Rowasa (Again)

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sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/1/2009 11:55 PM (GMT -6)   
Okay, so my doctor told me to take the Rowasa (I'm actually on the generic) for two weeks, then every other night for a week, then every two nights for a week. I'm supposed to call, but of course it's the weekend. I didn't take it last night, and my anus (I think that sounds as bad as butthole) started hurting, and tonight when I used the enema, omg, that was not comfortable. Also this morning my poo didn't look as healthy as it had been. Should I keep taking it every day or what?
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine every other night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/2/2009 12:54 AM (GMT -6)   
Yes, keep taking them nightly for at least 2 weeks. If you're back to normal, then go to every second night, then every third ... etc.

That's the tapering that will get you to maintenance.

Mornings with Rowasa will change the consistency of your stool....and yes, it will feel weird when you've inserted the medication.

Are you doing the enema and then remaining on your left side for at least half an hour?

Are you able to retain the enema for the whole night?
q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/2/2009 8:47 PM (GMT -6)   
Yeah, I've taken it for two weeks. I was pooing every morning like clockwork. I always stayed on my left side for a half hour or more, and retained it all night, usually more than eight hours. Then when I tried to taper, things weren't as good. I'm just wondering if I should've waited more than two weeks? I mean I was just doing what the doctor said, but yeah.


19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine every other night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/3/2009 3:22 AM (GMT -6)   
Basically, your butt rules and if the inflammation continues when you go to every second night, you have to go back to nightly.

I've done many tapering schedules from short to long and realllly long....

When you say you couldn't taper..do you mean at every second night you were still having symptoms?

Did you forget another night and it might have been 3 nights, etc\?


two weeks to me is too short from an obvious flare....as well is one week on every second night...that one should be at least 3 weeks.

Your doctor's suggestion could be a good one, but not for you at this time. Maybe if your flare was a teeeensy weeeensy one..maybe.

hang tough and make sure you have enough refills available.

I don't think your goal should be to get off them but to find a maintenance.

If you've improved, that's great...but improvement should be consistent for a week at least before moving to the next taper level.

You just did it too fast...no biggie. Been there and humbled quickly enough to go back to the previous taper level or back to square one.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 8/3/2009 4:59 AM (GMT -6)   
I'm going on year of a remission. And what has kept me regular and free from flares is doing both oral and anal medicines. It is up to you really, but, if you can afford Rowasa every night the rest of your life than do it. I tried the tapering game but it's better to hit the most affected area and that's your anus/colon. You might also want to try Probiotics also. But really Rowasa works wonders. I asked my doctor about it and he says its safe. much better than fighting a flare back down after you tame the symptoms down. Good luck and try to stick to it nightly.
Jeff, 24, Diagnosed July 2007 probably had it since 2005 but no terrible flares till July 2007 *Update 3/25/08: Entire Colon UC*
Lialda - 2.4mg 2x Day
Perrigo 1x Every night
Centrum Multi-Vitamin 1X Day
Probiotics by Ethical Nutrients- Intestinal Care (Started Recently During a Long Flare Seems To be Working Wonders) 2x day
Probiotics by VSL #3 (trying it out at 2x a day now)
Slow Fe (Iron supplement)- 1x day
Lexipro- 2x Day 10Mg
In What I Would Call a Remission....As Close to Normal As It Gets


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/3/2009 10:21 AM (GMT -6)   
Definitely go back up to every night for a while...until you've been in a good solid remission for a couple of weeks. Then try tapering to every other night for a couple of weeks (at least), then go to twice weekly. This is what I did and it seems to have worked well. This was on quincy's advice (thanks, quincy!). I think I'll just stay at twice weekly even in remission. I'd like to decrease my dose of Apriso, though.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/3/2009 1:24 PM (GMT -6)   
Yes, it seems twice weekly is the best dosage for me as well....

You're welcome fruitgirl...I know it sucks being on meds, but the goal really is to keep inflammation down to a minimum, and the stuff works.

I did do the 2g for a while but have stayed with the 4g. I may eventually do the 2g with the twice weekly...seems worth trying. I'll ask for that prescription after I get the results of my c-scope I'm having in Sept.

I don't think one needs to stay on nightly enemas forever, tapering and patience is part of the routine if one chooses that route. Finding the optimum working maintenance is the key and I've learned from this forum that twice weekly is the optimum as per studies....so that's what I will do.

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/3/2009 1:54 PM (GMT -6)   
Honestly, the enemas don't bother me that much (and the oral meds not at all). Enemas aren't fun, but they aren't unpleasant for me either...and if they keep me from getting as sick as I was, it's SO, SO, SO worth it!

Are these formal studies you mention, or just what you've gathered based on what people on here have found by experimenting on their own? And why do you prefer the 2g over the 4g? I have the 4g right now. The main reason I want to decrease my Apriso doseage is b/c I'm at the maximum amount now, and I'd like to be able to bump it up if I start to flare. I like knowing that I can increase my enemas if necessary, so I'd like that same option with my oral meds.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/3/2009 3:25 PM (GMT -6)   
The Apriso taper could happen when your symptoms are consistently good and not during a time that you anticipate to be "crazy".

The dosage of one is 1500mg, so I would suggest the tapering start on the day you're going to do the enema.

make sense?

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/3/2009 7:40 PM (GMT -6)   
Okay, just wanted to double-check with more experienced enema users lol. She said if the Rowasa didn't work after two weeks to put me on Prednisone! Hell no! I'd much rather do the enemas for a while before even thinking about Prednisone. And even then, try steroid enemas or whatever, then think about other options. Jeebs.

I'll be alright getting to maitenance although I was only on oral meds before and it'd be nice to keep it that way. But if I can't, oh well, I guess.

Also, no I didn't forget a night. I didn't think this inflammation was all that bad but maybe it's more persistent than I thought.
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 8/3/2009 10:43 PM (GMT -6)   
Well, to put it in a perspective you might get....I just went 2 weeks with this past flare that was pretty well under control in 5 days after starting the enemas nightly again. I was at every 4 nights...but had a mental/emotional crisis during a period of time preceding and during the start of the flare.

My symptoms were extremely MILD...but with definite inflammation because I had my doc take a look this time. I did have bleeding with this one only after multiple bms on the 3rd day of the flare, but no evidence at the visual inspection, which was good from my perspective.

I usually would stay at nightly for at least 3 weeks anyway....but hurried this one. May be a mistake which I'll find out later.


So, the point.......a doctor should never threaten you with short term slow working meds to have you hurry the process and then force you onto pred. You can say you'll do a year with 5ASA oral and rectal if he'll do the prescriptions because you've never given it a fair chance. With the year I mean treating and tapering to find a maintenance dosage that can work for you.

You can also say that you've read that twice a week enemas is a good maintenance based on some studies, and that's what you're willing to try.

In the 20 years, even at my worst, my doctor NEVER suggsted pred. Another doctor did to whom I replied I was grateful he wasn't my doc.

Once I had to use the enemas for 4 months nightly....my doc's response was that if there's nothing else going on as per the stool samples I had done during that flare, I was to be patient. I was, and eventually things levelled out.

I've had lots of emotional ups and downs. Depression really slays me...more than the UC, and issues truly affect me while figuring them out. I'm grateful to have an awesome husband of 30 years and a great doc. If only I could just stop my mind for a while, them my butt would hopefully follow suit..lol!

Anyway, while pred is a miracle med, I don't believe it's really a long-term thing for flares with UC. If you can do the 5ASA route and be patient without any side effects, it will be helpful.

Some see it as a treating a symptom, but I see it as more than that...if I'm still cancer-free and without other issues including PSC exacerbation...it's a good thing.

Again...hang tough. I hope you can say to your doctor you're willing to try the 5ASA in a fair and continual manner as long as he prescribes refills for the enemas.

It's an experiment for YOUR future.....it might pay off.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 8/3/2009 11:10 PM (GMT -6)   
Well she better say it's okay or else I'm switching doctors. I doubt she'd even be asked. I have to do everything through a nurse who only works by using an answering machine and not returning my calls. Agh! I think I'm going to just find a new doctor now and make an hour trip every time.

I seemed to deal better emotionally with all this stuff when I was hopelessly single. Now that I found someone who's like, perfect, I let myself be affected more. Not that I'm complaining XD I guess now I just care what happens to me and he doesn't ***** at me for complaining like all my other boyfriends did. I'm sure if they'd had this they'd have whined a lot more than I did.

Sorry for the vent XD

One more question, because I forgot, but can Rowasa make your hair fall out? I seem to be losing more like I did when I was on pred. I have so much hair it doesn't really matter but I'd like to know if it's that lol
19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

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