Anyone have trouble adjusting to probiotics?

Which probiotic are you taking?

I've been taking prescription strength VSL#3DS daily for over a year.

As far as I know I've never had pouchitis. I've had cuffitis, which is UC in the rectal cuff.

I don't know if it's working but assume it is. I don't think it's caused me to go more often.

I've been going slightly more often since I started taking probiotics (just an over the counter brand). I've gone from about 3 trips per day to 4, so no big deal (of course that could also be from regaining my appetite and eating everything I see).

Probiotics are basically like anything else. When you first start them, there may be an adjustment period of 2-4 weeks. I had increased gas when I started on probiotics which was bothersome, but improved as I continued. I won't go without them now. I really think they've helped my general pouch function.

Spooky-what probiotic are you taking?

I am actually taking a generic lactobacillus acidophilus as well as 1 Danactive probiotic drink a day and probiotic yogurt. That amounts to about 20 billion daily.

I don't take VSL#3 (too expensive and my insurance won't cover it) and Align is seemingly not available in Canada. I've tried a few different probiotic brands from the health food store with varying results (the biggest problem I had with some was very intense gas that I just couldn't tolerate). I find my current regime seems to work best. As with anything else, you may need to rotate your probiotics until you get one that you think is working for you.

The probiotics I tried were...Primal Defense Ultra and acidophilus pearls. They both made me go about 20 times daily. When I stopped I pretty much went back to my normal. I must be sensitive to probiotics. Anyways, I cut back to just one acidophilus pearl a day (1 billion CFU)and I am better. I do not know if it is enough to do the trick and help keep my pouch from pouchitis but we will see.

After trying Align and that ridiculous VSL. It all made me worse and I believe kicked in pouch issues since I would go back on Omnicef and it would go away. Now I am a bit calmed down so don't need to be on non stop antibiotics but I just don't believe probiotics work if you don't have a colon. I need more science and studies, so far my local GI isn't really suggesting them anymore. The surgeon here I over hear mentioning them to people with jpouches to control gas but he usually mentions Align over VSL. I tried Align and thought it helped with gas but after weeks it went down hill very fast and had a horrible infection.

I think I mentioned in another thread that Walmart has a "house brand" probiotic which mimics the ingredients of Align and is about $10 cheaper. It is called "Equate." I think it is about $16 for a 30 day supply. Although I take it, I am not convinced, nor are any of my pouch experts, that probiotics actually does anything to assist in combating pouchitis. I think I take it mainly to try and maintain a good balance of bacteria in my gut. I think those who look at probiotics for something more, and as a treatment modality, may be in for harsh disappointment. I have also taken VSL#3, Culturelle, and Align as cold turkey treatments for pouchitis and they did not work.

Spooky, I believe they have Walmarts in Canada so you may want to look at "Equate" which is a cost effective alternative to Align.

What about the studies by VSL#3 for pouchitis? One thing I did read about probiotics is it is to help maintain after treating with antibiotics first and cannot be used cold turkey for pouchitis.

Dr Bo shen from what I am told doesn't suggest VSL and he is the pouch doctor of choice. So when I see him I will pick his brain about them. But every time I go on a probiotic I have serious issues, the stench alone that comes out of my BCIR is enough to knock anyone out. I have no smelly stool when off them.

quote:

One thing I did read about probiotics is it is to help maintain after treating with antibiotics first and cannot be used cold turkey for pouchitis.

When I said cold turkey, I meant I used antibiotics 1st, got the pouchitis under control, then went "cold turkey" OFF antibiotics and on to probiotics alone. Massive fail all 3 times it was attempted, including with VSL#3. MASSIVE FAIL.

FYI
Whatever probiotic we use it is important to use one that has been refrigerated and you need to keep it refrigerated as well. When you read the label on products sitting on a shelf the box or bottle will say something like (10 billion of active XYZ bacteria at the time of bottling.) Bacteria start dying off when not kept refrigerated. For example VSL #3 says on the product that the the packets will still be effective for as long as a week without refrigeration. My nutritionist sells probiotics and keeps them refrigerated and told me to keep them refrigerated. I quit using the ones she sells as they have around 10 billion per serving and VSL#3DS has 900 billion and 8 different strains of bacteria. I'm thinking it might be an over kill using one packet per day. The instructions say to use 1/2 to 4 packs per day. I'm also thinking there is a different kind of bacteria I should be taking in addition to the VSL.

The instructions say to use VSL three hours before and after doses of antibiotics, if you are using both at the same time.

I've decided that probiotics just aren't for me (too much gas).

I am currently dealing with my first episode of pouchitis. As a consequence I dipped into the medical literature to learn more about its causes and treatment. I came across two review articles (one of which was written by Dr. Shen) that suggests pretty strongly that probiotics (in particular VSL#3) can be helpful in the treatment of pouchitis - at least from the perspective of maintaining remission in non-antibiotic resistant forms of this condition.

Since the information presented in these articles may be of interest to others on this list I thought I would post a separate thread. I will provide citations so you can read for yourself, although you may need to acquire the articles through your doctor.

As an aside I just saw my surgeon yesterday. He prescribed vsl#3 as part of my treatment and was quite enthusiastic about it's potential. We'll see how it works out for me. Thankfully it is covered by my insurance - Woo Hoo!

Thanks TinCan,

I was sure I'd read a paper by Dr. Shen about the benefits of VSL#3. It looks like he might have changed his mind or something as some of the board members reported in this thread.

I'm going to continue taking it for the same reason as DBHusky - to keep it my gut. I don't know if it is helping but I'm not having side effects like some have posted on here. I went off of it for a couple of weeks a while back and nothing changed like frequency or gas, etc. I was worried something, like pouchits, might start so it's probably giving me mental relief if nothing else.

Compared to the over $18 daily cost of the Canassa single suppository the cost of VSL #3 doesn't bother me at this time. I already have chronic cuffitis and don't want pouchitis as well. My insurance covers it only after I reach my husband and my first $4,500 in medical costs so I do pay for it until we reach that limit. Since he is healthy as a horse I'm the only one with medical costs and reached the $4,500 the end of April this year. So insurance will pay for it until the end of the year.

a prominent surgeon said that VSL is not worth the expense and there are other just as effective probiotics out there (align, culturelle)....

my pouch is only 3 months old and i can't tell if probiotics are helping or upsetting things. might experiment later when things settle down.
for now, i will continue eating yoghurt.

The new thread I posted is entitled "Review Articles on Pouchitis". Both were published this year so provide a good overview of current thinking. I personally find the evidence for the efficacy of probiotics to be intriguing and certainly think vsl#3 ds is worth a try (I didn't see mention of any other brand of probiotic in either article). As reflected in the articles, probiotics are not considered the magic bullet for pouchitis, but very well may be a piece of the puzzle.

Ultimately though you can judge for yourself.

Thanks Tin Can. I agree about it being a piece of the puzzle. Our colons contained flora or whatever it's called that the small intestine used to make the j-pouch doesn't have. Therefore it makes sense to use. They say the j-pouch takes time to get use to it's new job and maybe it does get the same flora as a normal colon has in time.

I would imagine in time the pouch would colonize itself with its own intestinal flora. I have a feeling using probiotics too early might now be a good idea. The small intestine isn't designed to handle bacteria of that magnitude (I couldn't help making the Admiral Akbar reference there).

As the pouch adapts and the tissue becomes more colonic in nature, then I would think intestinal flora might once again become a friend to good digestion.

I take something called Florajen. Another lactobacilluss culture. It was recommended by my surgeon who also said VSL was just expensive overkill.

Perhaps recommendations of other probiotics are made on the basis of everyday use for the purpose of gut maintenance? The application of vsl#3 in the review articles I posted were specifically for the treatment and/or prevention of pouchitis. If you don't have pouch problems then it may not matter which probiotic you use - if any.

On the other hand, if you are combating pouchitis, I find it difficult to argue against the possible value of vsl given the evidence found in clinical trials.

As to cost, yes it is expensive. Fortunately it is covered under my insurance plan, making it very affordable (indicating that insurance companies take it seriously as a treatment option). I'm very thankful for that.

I am just finishing a course of cipro for pouchitis and then will try VSL3 as advised by my gastro consultaant. Willing to try to see if will stop pouchitis returning. Will let you know.

notsotough - I am also taking cipro for pouchitis but was adivsed to take the vsl3 simultaneously. Two or three hours after taking the cipro I have been draining a packet of vsl#3ds.

By the way, I noticed in your signature that you have joint problems. Are they related to your pouchitis? I ask this because I apparently have developed a case of pouchitis arthritis - effecting primarily my knees.

I think the pamphlet with VSL#3DS says to do 3-4 hours between it an antibiotics. I don't know for sure but that's what I've been doing and I have "brain fog" moments.