when to taper salofalk enemas?

Hi everyone.

I was initially booked for a 2 weeks follow up with my GI doctor tomorrow, but I rescheduled (can't take more time off work, it's already sporadic enough with people cancelling before the holidays). I can't get in for another 4 weeks, so I can't pose this to my doctor.

When do you taper? Quality of life is so much better since I got on the meds about 3-3.5 weeks ago. (Was suppository for the first 10 days before switching to enemas). Also doing cortifoam in the a.m. I find my first BM of the day seems loose, does the enema cause that? It seems harder to retain now than when I first started using them 2 weeks ago. There has been sporadic minimal blood on the TP.

Do you continue nightly indefinitely until the blood is completely gone? Same for the cortifoam? (Still waiting for my insurance… hopefully 1-2 more months!)

Frequency is anywhere from 1-5x a day. This doesn't bother me as even before the bleeding started for my first, current flare I would go 4-7x a day (mostly well formed). That seems to be my "normal".

I agree with Imran. Don't taper until blood is truly gone. I would even hold out longer if you are seeing mucous on your stool.

I'm very interested in this post, since I've been wondering the same thing. Is there any harm in staying on the enemas nightly after you may not need them? As in, bleeding stopped, urgency mostly normal, frequency down? But still on nightly enemas. Once things get good it's hard to be brave enough to change anything

P.S.- you asked if the enemas cause loose stools, they don't for me. My first BM is usually the most formed. I can see the white from the enema absorbed into my stools, but it comes out with the stool, not liquid.

Urgency is very infrequent now- haven't had accidents since I went on meds. The first BM isn't completely loose but rather little whitish pale pieces. Then the rest are usually pretty good and solid with an occasional piecey BM.

Thanks for the answer! Will keep on with the nightly for now. Last night I had to use a supp instead since my pharm didn't make the order deadline to get the enemas in stock and I'm also out of cortifoam for the second morning now- back on track tonight and hope it doesn't set me back too much!

I stopped bleeding about five weeks ago, but still taking salofalk foam enemas and prednisone enemas daily. Just tapered down to 10mg Prednisone, so too worried to give up the rectal meds. How long can one stay on the Prednisone enemas?
Anyone know?

Thanks Semele

callah...good plan.

q

thanks… a girl can dream!

Hi Shooga - i use an enema at night and a hydrocortisone foam in the morning. I no longer am on the suppositories (except for one night when I ran out of enemas- I had extra supps from before I was switched over).

The tenesmus for me was greatly reduced after getting on salofalk (it was supps first, but I noticed a difference immediately). The past few days I have been having stomach upset, presumably from all the extra holiday chocolates/sweets/ you name it - so I was really, awfully gassy which made me feel a bit of the tenesmus. It is a lot better today though. I have found it's been harder to retain them over the past few days after I administer the enema but I can manage to hold on at least a few hours at the least.

How long have you been on the anucort?
Have you been on any 5ASA rectal meds before the pred?
I don't know a lot (yet) but that seems to be the first med to try… that's the one that did it for me. I was on entocort first and it made my tenesmus worse.

I have been on them maybe 3 weeks but have not used them like I should cause I thought I was getting dependent on them but once I stopped the rectal pressure seemed to get worse

Thanks Quincy! If I can get down to 5 mgs of Pred in next ten days then will start to taper Pred enemas. My worst flare ever and it has really shaken me up. Starting new job in March so need to be well. Have just started LDN so interested to see if it helps. Best discovery is lactose free. Forum has been best help! You and InSoFia have been stars. Thank you.