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Maintenance dose of Cort enemas

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Posted 4/1/2009 9:32 PM (GMT 0)
     Anyone in here stay on the cort enemas even while in remission?  I don't but was wondering if I should be inserting them every other night or so.  Right now I take six capsules of Colazal and 50 mgm of 6MP.  I also take a probiotic and fish oil capsule.
Posted 4/1/2009 9:38 PM (GMT 0)
Some people think you should stay on them indefinitely, however there is no guarantee that by doing so it will keep you from flaring and infact you may even run the risk of them not working as well (or maybe even at all) when you will really need to be on them (your body may become immune to it) not to mention, rectal meds are not cheap, especially cortifoam. I wouldn't use it when not needed.

:)
Posted 4/1/2009 11:17 PM (GMT 0)
Good question! I'm anxious to hear other's thoughts on this. I've only done this type of enema a few times and I was never told to taper off of them or given really clear instructions on how long to take them. I just started back on them last night and I have an appt. with a new GI on Friday so I plan to ask how long I should stay on them and if/how to taper. I get side effects from them so I would never stay on them forever. They do work great though, after just one night, my stools were improved drastically today.
Posted 4/1/2009 11:23 PM (GMT 0)
     Glamourgirl...what are your side effects?  Last week I started to feel a little funky and thought...uh oh, not a flare!  So I inserted a Rowasa which my GI doctor's nurse gave me samples.  I had cramping afterwards and decided to renew my Cort enema prescription, just in case.  Cort enemas never gave me any side effects.
Posted 4/1/2009 11:27 PM (GMT 0)
I get some of the normal steroid side effects like night sweats, a little insomnia, a little joint pain. The side effects are nothing like when I'm on Pred, but for some reason the steroids definitely get into my system and give me some side effects.

The ASA meds don't work for me so the cort enemas are my only rectal option.
Posted 4/1/2009 11:49 PM (GMT 0)
I had used Entocort enema nightly for 7 weeks last September/October before I tapered it with Salofalk enema, which is my maintenance medication. Actually, my GI doctor said I could just stop it completely and switch to Salofalk but I decided to taper it off slowly---1 in 2 days for 2 weeks, then 1 in 3 days for 2 weeks, and so on.

Later, when I was using it once a week I saw red mucous again. And I became less tolerant with Salofalk enema. It seemed that my body liked Entocort enema more. I told my GI doctor about that and she just asked me to wait and see.
Well, I'm still using it once a week now. And on the other days in the week I use Salofalk enema or suppository. I'm feeling great except for urgency and red mucous. I think I will stop Entocort enema completely when I don't see red mucous anymore. In fact, my doctor said I could taper off Salofalk enema as well but I don't think I'm ready yet.
When my doctor wrote me the script for Entocort enema last September she let me have 4 weeks' supply with 6 refills. I guess she thought that I would need them again in the future. By then I can just go to the pharmacy and get them without wasting time to call her. LOL.

Some time last month, I told my colorectal surgeon (who removed my hemmies by rubber banding) that I was still using Entocort enema 1-2 times a week and he said it's okay. I asked him if I would become steroid enema dependent and he said no.
Posted 4/2/2009 1:41 AM (GMT 0)
The latest thoughts of IBD sub-specialist gastros is that patients should stay away from steroids in most cases. That's likely why you were put on 6-MP, to get you off steroids. The bone damage steroids can cause is forever, as Judilynn posts in her signature here on the UC Forum. I know from using Cortenemas against severe left-sided flares in the 1980s that they can provide miraculously quick relief of symptoms with 40-50% of the systemic absorption that one gets from a comparable dose of Pred. However, they still affect the endocrine system after a few weeks of nightly use-- so one is supposed to taper off them over a week, to give the adrenals a chance to readjust. / Old Hat (30 yrs with left-sided UC; presently fighting off flare in sigmoid colon)
Posted 4/2/2009 1:54 AM (GMT 0)
Because so little gets into the blood stream via enema that chances of side effects for the mojority are very low, I've been on them for as long as a yr before tapering and didn't have a single side effect, never have no matter how long or often I've used them, I know everyone is different but it's a very small % that may suffer with mild side effects from it and I've been on them and not tappered just stopped cold, again with no issues and my GI has assured me doing that is not a problem either because not enough gets into the blood suply to cause issues like what pred does from quitting cold turkey.

:)
Posted 4/2/2009 2:19 AM (GMT 0)
pb4-- you've been lucky in that respect & you have Crohn's. I think most UCers develop side effects if they stay on nightly Cortenemas longer than a couple months, things like ravenous appetite & thinning scalp hair. They helped me with minimal side effects thru a couple severe flares, then later during a 3rd flare I got a staph infection while on them & became very ill. Gastro does not want me to use them any more. / Old Hat (30 yrs with left-sided UC ... [etc.])
Posted 4/2/2009 2:32 AM (GMT 0)
Old Hat proctitis is proctitis regardless if it's from UC or CD and according to my GI the majority of IBDers in general don't tend to have issues with side effects and I know that doesn't mean all, he also explained there are a few that are super sensitive and those people probably would do better using another form of rectal meds anyway. I know there are always exceptions to the rule but he reasured me that so little gets into the blood stream that long term use (being used for as long as they needed to be) was not an issue for the majority. Just sharing what he explained to me, I don't want people to be scared away from trying or using cortifoam based on the few that have major sensitivities to it.

:)
Posted 4/2/2009 11:58 AM (GMT 0)
Here is what my GI told me about long term usage of steroid enemas and why it is not recommended:

1) Over time, yes some of the medication can become systemic. You get approximately 6-8mgs of steroids that enter your blood from the enemas. And yes over time it can accumulate and cause some complications as you would see in people that use oral steroids - however, the chances of this is a bit slim. Also the longer you use them you can have an increase of side effects - depending on how sensitive to steroids you are.

2) Maintanance dosing is not recommeded because your body can become immune to them or requiring more to heal you. After a while, your body starts to "crave" steroids and it's like a drug addict.

3) Long term use of steroids can thin the lining of your rectum which in turn can cause larger ulceration or fissures.

Yes I asked my GI the same thing and this is what he told me. This is when I was having a hard time a couple years ago before I got put on 6mp.
Posted 4/2/2009 12:08 PM (GMT 0)
    

     Thank you all for your replies.  I have osteoporosis already, so I better be cautious with the enemas.  I just use them rarely in the event I have an iffy day.  Like yesterday, I went to the bathroom three or four times.  No diarrhea but I wonder how much poo can stay in that colon!!!  When people say "laying cable", I now know what they are talking about..wow!  Anyway, I did insert a cort enema last night and today I feel relief.  No cramping.

Posted 4/2/2009 12:40 PM (GMT 0)
Well they do say the colon is 7ft long lol (I think it was 7ft - I'm having a hard time remembering anything this morning!) But what I wouldn't give to "lay cable"! :) I'm glad you are feeling better today.
Posted 4/2/2009 1:43 PM (GMT 0)
How much steroid does the colocort enema contain?

I've been using entocort enemas that have the steroid budesonide in them for almost 1.5 years for maintenance and have had no side effects. They only have 2.3mg of budesonide per 100ml enema. I had to stop the Salofalk enemas when they started causing bleeding. I use the budesonide enemas about every 3 nights.

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