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Ulcerative Proctitis
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Ulcerative Colitis
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gateway43
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 43
Posted 1/26/2020 1:52 PM (GMT -7)
Curious how long others wait to change meds when starting a flare? On mesalamine Enema which had worked. What could be added to this to get better. Have 7 to 8 bms a day and the urgency. Thanks
chocotofu
Regular Member
Joined : Aug 2019
Posts : 35
Posted 1/26/2020 2:45 PM (GMT -7)
I have UP. I was in a mild flare (up to 12 bms per day) for about
six months while taking Canasa. When my flare became very severe (awful pain, couldn't eat), I finally saw my gastro who put on on 40mg of prednisone and Apriso. The prednisone worked like magic. My bms went down to 1-2 per day and I felt AMAZING. Prednisone for me was like being on cocaine and I had no negative side effects.
I tapered the prednisone for 6 weeks while taking the Apriso, which kicked me out of the flare.
Crazydad
Regular Member
Joined : Sep 2017
Posts : 67
Posted 1/26/2020 6:20 PM (GMT -7)
How long did it take you to go to 1-2 bms on prednisone, chocotofu?
quincy
Elite Member
Joined : May 2003
Posts : 32546
Posted 1/26/2020 9:39 PM (GMT -7)
Gateway.....explain how long on the enemas nightly?
q
gateway43
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 43
Posted 1/27/2020 12:40 AM (GMT -7)
Been on enemas about
3 years nightly. I have skipped a day at times in the years though.
nakamura1967
Regular Member
Joined : May 2018
Posts : 113
Posted 1/27/2020 1:59 AM (GMT -7)
The enemas are what helps best in my sons case. I have noticed you need to keep on them as long as it takes.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 1/27/2020 6:27 AM (GMT -7)
Most meds show an initial sign of working within 4-6 weeks and achieving a remission can take another month or months thereafter. Are you only on the enema? You should also be on an 5ASA/Mesalamine oral pill as well: asacol/lialda/pentasa.
gateway43
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 43
Posted 1/27/2020 6:38 AM (GMT -7)
Yes, only Enema since diagnosis
quincy
Elite Member
Joined : May 2003
Posts : 32546
Posted 1/27/2020 11:52 AM (GMT -7)
Nightly for 3 years? Is this 1, 2, or 4g enemas? Foam or liquid?
When was your last c-scope, and what was the pathology result and the extent
location of your UC?
Seems your doc isn't taking this seriously enough.
q
gateway43
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 43
Posted 1/27/2020 3:36 PM (GMT -7)
Yes, 3 years. 4g liquid and last scope also 3 years ago.
Mixed acute and chronic inflammatory infiltrate, crypt distortion and regeneration as well as granuloma. Scattered granulation tissue. Consistent with IBD
Extent is 20 cm.
Thanks for advice all
quincy
Elite Member
Joined : May 2003
Posts : 32546
Posted 1/27/2020 10:08 PM (GMT -7)
Hi...was there a breakdown of where the biopsies were taken and results? Meaning were there any taken throughout and in cecum and terminal ileum?
Have you been given the option of steroid enemas, immunosuppressants...etc?
q
gateway43
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 43
Posted 1/28/2020 6:16 PM (GMT -7)
Yep, breakdown of biopsies in other areas nothing noted.
I'll see Dr in 2 weeks
quincy
Elite Member
Joined : May 2003
Posts : 32546
Posted 1/28/2020 10:24 PM (GMT -7)
Good regarding your results and that your appt is soon. Make a list of questions and requestsmfor more meds. You should really be on both oral and rectal meds.
q
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 1/29/2020 7:34 AM (GMT -7)
The presence of granulomas is very curious (it's kinda a crohn's or crohn's-colitis thing). The rest sounds like UC. I'd definitely be on something oral, like lialda/asacol/pentasa.
gateway43
Regular Member
Joined : Missing Key Value : en-US, 577 2017
Posts : 43
Posted 2/14/2020 1:56 AM (GMT -7)
Update
Placed on prednisone and started working within 2 days
Dr resistant to place on oral med yet I convinced him. Now on lialda as well
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16180
Posted 2/14/2020 6:57 AM (GMT -7)
Good to hear, hope it works well for you!
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