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Permanent colostomy HELP

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Posted 6/6/2013 2:06 AM (GMT 0)
Hello everyone. Please anyone who can help with positive thoughts on accepting a permanent ostomy please reply. I have all sorts of questions and feelings and can't seem to find any posts relating to my illness of rectal cancer with end result being a permanent colostomy with anus removed and packed and sewn. Thanks
Posted 6/6/2013 4:58 AM (GMT 0)
I didn't have cancer, I had uc and that's what led to me ileo. It seems a lot of times people who had surgery becausse of cancer or a car wreck, something that came on fairly quickly, have a harder time accepting it. And that is understanable. Anyway, I guess the biggest positive is you are still alive. For me, it wasn't life or death, it was quality of life. So I am excited about everything, going to a ball game, a car trip a bowl of ice cream.
I don't know how long its been since you had surgery, the first few weeks are really really hard, the pain is bad and the pain meds mess with your mind.
All I can really tell you without knowing much about situation, is that my ileo hasn't stopped me from doing anything at all, and no one ever knows it is there.
Good luck
Posted 6/7/2013 7:54 PM (GMT 0)
Hi summerstorm. Thanks for replying. I had surgery 3/12/2013. I am feeling better after stopping meds. Mine was also quality of life because of radiation treatment had loss of control in the rectal area then recurring tumors in rectum therefore lots of pain. That pain is gone thank god but removal of rectum and anal closure by plastic surgery has created a whole new pain which is declining. Getting used to this is difficult but I am strong and will survive. I have lots of ?'s regarding lifestyle and sex. Any experiences or advice is welcome as well as having other ostomates to talk with .
Posted 6/9/2013 2:53 PM (GMT 0)
What other kinds of questions do you have?
Posted 6/11/2013 12:08 PM (GMT 0)
I woke up after surgery to be told I couldn't have a reversal because of my body's makeup, so I have had to come to terms with having a permanent ilestomy. Some days are great, some are really difficult ..it's coming up a year now and I'm thankful I get to see it ....ask away, we understand what your going though...
Posted 6/12/2013 3:24 AM (GMT 0)
Hi, I"m new to this board. Just had a temporary colostomy on May 24th. Mine was due to nerve damage from a car accident a few years ago. I've been thru several surgeries, 1st was repair torn ligaments that caused intestines to "pancake" or flatten, 2nd to remove scar tissue, 3rd lift vaginal vault & repair enterocele. No feeling in rectum, colorectal pain daily & urge to "go" constant. So now I'm an ostomate.

I went through months of pain before deciding on the colostomy. It took having no quality to my life, just working my full time job & coming home exhausted. Weekends were to catch up on sleep, when my body wasnt in severe pain. Many trips to the bathroom where I had a pail to vomit in front of me while going to the bathroom.

I"m so sorry you had rectal cancer & all you've been through, NuLife. I imagine you must have had a lot of pain with the cancer. Hopefully, with time you'll get through the loss of your organ (it is a grieving process) and feel the relief of beating cancer.

My limited experience? I'm already happy to wake up and not be in horrible pain! The bag I'm getting used to and my first "accident" was at home, so I could laugh about it! I have to be careful with what I eat, still tend to have thick, pasty stools & wont try Milk of Magnesia again (whatta mess when it worked!) Get cramps when my intestines are active, but getting used to it. So worth getting the colostomy and hope you'll feel that way soon, too. Good luck NuLife, wish you the very best!
Posted 6/12/2013 3:57 AM (GMT 0)
LinCee, your cramps will probably subside over time. I remember having that at first too, it has a lot to do with the muscles healing. And the fact that you have a lot more gas at first!
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