At what point...

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bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/20/2008 9:02 AM (GMT -6)   
At what point did you decide to have surgery?
 
I've been lurking on this board for the last month or so as my UC flare has gotten worse. I just had my first Remicade infusion last weekend b/c that was pretty much my only choice. But I'm scared of taking Remicade since it's long-term effects aren't really known, so I'm considering surgery (hopefully j-pouch), too.
 
Any comments on how you decided on your surgery, how your surgery actually went, etc. would be great!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 6/20/2008 9:24 AM (GMT -6)   
I think this would be an ideal question to post at www.j-pouch.org where over 6000 members who struggled with UC made the decision, or had it forced upon them, to have surgery. They would be more than happy to share their stories and offer advice or support.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/21/2008 1:03 AM (GMT -6)   
i got pregnant in 2004 and was in complete remission the whole time i was pregnant. But after my son was born my UC came back with a vengance. Well after dealing with it for over a year, with an infant who was havign to spend all his time in the bathroom, and then the final straw was we went to the beach with him, and i didnt get to go down to see him on the ocean hardly any. I was in bad shape by then, had been in a flare for about five months, came back went to the GI and said, TAKE IT OUT!!! he convinced me to try remicade, which was so dumb, i wish i hadn't done that. It failed, and i got the surgery, got rid of my useless old colon!
and now, i can play with my son, and do fun things, finally have energy to do things, actually i just now got back from a party at a friends house. I spent 8 years of my life to sick to do anything, i never could have gone to a party. It's complete freedom!
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