Gut biome and probiotics

Hi all,

Mesalamines kept my ulcerative colitis in remission for 2.5 years but don't work for me anymore. In fact, I got VERY sick last year when my doctor tried to double my dose of Lialda to stop my first flare, she now thinks it was mesalamine-induced hepatitis. My UC has gotten a lot worse from when I was diagnosed and I'm currently on 50mgs 6-MP and since have failed TWO prednisone tapers over the past 6 months. I'm back up to 40mg prednisone again just to be functional. I HATE it and want to get off the steroids! I have an appointment in a couple of weeks with my doctor to talk about trying another medication, maybe moving up to biologics.

Anyway... The more reading I do, the more convinced I am that my "gut biome" is my problem. I am starting to have very little faith in my GI doctor who thinks any over-the-counter probiotic is good enough and could not even provide a single recommendation as to which product to try. She would not give me a prescription for VSL#3 DS when I asked. It's a moot point since I later determined that my insurance won't cover the DS version anyway. In my opinion, she also over prescribes me antibiotics. I've been on several courses of Xifaxin and Flagyl under her guidance even though I have never tested positive for C-Diff. When I questioned her about this, she vaguely said it would still help my gut. However, I think this must have destroyed almost all the good bacteria in my gut!

I have been getting the regular strength VSL#3. But due to the cost, I have only been taking 1 packet per day, orally. I know they recommend up to 8 (!!!) per day for active ulcerative colitis... but seriously... who can afford that? I have seen some improvement in my symptoms after a month of VSL#3, but not enough. So I need to either take more of it ($$$) or try taking VSL#3 via enema which logic suggests might be more effective.

I know there are lots of posts here already about probiotic enemas, but a lot of them are pretty old, and lots of conflicting advice. I'm thinking I will try maybe 1/2 or 1/4 sachet of VSL#3 so as to not overwhelm my poor colon. A lot of the other threads suggest saline but I worry that will sting, so I'm thinking distilled water. However, I also believe I will have a lot of trouble retaining a watery enema since I still have a lot of UC symptoms despite the prednisone. Any suggestions on what I can safely add to thicken the mixture?

Thank you!

The one issue with VSL #3 is that while it is better than many probiotics, it still doesn't contain that many different strains. The sad truth is they don't know which bacteria we need for a healthy colon (there might not be one answer to that question) and probiotics on the market are a small subset of potentially beneficial probiotics.

If you think dysbiosis is your problem, would you be open to trying diet modification? Some have had good success with it. In the interest of full disclosure, some have not, so don't get your hopes up too much.

I totally agree with you that the biome has a lot to do with things - I take VSL DS, and while it helps there are other things I do to help my flora. :)

I make sure I eat a good amount of resistant starch - green plantains and beans are my favorites. Some people have success having some potato starch every day - it feeds the good stuff.

The other thing I did was have my gut tested via uBiome - they don't give you a ton of info on how to interpret the results, but some folks on this board that are savvy gave great suggestions. My firmicutes were super high, and my bacteriodetes (might have mispelled that....not a scientist) were hardly there. The recommendation was made to start taking Grape Seed Extract to balance things - I noticed a great improvement from incorporating that.

Good luck!

brucen36 said...
Why don't you try homemade kefir? Lot cheaper than VSL.

This or SCD homemade yogurt would be more powerful and cheaper.

I think you are on the right track with probiotics although it could take you some time to see results. VSL#3 and other probiotics (L. reuterii, Lactobacillus) got me to a healthy place and now I don't take them, only when needed.
Keep a journal of what you do and then look back in 6 months and see if you have gotten improvement.

Here is a link with a quote below from study report by National Institute of Health:
www.ncbi.nlm.nih.gov/pmc/articles/PMC3002586/

Basically saying that certain probiotics are as effective as mesalamine in relapse rates.

With regard to maintenance of UC remission, probiotics have been tested in a larger number of patients (Table 3). One trial by Kruis and colleagues tested E. coli Nissle 1917 and found no difference in relapse rates in patients on a probiotic versus mesalamine [Kruis et al. 2004]. A trial by Zocco and colleagues also found no difference in relapse rates at 6 or 12 months when comparing Lactobacillus GG with mesalamine with a combination of the two [Zocco et al. 2006]. Those patients who took the probiotic did appear to have a longer time to relapse. All of these studies support the idea that probiotics may be as effective as mesalamine in maintaining remission in the short-term trials.

Do some searches on Google using"nih" and "probiotics ulcerative colitis" and see which ones you want to try--one by one--not all at one time.

I've used this one www.amazon.com/New-NatureS-Primadophilus-Reuteri-Pearls/dp/B00185OHAA successfully. Also taken Lactobacillus, not sure which strain.
Both were helpful and when I have an antibiotic RX I take larger amount a couple hours apart from antibiotic.

If you have no problem with dairy buy the kind that has "live cultures" of Lactobacillus but try and keep sugar intake low. Sugar is inflammatory and fake sugar is also bad for some (including me). Read the label ingredients and avoid carageenan.

Good luck.
One last idea:find some empty time release capsules and put some VSL#3 in them to take orally. Might help to get the probiotics to a lower area and be a back-up to your probiotic enema.

imagardener2 said...

One last idea:find some empty time release capsules and put some VSL#3 in them to take orally. Might help to get the probiotics to a lower area and be a back-up to your probiotic enema.

There are no 'empty' time release capsules. Almost all capsules (except the veggie version, which dissolves VERY slowly and would not recommend) are made of gelatin. Gelatin can be processed with additives to make it release in acidic or alkaline environment but a significant majority will start swelling up as soon as it comes in contact with any kind of water. Timed release capsules have everything inside than the shell. If you notice carefully, the time release capsules contain beads and not the power. Those beads are coated with various materials to make it release at certain pH conditions or just slow release overall. So the time release property lies with whats inside the capsule than the shell itself.

nourse said...

I am no enema expert...but I've only done enemas with constipation, not diarrhea. I assume it would not stick to colon wall, would just flush out with the rest.

Have you considered taking something like Bentyl to slow down intestines, about half an hour before use of eneme. It works beautifully with me. During flares, Bentyl is my lifesaver. 3 tablets a day and I can go around living life normally.