Cortifoam/Meds Advice...

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JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/17/2008 10:58 AM (GMT -6)   
Hello all...This is my first post, though I have been frequenting the site since early summer when my 13 year old son was diagnosed with UC (proctosigmoiditis diagnosed via complete colonoscopy).  Thank you all so much for sharing your information and wisdom....it has helped tremendously...
 
Since early June, my son has tried Asacol 400 mg 5/day x 2 1/2 months, Flagyl 500 mg 3x/day x 2 weeks, Colazal 750 mg 3/day x 2 1/2 months, increased Colazal to 5/day for past 1 month, and have had him on VSL#3 for 2 months now, as well as a Metamucil wafer/day...He has always had 2 mostly formed BMs/day since the beginning of all of this...His only symptom is bloody mucous with stools-sometimes a very little, at times more.  He has not been on prednisone so far.  At our last visit with a different GI in the group, he mentioned immunosuppresants.  I asked about rectal meds.  I guess I am still thinking risk versus reward when my son is feeling so well.  He agreed to let us try cortifoam (every other night). 
 
Last night we tried it for the first time...We have a 15 g bottle.  Shook it up and tried to fill the syringe.  I realize that there is a lot of air with the first use of the bottle, but how many times do you generally have to press down (2-3 seconds each waiting 10 seconds between) to fill the syringe?  We never were able to fill the entire thing to the line, even after about 10 or 12 or more squirts...Is this normal?  Any tips?
 
As far as the application, my son was able to do it himself and said it wasn't that bad...
 
Also, any thoughts on the immunosuppresant issue?  Is it time yet, or should we push for more rectal meds or oral steroids first?
 
Thanks, again.....
 
 

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 12/17/2008 2:35 PM (GMT -6)   
The cortifoam....hold it straight up and I never wait 10 seconds, I just keep squirting until the thing is filled. that stuff works like a charm for me. I have the same symptoms as your son. I have good days and bad, I would hold off on the immunosuppressors as a last resort. I am taking 9 colazal a day (still well within the safety limits for the drug), but my GI has done studies on up to 18/day with great success. Has he tried Rowasa enemas? Those work great too. I think your son is too young to be on immunosuppressors if he is feeling well enough to deal with it without them. Best of luck!
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 12/17/2008 3:18 PM (GMT -6)   
Hi..welcome to the forum!

I have never used the cortifoam...cannot help with that, but it's great he had no problems retaining/doing it.
A good start.

I would suggest to avoid the immunosuppressants forever if he can. Same with pred and any of the big-gun meds unless the first-line meds eventually seem to not work,

The enemas....now, they take commitment. They are like a constant that can be increased when flaring and tapered to a maintenance.

There are also 5-ASA retention enemas that I would suggest to start rather than the steroid ones. I'm biased since I've used Salofalk (same as Rowasa) for 20 years.

I have ulcerative proctosigmoiditis...and my flares to date are very minimal and remain very low in the rectum...because I treat with the rectal meds very early and taper for maintenance.

I did,however, in the first few years try to get off meds...but with all that went on in my life with other stuff to deal with, health issues, etc....I quickly realised I'm a lifer regarding meds. I can use the 5-ASA meds with no problems...some cannot...but if your son can, I think he should be "encouraged" to realise his symptoms and to learn how to treat ealy.

In the simplest form of explanation...I take something for a headache early and most of the time it works. If not, I see the chiropractor. My friend waits till she suffers for 3 days and will never see the chiropractor.

I'm not saying my way works for everyone, but it's one of the simplest forms of treatment that may very well work and help to prevent his UC from possibly spreading farther upward. Not that it happens to everyone....but who's to know?

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/17/2008 3:31 PM (GMT -6)   
I squirt it in slowly, stopping at times because the foam expands into the applicator and many times in the past it would over-flow past the fill line and right out of the dispenser so just squirt a little at a time until the foam has expanded to the fill line.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/18/2008 9:01 AM (GMT -6)   

Thank you all for your great advice...

I agree that the best treatment strategy would be to stick with oral 5ASA with additional rectal meds if that works for him.  I guess it's hard to know with him if any of these meds have done anything for him since he seems to be in the exact same spot as he was at diagnosis with only symptom being bloody mucous with formed stools.  I am thankful that he is feeling so well, but know that the inflammation that he is obviously still having is not good long term, either.  The GI doc after mentioning immunosuppresors said that we have time because he is feeling so well, but that not getting him in control increases the chance that it could spread even further.  We don't want that...  I know I have read that even if cortifoam doesn't work, that Rowasa still might, so that may be the next thing to try.  So frustrating....

Thanks again....This forum is great....... 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/18/2008 12:16 PM (GMT -6)   
Don't worry 14 pumps is what it takes for me...cortifoam is so much easier to use vs. those rowasa or corti enemas...

I was on cortifoam everyday for 2 weeks and now am twice a week as maint plan but I'm getting some blood stripping on my stool again...I will be going over this with the GI doc today.
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


*Jen*
Veteran Member


Date Joined Jul 2005
Total Posts : 514
   Posted 12/20/2008 12:44 AM (GMT -6)   
I just started on the cortifoam and it is a million times easier/comfortable to take vs. the enemas. I agree with the others, just keep pumping until it is filled. My GI said that the Rowasa enemas(Mesalamine) are actually more effective then the cortifoam based on recent studies, so you might want to try that. The enemas are not "pleasant" to take as there is A LOT more liquid in them then the cortifoam and you get a really uncomfortable feeling when you first put them in for the first 2 minutes, but it passes and then all is good. The corifoam you can't even feel it going in. I wish there was a mesalmine foam! Also, the colozal did not work for me at all and the Asacol did, so keep that in mind as well. Some drugs work better for others. I agree with the others, try to stay on the 5-ASAs and find the mix that works for your son.
Diagnosed: 
Officially Diagnosed with UC in June 2003.  Have had stomach issues since 1989.  Unknown if they are related or not.  Have mild/moderate UC.  Have had 4 flares, the last one caused by hormones from stopping breastfeeding.  Currently back in remission!  Only taking 6 Asacol a day.   Will take Rowasa enemas as needed. Colozal did not work for me.  Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 12/20/2008 9:46 PM (GMT -6)   
Sorry to read that your son got hit by UC at age 13, which seems so unfair. I can imagine that you'd want to keep him off the strongest meds if at all possible. Post-1995 research on UC meds has offered proof that oral 5-ASAs used in combination with retention enemas (such as Rowasa, or 5-ASA foam in countries where available) work more effectively to combat inflammation than either can do alone. If you want to read more about this, see the thread "New Online IBD Article Summarizes Current Medical Treatment Options", last updated here on 8/8/08. Best wishes for your son to get rid of the bloody mucus ASAP! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

JoMarie
Regular Member


Date Joined Dec 2008
Total Posts : 55
   Posted 12/22/2008 11:37 AM (GMT -6)   

Thanks so much, all of you, for your support...

Old Hat, I did read that thread previously and it was so helpful...Thanks for posting that.  I have been collecting articles and highlighting them to try and sort out what the best options are. 

If I've learned anything from this site, as well as from the medical literature, it's that there is no one plan that works for everyone.  Also, that doctors have such differing opinions on treatment strategies!  I will try to avoid the "big gun" meds if we can help it...

I have to say that the Cortifoam has done wonders.  He is on every other night for the past few days and last night was the first time since May that we've not seen blood.  I'm hoping that once we get the inflammation simmered down, that the Colazal, VSL#3, and Metamucil will keep it that way for a while...

The GI doc mentioned that if the Cortifoam works, that he'll stop the Colazal...From everything I've read, steroids aren't good at maintaining remission, but the 5 ASA meds are, so I don't think I'd want to stop the 5 ASAs yet (even though they, by themselves, weren't able to get him to remission)...Maybe taper down to 3 a day or something....Again, I feel like we have to be our own advocates...(or, in my case, be my son's advocate!)... 

Thanks again....I'm so grateful for this site.....

 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 12/22/2008 1:17 PM (GMT -6)   
If your son has proctosigmoid inflammation, I don't think Cortifoam alone would be enough to clear it all up. Cortifoam works wonders on the rectum, making it easier to retain the liquid enemas, which CAN reach the sigmoid colon. You are right about oral 5-ASAs being the maintenance meds of choice for patients able to tolerate salicylates. It's also possible to maintain remission in the proctosigmoid area on Rowasa, but not guaranteed, plus Rowasa use generally results in loose bms, whereas Colazal tends to firm bms, a real blessing when it happens! My gastro, who subspecializes in IBD treatment, said recently that a new oral 5-ASA, called Apriso, has been approved by the FDA & will soon come on the market in the U.S. It is also a mesalamine formula. Glad to know that the 8/8/08 thread helped you out to-date! You are absolutely right to read as much as possible about current treatment options, especially if your son's gastro does not subspecialize in IBD. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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