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Ulcerative Colitis
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Deacon Blues
Regular Member
Joined : Oct 2006
Posts : 316
Posted 12/26/2020 7:24 AM (GMT -7)
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?
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 12/27/2020 11:38 AM (GMT -7)
Welcome back Deacon Blues. 40 mgs of Pred for 4 years isn't good. Any reason you haven't gotten a colorectal surgery rather than have long term steroid dependency?
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Deacon Blues
Regular Member
Joined : Oct 2006
Posts : 316
Posted 12/29/2020 5:36 AM (GMT -7)
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.
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 12/29/2020 1:10 PM (GMT -7)
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.

Post Edited (Jane974) : 12/29/2020 1:13:15 PM (GMT-7)

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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16194
Posted 12/29/2020 8:11 PM (GMT -7)
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...
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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1660
Posted 12/30/2020 6:05 AM (GMT -7)
I had surgery in 18 and had a bag for 7 months. Bag is not a big deal. Was pretty easy having it
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Deacon Blues
Regular Member
Joined : Oct 2006
Posts : 316
Posted 1/4/2021 3:22 AM (GMT -7)

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!.
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Deacon Blues
Regular Member
Joined : Oct 2006
Posts : 316
Posted 1/4/2021 3:23 AM (GMT -7)

iPoop said...
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...

I had made a scan, mild osteopenia, and I forget where it was located. Not severe enough for supplementation even...
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Jane974
Regular Member
Joined : Feb 2017
Posts : 418
Posted 1/4/2021 11:44 AM (GMT -7)
"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)

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3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1660
Posted 1/4/2021 3:04 PM (GMT -7)
Deacon surgery works. Mine did. The bag is not a big deal I had mine for 7 months. Some days I forgot I had it on. I've been on prednisone many many times in my 32 yrs of UC. I made the choice to have surgery not my Dr. He and surgeon agreed. I didn't want UC to get to a point where I was an emergency case. It was getting bad. I made the right choice. Hope u do also
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