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Ulcerative Colitis
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Posted 1/26/2020 8:52 PM (GMT 0)
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
Posted 1/26/2020 9:45 PM (GMT 0)
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.
Posted 1/27/2020 1:20 AM (GMT 0)
How long did it take you to go to 1-2 bms on prednisone, chocotofu?
Posted 1/27/2020 4:39 AM (GMT 0)
Gateway.....explain how long on the enemas nightly?

q
Posted 1/27/2020 7:40 AM (GMT 0)
Been on enemas about 3 years nightly. I have skipped a day at times in the years though.
Posted 1/27/2020 8:59 AM (GMT 0)
The enemas are what helps best in my sons case. I have noticed you need to keep on them as long as it takes.
Posted 1/27/2020 1:27 PM (GMT 0)
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.
Posted 1/27/2020 1:38 PM (GMT 0)
Yes, only Enema since diagnosis
Posted 1/27/2020 6:52 PM (GMT 0)
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
Posted 1/27/2020 10:36 PM (GMT 0)
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
Posted 1/28/2020 5:08 AM (GMT 0)
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
Posted 1/29/2020 1:16 AM (GMT 0)
Yep, breakdown of biopsies in other areas nothing noted.

I'll see Dr in 2 weeks
Posted 1/29/2020 5:24 AM (GMT 0)
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
Posted 1/29/2020 2:34 PM (GMT 0)
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.
Posted 2/14/2020 8:56 AM (GMT 0)
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
Posted 2/14/2020 1:57 PM (GMT 0)
Good to hear, hope it works well for you!
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