Salofalk enemas, anyone?

So I have pancolitis. Iron was ridiculously low, inflammation so high, and doctor was explaining that I'd most likely need humira if my disease didn't stop "grumbling". Inititally i was only on four mezavant a day and that wasnt cutting it. I knew i still had active disease. However, for a week now I have been taking a morning salofalk suppository, four mezavant pills daily, an iron pill, metamucil, and a salofalk enema before bed.

Bleeding has stopped completely. Pain is almost zero except for when I insert the enema at first. My energy is up. I feel so happy. Of course I'm still watching my dairy consumption and meat, but even with some diet cheating I've had no adverse effects. .. even with espresso!!!

Now for my question. Gastro says enemas aren't realistic for long term. I say why the hell not? So far, knock on wood, it's working wonders! Do any of you use these enemas long term? Even not daily but a few times a week just for maintenance?

Any information would be wonderful!

Thank you

quincy said...
well, I've used them for over 25 years. Maybe that's considered LONG TERM?

You use them to treat your flare and once all is fine and dandy....start to taper them every second night for a few weeks, then to every third night. If all is good, then figure out a twice a week schedule.

Maintenance is the key. And remind your doc that it's your butt and not his.
Hopefully he'll continue to write prescriptions and refills..

q

That sounds like great advice to me.

hey, if it works...then stick with it!...Ive used Canasa suppositories since they came out and its the ONLY thing that stops flares and induces remission for the proctitis portion of the UC...don't ever stop!

He's probably saying they're not reasonable for long-term because a lot of people won't want to use them long-term.

I can't touch quincy's 25 years, but I've been using them for 5 years now and have no intention of stopping. Granted, the majority of this time has just been twice a week, but still.

malaika, what your GI told you is a big load of hooey. It's completely true that the enemas won't treat the entire colon, but they do a very, very good job at treating the distal part of the colon, which the oral mesalamines don't always effectively treat. Most studies with enemas are done with patients who have limited UC, but the one study I've been able to find that looked at patients with pancolitis showed a great deal of benefit.

However, since you're not able to tolerate mesalamine, it's sort of a moot point for you.