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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/9/2008 12:47 PM (GMT -6)   
hi folks! So I have been taking a double dose of remicade for the past 6 months- worked great, for a while. Now... ah well! I had a colonoscopy this past Friday- total mess, about 10 inches of inflammation, tons of pseudopolyps. Lovely. My GI is again recommending surgery, but he had to mention humira first- we could give it a shot, no pun intended, but he's not too optimistic. Nor am I. A big part of me says the heck with it, just go back to the surgeon & get it over & done with. And a tiny part of me is saying "Well, give it a try..." Any of you try Humira prior to surgery? I have to admit, I do read this forum a lot- have been following praying4healings story closely- way to go girl! I know I can do it, get an ileostomy, & be ok with it. So why the hesitation? I don't think I want to risk any more health issues with the meds. I don't know....just wanted to cry a little & say Hello again & let you all know where I'm at right now. sad
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/9/2008 4:59 PM (GMT -6)   
Eva Lou,

Thanks for the update. Hang in there girl. I can't help you with the humira question cuz it wasn't "invented" yet when I had active CD! But I guess that's cuz I'm OLD! Sorry I can't help you but I am thinking of you,

HUGS,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/9/2008 8:11 PM (GMT -6)   
Hi eva lou!

I guess u were an active member b4 I joined healingwell. Its nice 2 meet u! U say uv been following my story, so u know that I put off my surgery for over a year hoping the remicade or something would work.
However, after having the surgery I hope and pray that I didn't put it off too long, and so long that it would hinder my healing of my fistulas. Does ur doc want ur surgery 2 b permanent? I often kick myself bc I feel if I'd had the surgery when the doc first sugggested it, then I'd have it reversed by now.

Unfortunately, I didn't start humira until after my surgery. When the docs finally gave in2 the fact that the remicade wasnt doing a thing. I'd been asking them for it b4, but they wanted me 2 give remicade a chance. I'm praying that the humira will help, but I can't find much literature at all on the subject.

If its something ur thinking u may need, especially if the intent for the surgery is temporary, don't put it off for too long. My doc told me that had I waited much longer I would have lost my rectum and therefore needed a perm ileostomy n e way. If there's a chance for u to save other parts of ur body. Please give ALL of ur options serious consideration.

WELCOME BACK! :o)
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/9/2008 9:12 PM (GMT -6)   
My GI doesn't care if I get a perm ileostomy or a jpouch- he just wants the colon out! I myself would opt for a perm ileostomy. I had surgery scheduled this past November, then an increased Remicade dose worked really well so I stuck with it. But it stopped working pretty darn quick. Now why would you still be on meds like humira after surgery? Because of fistulas, or the potential for problems in the pouch? I have to talk with my GI this week, to go over the scope results, but I know it's ultimatelymy decision. I just don't know if I want to go another 3-4 months doing ok, only to have it all crash down, again! And the potential side effects of Humira (& Remicade) bother me... what if I'm fine with UC for a year or so, but wind up with some sort of cancer? It seems as if the only way to make this all "stop" is to get surgery. Your story interested me becasue I was able to follow it from pre-surgery right thru to post-surgery. And hey, you seem to be doing ok! A lot happier, I guess.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


mama2
Regular Member


Date Joined Jun 2007
Total Posts : 42
   Posted 3/9/2008 9:24 PM (GMT -6)   
Hi just read your post and wanted to say that I had UC and stuggled with all the med (predinsone,yuck, asacol and allgic to imuran and had 15 remicade infusion and that would have try'd the Humira but my GI said most likly it would fale too in a couple of months and have some reaction just take out the entire colon) So I battle in my head like you try it and see if you get any effect or just have the surgery. I did opt for the surgery and am very glad that I did... Feel so much better and can eat and go out now and it feels just great! I hope that it helps and the surgery is not that bad I promise as I am a big baby. If I can do it you can too. Good lUck with which ever way you go....Rebecca
Asacol 400 mg 12 a day
Remicade every 6 weeks
Proton ix
Xnanx
Anitriptalyn


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/9/2008 9:27 PM (GMT -6)   
hey, you just answered my question from your other post! I know I do have to just suck it up & do it. And yeah, it's hard, but so is UC. And being a Mom. And a million other things!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Iron supplement
Culturelle
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/9/2008 9:48 PM (GMT -6)   
eva,

i'm still on humira b/c i have crohns and not uc. so even tho we get the surgery, unlike some uc'ers, we can't "cut out " the disease per say. So my actual reason for having the surgery was to allow my bowels to rest and stop passing stool thru my fistulas, one being a rv fistula which is the worst of all! i can't lie the only thing that really made me go thru with it was the fact that i was passing stool thru my girly parts and the pain became unbearable in my bum. I guess that was God's way of telling me to go ahead lol. I'm just hoping he's as direct when its time for my reversal!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/9/2008 10:03 PM (GMT -6)   
humira wasn't approved for UC yet when i chose my surgery, but remicade had just been, and my Dr talked my into trying that, i was ready to have it taken out that day! and truly, i really wish i would not have tried the remicade, it worked for a while, but, i just wasted more time, and i was constantly waiting on it to quit working.
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