In hospital, total colectomy probably Tuesday 7/11

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margyt
New Member


Date Joined Jun 2006
Total Posts : 14
   Posted 7/8/2006 12:53 PM (GMT -6)   
Dear Friends...  I am reading as much as I can on the computer at the end of the hall of my hospital wing trying to wrap my brain around what is probably going to happen next week.  Thank you for all of your comments which help so much.  Suebear, your comments are so encouraging.  After 25 years of UC and many of the same treatments you were on, I think this will be a new life for me.  I am nervous about the surgery though.  And the adjusting to the ileostomy...  Any helpful comments?
 
Margy
Prednisone - 10 mg  tapering
Remicade every 8 weeks
In a terrible flare since mid-May (first one in about 4 years, and I'm so bummed)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 7/8/2006 1:41 PM (GMT -6)   

Margy,

It's completely normal to be nervous, no one wants to have elective surgery.  A couple of things really helped me with the temp ostomy, first I looked at it as if it were a science experiment.  More than that, though, I tried to put in perspective that the ileostomy gave me my health back immediatly and for that I was grateful.  I knew immediatey upon waking from surgery that my UC was gone, no more discomfort in the abdomen.  The ileostomy allowed me to start living again, going on walks and hikes; those things were very important to me.  Take advantage of an at-home visiting ET nurse, their knowledge, help, and support in dealing with an ostomy is invaluable.  I wish you as much success as I had, one day hopefully, your UC will be a distant memory.

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
 


margyt
New Member


Date Joined Jun 2006
Total Posts : 14
   Posted 7/9/2006 11:59 AM (GMT -6)   
Distant memory sounds like a very sweet thing right now, Suebear.  Did you go ahead with a pouch after a while?  I am thinking about staying with an ileostomy because of the control factor.  I fear, fear, fear any kind of incontinence!  Thank you for your comments!
Prednisone - 10 mg  tapering
Remicade every 8 weeks
In a terrible flare since mid-May (first one in about 4 years, and I'm so bummed)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 7/9/2006 3:06 PM (GMT -6)   

Margy,

I had my temp ostomy for 8 weeks and then had the reversal surgery.  You can certainly postpone your second surgery for a long time if you want to reconsider.  Be well.

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
 


margyt
New Member


Date Joined Jun 2006
Total Posts : 14
   Posted 7/21/2006 1:05 PM (GMT -6)   
Hi -
Suebear I actually have a permanent ileostomy.  I decided to not deal with worries of pouchitis and I was in so much pain from the UC and tired of running to bathrooms.  After they checked the colon they did say there were dysplastic cells in it, so I guess now I'm just done.  I'll figure that out.  Still really weak from surgery.  But if anyone who has had recent ileostomy would like to e-mail I have mine in the signature.  I really could use some encouragement.
total permanent ileostomy due to UC on July 13
trying to get it all figured out

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