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Anyone on Humira after ileostomy surgery?

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Posted 11/13/2012 11:38 PM (GMT 0)
My GI wants me to start Humira again to hopefully prevent the Crohn's from starting somewhere else. Haven't taken anything since my emergency surgery in August. Just wondering if anyone else is on meds after surgery.

K
Posted 11/14/2012 1:52 AM (GMT 0)
I was on Humira after surgery but it had lost its effectiveness. I am now on Cimzia instead. It's a crapshoot as to what you want to do post surgery. Wait for disease to show up and battle it or try to head it off at the pass and take the meds now.
Posted 11/14/2012 2:10 AM (GMT 0)
I'm a UC sufferer with a temporary end ileo, but have 8 inches of colon left between my surgeries. It's acting up, causing problems. Most notably is the IBD related arthritis - it's been debilitating.

I tried some steroid enemas and Pentasa but they weren't doing much for the UC or the arthritis. The rheumatologist recommended Humira (agreed to and prescribed by my GI). So I'm actually starting my induction shots tomorrow.
Posted 11/14/2012 3:02 AM (GMT 0)
Hey Active,

Have you been on Humira before? No side effects for me other than fatigue the day following the injection. I have no colon now....well it's still in there just not doing anything.

Let me know how you make out with the Humira.

Kelly
Posted 11/14/2012 3:57 PM (GMT 0)
I was on Remicade before (Humira had not been FDA approved for UC yet). Remicade always made me tired and after my last full-strength dose I felt absolutely horrible. Remicade was losing it's effectiveness for me so I think my body was going after the mouse proteins. Just speculating.
Posted 11/16/2012 12:06 AM (GMT 0)
Will you be reconnected at some point? Are you considering a proctocolectomy?

I had a temp ileo for 8 or so years and had to be on meds but i am med free since my proctocolectomy (knock on wood)
Posted 11/16/2012 2:54 AM (GMT 0)
I'm going jpouch. Some of my activities lend themselves better to having everything internal. Unfortunately I have 2 surgeries left :(. They didn't want to mess with the rectal tissue too much when I was on steroids so that's why I have so much of my colon left...and two surgeries left.

I took the loading doses yesterday - 4 total. Wow do those sting!!! They were as bad as the heparin shots in the hospital. The visiting nurse had me ice beforehand...and I did ice. I haven't noticed any ill effects yet (knock on wood). My fingers aren't as swollen as they generally are this time of night from the arthritis, so maybe it's doing something already!
Posted 11/16/2012 10:49 AM (GMT 0)
Ohhhhh, I hope so for your sake!! I couldn't do the shots in my tummy before the surgery as it just hurt way too much....I always use my thigh. No one is coming near my "roadmap of scars" on my tummy with a needle now either. I will do mine tonight in my thighs.

I hope it works for you like it did for me prior to the mess I ended up in.

Kelly
Posted 11/16/2012 4:28 PM (GMT 0)
Yup, I'm doing thighs too. Between the Ostomy and the pred stretch marks and the surgical scars...well...there's not much usable skin left!!
Posted 11/16/2012 11:58 PM (GMT 0)
Ouch....I had forgotten how much the shot does sting. Done now for another two weeks.
Posted 11/17/2012 12:36 AM (GMT 0)
Another two weeks...another forgotten memory!!! Well, hopefully.

I just keep telling myself that I only have two next time...and then after that, only one.
Posted 11/18/2012 3:38 AM (GMT 0)
I did a YouTube video on injecting Humira with an ostomy in the abdomen - http://www.youtube.com/watch?v=tJeOnHJIfKg&feature=plcp ignore my echo-y annoying voice.
Posted 11/19/2012 12:59 AM (GMT 0)
In my instance, it's more the sea of stretch marks that is causing the problem :(.
Posted 11/19/2012 1:31 AM (GMT 0)
I don't know why mine hurt so much in the stomach but it was not pleasant. I much prefer the thighs.
Posted 12/6/2012 5:24 AM (GMT 0)
I've been on Humira before and after my Ileostomy. I just don't know how to tell if it is effective since I have the bag..
Posted 6/6/2014 4:40 PM (GMT 0)
I saw my Doc last week and was shocked to learn that I still had to take meds! I was not impressed! I thought now that I had the ileostomy all that crap was over! He put me on Imuran. I haven't decided yet whether or not I'm going to take it.
Posted 6/7/2014 3:18 PM (GMT 0)
On meds too. My surgeon thought I didn't need meds anymore but every Gi I consulted said meds will help prevent recurrence. Honestly, no one know for sure, but I have taken imuran and cimzia without side effects for about a year.
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