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Am I at the last step before surgery

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Ulcerative Colitis
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Posted 9/26/2008 5:20 AM (GMT -5)

Y2K Bug said...
My GI put me on Remicade (infliximab), Humira and Abadacept so he obviously thought there was some mileage in trying all three even though they are all TNF inhibitors.

Unfortunately none of them worked.

confused  

Abatacept is not a TNF inhibitor. It works on T cells. It is currently approved for rheumatoid arthritis and is quite often used when TNF inhibitors fail. I was on an Abatacept clinical trial for UC and unfortunately it didn’t work for me.

 

http://en.wikipedia.org/wiki/Abatacept

 

Posted 9/26/2008 9:06 AM (GMT -5)

bbc said...

suebear said...

Yes for about 2 hours if needed.

Sue


So you can only last 2 hours without having a BM?



How would you say the 6-8 x's per day ranks with others that had the surgery?



Thanks

That doesn't mean she can only last 2 hours without going. It means she can feel the need to go and still wait another two hours after that. 6-8 a day is pretty typical; I'd encourage you to google the surgery and read up on it if you're interested in more. There's some great info on the Mayo Clinic site.
Posted 9/26/2008 10:13 AM (GMT -5)
Peter...you're on your way to be free of UC...I'd ask the doctor for your colon once removed and use it for target practice...lol
Posted 9/26/2008 11:27 AM (GMT -5)
bbc, I was told by my surgeon that after the jpouch has adapted (usually a year after takedown), people will use the bathroom 3-10x/day with the average being 6.
Posted 9/26/2008 1:24 PM (GMT -5)
can some one explain this pouch surgery in a little more gory detail?

I was on Remicade for over 2yrs and it has stopped working. the dose was doubled, I am having it more often (6 weeks instead of 8 weeks between doses) My blood is being tested for anitibodies right now. Next step, try Humira... hopefully that will work
I thought if Humira is a fail, I thought I might have to get an ostomy bag, etc. and I would rather exist on Immodium and Lomotil than have that. But, this pouch surgery sounds doable.
Posted 9/27/2008 8:50 PM (GMT -5)

Jackie,

I was in the exact same position you were just 2 months ago and had taken Remicade at 5 mg for several months with alomost no positive effect.  As a matter of fact, I was the worst I'd ever been with more urgency and everything else, than ever.  So I asked if there was a higher dose that i could try (after having met with a surgeon about having j-pouch surgery) and my doctor said I could try 10 mg but he was doubtful it would do anything.  I said it was worth it to me to give it a try and a since my infusion 7 weeks ago, I'm the healthiest I've ever felt and am 100 percent symptom free...which I've never been since being diagnosed 3 years ago (except while on high doses of prednisone).  So I think giving 10 mg of Remicade is worth a try, but definately consider the surgery if it doesn't seem to do anything for you.  I personally wasn't ready for the recovery of the surgery with two toddlers to take care of, so this is a perfect solution for me.  Best of luck for you!  Oh I also want to mention I think that starting probiotics and SCD (following it as best I can) really helped.

Posted 9/27/2008 8:58 PM (GMT -5)
Jackie, Here are a couple sites that I found very helpful when contemplating j pouch surgery.  One is a video journal on youtube that a young man created after having the surgery.  I found another very well documented video journal on the web ( I think it was on this guy Mark's website that also documents his j-pouch surgery).  Check them out. http://ucstory.wordpress.com/ http://www.youtube.com/watch?v=mEE4KL8FhPs
Posted 9/28/2008 7:12 AM (GMT -5)
Paul, my bad, thanks for the info.
Posted 9/28/2008 7:53 PM (GMT -5)
Humira is worth a shot. I stopped responding to Remicade and was put on Humira. My doctor told me that it's for those who stop responding to Remicade.
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