I know its a little late for a reply but I fell on this post and wanted to share the pain and also to share a word of encouragement.
I have Gardner syndrome with high grade dysplasia for the last 5 years even thought I have had the "Surgery". I also have both of my daughter with Gardner Syndrome.
I have my 9 years old daughter that was released this week from here first phase of the IPAA operation. She currently has a temporary ileostomy and she hit every complication possible so far to the point I thought she might not make it. she needed blood transfusion, PICC line, Blood cloth and just pain that no one should ever feel.
It was to the point that I wondered if I made the right decision, but in our family the Gardner syndrome is agressive, Me myself I am back at the doctors tomorrow to see what we can do, I have 50 polyps in my j-pouch and for the last 5 years I have had high grade dysplasia... Will see.
I have had the surgery myself back in 1993 at age 7 and seing her it brings me right back to that day and man if I could I would take that pain from here.
My 9 years old has kept a smile on here face all the way through, and even do life is hard right now and that she is in pain, Here is the quote from my little one "someone out there that has it harder than us and she says it can be worst I could have cancer so let keep positive".
Not sure this helps but you are not alone and that at some point, it will get better if you keep fighting. Easy to say harder to do but trust me I have been there I have been in that limbo on and off for the last 28 years. I am now 33 and with my daughter facing it I just accepted it.
As a parent I feel guilty as hell to have passed that on to both of my kids, now more then ever but life isn't perfect nor easy. But please try to keep a positive attitude it make a world of difference, some days will be harder than other but dont stop trying.
Hope you make it out alright and if you need some one to talk to, we are there.