J-Pouch-A-Go Go,
I think I understand a lot of what you are going through. I got fibromyalgia pain, etc. before my surgeries and have been dealing with that flaring and all of my post surgery J-pouch problems for 2 1/2 years.
I was recently approved for Social Security Disability benefits with my first application. They consider my health problems unlikely to improve as the said they will review my case in 5-7 years.
I'm 56 so we are close in age too. My husband is getting tired of all of this as well. I'm not "fun" anymore. Our kids are grown and moved away so this is the time we should be having "fun". 12 years is a long time, I don't think I could be as good as you are and wait that long.
You are not alone...