Long time

Haven’t posted in a long time.
20 years with UC
Asacol, Imuran, humira, Entyvio, Stelara all failed
Been on 40mg/day prednisone for most of the past 4 years, as I taper, the medication fails, then back to 40 mg/day
Been dealing with anxiety, never had it before the steroids
Dealing with moments of madness, which I attribute to high dose long term steroid use...
Presently, hoping Inflectra is the answer
Nurse, working in COVID unit
Going got take the COVID vaccine
United Healthcare is the worst insurance I’ve ever had the misfortune of having
I’m a 56 year old man
Cyclist (despite the UC fatigue and symptoms) 150-200 miles per week, year round, regardless of weather
Drummer, vocalist
Husband, Dad, Grandpa
How are you doing today?

Well, as you can see from my post we are trying all optional meds first, but I fear the surgery isn’t far off. I can’t stand the thought of life with a bag, but I know it won’t be as bad as I am imagining.

Most are candidates for a j-pouch and don't have a permanent appliance/bag.

Have you got a DEXA bone density scan recently? Pred is bone wasting...

Jane974 said...
I personally think that your journey of being on constant prednisone tapering and flairing for the past 4 years, anxiety/madness, and trying so many meds is way worse than surgery. The stress and long-term health impact of all of that to me is like a terrible roller coaster that doesn't end. I'm surprised you have been able to work with all of this. There is no guarantee with surgery either, but at least you would increase the likelihood of a more stable, sane path than LT steroids and med trials.

Yeah, I understand where you are coming from. I have wondered many times myself how long I can keep this up, but I don’t want to take time off work and have surgery and have a bag, it’s been a freaking nightmare thought of mine forever. I’m quite certain that the steroid use and mental processes that are effected by them have caused me my last two jobs. I should probably have FMLA for steroid side effects to be honest, but now I’m at a new job and a person cannot have FMLA coverage until they have been at a job for a full year. What kind of racket is that!.

"don’t want to take time off work and have surgery and have a bag, it’s been a freaking nightmare thought of mine forever. I’m quite certain that the steroid use and mental processes that are effected by them have caused me my last two jobs. I should probably have FMLA for steroid side effects to be honest, but now I’m at a new job and a person cannot have FMLA coverage until they have been at a job for a full year. What kind of racket is that!."

Deacon, In many states, you can take short-term or long-term disability through work. I believe this is different than FMLA. In my state, you can get full pay for 6 months of disability. I believe 6 months is most for ST disability. I know many people who got it via work for less severe issues like Fibromyalgia and pain. You just need a doctors note with impact of your symptoms and you would easily qualify for short-term disability given your severe UC and surgery. Look at your work benefits packet. Almost all jobs have ST disability with pay.

Post Edited (Jane974) : 1/4/2021 11:47:58 AM (GMT-7)