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Need Advice or Opinions

Thu, April 14, 2016 8:51 PM

So I have UC and I have tried multiple pill medications and failed due also to having a serve gag reflex, recently have been on the remicade and prednisone but my immune system is so low now I practically have no immune system. Recently been in the hospital due to cellulitis on the right side of my face, mersa in the nose, vre in th butt. I've also had c diff 3 times. I've been in the hospital about 7 times , 5 colonoscopies. So due to my recent hospital visit my doctor classified me as a remicade failure. Just got out of the hospital a day ago and they did a flexi colonoscopy and they said my colon looked better but its still bad so the surgeon wanted to hold off because it was giving miss signals plus ive gained 10 pounds. Now there saying they want to continue remicade double my dosage and make my immune system even lower than what it already is. This is where I've hit a snag. They say it's my decision to either continue remicade or do surgery. If I do the remicade I get seven lower immune system, there taking me off the prednisone, I'm having an imense amount of pain every time I go to the bathroom where I'm crying , shaking, sweating, but my stool is forming, being mushy, liquid. They can't give me anything for the pain because anything they give me either leads back to c diff or even lower immune system. Or I can do the 3 part surgery for the j pouch and deal with a bag for a short time, pain after surgery, eventually be able to move on with my life with no constant pain, but I've never had surgery befor, once it gone and you can't go back, and I'm only twenty. So I'm trying t decide what in the world to do .

criggs
Joined Feb 21, 2016

Tue, June 07, 2016 1:46 PM

Reply posted for criggs.

Hi Criggs, Hope you are doing well. I'm not sure if you have made your decision but I just wanted to share with you I recently just had my colon removed two weeks ago. I suffered from UC and all the meds and biologics were not working. I am still tapering off prednisone which was the only thing keeping me from flaring again. After 20 years I finally made the decision to do the j pouch surgery. I had the option of surgery or try entyvio. My body is still healing and it's not an easy journey but I'm hopeful it will work out for the best. I have a temporary ileostomy right now and it's def an adjustment but it's also liberating from not being on the toilet in pain most of the day. I wish you the best in whatever you decide.

goofygutz
Joined May 24, 2013

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