J-pouch surgery - any input??

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Regular Member

Date Joined Mar 2009
Total Posts : 21
   Posted 3/17/2009 1:02 PM (GMT -6)   
I am possibly facing surgery to remove my colon and would appreciate any insight.  Has anyone else gone through this and how was it?  How long in the hospital, how was pain?  how long for recovery?  Why did you have it? 
I am terrified and any input would be great!
UC diagnosed in 2002
Currently taking 400mg Asacol, 9 per day; 100mg of Imuran per day; Remicade every 7 weeks
Mommy of twins
Previously a Promotions Marketing Manager
Husband in law school.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 3/17/2009 3:04 PM (GMT -6)   
I had the jpouch surgery 8 years ago as all meds failed me. I am very happy with my improved life. Your recovery might be different as you are not sick so the adaption period may or may not be more frustrating. Ridding my colon relieved me of active disease, chronic bloody diarrhea, 22 pills per day, and anemia and B-12 shortages. Pain was bad the first few hours after surgery. But I was off morphine at day 2 and only took Vicodin at night after that so I could comfortably sleep on my side. Hospital stay was 7 days for the first stage and 5 days for the second. My surgeries were 8 weeks apart. I encourge you to visit www. j-pouch.org Everyone is terrified to have this surgery. I found that I was able to conquer the fear by educating myself on what to expect. You will learn those tips at the other website.

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 Dec 2008
Total Posts : 74
   Posted 3/17/2009 3:39 PM (GMT -6)   
Suebear - You are great for this board.  Always responding to people immediately with their j-pouch questions.  I think I narrowly avoided the surgery with my recent flare (fingers still crossed), but I always find comfort in your numerous posts about your experience.
Diagnosed '93. 
Asacol, Prednisone, Remicade, Imuran

Regular Member

Date Joined Apr 2008
Total Posts : 191
   Posted 3/17/2009 4:04 PM (GMT -6)   
Suebear I'd just like to agree with fargman,each time I've had a close brush with surgery its been twice now I've been very encouraged and helped by your posts,to see that it really is'nt the end of the world and life goes on a hell of a lot better for most people,I wish I was brave enough to have elective surgery,but in the meantime its great to hear someone being so positive,I definatly believe that your state of mind helps enourmously with these things Thanks again Anna

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 3/17/2009 11:31 PM (GMT -6)   

My daughter had her surgery several months ago. She was diagnosed at 15-1/2 years old. Had 3 big flares. Tried most of the medicines which helped a bit but never kept her in remission. She (along with our input) decided to have the surgery in July 2008. She missed so much of her junior year of high school and knew it was only a matter of time before she flared again. She was in the hospital for step 1 for 6 days. She took the summer to recuperate and adjust to her ostomy. She had her reconnect surgery in November and was in the hospital for 4 days. She was back to school after 3 weeks (could have been sooner but Thanksgiving vacation was part of the time). She is having a great senior year! She is happy, healthy and there is a peacefulness on her face. She takes no meds. She is very active and doesn't stop to think about how her body will react to life.

She was in remission when she had her surgery so she didn't immediately feel "so much better" like most people talk about. But she can feel the change now. She is happy with her decision and is looking forward to college without worrying about her next flare or where to find a close bathroom.

The best advice I can give is to educate yourself. Consult with a surgeon (it doesn't mean you have to have the surgery). Once my daughter decided she wanted surgery, she never looked back. She was very scared (as were we) but she knew it was the right decision for her.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

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