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UPDATE!! I am starting rowasa today...

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Ulcerative Colitis
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Posted 1/11/2010 5:17 PM (GMT 0)
So next stage is here for me.... promoted from canasa to rowasa.. This is what quincy always advised me and now finally i have the prescription of rowasa... this was something i myself wanted to start - i m sick of this flare up! i will be trying it once nightly for 1 week first.....nothing for morning only oral lialdaX2. Hope it works.
will keep u posted!
Posted 1/11/2010 5:20 PM (GMT 0)
I'm glad you're starting it, but why only for a week? That's a really short time, IMO.
Posted 1/11/2010 5:26 PM (GMT 0)
This stuff worked amazingly well for my 1st flare; not so much on my 2nd after I tried Hydrocortisone enema which absolutely screwed my system up hardcore. Even now I will wake up in the AM with a loose BM and a tad of blood...and it gets better during the day.
Posted 1/11/2010 5:35 PM (GMT 0)
@fruitgirl: i guess 1 week is trial period.....if this works then i will get my prescription for a longer time....how many days r we supposed to use it...is it like canasa - for months? they r pretty big tubes/bottles.... i m kind of scared looking at them :-)

@ lol : i will try to keep hydrocortisone away as long as possible. The NP wanted me to start it but i pressed for Rowasa.
Posted 1/11/2010 5:43 PM (GMT 0)
Well, it could take a week for you to start seeing an effect...if I'm remembering correctly, I saw an improvement after a couple of days. My personal belief is that you should use it every night until you've been in remission for a couple of weeks. Then, go to every other night for a few weeks, then to twice weekly for maintenance.

Don't be scared of them! I've honestly not had any problems holding them, even when I was in a severe flare when I started using them. If you find you're having trouble holding it, try using half an enema at a time.
Posted 1/11/2010 6:59 PM (GMT 0)
I agree with fruitgirl that you should give it a try for a couple of weeks at least, as sometimes it can take longer than a week to show any benefit.
Posted 1/11/2010 7:09 PM (GMT 0)
Hello!

Don't be afraid of Rowasa... I was at first but ended up using them for about 2 1/2 years, most of the time nightly, but I was able to taper down every 3 nights at one point.

When you first insert it, you might feel the need to expel it, but if you just focus and breathe, and keep those cheeks together.. lol.. the feeling passes in a few minutes and then you don't even notice that it's in there :)

The first few times I used it, I wasn't able to keep it in all night because I was in a pretty good flare, but after a few days, it was no problem at all and even the "expelling" feeling went away and it was no big deal at all to use them

Hope this helps :)
Posted 1/11/2010 7:36 PM (GMT 0)
Good luck. There are only two drugs that work for me: Rowasa & Prednisone.
Posted 1/12/2010 7:31 AM (GMT 0)
WooHoo!!!! Yes, I'm pleased you finally got them.

Remember that the suppositories have their place and they can still be part of the regimen if you need them.

It'll take a few times for you to get the hang of it....and do as Susie suggested regarding if you have the urge after inserting the med. Lie still, grunt, squeeze, focused breathing, squeal or whatever...it will pass. Maybe you won't even have that.

Oh, keep a garbage container next to your bed so that you don't have to get up to throw it in the trash.

Keep us posted....FOR SURE!!!! lol.

quincy
Posted 1/12/2010 1:00 PM (GMT 0)
Remember to warm it up to your body temp. I do this by holding it under my arm pit while I lie down and relax.
Warming it up helps a lot when you are first starting to use it and for me it helps me retain it.
Posted 1/20/2010 5:43 PM (GMT 0)
Thanks for your advice & sorry for the delay in updating.... I was not able to start Rowasa till Monday this week.... so it has been only two nights with Rowasa yet.

My First Rowasa: I wanted to rush but kept strong as you all suggested and after half an hour the urgency went down but not completely...it troubled me whole night but i kept holding it in..... i took all precautions.... put layers of folded spare bedsheet under me - just i case there was an accident at night it would not reach my mattress lol........... Cool!! nothing happened!

Next day: Blood in stools was present and the early part of the day was not good but by the evening it was better.

My second Rowasa: I wanted to rush again but was able to control...
Today morning: Again blood in stools.... and feeling the urgency for second trip already.. :-(

Well... dnt know if Rowasa will help me or not...but i wish it helps!!
Posted 1/20/2010 5:57 PM (GMT 0)
Patience....what you describe is normal. Try not to set yourself up mentally that it's not going to work. No time alotted will ever be enough if you're expecting the results in 2 days.

i've been on the Salofalk enemas for 4 months nightly....yep, I even asked the doc if I should be on pred and he looked at me like I was crazy. That was many years ago and during a very distressing time in my life.

I don't know what lies ahead for me regarding meds, but I'll use the Asacol/Salofalk enemas till my dying day if I need to.

Congratulations on your "retention" skills....already that's awesome!

Keep us posted,
quincy
Posted 1/20/2010 6:37 PM (GMT 0)
thanks quincy! Yes Patience - i have learned that from you :-) ... i had upped Lialda X3 daily for a couple of days but then decided in need to be patient and came back to 2 a day. Now struggling to get flare under control using Rowasa.

I have one worry... i feel medicines work on me for a couple of month and then are no longer effective on me..In the beginning, just one canasa at night was great for 2 months.... then even 2 times a day did not work... added LialdaX2 - worked great for 3-4 months then stopped working..... now rowasa is new... and i am worried that it might end up same way .... any suggestions on this? i want to stay away from steriods but dnt know if i will be able to !
Posted 1/20/2010 7:04 PM (GMT 0)
Hi Sappos! Good luck with your Rowasa. I love mine...okay, who are we kidding, I don't really love it, but I LOVE how it makes me feel. Been using Rowasa for nearly 10 years now.

If you can't hold it in, there is nothing wrong with expelling it and putting in another one. I have to do this usually at the beginning of a flare every once in a while. It just means you go through more Rowasa, so I only expell it when all other methods of trying to keep it in have failed (grunting, deep breathing, doing kegels - as I say butt kegels - arching my back (while still laying on my side) and staying still). I only used one at night when I was first diagnosed, but as my UC went from proctitis to UC, and landed me in the hospital a few times, my doc has instructed me to use a Rowasa in the morning and at night when the flare is really bad or I can't get it under control. When I go from 1 to 2 a day, I will have to call the doc so he can write me a new script so I don't run out

As for only giving Rowasa a week trial period, I am really surprised your GI is telling you that. It can take up to 21 days to see results. I would really recommend NOT giving up after 1 week...it can take up to 3 weeks for the meds to start working the way they are supposed to. Unfortunately, there are no magic pills/enemas that will put you into remission after only being on them for 7 days.

Good luck and glad the Rowasa hasnt been too bad so far this week!
Posted 1/20/2010 7:11 PM (GMT 0)
Hi.  I'm using the Rowasa as well...nightly.  I saw improvement after 3-4 days but it took a couple weeks for the blood to go away completely.  The colon still has to heal.

And I don't know if this is true for everyone, but I tapered too fast and now I'm back to square one.  So I wouldn't be in a hurry to get off them if they work for you. 

And I'd def. give them more than a week.

Best of luck.

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