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Your experience with Cortenemas

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Ulcerative Colitis
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Posted 5/18/2010 2:14 PM (GMT 0)

I am thinking I just might try these to see if they help any with what I am currently experiencing. I want to give  my current regime (see below) a fair chance first..probably a couple more weeks unless things get very noticably worse.

I want to know what symptoms were occuring when you started them, what side effects you experienced..how long you stayed on them and what your taper schedule was like.

I have steroid phobia as I have had really bad experiences with the orals in the past.

I am hesistant to try these as I think my problem area may be higher up in the colon at the moment...I am very confused right now..I dont wanna call the doc for fear of prednisone .

Posted 5/18/2010 2:48 PM (GMT 0)
Rowasa not working for me so my GI prescribed cortenema. I have never used cortenema before, so I have the same questions that you have.
Posted 5/18/2010 2:54 PM (GMT 0)
That is the only rectal med I can use since I can't tolerate mesalamine enemas. I was on them for approximately a year for a stubborn flare. I have never been on oral pred so I can't really compare but the side effects were almost none existant. Of course the longer I was on them, then the side effects started to show up (slight moonface, insomnia, hunger, thigh cramps) but I was not on the typical dosing. Normally you use them for 3-8 weeks and when your symptoms go away, you taper to every other day for a week or two, then every second day for a week or two. The taper schedule depends on how your body is going to respond to it. I think approximately 5-8mgs of steroid actually enters the blood stream from the steroid enemas.
Posted 5/18/2010 3:04 PM (GMT 0)
I just picked up my gigantic enema boxes yesterday..... I tried to use them about 2 years ago, but was flaring so badly at the time that I could not retain them for any length of time. This time around, the only symptom I am attempting to treat with them is minor daily bleeding. My stools are formed, no D, I go about 4-8 times a day, on average. 8 is high though, it's usually closer to 5. So I met with my GI last week just to touch base, & instead of bumping the Humira up to one shot weekly, we decided to give the cortenemas a try. I used my first one last night, will keep you updated! I'm really hoping they work well.

Posted 5/18/2010 3:12 PM (GMT 0)
Eva Lou- I was on humira..biweekly and then weekly. I still flared a few times which landed me on oral steroids..I was in the study so I could only do 20mg but that seemed to do the trick. After coming off them in Sept..I stayed on weekly humira until January when things had settled down.
My symptoms are bleeding and crampy left sided pain. I dont know if the enemas will even help. I am hoping they would if thats what it comes down to as I am not interested in oral steroids. I am going between 2-5 times a day right now.
Posted 5/18/2010 3:23 PM (GMT 0)
I was on the cort enemas for 4 weeks before I took a turn for the worse and started oral pred. I didn't really notice any side effects from them when you compare to the side effects of oral prednisone. Not even in the same ball park... they are pretty effective, but my flare had gone up past where they reach. When I had my colonoscopy (after the weeks on the enemas and before the oral pred) my doctor said the area where the enemas were going was actually in pretty good shape, the rest of my colon looked awful. I know they don't reach all that high because there were some ulcers in my left sided colon.
Posted 5/18/2010 3:42 PM (GMT 0)
thanks Jennifer..this is my fear EXACTLY. I have been using the salofalk enemas for 2 months now,. I had the flex sig and the doc said that things looked great in the lower area with only some minor minor spots of erythema above. So my thinking is those minor spots have turned it up a notch and now are flaring up..I upped my oral salofalk to 12 per day which has helped in the past. My upper area has never flared beyond the term "mild"
my rectum as been severe at times.
Posted 5/18/2010 9:56 PM (GMT 0)
I am going to try them. I got a prescription today. My doctor said my worst area is the rectum. I am surprised considering my symptoms seem different than usual. I hope they help!
Posted 5/19/2010 3:08 AM (GMT 0)

I have just started them last week.  I had been flaring for about 6 weeks and just couldn't shake it.  After the second one, I stopped bleeding.  After 4 days, the D stopped.  I was worried about the steroids, but my doc said that it was like putting a steriod cream on a skin rash only the rash is very hard to get to.  He said that I do not have to taper because the amount of steriod is so small.

I think they are great except compared to flaring.

diagnosed with left-sided UC in September 2009

2-1.2 gm Lialda 2x per day

nightly hydrocortizone enema x 28 days

supplements include EPA/fish oil, multivitamin, probiotics

Posted 5/19/2010 5:17 AM (GMT 0)
They worked great to get me out of my second flare. I was on them for maybe six weeks. This time around I've been on them for most of the last eight months or so and still flaring.
Posted 5/19/2010 1:19 PM (GMT 0)
Thanks everyone..I believe they WILL work if my problem is within reach of the enema..but if its higher up I dont know what to do..
Posted 5/19/2010 1:20 PM (GMT 0)
What is left sided colitis?
Posted 5/19/2010 8:28 PM (GMT 0)
up to the splenic flexure or beyond the sigmoid with the descending involved.

q
Posted 5/19/2010 9:10 PM (GMT 0)
ohhhhh, i said previouly that i had left suded uc, but maybe not. mine is 25-30cm.
Posted 5/20/2010 6:18 AM (GMT 0)
no, it's not left sided....could be considered proctitis or proctosigmoiditis...depending on the length of the rectum and where your sigmoid starts.

q
Posted 5/20/2010 12:40 PM (GMT 0)
The only med that ever got me out of flares was the oral prednisone. I used the Rowasa years ago and a few years ago my doctor switched me to cort enemas. My rectum is in such bad shape now that I cannot retain them for longer than 15 min tops. Using the suppositories too.....nothing is helping anymore.
Posted 5/20/2010 12:46 PM (GMT 0)
Christine in that case it is GREAT that you are getting the surgery done..I wish you all the best!

I do have an other question about these cortenemas..If some is getting absorbed into the bloodstream..even 5mg..would that 5mg over a longer period of time help the rest of the colon too ??
Posted 5/20/2010 5:58 PM (GMT 0)
Krissy...wait on the cort enemas if you're changing to the Pentasa.

q
Posted 5/20/2010 7:25 PM (GMT 0)
I am thinking of asking for Pentasa but I am scared..because this flare is not all that bad I dont want to mess anything up further..I am reading all sorts of things..somethings make me think its worth a try and others make me think its just for crohns...
I am waiting on a call from my GI
Posted 5/20/2010 9:52 PM (GMT 0)
The reason it's for CD is that it starts releasing earlier in the small intestine. It's a 5ASA option for CD. It does disperse throughout the colon...which is where you have inflammation...it's another option and I think it's a good one.

The other is Asacol...but it's not time released as is the Pentasa, that's why I think it's good to try it.

Personally, you aren't happy where you are at this point because you have a hurried agenda to get pregnant. Did you also recently get off the pill?

I think now is the time to mess around....you don't know what your options are until you try them.

Oh, where did you read about the 5ASA of Salofalk compared to Pentasa that ends up in the bloodstream?

q
Posted 5/21/2010 12:09 AM (GMT 0)
What does time released mean?
I am not in a rush to get pregnant but not wanting to wait another two years as well..I did stop taking the pill as of this week. Dont feel any different maybe just a bit tired and less water retention..thats about it.

I read that in the medscape article that mudlark posted..it said that pentasa is not absorbed as much as salofalk and asacol.
Posted 5/21/2010 1:30 AM (GMT 0)
I used cortenemas to help wean me off of Prednisone. Worked very well for me.
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