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Ulcerative Colitis
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Posted 4/19/2013 3:45 AM (GMT 0)
I have been on cortifoam for about a week now and it has not helped...this week has been awful, with increased rectal pain. Lost more weight. Saw my gi dr today. He wants to start me on remicade next week. I hate the idea of this but I can't continue like this. Of course today was the best day I have had in a couple of weeks, but my dr says to look at the big picture, the steroids are not working and need to step up the treatment.

Tried lialda and asacol, which did not help and was most likely giving me diarrhea. Have been on pred 40mg for 2 weeks and 35mg for another week and half. With no apparent improvement. Also tried steroid enemas which i was not able to hold in and were painful. Second colonoscopy showed no improvement. I have about 20 cm of moderate to severe proctitis and a singular small lesion at the end of the colon.

So now my dr wants to do remicade to get me in remission...I am scared to go down this path. My dr says this is not typical for proctitis not respond to steroids, and he does not want to go to the biologics for such a small amount of disease, but sees it as the best course of treatment.

This sucks that is about where I am at. So I guess have to jump in with both feet and take this disease by the horns!
Posted 4/19/2013 3:53 AM (GMT 0)
how long have you been flaring for? I'm in the same situation as you. 30mgs prednisone, 6 asacol a day, 2 enemas a day and cortifoam all for proctitis. it's not working and my doc wants me on remicade next. I'm trying herbal medications in between and diet changes.
Posted 4/19/2013 3:57 AM (GMT 0)
Ask him to start you on a different steriod called budesonide. Ask for uceris because its a new drug specifically for UC. if your insurance doesn't cover it ask for entocort.
Posted 4/19/2013 4:01 AM (GMT 0)
So sorry that you are in this level of flare and that mesalamines are not tolerated. That removes most of the low-level Rx meds so Remicade is not a surprising move from your doctor.

VSL#3 is not a miracle worker but won't hurt to add.
You could look into other alternatives even after starting Remicade, just in case you have problems there.
Antibiotic therapy or fecal transplant or many other possibilities. Someone just posted that they were diagnosed with UC that was later found to be a sulfite intolerance (and they didn't respond to the meds for that reason).

Best wishes. Let us know how you do.
Posted 4/19/2013 4:48 AM (GMT 0)
I just got my vsl in the mail... Start tomorrow... How much are you taking? I got the packets. I am willing to try just about anything. Talked to my dr about alternative treatments, he said we need to stop the flare first. And if pred is not working then we need to go to bigger guns.
Posted 4/19/2013 4:49 AM (GMT 0)
Ill ask about the other steroids, thanks
Posted 4/19/2013 4:50 AM (GMT 0)
Oh been flaring since November, diagnosed first week february
Posted 4/19/2013 5:33 AM (GMT 0)
I once had to be on cortifoam for a year before tapering off of it because I waited to long to treat my proctitis which in turn made it harder to treat/heal. Generally, the worse the proctitis is, the longer it takes for steroid based rectal meds to kick in and start working...tapering off too soon isn't good either.
Posted 4/19/2013 11:23 AM (GMT 0)
A week on Cortifoam is not really sufficient time to know if it will work or not. Sometimes it can take a few weeks to a month. Maybe you can ask your doc to give you a little more time on it before jumping on Remi?
Posted 4/19/2013 12:32 PM (GMT 0)
Therapeutic dose of VSL#3 is very high daily for many weeks so you probably cannot overdo the amount (you can google for the study). However it can cause gas to start so you might want to start out with half a packet for a couple days then move up to a full one then to more. I never had gas but also never took more than 2 day for a short time.

I take mine before bed because I don't want digestion to interfere with it.
Posted 4/19/2013 1:07 PM (GMT 0)
Thank you....I will wait until tonight then just in case! So many decisions right now...
Posted 4/19/2013 3:10 PM (GMT 0)
For a bad flare it usually takes me about 10-12 days after cortifoam until i feel better. If it doesn't work i take benetensyol (but i hate that enema, so i avoid it at all costs). Make sure to stay away from fibre and dairy when taking cortifoam
Posted 4/19/2013 3:25 PM (GMT 0)

onecolitis1 said...
  Make sure to stay away from fibre and dairy when taking cortifoam

 

and why exactly is this??

q

Posted 4/19/2013 11:17 PM (GMT 0)
With the VSL normally you start with a half a packet and work your way up. This decrease gas bloating and discomfort from the changing of the bacteria. The recommended dose is anywhere from 1 to 4 packets a day. I personally take two. If your insurance covers it you can get your doctor to write it for four and then take two and it will last twice as long for the same price. Good luck
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