Welcome to the forum...glad you've been reading! I would first find a GI that cares. I am a fan of teaching hospitals, I go to one myself, but there is a better doc...more attentive doc...there, I am sure!
I had a proctocolectomy with ileostomy because of my Crohn's diagnosis. A j-pouch was not an option. Have you thought about
having 'step 1' towards j-pouch surgery? They would remove your colon and place an ileostomy. You could live with that for a long time before you had to make the next decision.
I am sure summerstorm will be along...she chose the permanent ileo route...for her UC treatment. I have a friend who's UC was diagnosed after the birth of her second child and she is just about
2 years into life with a j-pouch and is happy as a clam! But there are many, many stories of the choices we've made for quality of life!
Oh, and I am a mom, too, and my surgery was for my daughter...I want to cry thinking of the years I lost...but I took control, like you are, and now live a happy, healthy, active wonderful life. HANG IN THERE!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!