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Maintanance with steroid enemas?

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Posted 6/6/2010 12:29 PM (GMT 0)
I'm not outright flaring nor am I quite back in remission.  I am sort of stuck in limbo.  Mild flaring maybe?  Very slight urgency, a little bleeding (hemmies or Uc I don't know) and going about 1-4 times in the morning with loose/somewhat solid stool.  For rest of the day I feel great and have no issue.  I am not tired nor do I have the left sided pain or pain upon going.  So I got thinking...since some people use Rowasa every other day as a maintanance med, can the same be done with steroid enemas or would that mess with the adrenal functions?  I just got off a course of treatment steroid enemas (well actually about 2 weeks ago) and I don't feel I need a treatment dose since really I am not that bad, just a little whacked out in the mornings.  Has anyone done this....every other day with the steroid enemas? And if so, how long did you do it for?
Posted 6/6/2010 1:38 PM (GMT 0)
I don't have a regular set schedule for the steroid enemas, but I do have a script for them, to use PRN. I've found that in between the Humira injections, I still have a couple really rough days, bleeding, urgency, etc. So my GI suggested I try the steroid enemas every other night or so, whenever my symptoms start to crop up. I've used one box so far, doing them here & there- one every other night for a couple days, then one every 3rd-4th night, then stopping. I last used one this past Tuesday. Am due for an injection this Thursday, so I may use one this Tuesday also, or maybe tomorrow night- just to keep things calm! I don't know about long-term maintenance with them, but using them as needed, anywhere from 2-4 nights a week should be fine for a month or so- then if you still find yourself bleeding, it may be time to talk to your GI.
Posted 6/6/2010 2:11 PM (GMT 0)
The steroid enemas are not suitable for continuous long terms use because Hydrocortisone thins your tissues. This is also true of the OTC topical cream. The way Eva is using them, intermittently is probably fine but my doctor was very specific with me that he does not want me using the enemas or suppositories for continuous use.
Posted 6/6/2010 7:43 PM (GMT 0)
did you taper them or just use them for 2 weeks and then stop?
If you were concerned with the dosage of steroid in them, opt for proctofoam...lowest dosage.


q
Posted 6/6/2010 11:54 PM (GMT 0)
My new gastro doctor told me to use my Cortifoam and Anusol only "as needed" - like a couple times if I have such symptoms as D or left-side discomfort.  I told him I was using them every weekend - one or the other and he said that should be ok for maintenance.  He seemed concerned about the amount of steroid absorb if used too often.  Since I can't take mesalamines it is difficult.

ElaineNY

Posted 6/7/2010 11:22 AM (GMT 0)
Yes Heather, I did a taper. But I am still having minor issues. I would say maybe 5 out of 7 days are like what I described. The other 2 are completely normal - this disease is so wacky!

Thanks everyone for the responses. I didn't think about thinning of the rectum walls.
Posted 6/7/2010 3:24 PM (GMT 0)
This topic is of special interest to me as I have just started a course of steroid enemas to finally get my current flare under control.  My GI prescribed them, for nightly use, when I saw him on 05/26 and wanted me to schedule a C-scope for 2-3 weeks later.  Well, the only opening for the scope was on 06/22, 4 weeks post appointment.  So my question......is 4 weeks of nightly use a normal therapeutic dose for hydrocortisone enemas? What exactly would be considered "long term, continuous" use?

I am hoping that all will be well and I can go back to my normal Asacol/Rowasa routine to maintain.  If not, GI mentioned "biologics".. shocked

Posted 6/7/2010 7:15 PM (GMT 0)
Sherry....how about asking the doc for Proctocedyl supps...not as much hydrocortisone.

You're still on Colazal? And 6mp....right?

q
Posted 6/7/2010 10:09 PM (GMT 0)
Being in a flare for quite sometime now, I use a Colocort enema and Canasa suppository to calm down the lower end. Usually, one or two times and it calms things down for a while. My biggest problem this time is joint and muscle pain. I started a low carb diet today. I've reached the point where I'm going to try something different. I'd rather personally be fighting this thing than just getting beat bloody and not doing anything. Another GI dr. is on the list too. Sorry to get off subject.
Posted 6/8/2010 12:10 AM (GMT 0)
Aussie, when my flares go beyond the scope of being handled by the 5-ASAa (from both ends) I go for steroid enemas. I am often on them 6 weeks before beginning to taper, and sometimes longer. Sometimes I've tapered down, have had symptoms recur, and have re-increased the dose so that I was more or less on them for most of a year. I wouldn't "recommend" that, but..... I escaped pred and am here to tell the tale (and have good bones, etc) so....no real harm done.
Posted 6/8/2010 12:47 AM (GMT 0)

songlady said...
Aussie, when my flares go beyond the scope of being handled by the 5-ASAa (from both ends) I go for steroid enemas. I am often on them 6 weeks before beginning to taper, and sometimes longer. Sometimes I've tapered down, have had symptoms recur, and have re-increased the dose so that I was more or less on them for most of a year. I wouldn't "recommend" that, but..... I escaped pred and am here to tell the tale (and have good bones, etc) so....no real harm done.

 

 

Thanks for the reply songlady.  This is my first foray into the use of steroids and I want it to be as short and sweet at possible.  I have managed my disease for years with 5-ASA's and would like to get back to using just Asacol/Rowasa if I can. 

Posted 6/8/2010 12:54 AM (GMT 0)
Aussie, your UC history and mine aren't that dissimilar except that my first major UC flare, 1986, was a 2 year journey into steroids and hospitalizations - but after that, 5 -ASAs and cortenemas if necessary have "done it" for me - so I wish you the best!
Posted 6/8/2010 12:26 PM (GMT 0)

songlady said...
Aussie, your UC history and mine aren't that dissimilar except that my first major UC flare, 1986, was a 2 year journey into steroids and hospitalizations - but after that, 5 -ASAs and cortenemas if necessary have "done it" for me - so I wish you the best!

 

Thanks for the good wishes.  The cortenemas seem to be "doing it" for me as well.  I've been on them for 2 weeks and no blood/urgency issues in 10 days or so. 

This flare-up has been different than others I've had because it was precipitated, I think, by a series of events in my life which were very depressing emotionally(husbands job loss, having to euthanise 2 of my dogs, son moving out, other son's school issues, mother's sudden death) followed by a bout of stomach flu in February.  I also dealt with 6 weeks of horrible sinus congestion which my PCP thinks is somehow related to my UC flare-up.  Steroids up my nose cleared that up, and steroids up the other end are working there, too. 

Now I need to deal with the emotional aspect of the UC; like getting over the anxiety about going places/doing things.  Of course there is also my mother's death to deal with as well.  I only had about 2 weeks to deal with that before the UC kicked in in February and took over my life. 

Posted 6/8/2010 1:48 PM (GMT 0)
Aussie - I just started a new thread about grief so as not to derail Red's thread. But.... yes, sometimes viruses and sinus things - other drags on my immune system - make me more prone to flare also.
And I've got a son with school issues, too - argh.
Again, I wish you the best in getting out of this one!
Posted 6/8/2010 3:49 PM (GMT 0)
I wanted to know what symptoms you all are treating with the cortenemas. I have some D or loose stools, bleeding and cramps. without doing a c scope my doc can not say whether the problem area is left sided or higher. The rectum is normal as he looked through the rigid scope but he did not look any higher as I was not comfortable. We are going to try the cortenemas in case my problem is just above the rectal area.
Posted 6/8/2010 4:14 PM (GMT 0)
ok im no doctor but i know alot about the pred (prednisolone)

pred enemas are fairly safe to take for months because they are generally only 20mg pred and because its not a oral medication it has less side effects than oral pred.

on the other hand u should not even though most of us do, have to do any steroid treatment and or enemas. it might be a good idea to stack ur current medication with another immune suppressive or anti inflammatory drug.


krissyUC u say u dont know were the UC is flared up. its easy to tell the redder the blood and the more the urgency the closer to the anus it is. with what u describe it sound like it has not gone past the splenic flexure so the enema should help in the treatment of ur UC. have u considered Salofalk enemas they have less side effects and can be taken far longer than the pre

every body if u dont like pred enemas ask ur doctor about salofalk enemas and there are also foam versions but be warned they are easer to hold in but some ppl will experience a really painful burning sensation

(u should always consult a trained doctor)
Posted 6/8/2010 4:25 PM (GMT 0)

08yannch said...
ok im no doctor but i know alot about the pred (prednisolone)

pred enemas are fairly safe to take for months because they are generally only 20mg pred and because its not a oral medication it has less side effects than oral pred.

on the other hand u should not even though most of us do, have to do any steroid treatment and or enemas. it might be a good idea to stack ur current medication with another immune suppressive or anti inflammatory drug.


krissyUC u say u dont know were the UC is flared up. its easy to tell the redder the blood and the more the urgency the closer to the anus it is. with what u describe it sound like it has not gone past the splenic flexure so the enema should help in the treatment of ur UC. have u considered Salofalk enemas they have less side effects and can be taken far longer than the pre

every body if u dont like pred enemas ask ur doctor about salofalk enemas and there are also foam versions but be warned they are easer to hold in but some ppl will experience a really painful burning sensation

(u should always consult a trained doctor)

how can you tell it has not gone past? i am already on the salofalk enemas and if you are right I guess they are not working and time for something stronger..

Posted 6/8/2010 4:35 PM (GMT 0)
08yannch, your post wouldn't really apply to my situation. I am intolerant of all mesalamines and I can barely tolerate Colazal. I am already on an immune suppressing medication. Steroid enemas are the only thing I can take short of going on Remicaid and I don't feel I am ready for that yet. I agree that steroids should be avoided but sometimes it can not.
Posted 6/8/2010 5:16 PM (GMT 0)
KrissyUC it may have gone past but if so it wouldn't be bad enough to be concerned about. u did not describe dark poo poo :P which indicates blood in the stool for a longer period of time. well if the salafalk is not working i would say try the pre enemas with oral pred (if u just need to get past this flare up) if u have regular flare ups its time to up or change ur maintenance medication.

Red_34 all mesalamines wow that sucks. u can get immune suppressing enemas but that have to be made up so can be hard to obtain. (oh sorry i didnt realize u had all medication info posted my bad)
Posted 6/8/2010 5:32 PM (GMT 0)

what do you mean dark poo poo ? how dark?

it is kinda dark.

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