Stopping the Rowasa enemas????

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munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/16/2008 7:16 PM (GMT -7)   
I was doing the Rowasa every 5 nights.  Everything has been going real well for me.  I'm thinking of stopping the Rowasa and seeing how things go.  I haven't done one for about 10 days now.  I'm prepared to start them again if I see any negative changes.  Just wondering if anyone is using these for maintenance and if so, how long?
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 6/16/2008 7:23 PM (GMT -7)   
Try every other day for awhile...you can use rowasa indefinetly.

Rowasa'shave been great for me...a real life saver.

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/16/2008 7:36 PM (GMT -7)   
I had cut them down to once every 5 nights, I wouldn't want to increase to every other night. They have worked great for me, I just wonder if I will see problems if I stop them completely.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30085
   Posted 6/16/2008 10:23 PM (GMT -7)   
They're supposed to be tapered properly..not to stop abruptly. Did your doc suggest that process or did you do it yourself?

You're kind of doing it a bit backwards....but eventually you'll see the value in doing the tapering more to one that will allow you to find your maintenance level.

I've used them for over 19 years....and will use them until I cannot any longer.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Knitty_Cat
Regular Member


Date Joined Jun 2006
Total Posts : 105
   Posted 6/17/2008 3:49 AM (GMT -7)   
Hi Donna

I've experimented with slow tapers and then coming off the Rowasa totally but what works best for me is to always do 2 a week for maintenance. I got the idea from this article

http://www.gastroendonews.com/index.asp?section_id=202&show=dept&article_id=9173

page 5 (free registration required for the site but it's well worth it - great site).

I've been doing this for almost a year now and haven't flared. I'm pretty impressed with that because I always flare in the February to May time of the year (no idea why). So my advice is to keep on a maintenance dose of the Rowasa. Hey, if it works for you then keep with it!
Left Sided UC
Maintenance Meds: Salofalk tablets (Asacol) 2 tablets 4 times daily (4gm total) plus 2 Salofalk foam enemas per week.
Flare Meds: Salofalk enemas and/or Colifoam
Oat bran 60grams daily, Metamuscil and multivitamins


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/17/2008 5:16 AM (GMT -7)   
quincy, I don't think I'm doing it backwards, maybe the way I wrote it wasn't correct, so I'll explain better. I originally started doing them every night, then after a month or so, every other night, then went to every 3rd night, then every 4th night, got to the point where I was doing it once every 5th night. At this point I'm thinking " If I'm only doing them once every 5 nights, do I really still need this for maintenance or what"? I know I should be happy that I'm doing so well and I am very happy about that, after this last flare, I felt like I'd never be in remission again. Maybe I shouldn't change anything, but if it's one less med to do that maybe isn't necessary at this time, it's tempting to stop, ya know what I mean???? Don't think I'll ever stop my pills again.
Knitty _Cat, are you still doing a maintenace dose of these? If so, what maintenace dose works for you? Thanks everyone, your input is really appreciated. Isn't this just such a great site?
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 6/17/2008 9:33 AM (GMT -7)   
When you said "every 5 nights" I thought you meant 5 nights per week and that's why I suggested evrey other night...

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/17/2008 9:58 AM (GMT -7)   
bbc, sorry about that, I guess I didn't do a very good job explaining it. 

*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema 2 x a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/17/2008 10:11 AM (GMT -7)   
Nah, I understood it, lol. I would continue to take them. You are on the right track to figuring out your maintenance dose. If you can get by on doing that one time a week and keeping syptoms down, it sure beats 2 years worth of flare.
Proctitis DX 1998
Lialda 1x day
Hydrocort Enema As Needed


quincy
Elite Member


Date Joined May 2003
Total Posts : 30085
   Posted 6/17/2008 12:00 PM (GMT -7)   
Hi....yeah I thought you meant cut from nightly to every 5 nights...cut...not meaning tapered.

Yes, you did it how I would suggest....and you maybe should have continued to taper to one every 6 nights and then one a week. But I do understand your wanting to not take meds. Been there (long ago)

I think we all need to try out how we do without meds.....if you're not flaring with NO symptoms.....you might just be fine.

My suggestion.....try it.....but DO start back if you are noticing any constipation, excessive gas or upper gastro symptoms/pain..asap.
That would be the very first signs of low in the rectum inflammation.

I have tried it on occasion in the "early" years....but I'm intolerant of symptoms and when life happened with lots of stress my flares always presented. I started treating early and have found maintenance dosage was what my symptoms dictated.

I have, however, started the 2gram dosage of Salofalk....that's something you can consider to start at this time...as maintenance once a week, and maybe the 2gram will be enough to deal with your flares rather than the 4gram.

Keep us posted.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/17/2008 12:38 PM (GMT -7)   
hmmm, never thought to do 1/2 the enema, maybe I will try that every 5th day for a few weeks, then stop and see what happens.  I will definitely start doing them more often if I see any changes.  Thanks :-)
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once every 5th day. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


Knitty_Cat
Regular Member


Date Joined Jun 2006
Total Posts : 105
   Posted 6/17/2008 6:51 PM (GMT -7)   
Hi Donna

I still do 2 enemas a week, no matter what. Thursday and Sunday nights! This has been working for me so well that I'm not intending to stop anytime soon. In fact, it works so well for me that I couldn't even be bothered to experiment and see if I could get away with one a week or whatever, I just love the results I'm getting with my current med regime. I'm doing pretty heavy triathlon training, travelling for work and for holidays, had a bad cold recently, yet my colon hasn't skipped a beat since I started the twice weekly enema routine. I use the Salofalk foam, which delivers a 2gm dose of 5ASA. When I do use the liquid enemas, I also use the 2gm ones.

The enemas get the drug to exactly where it is needed and where it can help. I think they are great for maintenance!
Left Sided UC
Maintenance Meds: Salofalk tablets (Asacol) 2 tablets 4 times daily (4gm total) plus 2 Salofalk foam enemas per week.
Flare Meds: Salofalk enemas and/or Colifoam
Oat bran 60grams daily, Metamuscil and multivitamins

Post Edited (Knitty_Cat) : 6/17/2008 7:59:56 PM (GMT-6)


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/18/2008 11:10 AM (GMT -7)   
Thanks Knitty_Cat. I'm glad you found something that works so well for you, that's awesome. I have excellent results with 1 every 5th night, but I may try half the enema instead of the full for awhile. I know ......I shouldn't fix it if it ain't broken...........It's just so tempting. I was in a very long remission before with no meds at all, it's tempting to drop the Rowasa. If I do thata eventually and it goes well, great. But I will continue to take my sulfasalazine daily................
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once every 5th day. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30085
   Posted 6/18/2008 12:36 PM (GMT -7)   
Hi...I didn't suggest half the enema....I meant to get a 'script for a 2 gram dosage...it's still the full amount of liquid, just half the dosage of the med. I don't think I'd keep a bottle for a week after using the nozzle up my rear....it could cause potential contamination of the remaining contents.



Knitty_Cat...wish we had the foam enemas here in North America....Salofalk only comes in liquid in Canada...tsk....I'd definitely prefer a foam.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 6/18/2008 5:27 PM (GMT -7)   
OMG, that's too funny Quincy.......No, I would never save half after it's been stuck where the sun don't shine either. I'd really be looking for trouble, wouldn't I? I have a good supply of them, I'd just throw the other 1/2 away. Thanks for the concern anyway.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once every 5th day. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin....
 


hannah's mom
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 6/19/2008 5:24 PM (GMT -7)   
I agree with the other folks. I was told by two GI dr's this past week-that you need to taper the enema's. my dtr. has been on them for over two months. they told her to do every other night for several weeks and then if she wants to stop them, it would be ok. everything that i have heard or read seems to indicate that it's beneficial to stay on them minimum one a week. makes sense. i am going to have her continue to do at least once/wk. why not? the ibs specialist in our area said that even one a week can keep you in remission. it sure beats steroids, 6mp and countless other serious medications.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30085
   Posted 6/19/2008 10:08 PM (GMT -7)   
munchkindd said...
OMG, that's too funny Quincy.......No, I would never save half after it's been stuck where the sun don't shine either. I'd really be looking for trouble, wouldn't I? I have a good supply of them, I'd just throw the other 1/2 away. Thanks for the concern anyway.

tongue
 
......maybe rather than waste the $$ on using half an enema....use the whole thing.  I'd rather stick it up my butt than throw it out.  More of a benefit to me that way.
 
Get a 'script for the 2g.
 
quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 6/20/2008 4:36 AM (GMT -7)   
The only way to know what is best for you is to try it. My doc suggests only taking them when I need them. So, if I ever feel well enough to stop them, I will. He thinks the more you take, the more your body will "get used to them".
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


quincy
Elite Member


Date Joined May 2003
Total Posts : 30085
   Posted 6/20/2008 11:36 AM (GMT -7)   
NOT!
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 6/20/2008 1:15 PM (GMT -7)   
I have been using half of the enemas for years now, and using the same tip for 6 months (I found a nice smooth one I can't replace, lol). It's really not a big deal as long as you are not sucking crap back up in it before you pull it out. They don't sit for a week like yours probably would though...... 2 days max usually.
Proctitis DX 1998
Lialda 1x day
Hydrocort Enema As Needed

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