Hi Kid, How are you doing today?
I can go into long stories from a very complex and complicated medical past but the bottom line for me was simple. I did not want an end ileo.
I had my first ostomy at age 2 after 6 failed anal reconstructions. They closed it a year later and left me functionally incontinent. Many, many surgeries later things only got worse, school was a nightmare and I had no social life.
I had more failed attempts to rebuild me (2 gracillis muscle flaps) and finally, I had to give up. At 18 I faced an end ileo...but I met a medical giant named Dr Zane Cohen. He gave me a Kock pouch. An internal ileostomy made out of my own guts. The ancestor to the J pouch. It has had many (too many) ups and down, rebuilds and reconstructions but it gave me a life (I had never had one before that).
I moved to Paris, studied, became a professional business coach & professor and lived my life. I had a dozen more rebuilds plus other diseases but after 42yrs I still have my K pouch.
I married, have a family and a life.
It is not for everyone. It is a giant leap of faith to go for another kind of pouch, there are few surgeons out there who do the Kock pouch or its younger cousin, the BCIR...both are internal pouches. Both are continent. Both allow those who cannot imagine a life with an end ileo to have another option. No bags, no flange or stress. Just a button-hole and a tube and your life is yours.
It just gives you the possibility of imagining another option. Not an end but a new beginning.
SO do not despair, do not give up or give in. You are young. Fight for your life, your marriage and your future. If you need more info just PM me.
Sharon
ps. my constantly failed surgeries & rebuilds are due to my disease and not the fault of any surgeon. I have Ehler's-Danlos syndrome. I do not heal, my body does not make the 'glue'. For most normal human beings they would not go through as many redos as I have...just saying.