HealingWell
Search Close Search
☰

Lialda

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/14/2010 9:29 PM (GMT 0)

Hello.  First time posting - looking for general feedback from others who may have had a similar experience w/ UC.  I was diagnosted with UC (proctitis) in '05 and went into remission quickly after a month of using Canasa suppositories.  I started flaring again this past April but Canasa didn't help, so I started taking 3-6 Asacol daily (meant to take 6 but I would often forget to take my 2nd dose).  In mid November, after a 2-3 months of no relief, my GI dr prescribed Lialda.  I started with 4 pills once a day (which is equivalent to 12 Asacol) but had very severe stomach cramping and had to go down to 2 pills.  Taking 2 per day has helped a little, fewer bathroom trips and less urgency, but I'm definitely not healthy.  Per a colonoscopy on Monday, my GI dr determined that i now have left-side colitis and he said to go back up to 4 Liada per day and a nightly Rowasa enema.  My boyfriend of 4 years has been UNBELIEVABLY supportive and we're moving in together in a few weeks.  I'd do anything to not have to start our life together with a nightly enema - but I also want to be healthy.  My only enema experience has been w/ saline enemas for sigmoidoscopy prep.  I found these painful and I could only wait about 30 seconds before expelling.  How is the overall Rowasa experience, and does it generally work?  Does it leak during the night?  Has anyone achieved remission with 4 Lialda per day, and if so, did you stop having side effects after a few weeks of usage?  Thank you in advance for your feeback!  I've tried to be very positive about getting healthy, but I'm starting to feel like nothing is going to work. 

Posted 1/14/2010 9:52 PM (GMT 0)
Hi and welcome!
I was in a really severe flare (20+ extremely urgent BM's/day) when I was diagnosed with pancolitis. I was really close to remission using Asacol (12 pills/day) and rowasa enemas (nightly) when I got a tummy bug and was thrown back into the flare, and ended up going on prednisone to achieve remission. If I hadn't gotten the tummy bug, I think I would have gotten into remission with Asacol and Rowasa alone.

Anyway, I don't have any problems holding the enemas now that I'm in remission (I use them twice weekly for maintenance) and didn't have much trouble when I was flaring. My doc had me use half of an enema my first few nights, to get used to it, since I was flaring so badly. I think the shortest time I've held one was 2 hours, but that was only once. Even when flaring badly, I usually held it for at least 5 hours, and most of the time it was all night.

Aren't saline enemas designed to make you poop? (sorry, random question thrown in there)

Like I said, when I started them, I was in a really bad flare. I'd been on Asacol for a week with little improvement when I started them, but when I added the Rowasa, things improved drastically quite quickly.

I've never had an enema leak. I am careful not to pass gas right after I put it in, though!

To improve your chances of retaining it, warm it up (stick the bottle in some warm water or hold it under your armpit for a few minutes), squeeze the extra air out, and relax as much as you can. You might have some cramping, but I never do.
Posted 1/14/2010 11:16 PM (GMT 0)
Fruitgirl, I really appreciate the feedback!  Congratulations on achieving remission.  Did the 12 Asacol per day cause any problems for you as far as stomach cramps or additional stomach upset?

 

This probably seems really silly, but one part of the enema routine I worry about is lying down for 30 min afterwards.  Do you have to lie down immediately after executing the enema or, for example, can you initiate the enema in the bathroom and then walk to your bed.  If, for any reason, you have to getup before waiting 30 min could that cause problems? 

 

THANK YOU!

 

 

Posted 1/14/2010 11:26 PM (GMT 0)
Hey, thanks!  And no problem about the feedback...that's why I'm sticking around!  The 12 Asacol a day didn't affect me, nor does the 4 Apriso I'm taking now.  You know, now that I think about it, you could ask your doctor about trying Apriso.  It's got a lower dose of mesalamine than Asacol does in it's maximum dose, because it supposedly is more effective at relseasing mesalamine in the colon.  Read here

https://www.healingwell.com/community/default.aspx?f=38&m=1692345

for what I learned at my doctor today.  I also just looked up info on Lialda, and it has 4.8 g of mesalamine total in 4 pills, so the same maximum dose as Asacol. 

The only thing is that Apriso isn't approved for induction of remission, but if it seems like you're sensitive to mesalamine, Apriso might be worth a shot. 

Some people put the enema in while they are lying in bed, but I didn't want to do that, because this stuff STAINS!  I recommend you throw and old towel on your bathroom floor to lie on.  I was afraid a bottle would burst and I'd ruin all of my bedding.  Anyway, I do the enema, get up, wash my hands, and head right to bed and lay down on my left side.  I usually fall asleep that way.  My doc said it was ok to get up.  I've never had to get back out of bed before the 30 minutes was up.  My husband gets up if our son happens to wake up in that time frame.

✚ New Topic ✚ Reply