when to call the surgeon?

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Regular Member

Date Joined Aug 2006
Total Posts : 28
   Posted 2/13/2007 11:32 AM (GMT -6)   
Just so you know, I'm 26yrs old and diagnosed with pancolitis (UC) in Jan 2006.  I've been in and out of flares trying Asacol, Rowasa, Prednisone, and Remicade.  All these things aren't working any more.  I'm trying Entecort and Colazal now just to try something different.  I am trying to avoid 6mp/imuran/cyclosporine.
Because of this, I have now taken about 3wks off from work.  Now, I'm having 3-4 bloody BMs/day with some urgency.  I have been flaring since Jan 5th.
I know it's a very personal decision, but what was the tipping point for many of you for calling the surgeon?  I know that many of you had emergent colectomies, and I'm sorry to hear that.  I just feel very frustrated and don't know what to do to get better.  I'm wondering if having an ostomy is going to be a lower quality of life than living with the mild-mod symptoms that I have now.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 2/13/2007 3:51 PM (GMT -6)   
For me it was twofold:

1. I had lost my quality of life.
2. I was far more afraid of long term steroid use than I was of surgery.

When I reached both of those decisions I called for a consultation.

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

Regular Member

Date Joined Nov 2006
Total Posts : 23
   Posted 2/13/2007 4:04 PM (GMT -6)   
When it became apparent that I was non-responsive to medication. I was having 10-20 bowel movements per day, urgency, and I had lost a tremendous amount of weight. I decided to have surgery when I realized that it was my best hope for a somewhat normal life.

Veteran Member

Date Joined Feb 2006
Total Posts : 629
   Posted 2/14/2007 4:14 PM (GMT -6)   
i tried every med around, then the pain got so bad i couldn't work. 3 weeks later i was sitting in front of the surgeon. and now here i am, much higher quality of life and not taking any meds. well you know where i stand on this subject already :)

Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis

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