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VSL #3 questions on dosage, blood, bms and urgency

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Ulcerative Colitis
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Posted 11/18/2009 11:49 PM (GMT 0)
For those for whom VSL-3 has worked, I would like to know the number of packets that you started on, and the degree of symptoms you had when you started it. Were you able to reduce the daily dosage, or maintain on one to two packets a day.

I realize it's a waste to take too few packets. Also, I would like to reduce the number of bowel movements, and reduce the bright red blood, which for my GI is acceptable (not for me) My GI wants me off prednisone and I'm at 10 mg tapering from 40. It's my second taper. I freaked out when I saw blood the first time because my flare, which landed me in the hospital twice, was never blood, just tons of brown water, I landed back at 40 at my request. GI wanted me to stay the course.

Also, have any of you had reduced urgency as a result of taking VSL... . I understand that you may be taking other things that have helped.

Ellen
Posted 11/19/2009 12:21 AM (GMT 0)
I started with four packets in mid-flare. Two in the morning and two at night. I mixed it with 2 tsps psyllium husk powder and 1 tsp of glutamine. Now I'm down to 2 packets. Once in the morn and once at night. I'm in full remission now. Just got the blood lab results today and I have no inflammation. But I have mixed it with western meds, ayurvedic herbs and diet, and acupuncture so I'm not quite sure if this protocol will work for everybody. I also got stool results back stating my intestinal flora is above normal, so I figure it is working.

Just as note though, I do remember while flaring when I wasn't digesting my food all that well, that I'd notice my bowels kinda smelled like VSL #3. Gross, I know. But that showed me that I wasn't fully digesting or absorbing it. I think it's a combination of everything but it is important at that. If you're really concerned, look into getting stool testing that tests gut flora, then you'd know where you really stood when it came to friendly bacteria.
Posted 11/19/2009 12:51 AM (GMT 0)
Bebushka, thank you for the good info. Are you able to absorb a daily vitamin? My doctor wants me to go on a liquid vitamin
Posted 11/22/2009 5:29 AM (GMT 0)
Bebushka,
when you started your four packs a day on VSL-3 and you were mid-flare, what were your symptoms that characterized your mid flare...

ellen
Posted 11/22/2009 9:32 PM (GMT 0)
I started VSL while flaring.....only a moderate flare, 6-8 poops a day, blood, gas, urgency, but also discomfort/pain in the left side.
I started with one packet for several days then went to two.
My symptoms decreased some, not dramatically... I added another packet and started feeling queasy and very gassy - so I went back to two.
Started eating homemade (24 hour) yogurt or kefir - lots of good bugs in that.
Symptoms decreased some more.
I stopped the VSL to save money. Within 3 days, much more blood, frequency, D! (Guess it was helping after all, I deduced!)
Started bee propolis. I think it also helps a bit.
And flax oil. Can't tell a bit of difference, GI-wise, with that.
So... now I'm on one packet a day of VSL and two Ultimate Flora Critical Care.
I also started Rowasa enemas a week or so before the scoping.
Scoped in late September, and showed only mild inflammation in the area just out of reach from the enemas. Not bad, considering a year earlier I'd had severe inflammation up the left and across the transverse and the doc had wanted me on pred!
Now going 2-4 times a day, a little blood once every few weeks if I eat really adventurous foods (Mexican, lots of nuts and granola...) and feeling pretty darned good!
Posted 11/22/2009 9:39 PM (GMT 0)
oops, sorry for the slow response there...

I did start the probiotic mid-flare. I was having bloody diarrhea, undigested food, 20 lbs underweight, cramping, bloating, major urgency. BMs in the morn, midday, night, and midnights/early morn. I was having BMs about 15-20 times a day. It was awful...

I'm able to absorb and digest foods now including my multi-vitamin. I never had problems where my pills show up whole in the toilet like some people on here talk about especially with Asacol. But at the time, I didn't know if I were truly absorbing all those nutrients that's kinda why I was adamant about taking supplements to just try and keep my nutrient levels higher. During the flare, I remember seeing foods like any sort of greens, cooked or raw, pieces of white rice. It was like I could totally distinguish which meal I just ate. A good liquid vitamin might be better, but I always am such an advocate for high quality supplements from health food sources. Read the labels and ingredients...

How are your conditions now? I know you and I are on the same pred taper schedule. How are you sleeping also? I realized my UC started to really take a turn for the better once I started sleeping better. Wishing you the best...
Posted 11/22/2009 10:53 PM (GMT 0)
Hi Bebushka
My symptoms are more persistent, urgent D, some formation of stool, much looser than my first week on ten (this is my second week) so not good, I was supposed to drop to five on Saturday... I want to start VSL-3 now and see where that goes. It wouldn't hurt I guess...
Posted 11/22/2009 11:12 PM (GMT 0)
I started with one VSL #3 double strength packet a day and saw results in two days. My colitis is a little different, I must disclose. I was having a lot of left sided pain, pencil thin stools, cramping, gas but no blood. Two days after starting one pack of VSL #3, I had the first bm in a couple of weeks and it was just one of two today. The first one was small and looked like pebbles. That can be a sign of trouble for me. Recently, I have also had fatigue and knee pain again for the first time in a year. The doc wants to do another scope and CT scan but if I continue to improve, I may ask if they want to wait until I get sick again! Good luck to you. I hope the VSL works as well for you as it has me. I hope my luck today was not just a one time event.
Posted 11/22/2009 11:29 PM (GMT 0)
My mom is willing to invest in it, people in my family really care. .. about trying to get me off prednisone.
Posted 11/22/2009 11:55 PM (GMT 0)
Ellen-

That's awesome your family is willing to help out. My family is doing the same, too, and it's been a life saver for me.

Definitely try the probiotic. It is the most potent one I know off and it has helped a handful of us. I wouldn't, however, put all your eggs in one basket. Just add this as part of your arsenal to get you better.

Be patient with the pred. I know it's such an awful drug but becoming too eager to get off of it before your symptoms really get better could bite you back again. Talk to your Gi about it or even try and get a second opinion. This is longest stretch I've been on it also and I hate the thought of the side-effects. I even have the mooniest face still and weird hair growth around my sideburns. But for the length of time I'm on it really isn't long enough to cause too much damage, so I've been told. I've been on it since 9/1/09 and I was up to 60 mg daily for nearly two weeks. I'd definitely discuss your current symptoms with the GI, they might keep you on 10 mg for a while until your BMs improve and stabilize. Good luck..
Posted 11/23/2009 1:03 AM (GMT 0)
All your posts are informative and inspiring. I'm looking at an empty pack of Align (only $30) and can't see buying another. I don't know what it's doing for me.
Posted 11/23/2009 12:25 PM (GMT 0)
Where is the best place to order online? Is vsl3.com the cheapest source? I had asked my doctor about a prescription for this, but, amazingly, he had never heard of VSL3.
Posted 11/23/2009 3:02 PM (GMT 0)
Not surprised your doctor never heard of VSL#3, there are a lot of probiotics. Your pharmacy orders it for about the same price as online. I haven't checked the price of the VSL#3DS (shame they didn't name this something easier). The OTC version is VSL#3 and the prescription form is VSL#3DS (double strength). I am waiting for my doctor's nurse to call me with a prescription. When I asked my doctor for it he said he wanted his nurse to check on it first to determine if it was just a probiotic. He said probiotics are "fine to take" but he didn't think they would have a great impact for me. I believe they will.
I asked the nurse for a 3 month's prescription because my mail order pharmacy can get me name brand drugs for $60/3 month supply.
Posted 11/23/2009 3:21 PM (GMT 0)
A three month supply for $60 sounds a lot better than what I am seeing on vsl3.com. I was basing my pricing on using an avg. of two packets per day and came out with 5.33 $/day, or $488/3mo. Which mail order pharmacy do you use? Is the drug as effective as the ones sold at vsl3.com? I would love the cheaper price, but wouldn't want to get a different product.

I finally got my hands on 100% natural vitamin E this weekend, and there is no comparison with the natural/synthetic blend. It was definitely worth the increase in price based on the viscosity difference alone.
Posted 11/23/2009 6:30 PM (GMT 0)
What's the best way to consume this? I've just been putting it in cold water but it doesn't really stir in well at all.
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