My Crohn's Story - Remicade, Humira, Cimzia

Hello everyone, I'm new to this, I feel very sick, desperate and lonely,was diagnosed with in June of 2008 and til this day I continue to have many flare ups, the only time I had a one year remission was in 2009 when my doctor put me on remicade, I did wonderful but all of a sudden I start it having bumps filled with puss in different parts of my body so my doc took me off that and put me on humira, that didn't help like remicade but it was ok until again hives covered my entire body, then he again took off that and put me on cimza, and its not really helping, I get many flare ups pain, fatigue, vomiting etc. To make it worst my doctor retired now I have a new doctor he's OK but it took him a while to get familiar with me. I'm on pentasa,tramadol for pain and my doctor thinks that if I get the part of my ileum that's affected cut that I'm going to feel better.I pray that he is right cause my life has been a living hell, Im 5'7 and I was 160 pounds now I'm 124 pounds people are gossiping about me cause I'm so slim and my kids are so affected by this, please can someone just pray for me! Thanks everyone and god bless.

[* Just gave a title to the Subject line - C2]

WELCOME to the forum!

Post Edited By Moderator (CrohnieToo) : 4/23/2013 8:15:40 PM (GMT-6)

Hi Jahirah. Welcome to the forum! I'm so sorry to hear that your struggle has been so hard. I hope the new GI has some plan in place that will get you to relief. If your disease is limited to the terminal ileum you probably will feel better, but you should know that surgery is not a cure. Your Crohn's might come back in a new place, sooner or later. I hope that others here with resection experience will offer some advice.

Have you tried any dietary mods to see if there's some help in that quarter?

Hi Jahirah,

Welcome to the forum. Just going to suggest asking about two new medications. Simponi is being used now for Crohn's, and the other that shows very good promise is Vedolizumaub, (sp).

I don't thing the latter is quite available just yet, but soon. Other than that, I would agree that a resection could be a very good option, although I'm not speaking from experience. Many have enjoyed years of remission following a resection, especially if they only have to take out the minimal amount. Prayers coming your way.