Dumb questions

It doesn't really matter how severe your UC is or was, after having it (even if not flared the whole time) 10 years the cancer risk goes up. So you'll likely have regular colonoscopies (2-4 years, maybe) for the rest of your life. CRC is silent and deadly, often have no idea it's there. Anyone with UC has risk - because your colon cells were damaged, which means they have the ability to mutate. And the risk of flare return is very, very high, because even something like a virus or a whole bunch of stress can trigger it. I had remission for over 10 years and then it returned, and now has gone back into remission.

Colonoscopies suck and I'm sorry!!
-Kristin

Your UC diagnosis is always the furthest it's progressed. You are still proctosigmoiditis. Each flare can involve less, like only proctitis. But that's a snapshot in time, nothing diagnosis changing. We can have no inflammation too, and that doesn't remove our UC diagnosis.

Yes, you should get colonoscopy screenings based on your risk, do discuss with your gasteroenterologist. He/she will discuss when to start surveillance and how frequently your case warrants a repeat. Typically begins 8-10 years after your initial diagnosis, and done every year or two intervals. Sometimes less with decreased risk.

Thank you for the replies and suggestions everyone! It gets confusing reading about it in medical journals, and understanding what is really going on.

Quincy- Originally, I was placed on oral meds 15 years ago. You are probably right in your observations. At diagnosis 15 years ago, I was initially rx’d colazol and rowasa. They wanted to give me prednisone but I declined. (I would consider it, if needed, now that I am older and wiser). The Rowasa seemed not to help much, but I stuck with it for quite awhile. And the colazol made me feel severe nausea all day long. I switched to asacol which also made me feel severely ill. So I felt unable to continue the oral meds offered to me. 15 years ago, I felt so ill and it felt like the GI team only offered medications and no other advice. No diet advice. They told me to go to a CCFA support group, where I met some nice folks with very severe disease. It scared me so much, that I never went back. I felt like there was no hope for recovery with the medical system.

During my first flare, I saw an alternative practitioner in addition to my GI, in desperate attempt to find wellness. She gave me some anti inflammatory supplements, and convinced me to get off hormonal birth control. I also did an elimination diet, and worked on stress reduction, based on her advice. I swear it seemed to help, more so than the meds. The first time I was sick was the worst. My subsequent flares have been fairly brief (Weeks To months) and responsive to canasa. I am grateful for canasa, as it really does help.

Sending well wishes to all of you, and thank you for sharing your feedback and support. I feel so isolated with this illness, and don’t even like to discuss with GI. I’ve been having some other GI symptoms since mid July, but I’m thinking it’s stress and not my UC. I hate going to the clinic, and prefer to deal with things on my own whenever possible. I know that makes me sound like a non compliant person, but I am not that. I’m just a person who wants to be included in the discussion about treatment, and I believe treatment needs to be tolerable and holistic. I am not saying I won’t take oral meds. I just can’t do it if it makes me feel worse than I already do. I hope that makes sense. Thanks again!

Wow Oligodar- That is a great attitude. You are a pro at this, having had 25 colonoscopies already. I’m going for my third, so it’s somewhat new to me. I appreciate your perspective. I hope you stay healthy and well.

Before I was diagnosed with UC I was under the impression that colonoscopies are recommended for anyone over 50 and I was planning on requesting this because colon cancer is in my family. However (lucky me!) I didn’t need to wait after diagnosis.