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Unable to taper nightly enemas

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Posted 2/14/2018 9:42 AM (GMT -5)

hateuc said...
Yup to the above. I would up the oral mesalamine and do Rowasa at night and add steroid rectal in the morning (after BM's). I have been on nightly Rowasa (generic) for years and years. I would love to taper but it seems it is not in the cards for me. I would try to keep to the lower end meds as much as possible and save the pred for the severe issues. It is a real double edged sword kind of drug.
Good luck!
B


so Bambi, do tell what are to happen if you don't take the kielbasa nightly ? do you see pink fairies in your dreams ? or worst ???

have you tried upping the Lialda ?
Posted 2/14/2018 8:09 PM (GMT -5)
Stud/Troubed, lol-- Pink fairies sounds awesome! If that was the case, it would be well worth it. The sad reality is the annoying rectal symptoms come back. So I've befriended my enema or as I call him "ennie" and just make peace with it. Maybe one day I can taper--- a girl can dream....

Oh and can't tolerate any higher dose of mesalamine. 2.4 seems to be my limit. I have even tried mixing Lialda with one Basalazide since they are slightly different. No go unfortunately. Would be easier to just take more pills....sigh...
"Bambi"

Post Edited (hateuc) : 2/14/2018 6:12:15 PM (GMT-7)

Posted 2/15/2018 8:16 AM (GMT -5)

hateuc said...

Oh and can't tolerate any higher dose of mesalamine. 2.4 seems to be my limit. I have even tried mixing Lialda with one Basalazide since they are slightly different. No go unfortunately. Would be easier to just take more pills....sigh...
"Bambi"

What side effects you will get on upping oral dose. Currently i've increased my oral dose to 3.6 gm and want to know possible side effects?
Posted 2/15/2018 8:27 AM (GMT -5)

hateuc said...
So I've befriended my enema or as I call him "ennie" and just make peace with it. Maybe one day I can taper--- a girl can dream....

Oh and can't tolerate any higher dose of mesalamine. 2.4 seems to be my limit. I have even tried mixing Lialda with one Basalazide since they are slightly different. No go unfortunately. Would be easier to just take more pills....sigh...
"Bambi"

I think your only other viable option is to go up the medication ladder to something like immunomodulators (imuran/azathioprine or 6MP), in addition to the oral 2.4gs of oral mesalamine to get rid of the enemas. That is likely a trade-off you might not want to make at this point if you are doing well and have only very mild symptoms. Certainly more risks/potential side effects/etc.

Best to be at peace with the enemas and use them for as long as they work well for you, which is hopefully a long time. Many of us do this, and hey stick with what works well for you! Ugh the things we must do because of UC, right? Never imagined it'd require nightly enemas indefinitely, but what can you do ¯\_(ツ)_/¯

Post Edited (iPoop) : 2/15/2018 6:42:05 AM (GMT-7)

Posted 2/15/2018 3:17 PM (GMT -5)
I agree ipoop --sticking with the enemas and keeping lower on the med latter. I am used to them already after years of using. Annoying but the most helpful for this issue for me.

UCMee-- It is strange but if I go too high for me on the mesalamine oral, I get D and cramps (which I know is strange since that is what alot of UC is about ) but for me...I mostly struggle with Proctitis which is constipation, mucus, blood etc... When I increase I get D, which is not normal for me. As soon as I am back to my regular dose...I am back to my normal. Hope that helps!
B
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