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my doctor mentioned thinking about surgery

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Ulcerative Colitis
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Posted 5/19/2008 1:42 AM (GMT 0)
what do i do now?

i was set against it...but i don't know now. the research i've done so far seems like i will likely have just as much hassles with it - am i just kidding myself? i know i have to decide myself...i'm just stressed about feeling crappy and not getting anywhere again and being on stupid prednisone which barely helps. sorry, this is super negative. i'm living my life and not letting this hold me back - it just wears on me.
Posted 5/19/2008 2:07 AM (GMT 0)

I had 2 very bad years with UC after a 10 year remission.  I had surgery.  From my experience life without a colon is far better than life with a colon.  Is it perfect?  No.  But life without a colon is by far better for me.  No more meds, no more illness, no more canceling vacations and commitments.  Getting the surgery talk from a GI is serious.  I remember mine.  Do your research on all of your options, both surgical choices and medical treatments. 

Sue

Posted 5/19/2008 2:44 AM (GMT 0)
Most people who have surgery do have a good quality of life, and I've seen very few people ever say they regretted surgery. So it's not the end of the world and there is life after colectomy. Prednisone is a seriously bad drug to be on long-term, and it sounds like you've not had much luck with other medications either. Pred usually becomes less effective over time also, so it may not provide you relief forever.

I agree with Sue. Talk with a surgeon, get an opinion from another GI if you think that's appropriate, read up on the subject, then decide what's best for you. I do remember how I felt when my GI said "I hate to see you lose your colon over such a short segment with UC." Fortunately, Remicade has put that off for me, but it still may be in my future.
Posted 5/19/2008 3:35 AM (GMT 0)
i am not sure what kind of hassles you have heard people having with surgery, i have had an ileo for over a year now, and i wouldnt' go back to going the regular way for anything! it's super easy! i mean surgery isn't fun, it never is, the recovery is kind of slow, but after a while, it's so much better. I woke up from surgery, and even though i felt yucky from the surgery, the UC pain was GONE and i felt clean that's the only way i can describe it. I knew that the pain from surgery was temporary but that the UC pain was forever. it is a hard decision and it took me 8 years to do it, and looking back i shoudl have done it hte first day i saw blood, i wasted so much time. come over to the ostomy board and read some of our posts, if you haven't already, that may make you feel a little better.
Posted 5/19/2008 3:58 AM (GMT 0)
Sorry you are having a rough time. I am assuming some of the hassles you are talking about are how after the J pouch it is normal to go 6-7 times a day? I would meet with the surgeon just to get some more info about surgery, but remember that it is your decision what you want to do. My GI has been talking about surgery for me for years now, but now he has been changing his mind about it... so what I would do is look at what meds you haven't tried yet and make a plan with your GI about what will be the next steps in a worse case scenario.
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