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Steroid enema not working after 8 days, next steps?

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Ulcerative Colitis
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Posted 4/14/2011 1:54 PM (GMT 0)
So, my current flare has been going on about 6 weeks and I have had about 20 BMs with urgency per day (with 3 accidents in the past week), bleeding, and diarrhea.

*upped my usual Lialda dose from 2 to 4 pills a day
*tried mesalamine enemas for a few weeks with no results (was not completely consistent in taking every night)
*have been on hydrocortisone enema for 8 days and it been getting a bit worse if anything. I have taken them every night but most nights I was only able to retain half of it for 30 minutes. No side effects that I'm aware of.

I know the next thing my doctor will tell me is to take oral prednisone but I want to avoid that if possible because of all the side effects. Is there anything else I can do?

Here's a few things I was thinking of:
*Imuran/Azathioprine I know this has some side effects but it sounds not nearly as bad as pred. Doctors seem to prescribe pred first though, is there any reason other than Imuran takes longer to take effect?
*Any sort of natural remedy - I'm skeptical but kind of desperate
*Hydocortisone enemas twice a day instead of once?
*Hydocortisone once a day and mesalamine enemas once a day? morning/night
*Combining the hydrocortisone enema with something to help me retain it?

I would run this by my doctor first but they never have much time for me so I want to consider all my options before speaking to them.

I really appreciate any advice. Thanks!

Post Edited (EqualsTwo) : 4/14/2011 8:58:20 AM (GMT-6)

Posted 4/14/2011 2:26 PM (GMT 0)
Yes, Imuran and 6mp can take up to three months to start working or even longer. So the doc normally has you on either a steroid or mesalamine enema until it kicks in. You can try using the steroid E twice a day but it might be wise to start conservative such as steroid E at night and mesalamine E in the morning. I know when you inflamed that holding an E is hard to do but if you can white knuckle it for a few minutes, the urge to purge lessens. You can also try squeezing the air out before inserting as well as warming it up a bit. The last time I was on steroid E's it took nearly 2 weeks before I started to feel better.
Posted 4/14/2011 2:56 PM (GMT 0)
Hi Sherry,

Hearing that it took you 2 weeks gives me hope that it might work even though it hasn't yet at 8 days! I could do mesalamine in the morning but the symptoms are getting to be pretty disruptive to my life so I'm weighing whether to do something a bit more potent... Also I'm worried that these symptoms are damaging my colon and going to make things worse if I don't get it resolved quickly - not sure how realistic that fear is.

Steroid enemas twice a day would probably still be a lot better than oral prednisone right?

Thanks again, I really appreciate it and have just made a sizeable donation to healingwell :)
Posted 4/14/2011 3:56 PM (GMT 0)
I just finished about 30 days of steroid enemas with worsening symptoms. I have been on prednisone for the last 10 days. I would have avoided it, too, but with a newborn and toddler to care for, I really felt I needed to get better more quickly. (Not that it is working as well as I'd hoped.)

In the past I have taken longer than 8 days to see results with the enemas, especially if I had trouble retaining them. I wonder if it would be easier to retain the steroid foam? I have never tried it, but it sounds like it might be easier to handle, particularly in the daytime when you need to be up and about. I have also read about some people suggesting 1/2 imodium before the enemas to help with retention. Maybe some things you can ask your doctor about.

I also believe the mesalamine enemas take lots of patience. At least that is what I am hoping. I am using them now, but still taking 1/2 bottle and working on retaining more than 1-3 hours.

Good luck and keep us posted on what you and your doc decide. I'm certainly interested in non-prednisone options for the next flare. I am hoping this is my first and last time on it.
Posted 4/14/2011 4:16 PM (GMT 0)
With steroid E's, you get approximately 5-8mgs of steroid that actually enters your blood stream as opposed to 40mgs (this is a high dose example) of oral. I have never been on oral and I have avoided it for the 19 years that I have had this. Though I did come close just recently to getting put on it. My GI is very reluctant to use oral and for that I am grateful.

Cjgk brings up a good point. Perhaps you can try the foam, maybe just until you get some of rectal inflammation down to be able to retain the E's. I am not a fan of foam mainly because it's messy and I have a hard time getting it into the dispenser because of my hands, but it has helped a lot of people. The foam can only go as far as the rectum possibly a bit to the sigmoid btw.

And thanks for the donation! I am sure the admin will appreciate that! :)
Posted 4/14/2011 4:30 PM (GMT 0)
Depending on how bad your proctitis is will depend on how soon before the rectal steroid meds will kick in as well, it's not uncommon to keep getting worse while on them, it's likely just a really nasty flare but try and stick with it..here's hoping it will soon kick in for you...you could also try doing it twice a day, I know it's hard cuz of all the bowel activity, trust me, I've been there and done that many times over 20 yrs. feel better soon!
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