Hi everyone! My name is Nicole. I am 30 years old. I was diagnosed with UC when I was 16. I have been struggling this entire time, switching medication and diets, trying to find something that will work. And unfortunately, nothing has helped. I am currently getting Entyvio infusions every 4 weeks, taking Lialda every morning, 9 fiber pills a day, and sometimes maxing out at 8 imodiums a day. I have been having sporadic bowel incontinence since my diagnosis, but it has gotten so bad over the last 2 years that I no longer have any faith in my ability to control my BMs or pass gas. It has severely impacted my life. I don’t eat for at least 24 hours if I’m going to go anywhere other than work. Last November I didn’t eat for almost 3 days because I was in my cousin’s wedding. I put a smile and brave face on, so people can’t tell how much I’m hurting. But last year I came to the point where I was done. I brought up surgery to my husband, parents, and my doctor. My doctor referred me to another GI for a 2nd opinion. She has hit on a few things that nobody else has. For example, apparently my bowel incontinence is due to scar tissue in my rectum from inflammation. She calls it “rectal noncompliance” and has referred me to try pelvic physical therapy. While this is a new recommendation and a bit exciting that she did pinpoint something no one else has, she has referred me to a colorectal surgeon. I have a consult in September. And after 1.5 years of thorough research, I am heavily leaning towards having a surgery. I’m not sure what kind it will wind up being (I do have disease throughout my entire colon). I’m wondering if anyone on here has had a colectomy or Ileostomy electively? If so, do you regret it? Is there anything you wish you had known before surgery? Any advice would be much appreciated ❤️
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