my doctor mentioned thinking about surgery

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Regular Member

Date Joined Feb 2007
Total Posts : 344
   Posted 5/18/2008 8:42 PM (GMT -6)   
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.
UC diagnosed January 05

Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, canasa (tried but got worse at the time - connected or not laying off for now)
Current meds: Asacol 2 - 3x, Aciphex (acid reflux), Remicade - 6 treatments, prednisone boo 10mg now tapering, multivitamin, caltrate 2x a day. probiotic (florasmart right now), astelin (nasal spray) as needed, allergy shots, fosamax

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 5/18/2008 9:07 PM (GMT -6)   

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. 


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

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 5/18/2008 9:44 PM (GMT -6)   
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.
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.

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 5/18/2008 10:35 PM (GMT -6)   
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.

Veteran Member

Date Joined Apr 2006
Total Posts : 733
   Posted 5/18/2008 10:58 PM (GMT -6)   
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.
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08

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