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Remission by VSL3 enema

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Posted 7/7/2010 10:02 PM (GMT 0)
Berkuc - if you do then check out Borody's protocolto make sure it was saline rather than distilled. I wouldn't want to send you down the wrong route although I am pretty certain it was saline.
Posted 7/7/2010 10:44 PM (GMT 0)
so, lynn4221, i asked my gi today about the fecal transplant thing and he sounded like he thought it was too unsubstantiated to give it a real recommendation, but when i mentioned the probiotic enemas he lit up a bit and said he felt that was more reasonable. however, he did mention that he believes probiotics are more readily populated in the body when taken by mouth and he recommended the over the counter brand "align" and he gave me some samples of that. he's not the most open-minded when it comes to alternative treatments, but he isn't an alternative practitioner... he did seem to be a big proponent of oral probiotics, though, so i will continue to take those and maybe in a week or so when the prednisone has had a chance to work down some of the inflammation in my sigmoid/rectum, i think i will try mixing the vsl3 and some saline (if i can get it) and see how that works for me.

and, idkwia, i absolutely understand that the real deal feces from a healthy donor would be ideal to repopulate the gut with the proper balance of bacteria, etc, but i also agree that it is much easier to try the man made probiotics that i have already on hand. so i will do that and hope for the best. if, someday, it comes down to needing the real deal, i will enlist one of my baby nephews to donate a poo sample.

take care all. and keep us updated!
Posted 7/7/2010 11:03 PM (GMT 0)
Earlybirdspecial - good luck with the VSL#3 enema and let us know how it goes.

Maybe you have tried, but if not you may be interested in the following:- Low Dose Naltraxone and the Specific Carbohydrate Diet. A lot of people get a lot of relief from UC by these. Personally I think that probiotic infusion is the most compelling therapy of all but that doesn't mean that other things cannot be tried in tandem. 

Posted 7/7/2010 11:14 PM (GMT 0)
Any of you that have a doctor who will at least acknowledge supplements or alternative therapy are so lucky. My GI in one of my last visits actually told me to stop taking Fish Oil and I didn't have to stop taking my probiotic because he saw no harm, but said there has been no evidence that it does anything to help and if I thought I was taking too many pills that, that could be cut out. What? I am not saying either of those things will cure me by any means, but come on, how can you say you don't think probiotics even help?

If we weren't moving in a couple months, I would change doctors, but it isn't worth it at this point!
Posted 7/7/2010 11:23 PM (GMT 0)
My daughter's first GI warned us against probiotics. She didn't realize VSL was used for UC (only pouchitis) - she is a pediatric IBD "specialist". We ran out of her office as fast as we could. New GI is much "better" but really not that willing or able to do much outside of the orthodoxy - especially for a child.
Posted 7/8/2010 12:00 AM (GMT 0)

idkwia said...
Earlybirdspecial - good luck with the VSL#3 enema and let us know how it goes.</DIV>
Maybe you have tried, but if not you may be interested in the following:- Low Dose Naltraxone and the Specific Carbohydrate Diet. A lot of people get a lot of relief from UC by these. Personally I think that probiotic infusion is the most compelling therapy of all but that doesn't mean that other things cannot be tried in tandem.

thank you, idkwia. i have been taking the ldn for the last several months and, initially, i felt that it helped a great deal, but now i don't think it's having much effect one way or another (much like every other drug so far; it kind of wore off). i haven't yet tried the scd, though i am considering it more and more these days. i've tried a lot of different diets and have been consistently frustrated by all of them, but this could be worth a try... i think i'll look into it!
Posted 7/8/2010 2:11 AM (GMT 0)
This is very interesting to me. I am currently on prednisone for a bad flare. Luckily I am currently doing very well (other than all the crazy side effects). If I begin to flare again as I taper off, I may try this.

Has anyone ever had any negative experiences with this sort of thing? Are there any potential complications? (I can't think of any)
Posted 7/8/2010 4:52 PM (GMT 0)

I did my first yesterday before bed. 1 cup of water with one sachet of VSL#3 orally and 1 cup of distilled water with one sachet of VSL#3 by enema. After the enema - 10 minutes on one side, 10 minutes on the other side, about 2 minutes on inversion table (complete upside down) then slept through the night. Retained it overnight. BM in the morning. Beginning with softer then the rest almost formed stool. Not feeling any difference in symptoms yet - not better, not worse. Planning to do 5-6 more days of the same unless I get worse. I am not sure if this will help at all but I am thinking, like many others here, that it shouldn't hurt. If I don't improve will seriously consider FT.

Will let you know how it goes.   

I have also been drinking about half cup of Kefir with almost every meal for the last 3 weeks.

Posted 7/8/2010 6:09 PM (GMT 0)
Thanks for the post BarcaFan--

What did you use to administer the enema; was it an enema bottle or bag?


Please keep posting with any updates--

thanks-
L

Posted 7/9/2010 4:20 AM (GMT 0)
Lynn4221 - I used enema syringe that I bought from CVS. Will keep posting updates.
Posted 7/9/2010 3:14 PM (GMT 0)

BarcaFan said...

I did my first yesterday before bed. 1 cup of water with one sachet of VSL#3 orally and 1 cup of distilled water with one sachet of VSL#3 by enema. After the enema - 10 minutes on one side, 10 minutes on the other side, about 2 minutes on inversion table (complete upside down) then slept through the night. Retained it overnight. BM in the morning. Beginning with softer then the rest almost formed stool. Not feeling any difference in symptoms yet - not better, not worse. Planning to do 5-6 more days of the same unless I get worse. I am not sure if this will help at all but I am thinking, like many others here, that it shouldn't hurt. If I don't improve will seriously consider FT.

Will let you know how it goes.   

I have also been drinking about half cup of Kefir with almost every meal for the last 3 weeks.

 BarcaFan - well done for giving it a try. Keep us posted. BTW, what do you suffer from?


Posted 7/9/2010 11:43 PM (GMT 0)
So I read something interesting today that is a similar concept to a probiotic enema. I have been researching Kefir and Kefir grains because I wanted to start making it at home in addition to my yogurt. On one website the man had UC, he did a Kefir grain enema. Kefir grains that you make kefir from are supposed to be very good for you and claim to be anti-tumor and anti-inflammatory. Also from what I have read Kefir has more probiotics than yogurt.

Anyways this guy did a brown rice diet for 7 days to help stop his D and remove toxins, then he did an enema from blended Kefir grains and chamomile tea. He says it has stopped his UC.

Found this very interesting because this is another version of putting the good stuff right where it matters! I think I may try this next, but I have to wait for my Kefir grains to multiply. I only have enough right now to make one batch of kefir.
Posted 7/10/2010 1:56 AM (GMT 0)
Second day - definetely not worse, but can't tell if I am any better. Retained it again all night. Morning stool was diarrhea like in the beginning with formed stool towards the end of BM. Yesterday i had two BM's, today one.

idkwia - I have UC of the whole colon, and got C-Diff and CMV on top of it.

Posted 7/10/2010 1:59 PM (GMT 0)
How are people doing with this?

Has anyone has any adverse reactions, or are things going pretty well?

Thanks-

L

Posted 7/10/2010 10:36 PM (GMT 0)
I have been doing 1/2 pack of VSL3 on alternative days for more than a week now. Blood stopped after the first dose for me. I am having 2-3 semi-formed BM per day. The first one in the morning after the day of enema is bit more urgent! Bloatining, cramping, and gas symptoms have got prrogressively better over time. I plan to follow the procedure until I feel fully confident. I continue to take 2 packs of VSL3 (orally) and other supplements daily, which I do even during full remission.
Posted 7/12/2010 8:13 PM (GMT 0)
Any updates from the people currently using the VSL #3 enema?

I hope everyone is doing well--

L

Posted 7/18/2010 2:14 AM (GMT 0)
What's the latest dope on this?

I'm planning on trying it tonite anyway.
Posted 7/18/2010 4:36 PM (GMT 0)
Well, no instant remission for me I'm afraid.

In fact I've had a rough morning (4x in first hour)

It just may have been last nights tikka marsala though.

I'll try it again in a couple of nights to make sure.
Posted 7/20/2010 7:35 PM (GMT 0)
I have also read that its a good idea to retain enema and lay on left side, then flat, then on right side and hold as long as possible. I think the probiotic enema might be a good idea. Hadn't heard much about VSL3 until reading this forum. BUt I agree IDKWIA..i think the real deal is the gold standard!!
Posted 7/21/2010 11:01 PM (GMT 0)
Well, I wasn't having as much success as I hoped for the VSL3 enema. It definitely helped, but wasn't pushing me any further ahead, like into remission. I started making my own Kefir and I had read about the guy that says he put his UC in remission by doing a few things, one of which was Kefir Grain enemas.

2 nights ago I started doing them. It is really helping so far. When I started drinking the homemade Kefir twice a day I noticed a good difference now that I added the Kefir grain enema I am almost back to normal. It helped so much the last 2 nights I am hoping this will actually push me into remission. I don't have the urge to go right when I wake up like the the VSL3 enema. In fact today, I didn't even have to go to the bathroom when I woke up, weird for me! I have only gone once today, after I ate lunch and no pain/cramps. I was already having no blood, but as of Sunday I was still having pretty good cramps, especially in the am. After the last 2 days, no pain no cramps.
I followed the guys protocol and did 1/4 - 1/2 a cup of luke warm chamomile tea blended with Kefir grains and do it right before bed. I have been retaining them for about 15 hours. Of course he does say it is best not to start these until the D is more under control. I had already gotten that symptom under control so that wasn't an issue for me.
Posted 9/3/2010 7:24 PM (GMT 0)
I tried half a pack of VSL #3 DS last night straight into the Rowasa bottle. During the night I had rumblings like crazy, something that is uncommon for me. Don't know if there was a connection or not. I may use just a little bit of the probiotic tonight and nightly for about a week and see if I notice any change. Has anyone else been trying this since this last post in July and have a status update?
Posted 10/21/2010 5:26 PM (GMT 0)
Hi All,
It has been sometime since anyone posted here so I thought I would ask for an update from anyone, especially those of you who tried the VSL#3 enema and one of you who tried using kefir. And if any of you have since tried using faeces then that would also be very useful.
Posted 5/5/2011 6:31 AM (GMT 0)
Hi All...so I have a very interesting VSL#3 enema experience.

Been plagued with ulcerative colitis since I took an antibiotic (septra) a year ago. Started as proctitis and now climbed on up about 10 inches....ugh!!

I'll try to keep it short but after many many trials, the only thing that worked (and I've tried what seems like everything both conventional and alternative) was a probiotic enema. The first time I did it I was using ultra flora 50 billion, and that worked, like a charm! I could be in such a flare, blood, mucous, etc and wham, retention enema overnight and gone with normal, non bloody poo the next day. so bizarre. I tell my doc this, that I KNOW my colitis is because my good bacteria were f'ed up from taking the septra...he thinks i'm crazy but I KNOW this is why. Two days after taking Septra, I began bleeding. Makes so much sense.....anyway the enemas stopped working and I left it alone for a few months....and just put up with it.

Recently I was in a huge flare, so bad. I mixed 1 packet vsl#3 with slippery elm (1tsp powder) blended it up with about 4 oz filtered water and shot it up (I use a 1.5 oz syringe with 2 inch tip, multiple fills and it works great). Went to bed. Three hours later I wake up shaking, freezing cold, think I'm just getting sick....cover up with more blankets, shake for 2 hours, fall back asleep. Wake up drenched in sweat. Feel horrible the next day, but I don't have to poo a million times and again, I think I am just getting sick. This is were it gets interesting....skipped a day, and did it again two nights later and the exact SAME thing happened. Within a few hours, uncontrollable shaking, wake up drenched in sweat....BUT BUT I have normal poos after this.

Luckily my ER nurse friend was around when this was happening and we researched the heck out of it. The only two things we can come with is my immune system is kicking in and either 1. I'm having a herk detox reaction or 2. the bacteria is causing "some kind" of immune response. The cool thing is, the last retention enema gave me great poos and kept the bleeding down, etc. for almost 10 days. I took the VSL3 down to 1/2 a pack with the slippery elm and no reaction. I also tried just slippery elm to make sure that wasn't causing the reaction, nothing. So SOMEHOW the bacteria are doing SOMETHING. The trick for me is how to keep this "good" bacteria in the colon long term?? I did try fecal transplants with not much success...I also take tons of probos orally.

Anyway, just wanted to share my experience. I am 100% sure my colitis is related to a depletion of good or a multiplication of too many bad bacteria in my colon....but what to do next? Just wanted to share this. If ANYone had the same reaction or has any advice, would love to hear it. This forum is better than any doctor's office. Most conventional docs are SO clueless. It;s scary how little they know, or want to know.

Best to all,
c
Posted 5/5/2011 1:17 PM (GMT 0)

Somebody said...
Jini Thompson's recipe recommends Natren probiotics which are pretty weak (about 20 billions or so) compared to VSL3.

That is interesting and makes sense to me.

It is possible to get it all the way to the other side. I have pan-colitis but was doing fine until I got stopped up over on the right side where the small c empties into the large c. The emergency room said it was not my appendix, cat-scan showed blockage and had me drink a solution but I was so sick at that point I could not keep anything down and tried a saline enema at home to end the torment and rolled after a minute to the other side and it went all the way over and I finally had immediate and lasting relief.
Posted 5/5/2011 3:32 PM (GMT 0)
Interesting indeed! Did you achieve relief with just saline? Hope so! I do think the cause of the intense immune reaction was too many probos, but it worked so well...worth it to go through it again? Is it dangerous? Man, I wish there was a clinic that specialized in "alternative' treatments that could guide people through and answer questions....sure is nice to vent a bit on here with people that get it. argh!
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