Ahh, you are not alone. I have certainly been there. Everyone's situation is unique however I made the decision to have my colon removed as an elective surgery (recommended by three physicians treating me, and a fourth from an expert in the field who was a friend's medical school buddy). After thirty years of low grade, mostly asymptomatic and barely noticeable Colitis, I started having high risk surveillance screening with twice a year colonoscopy, and eventually for underwater colonoscopies (called EMR, endomucosal resection, a relatively new procedure) to remove carpet lesions after long period of inflammation. Suffice it to say, these procedures were invasive, time consuming and never brought the 'relief' of worrying, plus the samples showed low grade atypic cells, then high grade atypic cells, all felt to be the intermediate steps on the pathway to colon cancer.
Being a brave (stupid and neurotic to my friendship circle, and an unsupportive boyfriend at the time--now long gone) soul
and a sophisticated consumer, I agreed with my care team that having an ileostomy would be preferable to constant screening and then treatment when I eventually got diagnosed with colon cancer. Now I am speaking as a patient, but I am also a physician, I became one partly because I did not much like the doctors who treated me as a 20 something when I first got diagnosed with colitis, but also as an activist and huge believer in prevention. I had friends ask me if I 'could drink bleach' or just kill myself rather than have a permanent stoma. It really taught me a ton about how people cope, and what projections are imposed on individuals who make personal choices because of one's lived experience.
All I can say to you is this: the individuals that I have met over the years because I have had this surgery, have given me a depth and understanding of the human condition, that fifty-five years on this planet, and thirty years as a doctor did not provide. I wish you good luck with your insurer and path forward. Life is a journey in coping with adversity and loss. Metabolizing that is a gift,
Be well, Lee Ann (in Santa Barbara)