Posted 8/4/2008 1:33 AM (GMT -6)
Hi...lots of questions are good...at least you ask.
I can agree and relate to the frustration and the tough times...but since you're sill in the between stages and yo-yoing a bit...consider yourself in a flare.
I personally think it'd be best for you to at least try to use the oral/rectal 5ASA meds to the fullest until you get to the point where you see they're not doing it for you.
Remember that as you heal...up to down, your symptoms will vary. It's good you're not having diarrhea, meaning there's obviously some healing and the Lialda is doing its thing.
You now need to deal with the rectal symptoms with a more potent amount of medication and that's where the retention enemas come in.
Personally, I don't consider the suppositories as a "treatment"....I consider them more for maintenance or support for the enemas or for use as tapering...
The Rowasa 4g would be the best and they will get into and treat the sigmoid...it can take a few weeks to get it all under control. I was once on the nightly enemas for 4 months...yes, it was most frustrating.
Just know that the enemas aren't meant to treat above the sigmoid...that's the job of the oral meds...so don't worry about that part.
The oral 5ASA meds aren't enough to get and treat the entire sigmoid and definitely not the rectum no matter what some might say/believe.
The rectum is the first to inflame, the last to heal....it can be the most difficult to heal...so keep that in mind.
Request the enemas with lots of refills and a guarantee that the pharmacy or you can call for refills. Make an appointment with the doc in a month or two to touch base and revisit.
You'll have to taper them....so, once you're better doesn't mean to drop them...I've tried different tapering schedules throughout the years and came to realise that my body/butt pretty much rules.
Again, I can't say enough about how good the enemas are for me...19+ years strong and I just have started to use the 2g. It's been a teeny up and down this past month, but I'm alternating with 4g at every 3 (soon to be 4) nights.
There's been incredible assurance and independence for me to be using a medication regimen that hasn't yet required me to use any steroids or immuno meds. My UC has been controlled and although I do flare (life always gets in the way), it's been minimal. I dread the day they don't work, however...but until then, I'll take what is working. Oh, and I've been faithful to using them after I realised that denial and wishing symptoms away doesn't work that well..lol!
Any questions you have are welcomed on the forum...many have found their own techniques for using the enemas. I use Salofalk...but I understand the formulation is the same as Rowasa.
Hang tough...it's not the best ride, but the rewards as you look back can be obvious. It's not the remission that's important...it's how you get there and what you've learned from it.