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Ulcerative Colitis
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Posted 10/29/2011 1:57 AM (GMT 0)
Maybe the probiotics some people are taking are different than the ones I'm thinking of, but I recently got Frozen Kefir which has 10 probiotics, I'm wondering if anyone else has tried this?
Posted 10/29/2011 3:33 PM (GMT 0)
I have tried kefir but not frozen. They sell liquid ones which are like a yogurt drink. Most people here take pills or powdered probiotics I think. Maybe a few make SCD yogurt.
Posted 10/29/2011 6:25 PM (GMT 0)
I was lucky enough to get kefir grains from a woman I work with, & have been making my own for a couple years now- it is PACKED with living cultures, way more than store-bought, which can be pasteurized after it's cultured. I do take powdered or tablet forms of probiotics too though, not as often now as I used to. I know if you freeze kefir grains, they go dormant, so not sure what the deal is with the Frozen Kefir you are using.
Posted 10/29/2011 7:30 PM (GMT 0)
Good to know! I'm really looking into probiotics because alot of people have good things to say about them.... I'm currently weaning off prednisone right now down to 10mg... and my symptoms are coming back :( Still on 800mg asacol 3x a day, taking L-glutamine and Fish Oil and Rainbow Light multivitamins with probiotics... Somethings gotta give here, I really dont want to go on anymore drugs!!!
Posted 10/29/2011 10:13 PM (GMT 0)
well, you're only on the one drug, asacol. Which has been in use for ages, & has quite a safe reputation for long-term use. Are you averse to adding in rectal meds? (Yay for me!, huh Quincy?? tongue ) The steroid enemas & the other ones, I forget their name... both are really helpful, but they're a drug. Is it just particular drugs you want to avoid, the immune suppresants? Cause when you look at people's sigs on here, very few, if any, are on asacol alone. Bummer about symptoms returning while coming off pred- go slow, so slow you'll go crazy! But the slower the better, even if you only lower the dose by 2.5mgs a week.
Posted 10/30/2011 1:22 AM (GMT 0)
I dont know how that can be possible with 10mg pills, I can't really cut anymore than in half, but I get what you're saying. Yeah i understand Asacol alone isnt really beneficial but I'm in a period where I'm about to meet with my doctor and try something different because prednisone is giving me allergic reactions and side effects.

A week ago or so ago before I started tapering now to 10mg, I was on 40mg pred. and was going once a day, formed stool, no blood!... but I just dont want to get my hopes up thinking if i stick with it for say 6 months that I can start tapering and assume i'm healing just like my uncle did....
Posted 10/31/2011 2:28 AM (GMT 0)
GET ON LDN. Seriously.
Posted 10/31/2011 2:28 AM (GMT 0)
And see if your insurance doesn't cover VSL 3 DS.
Posted 10/31/2011 2:35 AM (GMT 0)
No thankyou. I am not depressed and do not need an immune suppressor, which would cause another Candida infection/yeast overgrowth.
Posted 10/31/2011 1:52 PM (GMT 0)
Rowasa enemas-keeps me in remission along with my Lialda. When I tapered off pred the symptoms came back...started the rowasa nightly and everything went away pretty quickly and stays that way on a maintenance dose.
Posted 10/31/2011 3:36 PM (GMT 0)
huh... I always got pred in 2.5 mg pills- very tiny, you take a ton at first, but it's the only way to go re. tapering off. well, hope things turn around for you- let us know how your doctor's appt goes, what they suggest, etc. LDN isn't an anti-depressant, not to my knowledge, nor is VSL. Neither are immune suppresants either- or maybe LDN is, I don't know all that much about it, truthfully.  

Posted 10/31/2011 3:50 PM (GMT 0)
I thought you were going to ask your GI about enemas? Seriously, I cannot stress enough how important I think it is that you try them. Call your GI and see if he'll write you an Rx w/o seeing you in the office. Many will. Or, if he wants to see you before writing the Rx, just go. They make a HUGE difference for most who use them.

Asacol alone *is* beneficial. It's still helping the upper portions of your colon, and is doing some good on the lower portions. But not quite enough, which is why the enemas would most likely help you.

And like Eva says, pred comes in 5 mg and 2.5 mg (and maybe even 1 mg, I'm not sure)
Posted 10/31/2011 7:01 PM (GMT 0)
Eva Lou was kind enough to send me some kefir grains a while ago (Thanks again Eva Lou!) which I tried to culture. I'm not sure if I was doing it wrong or what, but my results turned into a slimy mess of sour milk.

Luckily, my Supermarket started carrying flavored kefir again (I like the blueberry), and I have been enjoying it immensly. I'm not sure if it is helping my UC or not as I've been in remission for a couple of years, but it makes a great breakfast suppliment.
Posted 10/31/2011 11:37 PM (GMT 0)
I want to co-sign the enema suggestion. When I was tapering off prednisone, every time I would reduce the dose, the bleeding would start again and the enemas would take up the slack for me until my body got straightened out.

I get pred in 10mg pills but my doc says it's no problem to break them in half twice. At that amount, he says, it's okay to be a little imprecise.
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