It's been a long while since I posted, just getting my life back after the ileo 15m go and the decision to go permanent 9m ago.
Although I never suffered with fistula's, my CD was just dragging me down physically and mentally and they were concerned that my health would deteriorate. I was hit like a bolt out of the blue with the suggestion of a temporary ileo. I walked out of the hosital, sat in my car and cried down the phone to my wife. Six days later I was in, a temp ileo had been 'installed' and for me it felt like it was the first day of the END of my life.
What made you decide to have the surgery?
I was so fed up with CD for 15 years and everything it had done to me. My medics suggested surgery because we had tried everything else and it had failed and they feared for my health.
I'm of the stance that I better be on my death bed before they tell me I need a bag. Was this your thinking and it changed?
Whilst I appreciate this is a life changing decision, don't wait until you are too weak to deal with it. Some I appreciate are not given the opportunity to think about things, it happens as an emergency but as you have time, think carefully at ALL options. If you are 'relatively' well you will get over it quicker and be more mentally able to cope with the change
If so what made you change your mind? How long does it take to get over the mental hump? From what I can tell that's the major difficulty in adjusting.
Fully agree, the mental anguish is the hardest to conquer. You do though because you realise that you will never get over it and don't want to become a 'martyr' to the bag. When it's new there is nothing else in life so bad but you live with it because you have to and eventually it becomes part of your life, not your whole life.
Have you had a temp and a reversal? If so what's that like?
Mine was only a temp for 12m, 6m after the temp ileo I 'begged' to have it made permanent because the temp nature of the ileo (bowel bypass) had not been successful and I was still suffering big time.
Do I regret - NO....
Because I live my life much more, feel a lot stronger and I'm not in any pain from the CD at all!
Hope it's not something you have to worry about, but if it does become reality, life is not as bad as people think