Postby Lee » Fri Jan 25, 2013 8:49 pm
Hi and welcome,
I'm one of those people that had my rectum removed during that 1st surgery to remove my rectal cancer. As a result of radiation and the damage it did to my rectal muscles, I had no rectal control. I was tied to the house/toilet anytime I ate. It was not uncommon for me to have my first meal of the day at 3:00 or 4:00 pm in afternoon, when I knew I was home for the day. And many morning, I did not make it to the bathroom in time.
I knew I was going to be losing some of my rectum and all of my rectal muscles. My surgeon was willing to recreate rectal muscles by taking muscles from some where else. The goal was after a year of training these new muscles was to get to 3 bm daily, but the truth was I could end up with 10+ bm daily and that would be my normal. Gee, I was already there and did not like it. I would have accept it if that was my only option. But my surgeon sent me to an ostomy nurse and there my husband and I learn about a "colostomy". After we left that ostomy nurse, my husband said, you have choices now, I will support you in what ever your decision is, but the good news is, you do have the option of getting your life back. I wanted my life back, I wanted that" bag". I call my surgeon the next day, told her to take all that she wanted, just get "all" of the cancer.
Because it was my decision, I had very little adjustment period, actually, within weeks of getting it, I was getting my old life back, I spent more time recovering from the surgery, than adjusting to the colostomy. Today I can eat anything and not worry how it will effect me, I can be gone all day and not worry if my bowels are active. Doctors love to pick my brain on this issue and I'm more than willing to talk to them and to my kids friends about this subject.
As a side note, I was home about a week following my surgery, my teenage daughter had a friend sleeping over when I pass the "biggest" and "loudest" fart noise through my stoma. My daughter froze and wanted to crawl into a hole. The friend looked at me not knowing what to do. I explained, I had surgery recently (she of course know this), I told her I was passing gas as part of my recovery and if my surgeon had heard that she would have been very proud of me. Talk about turning an "uncomfortable situation" into a "positive situation". The friend's response was here Dad did the same thing recovering from his last surgery and it didn't bother her at all.
Good luck, for me getting the colostomy was the best decision. I will be celebration 9 yr since my diagnoses in a few months, so yes, my surgeon did get all the cancer it that surgery 8+ yrs ago.
Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!