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Rectal Meds Daily for a long time, than taper-- ever?

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Ulcerative Colitis
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Posted 11/21/2011 4:15 PM (GMT 0)
Hi,

Just wondering if anyone has had to use rectal meds daily for a very long time (every night for years) and was than able to taper successfully years later.  I ask this because it seems that if I skip any nights I have problems.  I use Rowasa nightly and sometimes (about 7-10 days out of the month) I also need to use a steroid suppository to keep things calm.  I can't use Canasa as it gives me a rash. 

I really don't mind using rectal meds and I feel I will always use them for maintenance, but I admit thinking about using them nightly forever is a bit annoying.  I would love to eventually be able to skip to every other day or so. 

So any good stories of someone on rectal meds daily for years and than able to skip to every other day or something like that?   FYI, if my sig doesn't show up, I am on 2 Lialda, Metamucil, VSL 3 and of course rectal meds.

Thanks!!

Posted 11/21/2011 7:01 PM (GMT 0)
hateuc, I have been using rectals nightly for years and I am able to skip a few days here and there without too much worry. If I skip more than that, I may notice symptoms. I agree that it would be wonderful to get a break from them but at the same time, it's not so bad. Are you 100% stable? Have you ever tried taking 3 Lialda? I wonder if a bump in oral medication would put you in a position where you're able to decrease rectals.
Posted 11/21/2011 7:44 PM (GMT 0)
Hi nssg,
I agree, rectals aren't too bad, but it would be nice to skip now and than. Most of my inflammation is at the bottom, so I don't know how great a bump in the Lialda would be for that. I also had slight intolerance when I went up to 3 one time when I was first diagnosed..so I tend to keep away from that. Although i wonder if I spread out the Lialda as in 2 in the am and one in the pm.... As far as stability, well not totally. I can go a few weeks/month being fine and than I noticed some grumbling, a bit of constipation, little mucus and have to add a steroid supp, than I can go again for a while...well, you get the pattern. As we all know that proctitis part is pretty stubborn and keeps at you. Thanks for responding to me!
B
Posted 11/21/2011 10:51 PM (GMT 0)
I take 4 Lialda daily and when I take Rowasa for a few days, I can skip as much as a week or more before feeling symptoms. This is really good for me since I had so many problems before Rowasa!
I suggest you try talking to your Dr. about the increase in Lialda as a trial until you see if it helps and if not, go back to 2!
Take care!
Posted 11/22/2011 12:28 AM (GMT 0)
Thanks pmedic. I wonder if I split up the 3 Lialda (2 day/1night) if it would stop the slight intolerance problem I had when I took 3 at the same time. I also wonder sometimes if I should try a different oral asa. It may just be that my butt is very stubborn..lol.
Posted 11/22/2011 1:24 AM (GMT 0)
hateuc, I think we have the same issues. Right now I'm at suppositories twice a day, and enemas nightly, and still can't tamp down this bout of lower rectal inflammation. I'm now adjusting diet and upping the psyllium husk.

Anyway, I think nightly enemas are the way to go for me, but sometimes of course I forget. Add a stress attack, and I'll flare no matter what I'm on it seems.
Posted 11/22/2011 1:42 AM (GMT 0)
You could try getting the salofalk suppositories from Canada. They are similar to Canasa but may not give you the rash. It may be an option worth trying. They are way cheaper than buying Canasa OTC in the US but probably more than you pay if you have insurance here. They are easier than Rowasa, especially in the morning.

Have you tried increasing your VSL?

Have you tried Colazal?

Posted 11/22/2011 2:26 AM (GMT 0)
Thanks Ellen, I agree...I am so annoyed that I could flare when on nightly enemas. Seems like I address it in all ways (both ends) I figure I should be golden with this, but seems that every so often I flare minorly regardless.

NSSG- I think when I meet w/ my GI (not for a few months unless something major goes down) I am going to discuss some of these options. I found the Canasa so easy to use...just pop it in and go. Salofalk sounds like an interesting alternative. I wouldn't mind having another supp option that is not a steroid. Colazol is an interesting idea too. Hopefully they will have the whole brandname Colazal thing worked out by than. I am very grateful for the rectal meds...but always looking for easier ways and more options. I acutally have had dreams where I am going on vacation and I forgot to bring my Rowasa with me and was panicked..lol. Gotta love UC dreams.

I am actually going to change my fiber situtation and see if that makes a difference. I take the Metamucil wafers. I know Quincy has recommended smooth orange (not sugar free ) I bought some of that today and I think I will give it a try. I am also playing w/ the idea of Ultimate Flora C.C. probiotic to add to the mix. Thanks all for the good ideas. I like to have new game plans to try out. I really love this forum, I have learned so much!!
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