fix you here but mess u up somewhere else. Right now I'm looking into medical Cannibas aka medical marijuana. I heard it works wonders for Crohns disease sufferers. Good luck
T TonyGMember
Thank you so much for the quick replies. They first did a pouchoscopy and thought maybe crohns, they then ordered a cat scan (a very uncomfortable one) where they shoot contrast up there and then pump air - that's where the crohns above the pouch diagnosis came from. My Dr also prescribed lomitol because Imodium was not helping. This is my first day on that and so far up all night. Can't even get an hour of sleep. I really hope I can start the remicade this week and start to feel better. It's so hard to go to work and pretend that all is fine :-(. Always pretending. I also wonder isn't there a hospital specifically for jpouch out in the Midwest somewhere. I might be desperate enough to leave ny and try anything that might help.
Thank you again for your support!
G goldieMember
Tony...I've had my jpouch for 22 years and was diagnosed With Crohns in 2008...I was on humira which helped my Crohns but not the pouchitis...I then went on remicade which worked great...helped not only the Crohns but my pouchitis...unfortunately I had an allergic reaction and now on cimzia...had a scope yesterday and I now have Crohns in the pouch as well as the stricture at the anastomoses...I'm at a crossroads...I will be trying methotrexate with the cimzia and then maybe tysabri ...then it's back to a ileostomy for good...I was very hesitant to ever do the TNF drugs but did them anyway because I wasn't ready for a permanent bag...I realize it is coming now but when it does I know I exhausted all means...I never had any side effects from those Meds, except ofcourse the reaction to remicade...I hope it works for you...

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