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byrd42
New Member


Date Joined Sep 2011
Total Posts : 2
   Posted 9/6/2011 3:01 PM (GMT -6)   
Hi, I suffered from ulcerative colitis for many years trying all kinds of diets, different meds etc.. I finally resorted to taking prednisone which led to MANY complications.....broken ankle, diabetes, high blood pressure, & major weight gain. After my last flare up my GI referred me to a GI surgeon at UW Madison Hospital. From the moment I met my surgeon I knew that the journey I was about to take was the right one. In reality I really was out of options. All my Dr's were in agreement that if the disease wasn't going to kill me the prednisone just might. So, on Aug 22nd I went in for illeal pouch reconstruction surgery with the intent that I would go back for a reversal in Nov. I will be unable to have the take down surgery in Nov,due to the fact that I don't heal as fast as other people----I also have Lupus. The surgeon said even for some reason I was healed that he would not feel comfortable doing the surgery that soon. Before the surgery I was so looking forward to only having to wear the bag for only a few months; however now this news really didn't seem to upset me. I have my good days & bad days. My main issue seems to be with major leaking problems. Yesterday my home health care nurse changed the size of the bag & so far I have not had any problems; however my skin is so red, raw , burning & so painful. The leaking problems have been a real nightmare. I guess a question I have is---when does the bag not consume your every thought? I have been told by SO many people how good I''m going to feel, but I'm not quite there yet & need some reassurance. Tomorrow I see my surgeon for my post-op appt. I have so many questions for him.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 9/6/2011 6:04 PM (GMT -6)   
You're so very new to this! Give it some time and let yourself heal. As for the leaking problems, let us know what you use currently and what your stoma is like and we can maybe give you a hint. After you find the product that works for you, you will not have the skin issues you have now. I think I stopped thinking about the pouch all the time around maybe like 2 months after surgery.

Welcome and you are in good hands here!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/6/2011 6:52 PM (GMT -6)   
it can take a while to figure out a system that works for you, like 80's chick said, let us know what you are using, and we can help!

i think i was at like 4 months when i stopped thinking about it all the time, half the time i forget its there now.
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