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11-09-2012, 01:34 PM   #1
BOYZNUS
 
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Join Date: Jul 2012
Location: REDDING, California
Surgery Update

Good morning everyone. Here is my update on my U.C. I was diagnosed with UC in 2008. Tried all kinds of differant drugs. Prednisone, asocal, sulfasalizine, 6-mp, remicade, etc, etc. All to no avail. My life consisted on my recliner and the bathroom. My trips to the bathroom was between 30-50 times per day. I never slept longer than 1 1/2 hours at night before waking up to go. I was finally referred to UCSF and met with a great recum-colonal surgan. She invited my to try a clinical trial of Vedo. Tried it for 3 months,, but didn't see any progress. I asked about surgery, and she totally agreed. I had a total ileoscomy on 10/30/12. Had to stay in hospital for 8 days. Had major issues with high pottasium and low sodium. Also still had blood sugar issues because ot the prednisone. Woke up the day after and felt like a brand new person. The poison was gone from my body, and it knew it. I started changing my own bags after the first day. The hardest part right now is that it feels like I am sitting on a tennisball since they removed my rectum. Am still figuring out a good diet for me since they have me on a low pottasium diet and a "white" diet for the colectomy. And a blood sugar diet. But have kinda figured out a good mix that is keeping the output consistancy consistant. I am emptying the bag about 5-6 times a day, but that is because it is still new to me and I am still very intreged. I still have a drain installed in my side, so that needs emptying 5 times a day also. But I can finally pee standing up. As some of you with UC know, the same muscle that allows you to pee is the same muscle that stops us from pooping. So the only time I was ever able to pee was when I was sitting on the toilet pooping. Getting those muscles to re-activate and work on thier own,(because I have no rectum now), is a new task. And also, (hope this sin't TMI) but I can finally get an erection with out fear of losing my bowels. It has been 4 years since that was possible. Thank God that I have the most wonderful understanding woman in my life to stand by me thru all this. I would recommed the surgery for anyone that is on the fence. It has been a life changer for me. I still get emotional and cry at the drop of a hat. Maybe because of the high predisone doseage for all these years, or because I am finally free from the dreaded UC. Good luck to all of you that are still infected with this terrable ailment. Wished I would have had it removed years ago. Again, hang in there and good luck.
11-10-2012, 09:30 AM   #2
2thFairy
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Join Date: Sep 2010
Location: Dallas, Texas

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I too have had a great experience with colectomy! I would never wish surgery on anyone, but it has been a very good decision for me. I have a J-pouch formed and still have a tiny bit of rectum, but have elected to stay with the ileostomy for now as it quite agrees with me and it is nice to have a break from rushing to the toilet.

Thank you so for sharing your experience!! You might check out the stoma subforum too. http://www.crohnsforum.com/forumdisplay.php?f=46
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
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