During my exam the Dr. took biopsies of about 10 small ulcers in the pouch area. It was determined that none of the ulcers were cancerous and for that I am relieved. After the lab report the Dr. advised taking 1,000 ml Canasa suppositories twice a day for a month and then once a month for another month and no two suppositories for another month.

During my discussion with the Dr. he indicated there may be some benefit from taking a probiodic to help me stay well. He kind of left me on my own to find what ever probiodic I wanted to buy as long as it contained Lactobacillus and Bifidobacterium. Since there are so many probiodics I just ordered PB-8 which contains: Lactobacillus acidophilus, Lactobacillus plantarum, Lactobacillus rhamnosus, Lactobacillus casei, Lactobacillus paracasei, Lactobacillus salivarius, Bifidobacterium Bifidum and Bifidobacterium longum.

My question is what do I hope to gain from taking the PB-8? I don't have any idea when to get another exam of the pouch and I am wondering if the ulcers are still there and is that a problem? I only got the exam in Sept. because I met a Dr. on a road trip, who thought it was a good idea to check for cancer. Due to the small section of the colon left at the rectum site that he says is still pron to cancer.

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Wow the response to my post is interesting, I thought by now someone would be able to tell me how they benefited from taking probiodics and what that benefit was.

John

This is an amazing forum no response yet, I was sure I would here something back from some of you that must be taking probiodics? I am curious if someone like Jan Dollar has any insights into the benefits of probiodics? She appears to be one of the most knowlegeable people responding to questions?

Well I went to see the Sherlock Holmes movie tonight and it was pretty good. During the movie my stomach was doing alot of gurgeling and I had a tremendous urge to go to the bathroom, put I made it through the whole show and waited until I got home.

It is interesting how friends always think you are just hungry when that gurgeling is going on.

John

This message has been edited. Last edited by: John Finch,

I'm sure no one has responded because it's Christmas. But I'm sure they'll be along.

I can't answer your question because I don't regularly take a probiotic. But our sponsor - VSL#3 is (I believe) the only probiotic that has been okayed by the FDA for medical use. Click on their link above to read more about it.

kathy

I was told that taking a probiotic might help to ward off incidents of pouchitis so I have been taking them almost daily for 9 years. Actually, I have been taking probiotics for more like 38 years but I only seriously looked at the quality of probiotics after surgery.

My first probiotic was PB-8. I took it for several years post surgery. Never noticed anything positive or negative about it. Someone posted something positive about FloraQ after their GI recommeneded it. I switched to FloraQ and after about 6 weeks noticed a decrease in frequency. FloraQ is expensive so after a while I switched to Culturelle and found myself not feeling as well so I went back to FloraQ and then found its generic equivalent of Risaquad which is much cheaper. I have now been taking Risquad for several years.

I don't know if probiotics work; my results might be wishful thinking or psychological. However, I will continue to take the ones that I do think make me feel better in hopes that it does keep incidents of pouchitis at bay or minimized. Probiotics are an inexpensive form of insurance, if they work. If not, they certainly don't hurt.

Everyone has their favorite probiotic; I think it's trial and error as to what you might find beneficial.

Sue

SB:

Thanks for your response. I ordered the PB-8 due to the competitive pricing and will try it out. I am curious if you ever incease the recommended dosage if there doesn't seem to be any benefical change at the recommended two per day dosage. The VS#3 appears to have a much higher bacterial count so is that why it is so expensive?

John

Normally I take one Risaquad per day. I have ocassionally upped the dose to 2 per day if I start to feel unwell.

Sue

I have been taking probiotics even before I had my surgery, my GI said it would put good bacteria in my colon (at the time). Afterwards I began Flora Q, but it doubled in price over the years, so I take the generic one also. I have had pouchitis on and off over the years, and normally quit taking it when I take flagyl. This last time I took my flagyl in the morning and my probiotic in the evening, because each time I started over taking the probiotic, it took two weeks of more gas etc. before my body adjusted to it again. At times I have gone for 6 months to a year taking it and not having pouchitis, so I do think it helps our bodies.

Good luck.

PS I get the gurgeling too- why is it so loud!!!

55:

Thanks for your response.

When you get pouchitis what changes for you besides frequncy of having to use the bathroom? Is it possible in the last 26 years that I could have had pouchitis at some time and not known it and never have taken an antibodic to control it?

I have had several infections over the years that I have taken an antibodic, put never for having 10+ bowel movements a day. I always figured it was normal.

When having a pouch exam has anyone ever had small ulcers embedded in the wall of their pouch? If so, how was it treated?

What does the pouch look like when one has pouchitis?

John

Besides going more (and I usually go 8 times a day- I don't even count any more, just go when I urinate if needed), I feel more urgency to go, and more pouch cramping, and like I can feel my pouch when I am sitting down. Sometimes my back will ache and I just don't feel well.

On the pouch exam I get every six months to a year (depending on if I do have a problem), my doctor will tell me the pouch looks good, has a few ulcers, or has a lot of ulcers in it. If that is the case, he puts me on flagyl for a month to 3 months at a time, to clear it up. Some people take it twice a day, but it makes me feel bad, and slows my movements down a lot, and harder to eliminate, so I just take it once a day. I guess the doctor can see inflamation thru his scope when he examines me.

Some people in the group take antibiotics daily forever, or rotate them so their body does not get used to them. Who knows, I may end up that way later on, but for now I try to use them when I have ulcers etc., and then use probiotics to try to keep the pouch healthy.

Some people never have any problems, and some do- our bodies are just different, and our disease attacks us differently.

Good luck.

Linda

i too have a fuzzy sense about which probiotics to take..because they all have different ones and different amounts..it would be helpful if we knew what bacteria actually existed in our small intestine wouldn`t it?

i suffer from i guess antibiotic dependent pouchitis and culturell is only one that says you can take with antibiotics but i even wonder if separatong the taking of each enough can still provide good bacteria..

actually i do not think probiotics successfully manages pouchitis for most people (and this was told to me by dr. bo shen at cleveland clinic)..but i like to take it because perhaps i am keeping candida away which can be very serious side effect from antibiotics..
but again who knows what works?

sue can you tell me where you get generic for culturell?

rebe

505:

Thanks for the response. I just took the third PB-8 an hour ago, so I am wondering what benefit I will be experiencing tomorrow morning when I run to the LU (sp?).

I did eat four pieces of fudge tonight that my neighbor gave me, so I am not sure how that may change the result. My stomach is doing a lot of growling, so it could be an interesting night.

John

John,
You can do a search to see what others have said about probiotics. There is lots of info.

I've been taking VSL #3 for a couple of years and have no pouch issues. It is expensive and my insurance doesn't pay for it.

Rose

Rose:

If this search method you referred to is simple and not time consuming can you advise me how to do it? I have done a Google search on what to expect from taking a probiodic and I have reviewed a number of postings, but prior to my posting I didn't get anything that satisfied my quest for a potential solution an ulcerated pouch.

Since I had about ten small ulcers in my pouch that were biopsied I am curious if other people on the forum have had this similar situation and whether probiodics eliminated the small ulcers?

Have you ever tried a less expensive probiodic than VSL#3, or is it the only probiodic that appears to have kept your pouch in good health to date?

Since you say you have a healthy pouch how many bowel movements do you have a day and how solid is the stool? I would say my stool is like very runny pancake batter.

Thanks in advance for you helpful comments,

John

Hi John,
To do a search on our j-pouch site, look at the headings at the top of the discussion board topics. You will see the word "find." Click on that and you can enter the term "probiotic" or whatever you wish. There are over 50 pages of discussions here.

I've only used VSL#3 because it has some research behind it. I'm chicken to stop it and start using something else, although other probiotics do seem to work well for some of us. I may experiment with some of these, such as Florastor, Flora Q, Culturelle, or Align to see if there is any effect along with the VSL, but I haven't done so yet.

I have anywhere from 6-8 movements a day, mostly because I poop when urinating, whether I have to or not. It also depends upon what I eat. There is no urgency and I could hold it if need be. I don't even think about having to go, which is a big difference from my old UC days.

As for consistency, it very much depends upon what I eat. If I am being good and eating lots of fruits, cooked veggies and healthy foods and staying away from sugared and ultra-greasy junk foods, the consistency is mushy-to-formed. If I eat too much junk or raw veggies, the consistency will be watery.

Rose