iPoop - enema taper question

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TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 734
   Posted 10/6/2017 7:44 AM (GMT -6)   
Hey! So my patch went from a 1 inch quarter to a 2 inch segment. I knew the foam wasn't cutting it. So we are going to try alternating Cort enemas and Rowasa. See how things go for a bit and then drop cort and see if I can stay stable on Rowasa. Hold on Rowasa for a bit and then try and taper.

I followed your most recent flare and you had added Rowasa and then doubled it. Can you tell me what kind of schedule you followed? I'm assuming you got stable and stayed on the enemas for a bit...but how long before you attempted tapering? And what did you base it on...meaning when did you think it was time?

We are also talking about adding in Lialda or upping 6 mp...any thoughts here?

I've been fighting this patch for 3 years (the biggest it was was 4 in). The last year has been pretty stable but I haven't been able to get off steroid rectals in 8 months. I'm on a double dose of remicade and 50 mg of 6 mp but its not holding me once I try and taper the enemas. So in reality the steroid enemas aren't bridging anything? Does that make sense?

I know your last flare was similar with similar meds...minus the steroid side of the enemas.

I'm trying to get to a stable point even if I need to stay on Rowasa...but trying to get off the steroid rectals. The baby is coming in 5 months and before she arrives we will decide on surgery or attempting another biologic...but my heart wants off the UC rollercoaster. In the 5.5 years I've had this disease I've had an 14 month remission and then in the last 3 years only 6 months. My body beats out the drugs every time sad

Any input is greatly appreciated.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade, 6mp
Visbiome 450 billion, prenatal vitamin, vit D, biotin, fiber, enemas only if needed

You gotta learn to dance in the rain

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10527
   Posted 10/6/2017 8:28 AM (GMT -6)   
My gasteroenterologist said take rowasa twice a day for 2-months. Afterwards I return to once a day, cold turkey, with no taper.

Before this change, I was seeing blood daily, had morning urgency, and 4-5 bms a day. Afterwards, i was 1-2 bms a day with no urgency or sign of blood. Worked brilliantly.

Sure, i would add back lialda. Cumulative effects of multiple classes of meds is the way I've controlled UC.

I've mentioned raising my 6MP dose to several gasteroenterologists and they seem very uninterested in doing so. Little faith in it, i guess.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

You can't spell sUCks without UC.

TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 734
   Posted 10/6/2017 8:35 AM (GMT -6)   
Thanks John!

Questions- when you were doing it twice a day I'm assuming am and pm? Did you retain am dose all day? And are you still on rowasa daily now? Will you taper that if you are?

My gi feels the same about upping 6 mp but I'm thinking adding lialda back in may help. The patch is right above rectum/sigmoid in sigmoid.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade, 6mp
Visbiome 450 billion, prenatal vitamin, vit D, biotin, fiber, enemas only if needed

You gotta learn to dance in the rain

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10527
   Posted 10/6/2017 8:56 AM (GMT -6)   
Doctor said it made no difference whether I take them at the same time, space them out, etc. I had read mesalamine is active/effective for about 7-8 hours , so I did one at noon, and one before bed most days. When that wasn't possible to do a noon enema, I did two before bed (administer one, then the second immediately thereafter, go to bed and fall asleep on my left side). No issues retaining them. Was a little worried about two at once, but it's just 60ml x 2 =80ml and nothing like a fleet in volume lol.

Yes, 1-rowasa before bed now, plus lialda, plus 6mp, plus remicade 5mgs/kg/6weeks. No plans to taper anything until confirmed in a remission. Just going to stay exactly where I am on meds and doses until the new year to make sure I'm fully healed. Might be in, or darn close to a remission. Just don't want to jinx it by changing anything too soon!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

You can't spell sUCks without UC.

TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 734
   Posted 10/6/2017 9:43 AM (GMT -6)   
Man you have some patience. Please send some my way. Congrats on getting that flare squashed!!!!

I think I'll follow your lead and let the enemas help heal without tapering so soon like I have been. Hopefully I can get down to just rowasa.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade, 6mp
Visbiome 450 billion, prenatal vitamin, vit D, biotin, fiber, enemas only if needed

You gotta learn to dance in the rain

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10527
   Posted 10/6/2017 11:14 AM (GMT -6)   
Good luck! When you're doing well, it's easy to be patient. When you're not doing well then patience isn't at all a possibility as flares totally suck!
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

You can't spell sUCks without UC.

TotesMagotes
Veteran Member


Date Joined Mar 2013
Total Posts : 734
   Posted 10/6/2017 11:45 AM (GMT -6)   
Thank you! I need to get it under control now. Doing anything to avoid oral prednisone while pregnant. It's hell on earth.

Hoping to at least be able to stop rectals by the time I hit the end of this pregnancy. It just gets very uncomfortable especially getting up 2 pee all night. Then the baby is here and up all night then too!!

We will see. Yesssssss flares suck soooooooo bad.
Diagnosed Nov 2012 after birth of first child, Left sided UC
Remicade, 6mp
Visbiome 450 billion, prenatal vitamin, vit D, biotin, fiber, enemas only if needed

You gotta learn to dance in the rain
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