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Ileostomy Reversal Possibility

Thu, May 15, 2014 2:30 PM

Hi,
I'm new here, but I was diagnosed with Crohn's in 1996 at 14 years old. Since then I've been on just about every medication, but was able to have 7 years of remission on remicade. but about 2 years ago after having my daughter, losing my mother and moving across the country (all within 6 months) I started flaring. While I was pregnant I was switched to Cimzia and after our cross country move my new doc decided to switch me to humira because I was starting to have a lot of joint pain. After being on the humira only a few weeks I started flaring hard! That was July 2012 and I have been flaring constantly since. January of this year I had a loop ileostomy, which at the time the doctor said would only be temporary so that a fistula could heal. The fistula is still there but since the surgery I have not had any symptoms. I'm glad to be rid of my symptoms but I cannot stand having this bag> I really really hate it. It leaks all the time and I feel like a prisoner. I had more freedom when I was flaring. In March we had to move again (because of my husband.s job) so now I have a ne GI doc. I saw the new doc for the first time a few weeks ago and he told me that my ileostomy couldn't be reversed because I have crohn's and that he thinks that I should restart remicade. This has devastated me because for the past few months all I have been thinking of is getting the reversal. My question is has anyone with Crohn's had the reversal surgery? Would my disease need to be in remission for a reversal to be done? Should I get a second opinion? I would really appreciate some advice because since hearing this from the new doc I have been really down. I just want some hope that tI can go back to life without this bag. Thanks!

barnet_m2003
Joined May 16, 2013

Sat, August 09, 2014 11:07 AM

Reply posted for juliamay08.

Hi, thanks for replying! I was told that I didn't have to be in remission, that things would just have to look better. But I feel like I've been lied to and I am going to get another opinion. Thanks again!

barnet_m2003
Joined May 16, 2013

Sat, August 09, 2014 9:00 AM

Reply posted for barnet_m2003.

In order for your ileostomy to be reversed you need to be in remission and the best health you can be or it could turn in to a.permanent thing. I would get a second opinion so they can explain that to you so you understand.

juliamay08
Joined Mar 28, 2014

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