Humira-Final Results and Next Steps

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mikeg999
Regular Member


Date Joined Apr 2008
Total Posts : 62
   Posted 5/24/2008 7:34 AM (GMT -6)   
Unfortunately, my MD has concluded that I am not and will not respond to Humira to go back into remission. The tell tale signs included my reaction to reducing the prednisone from 40 to 30mg snd the fact that I don't feel MUCH better. Still gong 5-15/day with occasional signs of blood. I thought the fact that I had formed stool for the first time in 5 months was indicative of moving toward remission-I guess not. I am leaning in favor of a permanenet bag and not the J-pouch. For my lifestyle and age (55), J-pouch seems better only from a cosmetic standpoint and not worth the extra drawbacks (longer recuperation, multiple surgeries, and continuing with 5+ bm's per day.

I am scheduled to visit with a surgeon next Wednesday for the the step. I am being treated at the U of C and hope to find a solution that allows me to lead a more normal life again. My greatest fears are the surgery itself- I refuse to have anything other than a general anesthetic and I will not allow myself to be catheterized during the procedure.

I am really scared but don't know any other options.
54 yo male
First flare at age 49


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/24/2008 10:30 AM (GMT -6)   
Mike, I'm sure the plan will be for a general anesthetic. This is a pretty big procedure, and I can't imagine they'd try it under a local. As far as the cath, discuss your fears about this with the surgeon. Generally this is done to prevent contaminating the area of the surgery and decrease the chance of postoperative infection, but perhaps there is a way around it. Check with the surgeon.

Consider taking a list of questions and concerns with you to the appointment, because it's easy to forget what you want to discuss during the stress ofthat consultation. If you haven't already, I suggest you visit the ostomy board at this site as well as the on-line j-pouch information site
(http://www.j-pouch.org/Whatis.html) to educate yourself about the various choices.

I'm sorry you've had such a rough course with this DD, but I admire your determination to get back to a normal life. Good luck, and let us know how your visit goes!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/24/2008 8:42 PM (GMT -6)   
you will def be under during the surgery! it's not a fun surgery, but it's so much better than being sick all the time. I had my perm ileo 4-17-07 and it was the best thing ever.
i don't remember anything of the actual surgery, obviously, but i wasn't really too scared of that. I went in, they put in an IV, took me to the pre surgery, where the nurses didn't like where the first IV was so they changed it, then gave me some kind of happy medicine, lol. The last thing i remember, and this was so stupid, was when they wheeled me into the OR it had windows around it, like a stadium sort of, and it made me think of that episode of Seinfeld with the Junior Mints, so i look up at the dr, and i say, "Are people gonna be able to see my butt up in the air?" and he looked at me kind of funny and he says, well we will have to do the surgery. And i said "No through those windows, like seinfeld and the junior mints." and everyone in there just busted out lauging at me, and hten i went to sleep, but noone saw me, lol.
after that i woke up and it didn't feel good, but the UC pain was GONE and i felt clean that's the only way i know to describe it.
I wish you great luck on whatever you decide
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