Steroid enemas/foam/suppositories for remission...

Ok, reading a couple posts here some stated that steroid enemas and related were not to help remain in remission. 

Well, my doctor last Fall took me off oral prednisone (tapered slowly) and put me only on rectal steroids - Cortifoam and Anusol.  I used it two to three times a DAY for a while and then when everything as "normal" for me I tapered the Cortifoam and Anusol suppositories.  Now using them about once or twice a week.  I can't tolerate mesalamines so take no other medication for remission.  I have a new doctor June 1 so that is a question for him I guess.  Just wondering if I have been using the rectal meds for nothing if they are helping me remain in remission.  No blood/mucous/urgency, diarrhea since about last October.  I only take Imodium when traveling, etc. and pepto bismal as needed for IBS.

ElaineNY

Hey Elaine, here's what I found on CCFA's website, and where my info comes from.  I remember reading this when I was first diagnosed.
"As valuable as they are in acute situations, corticosteroids are not effective in preventing flare-ups and therefore are rarely used for maintenance therapy in IBD."

http://www.ccfa.org/info/treatment/corticosteroids

I'd love to hear what your GI says about it!

I will be asking ALL the questions - think I need an extra appointment LOL!  I have just been using the Cortifoam and Anusol routinely - not because I feel like I need them - so considered it maintenance or preventing a flare. 

We went on vacation to Orlando.  I took Imodium in small doses while there - never had a problem and was gone 12 days and did not use the rectal meds until I got home two days.  Everything has been fine.  I do get a little sluggish when taking Imodium and carefully eat and don't take them for a few days after home and all is well.  Been doing that for years before diagnosis for IBS.  I take the pepto bismall only when really needed and only when I wake up early morning really nauseated (which is four or 5 days a week).  The nausea and night sweats ar the only real symptoms I have.  I am excited about the new GI doc.  I loved the one so far away but this one has as much experience and lectures about IBD in this area often.

I will report after I see him.  Surely, he will want a scope but I have not had one for a year so time anyway!  YUCK!

ElaioneNY

Eva Lu - comes down to what works for each of us.  Every day I still hold my breath for no serious symptoms like blood or diarrhea - then it could be IBS.  Without my xanax I would never relax.

I will report what new doc says.  Since I will be 70 in a couple weeks - probably my treatment is a little different than you youngsters!!

ElaineNY

right, I know that- but while oral steroids are not used for maintenance, I think rectal steroids can be used long-term for maintenance. The only potential negative side effects re. steroid use are the #1 reason they are not used for maintenance, not that they won't prevent flares from occurring. And when you use a steroid topically, like an enema or suppositry, the chance of experiencing those negative side effects are slim. It's like comparing apples to oranges, rectal steroids & oral. In any case, I would be interested to hear whaat the GI says, if one can safely rely on steroid rectal meds for maintenance. A few on here use orally inhaled steroid inhalers for asthma maintenace, my daughter included- when I asked her pediatrician about using steroids long-term, he explained that that sort of administration is safe for long-term use.

yeah, I did some digging also, & that about sums it up! Not for long-term use, but better than oral steroids.

I see the value in using them now..before I didnt as they were never explained to me or pushed on me.
the problem is if you keep the lower area quiet using them you could still have problems above like i believe i am experiencing and then there are not too many options for treatment