129 Person – Ulcerative Colitis and Probiotics Survey Results

Did Someone Say Probiotics?

Where do I even begin… I guess I could start by talking about probiotics and gut bacteria and pre-biotics etc… But that’s not what I’m gonna do here.  Instead, what would be best is for you to read through the survey results, and get a feel for what ONE HUNDRED AND TWENTY-NINE different UC’ers from around the world have to say on the topic.  As the website is growing in use, this survey had participation from individuals living in 14 different countries.  Places ranging from the Phillippines, Pakistan, Sweden, Australia, Puerto Rico(that’s a country right…or at least a super cool isla bonita) and of course folks from Bulgaria, South Africa, United Arab Emirates, OH CANADA, KIWI people, and of course the UK and the good old/new USA.  And did I mention that Korea and Ireland were representing in this survey as well, because they did!!!   THANKS EVERYONE for your participation.

LOTS AND LOTS of TALK about PROBIOTICS.

It seems to never end.  And why is that??? Well, lots of UC’ers are using them to help control or eliminate symptoms.  I had a feeling there were going to be some strong opinions about probiotics, and sure enough there are.  Question #8 way down below has tons of advice from people etc… that you might find interesting.

HOW MUCH MONEY $$$$$?

The average cost from all the responses is just over $40 per month…not cheap…but not as crazy as some other treatments right…

Which Probiotics Brands Are the Most Popular?

The most popular probiotics mentioned within the survey results are all listed with their Amazon prices are listed within the link below.  And, any purchases made through this link help to benefit the iHaveUC website, (so please continue to use it, your help is much appreciated)

—–Most Popular Probiotics on Amazon – CLICK HERE—–

 

Question #1:

Please confirm that you are diagnosed with UC and that you have currently or previously taken Probiotics with the goal of treating or helping to treat your UC.

Answers:

  • 100%   I Agree                               129/129 people
  • 0%       Nope, I don’t agree          0/129

 

Question #2:

Did you take probiotics before you were diagnosed with UC?

Answers:

  • 87%    Yes      112/129 people
  • 13%     No        17/129 people

 

Question #3:

Did your doctor recommend for you to take probiotics?

Answers:

  • (39%)  Yes   50/129
  • (61%)  No     79/129

 

Question #4:

What specific Probiotics(which brands) Did you/ do you use, and in what dose?

—–Most Popular Probiotics on Amazon – CLICK HERE—–

Answers:

  • Align. Once daily.
  • SCD Legal 6 billion +
  • vsl #3-prescription only-2 capsules/1x/day
  • I ate greek yogurt at least once or twice daily….. 9 out of 10 times it was either Fage Fat free or Chobani Fat free………..I did sample many other brands.
  • natren healthy trinity
  • GI ProHealth 10+
  • vsl#3, inner health plus, serovera
  • Acidophilis, in yogurt.
  • Holland & Barrett – probiotic acidophilus with pectin
  • jarro dophilus 1 capsule 2xday
  • Ethical Nutrients Inner health, 1 capsule a day
  • I take Culterelle over the counter.
  • vsl#3. Started on 2 sachets per day during remission. Went to 4 per day at start of flare, then tried increasing to 6 per day.Have also tried Yakult drinks. No noticeable difference.Inner Health Plus also recommended by Doctor. Didn’t take these for long.
  • VSL#3- I take 4 packets a day or 1 pack of VSL#3 DS
  • Innate Flora 50-14 Clinical Strength
    Probiotic Balance
    Innate 7 day Intensive Flora 200-14
  • Bio Care – Probiotic Straws – L.acidophilus – 2-4 straws per day
  • Acidpophilis 2 a day.
  • Mesalazine 400 mg 9 per day
  • Culturelle, 2xday
  • bio kuln 2 x 2/day
  • I am currently taking the SCD Compliant Scdophililus 10+. I take 4 every morning, right when I wake up. Sometimes I also drink a Probiotic beverage, like Kombucha. I have also started making my homemade goat’s milk yogurt. I use the yogurt and the whey from it, after dripping the yogurt.
  • I started out using Align, but switched to Phillips Colon Health because it costs less. I take one a day…if a flare is coming on I up it to two capsules.
  • PB8 Vegetarian – 3 capsules a day
  • Culturelle
  • VSL #3 4-6 packets daily
  • Metagenics – Ultra Flora Plus *DF Capsules – morning + night during flare ups and morning once during remission
  • Multi-Flora refrigerated probiotics. 1 daily.
  • iv only drank different types of probiotic drinks
  • VSL3
    now taking a vitamin pack from Melaluca
  • different brands containing billions of strains….
  • florastor 200 mg
  • Dr. Ohhira’s probiotics from Essential Formulas Inc.
    1 capsule in the morning and 1 capsule in the afternoon.
  • Natren Healthy Trinity 2 capsules twice daily
    Pearls Elite 2 capsules twice daily
  • Dr. Ohira’s Probiotics 3 daily
    VSL 3 taking 2 daily
  • dr mercolascomplete probiotics,
  • Also
    KEFIR
    KIMCHI
    HOMEMADE YOGURT
    FERMENTED PICKLES
  • florastor 250mg 1 tablet 3x per day
  • Jarro Formulas
    Jarro- Dophilus EPS 5 Billion Organisms per capsule
  • I use Ultimate Harvest Adult Formula with 15 Billion active cultures made by Renew Life-One Capsule a day.
  • Jarrowdophilous 5 billion colonies. Was taking 2 capsules a day, sometimes 3 /day, but my integrative doctor told me to take 2 capsules at a time twice a day. After I finish this brand, I’ve been told to take a probiotic that has 25 billion colonies.
  • Activia
  • Currently using Bio-Kult
  • VSL#3
    Align
    FlorastorSorry I don’t remember the dose, other than according to the artcle on VSL3, and just according to label directions for the others
  • Actimel probiotic drinks
  • Align (4 mg, 2 capsules a day) , Florastor (2 capsules a day), Equate generic (10 mg, one capsule a day)
  • I’ve used Phillips colon health and two other brands ( sorry I can’t remember their names )
    I am currently taking Benebiotics. The dose is two capsules a day containing 24 billion CFU’s
  • Align once daily
  • My son has colitis and I started him on the following :
    SUPER 8 PLUS PROBIOTIC Ages (19-54)- 1 tablet with blueberries – evening snack
    Garden of Life primal defense Ultra probiotics RAW brand – just staring with 1 tablet per day is recommended dose on box.
  • Flora Udo’s Choice Super Adult Probiotic
    I/day
    10 billion viable cells
  • Align 1 per day
  • Glutapak 1 sack daily, intextynex 1 a day.
  • VSL#3DS
  • morrisons own pro/prebiotic tablets, one per day
  • Align
  • Primal Defense
  • Doctor prescribed culturelle which is over the counter. On my own I’ve used various brands from the health food store line Jarrow brand. The brand isn’t so important to me as much as the number of bacteria in it. I get a multidophilus because it says that our gut can only stabilize it for so long, so you need an additional like the bifidus to sustain for the small and large intestine (acidophilus, gulgaris, bifidus). When my stomach isn’t feeling well, I’ll pop in up to 4. Even if it reccommends 1-3.
  • True nature digestive probiotic
  • Bio-Kult 2 caps after lunch, 1 cap after dinner. I’m still working up to a theriputic dose so it will probably increase as die-off symptoms persist (bloating, gas, constipation)
  • Culturelle
  • generic and pearls, but don’t remember the dosages of either one.
  • All I take is non-fat yogurt…one 8 oz. container each day.
  • GI Pro Scdophilus 10+ (currently)I started with Lyosan yogurt and acidipholus from Lucy’s Kitchen years ago when I first started the SCD. Then I did the six strain from Custom Probiotics which is VERY EXPENSIVE and the Adult formula CP-1. That worked for a while and I was off all meds, but then I started having some weird issues and read that not all strains are beneficial and some can actually colonize in your gut and do more harm than good. So, I went without for a while and then with my last flare tried the GI Pro Scdophilus 10+ and their SCD vitamins and minerals. Since starting both of those back in late fall 2011 I’ve been feeling a lot better (but I’m also take sulfazine, 1 pill twice a day). When I told my GI doc I was taking them, he said taking probiotics wouldn’t hurt, and his partner said “good.”
  • Align
  • TuZen – one pkg / day
  • Phillips Colon Health
  • Can’t remember the name.
  • Cal’dophilus,tvo times a day,one capsules.
  • Bio-K, Natural Factors
  • No specific brand I use.I take 2_3 pills daily.
  • VSL #3
  • VSL 3 a packet a day, Totalpro, 1 per day, and culturelle, 1 per day. (Not all at the same time!)
  • GastroHealth4 Super strength probiotic previously when first diagnosed.Now i’m only taking Floractiv which contains only Saccharomyces Bouldarii 250mg tablet per day, everyday.When i was in a pancolitis flare they made NO difference though.
  • Natren – healthy trinity x2 capsules per day
    UDo’s Super 8 x 2 capsules per day
    EM probiotics – 2 x dessert spoon per day
  • all of them
  • new chapter probiotics – all flora 2 caps (8 billion) x 3
  • Plain yogurt fortified with Probiotics.Try to take 3 or 4 spoonfuls a day.
  • Lamberts Acidophilis Extra 10
  • Sona acidophilus 4m probiotic, 2 capsules daily as part of treatment
  • GI Prohealth SCDophilus 3B CFU 4x daily
  • buy different brands …..
  • Prednisone 60/mg
    Balsalazide 6750/mg
  • blackmores acidophilus bifdus started at 1 capsule before breakfast and tea now I take 3 before breakfast and tea.
    .
    Used to take metrogenics probex one capbefores twice dailydoes home made yoghurt count?
  • VSL#3 and Homemade yoghurt and shop bought drinks
  • Pharmax, Metagentics. I was put on different brands and different doses by an Naturopathic Dr.
  • Yakult, once a day.
  • VSL#3 10 capsules per day.
  • Natural supplement. 1 tablet a day
  • Lactobacillus reuteri (L. reuteri) Protectis
    Acidophilus Lactobacillus
  • Probiotic ibs.
  • Walgreens Daily Probiotic.
    5 billion CFUs
  • Align, one a day.
  • I take the ones from gnc 75 million dose
  • Jarrow ultra 1 cap/day
  • VSL#3 1 sachet per day (450 billion bacteria per sachet)
  • Jarro-dophilus by Jarrow mostly; 1 day before food; have tried PB8 by Nutrition Now before and Essential Formulas by Dr. Ohhira’s Probiotics, Original Formula — didn’t like either one as much as Jarrow.
  • melaleuca with the Vitality 6 pack. One pill in the evening.
  • VSL#3
    ALIGN
  • I was taking orthobiotic one a day. And now I’m taking PB8 one a day “14 billion good bacteria”
  • Blue Rock Holistics Super Shield – one capsule dailyVSL #3 – one capsule daily
  • Schiff – 3 tablets a day and flora just recently 2 tablets a day.
  • Asaco 3 3time a day
  • I’ve taken so many over the years, but the ones I like best are VSL#3 and Florastor
  • I have not taken probiotics.
  • Phillips colon health, and now I take trunature.
  • Align – one capsule a day
    Dr. Ohhira’s – 2 softgels a day
    Natren – combination of step 1 and 2 (one dose in the morning, one dose at night)
  • VSL3 2 packets a day
  • Acidophilus -10
  • Accidopholus- 1 pill twice daily
  • Tried a few diffrent brand most had 200 billion bacteria
  • Pearles IC and Align
  • VSL #3, one-three packets a day
  • “Natural Factors” Acidophilus and Bifidus (10 billion active cells) 1 capsule, twice/day and I eat Olympic brand organic probiotic yogurt with Lactobacillus and Acidophilus each morning. (about 6 or 7 oz)
  • VSL #3 – 3 x per day – I only took once per day, seemed to work awesome, eventually not covered by my insurance so I stopped.Juice Festiv – 2 pills day (one juice/one veggie) with a meal. I poop like a truck driver approximately 1 hour after (formed but soft). I take every two days or so. They are very good but the frequency limits me to every two days.
  • I’ve always taken Inner Health Plus. Each capsule contains 25 Billion Good Bacteria:
    Each capsule contains 25 Billion Good Bacteria:Lactobacillus Acidophilus (NCFM) organisms
    12.5 Billion
    Bifidobacterium Lactis organisms
    12.5 Billion
    Colostrum Powder – Bovine
    67 mgAnd sometimes IBS Support, which probably should be taking more often as it has anti-inflammatory properties.
    Lactobacillus plantarum 299v organisms
    The brand for both of these items are: Ethical Nutrients.
  • VSL 3 4 capsules a day, Florastor 2 capsules a dau
  • Florastor 250 mg(I think)
  • -Ethical nutrients IBS support (Lactobacillus plantarum 299v, 20 billion organisms per tablet) – 2 tablets daily (1/2 hr after breakfast and dinner)-GI Pro Health (Saccharomyces Boulgardii 3 billion organisms per tablet) 1 tablet after breakfast-Metagenics Ultra Flora LGG 10 billion organisms per tablet. 2 tablets 1/2 hr after lunch
  • I take VSL #3 daily in the packet form. I’ve been taking it daily for over 7 months now and I love it! It’s formulated for people with IBS, Colitis and a pouch.
  • VSL #3
  • I take one pill in the AM and one pill before I go to bed of Lacidofil. I don’t know the dose or much more about it because the box is in a language I don’t speak.
  • vsl #3
  • Nature’s Made Triple Probiotic, 1 pill a day at dinner.
  • culturelle-two pills daily (before I started teh VSL-DS #3)
    VSL-DS #3- one packet daily
  • I took Mutaflor once for two weeks in 2009, then I took some generic probiotic 1x a day for short periods, and then shortly before my diagnosis I took Culturelle 2x daily, lately I’ve been taking Pro-Biotics – acidophilus 1x daily for the past three months.
  • Vidazorb – Super C…I took 2-3 pills a day as directed on the bottle
  • vls-3
    acidopholus
    S.Bourardii
  • Trunature
  • VSL#3, 2 caplets per day. Purchased cheaper OTC at Costco than online (about $15 less).
  • Florjen 3
  • VSL#3

 

Question #5:

Overall, Did/do Probiotics help with treating your UC symptoms?

Answers:

  • 34% Not Sure if they were positive or negative  (44 people)
  • 33% YES – They helped more than I expected   (43 people)
  • 29% YES – They helped A LITTLE                       (37 people)
  • 2%   NO  -  They DID NOT help me                     (  3 people)
  • 2%   NO  – They made me WORSE                       (  2 people)

 

Question 6:

Do you plan on using probiotics forever?

Answers:

  • 56%  Yes            (72 people)
  • 27%  Not Sure  (35 people)
  • 17%  No             (22 people)

 

Question #7:

How much money did/do you spend per month on Probiotics?

Answers:

For this question, there was a range of numbers.

HIGHEST:  $250/month  (DAAAAAMMMMNNNNN that’s ALOT!!!)

LOWEST:    $6/month       (DAAAAAMN THAT’s a little)

AVERAGE:  $43.80/ month   (the average that all 129 people spend on probiotics each month)

 

Question #8:

What advice would you offer to someone with UC who is considering using Probiotics to treat his/her disease?

(113 answered, 16 skipped the question)

  • N\A
  • Make sure you’re consistent w/ them and give them a good 2-3 weeks to see if they help.
  • What works for one may not work for another…………try it & see what happens ! I thought it was my saviour……….maybe not so much !!!!
  • start slow
  • Try them and see if it does help in your own situation. With uc everyone still reacts so differently with what we try and treat with uc, and not all the same things work for everyone. It is worth giving probiotics a try though.
  • Definitely give it a try. Just make sure you monitor/control your diet so you know whether or not the probiotics are working. Give them at least a month to establish.
  • It is beneficial for your body besides being a possible treatment for your disease.
  • give it a shot, cant hurt!
  • I would also consider repopulating your gut with different bacteria. I did a 3 month experiment of taking prescription bacteria and it really helped. I felt terrible while I was taking the bacteria, but since taking it I have felt a lot better.
  • It can’t hurt you, it may help you – go ahead and try them.
  • See an alternative medicine practitioner
  • Start off with a slow introduction. If they’re too strong, give them a rest but go back to them later when your gut feels stronger or you feel like you’re able to absorb food again. I think they’re important, especially if you’re doing the SCD.
  • I also take yogurt which has a lot of probitics.
  • I’m not sure how well they work for everyone, but I saw some improvement. And honestly, when you feel that crappy (ha, no pun intended!) for so long, if something helps you stick with it!
  • do it.. but there is a difference in the brands I have tried 3 diff brands and found that that the bio kiln worked better
  • I’d say go for it! It makes sense that our guts have been compromised by “bad” bacteria and that we need healthy and happy bacteria in order for our appropriate gut flora to grow and flourish. I am a fan of the probiotics. I definitely feel the difference and I feel better.
  • I would say give it a try! It works for me and has for years. But of course everyone is different.
  • get a probiotic with 14 billion good bacteria and take alot of it!
  • if you can’t eat normal yogurt go with a probiotic pill. It has the same stuff you need.
  • Give it a try, it can not hurt. And if it helps you don’t have to take these other medications.
  • drink it first thing in the mornings half an hour to 1 hour before you eat anything and drink it last thing at night before you sleep
  • These probiotics Ive been using wiped out my flare up and kept me having only 1-2 movements a day, very much a life-saver these are.
  • USE THEM….doc meds did nothing to stop horrendous flare…doc said double meds ..did no good…doc said double again…no help …he said take 2 enemas and double again…nothing helped….this went on for 2 years. I started to take probiotics and in one week I wasnt running to the bathroom 20 times, it was 15..another week it was 10 and in a month it was ….ONCE.
    Doctors dont cure illnesses, they just medicate symptoms. Give them symptom, theyll give you a pill.
    I take the probiotics every day…and added digestive enzymes too. It helps.
  • see if it works for you
  • They will not harm you. They are natural friends. So try them to see if they work for you.
  • Begin immediately.
  • It definitely helps ease the gas, and slows down the frequency of bowel movements.
  • Suppliment with homemade(or no additives) fermented foods like the ones people used for 100′s of years before processed garbage.
    would you like fries with that?
  • I think they should try it and decide if it is worth the cost for them.
  • I would say to do your research because maybe some Pro-Biotics might irritate the intestines and cause a possible flare. My Dr. said it would not make a difference and that I’m wasting my money. But I did some researching on this specific brand and for some people with UC it seems to have helped or made the UC symptoms less . Plus it is not to expensive. But always tell your Dr. first before taking them
  • Get quality, the less expensive ones at stores like Walmart, don’t have enough live cultures to do any good. One sign of a better quality one is that is needs to be kept refrigerated. This should mean that there are live cultures inside and will help your system more. Generally ones at health food stores are better. Even if you get the highest quality, don’t expect them to cure you. They will help most people, but just getting a more healthy balance of bacteria is a good thing. Stay away from using antibiotics as much as possible. They will kill the good along with the bad bacteria, and then you are back at square one. I think that you need to take Probiotics for at least a year to get your system in balance, and then you will see the most benefit. After a year, you should plan on taking them for the rest of your life. You may not think it’s doing much, but can only help your body. There are no side effects that I am aware of, so just take it.
  • TAKE THEM! on an empty stomach 30 minutes before eating.
  • Try it
  • To try it – try anything/everything. I have tried so many things, I have been on probiotics for 3-4 days and I instantly noticed a change.
  • Try it. Try different brands.
  • Its worth a try,you won’t know if it’s beneficial or not untill you try.If you are lactose intolerant try the dry capsule form.
  • Look for o probiotic that has a high culture count , at least 10 different strains , an enteric coating, prebiotics which provide the probiotics food they need to multiply and a convenient dose.
  • Start slow.
  • It will help with your absortion of nutrients.
  • Use them when taking any antibiotics
  • definately use them
  • In my experience, they made me go to the bathroom more frequently.
  • I wouldn’t use it to treat but as am added benefit. Your stomach is soo important and when your on tons of meds including antibiotics it just robs the natural flora in your stomach and makes you more suseptible to getting sick overall. So I use it to keep me well overall
  • I’ve only been on them fur a week. Hard to say at this point
  • Those of us with UC have an imbalance of gut flora (bad overtaking the beneficial) so we should all be supplementing with a probiotic. Start slowly as the probiotic contains strong strands of beneficial bacteria that actually seek and destroy the bad bacteria (look for a probiotic that contains lactobacilli, bifidobacteria and soil bacterias in combination b/c they are much more affective than just lactobacilli alone). Many will experience what’s known as “die-off” symptoms. These symptoms are different for everyone depending on the state of your gut. It’s simply the bad bacteria (and the toxins their carrying) dying which is a good thing. Just keep taking them and slowly increase your dose when your die-off symptoms subside. Probiotics need to be a part of our lives know.
  • It can’t hurt !
  • One needs to keep up with what they take and pay particularly close attention to your body and how it does or does not change with the addition of the probiotics.
  • For me, they seem to help relieve the nausea I get from the other meds I’m takijng.
  • I’d encourage them to try a pure acidophilus of at least 3 billion units and give it at least a month unless they have an immediate bad reaction to it.I have friends who don’t have uc but have developed digestive issues and their doctors all recommended they take a probiotic.
  • What can be the harm. They are just introducing more normal flora to your intestinal tract. If they don’t work they don’t work. You really should probably commit to a 3-4 month period though to see results. I had flare ups during the time I was using them and had to do predinose. Which in turn was the real reason my flare up was managed. The cost of the probiotics became an issue – so no sure if they would benefit me in the long run or not?
  • Try it because everyone is different.
  • Try it if your doctor recommends it
  • Take it,it can’t hurt,but can halp.
  • Be mindful about
    - The active strains in the probiotic. Studies have shown benefits of certain strains of bacteria over others, so make sure to read the “ingredients”. I’ve read the “Bifidobacterium” genus is good.
    - The mechanism to the pill or probiotic that enables it to be active in the colon, as opposed to them becoming inactive in the stomachWhen i began with the probiotic – I started with pills that had a higher dose, but once I felt my UC was more controlled ( and due to the costs) I switched to more of a sustained course of probiotics at a normal “dose” of bacteria.Do your own research into the brands, strains and benefits. I’ve had sales people try to promote the most expensive products, and I felt more confident in my choice and its ability to help me heal after having learned a bit more about probiotics.Wish you the best with your treatment/ control of UC!
  • The best Probiotic is homemade yogurt .I also take it in form of pills.I buy it from Costco Pharmacy and take 2-3 daily with meal.
  • Yes, it’s worth a try.
  • See someone who will check your gut flora. I am being treated for Candida. you need to find out what flora and fauna impacts your gut.
  • Take them!!! Don’t think twice.
  • choose refrigerated brands
  • not sure
  • Always start slow and observer, then gradually increase. The recommended dose on the bottle usually isn’t enough when you have severe symptoms.
  • Be careful that the Probiotics is in live cultures, ie. not in a stale solid tablet form but in a yogurt where the cultures are still alive and kicking.Be careful because if you’re gut is averse to dairy products, this can be a double edged sword , in other words the probiotics might do you good but the yogurt or milk it’s in may give you issues.
  • Make sure there are several strains of bacteria present in the probiotics – the more the better – I have heard that 8 strains is a good amount – dont get to het up about teh actual number of bacteria – my ones are 7.5 billion but i guess the more the better as i imagine millions die before doing any good.
    make sure that you keep them in the fridge and be wary of probiotics that are sold to you not from the fridge – room temperature kills the bacteria
  • try it! it can’t really hurt! I found an inprovement with probiotics and would recommend them
  • Have a bottle of acidophilus around incase you travel or run out of the SCD yogurt.
  • the dors meds did NOTHING to help me…I started taking probiotics and noticed a difference right away
    and I take one every single day….with my breakfast…(which is always 2 bananas. (due ot low potassium levels).
  • Diet diet diet, while meds will help with the symptoms, diet it key. Need to learn to put food in your body that your body will be able to use with out pooping it out right away.
  • try them they may work for you but try and take a low dose first to see if no problems then slowly increase the dose.
  • I think giving anything natural (foods etc) a go, wether on prescript meds or not, as in the long run it cant harm your body and ultimately if you can help your system and reduce/eradicate meds all the better. The big focus must be to support your immune system so that any change to diet gets off to a good start.
  • I would consider that they try to visit a Naturopathic Dr. or someone who has a lot of knowledge about probiotics before taking them. Cheap probiotics that you can buy from any drug store may not do the job. I believe that Probiotics are starting to be taken seriously my the medical industry. Different strains of probiotics are used for different issues. I truly believe it is worth it to invest in the advice of someone who really understands probiotics. If you can not afford them, at least call a company that sells high quality brand probiotics and ask them to suggest a probiotic for someone with IBD. I would also suggest that someone with UC start to learn about fermented foods such as kefir and fermented vegetables to get probiotics through food. It is inexpensive to make your own fermented foods such as kefir, kimchi, kombucha, and yogurt at home. If you can’t afford probiotics, at least learn to make fermented foods. The book Wild Fermentations is a good place to start, you can also find them on facebook.
  • Probiotics alone are not enough. You also need to identify which foods are the antigens to which your immune system is creating antibodies. The probiotics definitely help to decrease the diarrhea. We also use ALOE ELITE which helps to keep inflammation down and soothe the mucosal membrane of the colon.
  • I’m really not sure whether this works or not.
  • I’m not sure if they had any effect – positive or negative!
  • See dr first.
  • Try them for a month or two. If no improvement then discontinue.
  • Take them, they could help.
  • They really help with uc they make you feel 10 times better
  • DO IT
  • Give it a try in a high dosage. Different things work for different people. You don’t know if it will help you unless you try it.
  • They are great; I take them in combination with enzymes. Have been taking probiotics for 7-8 years now.
  • Couldn’t hurt!
  • It’s worth a try.
  • Find a probiotic which includes these three specific bacterias: Saccharomyces Boulardii, Bifidobacterium, and Lactobacillus Rhamnosus. I read online that people with UC respond well to those.I would love to know if there are any probiotics that include those bacterias that are not as expensive as VSL3 or orthobiotic.And also, people should be patient in the beginning when starting a new probiotic because they may experience bad symptoms/ side effects the first week as their body is adjusting to the new bacteria.
  • Give it a try. You have nothing to loose and everything to gain.
  • Probiotics help balance the bad bacteria in your gut. It helps with gas and craps but don’t expect it to induce remission or cure UC.
  • Stay away from fast food
  • I use my probiotics in combination with 550mg Xifaxin. The combination is the only thing that has worked for me, and I’ve tried literally everything else.
  • I am considering it but, I need more information.
  • I swear by it. I really feel as though they help with my symptoms and would recommend taking them.
  • Do your research. It takes trial and error but you may end up with a good product to help with UC symptoms. I personally use Dr. Ohhiras which seemed to have the best effect on me. Align and Natren did not do much. It may be worth to spend a little more on a quality probiotic.
  • Consider alternatives other than meds
  • No one really knows how to cure colitis, so try everything and see what works for you…… I’m still searching
  • I think the more strands of bacteria the better
  • It couldn’t hurt…and could possibly help a bit.
  • GO FOR IT! :)
  • I have had UC for 15 years and have tried many types of treatments. I would highly recommend that you try probiotics if you haven’t already. There are zero side effects and I am convinced that they have played a major role in establishing my extended remission.
  • I’ll try anything once, twice if I like it!
  • Try to remember to stick to a routine of taking them, particularly when you’re on antibiotics or if you’re feeling a flare in the way.
  • take on a failry empty stomach. use quality if possible and give it time..
  • Keep trying different things til you find the one that works for you. They are not all created equal.
  • I am a different person since taking the above probiotics – prior to not taking them, I kept getting reoccurring c-diff infections and hospital stays. My gastroenterologist put me on the Ethical nutrient probiotic and the GI pro health probiotic because these 2 probiotics have been shown to bind the C diff toxins and decrease the risk of reoccurance. And the Metagenics probiotics helps with inflammation. At the moment am extremely lactose intolerant so unable to eat yoghurt (even 24 hr yoghurt or dry curd cheese). Also am gluten and froluctose intolerant thanks to the UC so the probiotics I am taking are all lactose, gluten and fructose free
  • Do your homework on probiotic! Try to get the more natural higher quality. If you take the pill probiotics make sure you get the yeast, dairy, wheat, sugar, etc free pills. Stay on the probiotics for at least a month, the improvement won’t be overnight, but after 30 days you should have enough time to see if the probiotic is having a positive effect on you. After 2 weeks I saw a positive change with the VSL, after 31 days I was hooked on it b/c of the results.
  • I think it may help for some, and in all honesty, I didnt take it as regularly as I probably should have. I’m just not prepared to spend that much on something that I dont really think will help. That might just be my own pessimism though.
  • The GI doctor I went to see in the States told me they would not do anything for me. Then I went to a holistic doctor who really knew her stuff, she recommended probiotics. The doctor I go to now in Korea also recommended probiotics. The more I read about gut bacteria, and learn from people like the holistic doctor, this good bacteria is needed, especially for people like us! My main thought is – It can’t hurt, so why not try it! Every since I have been on probiotics, my quality of life has been increasing!
  • overall, i feel much healthier all around. try it!
  • Try various probiotics. I’ve notice changes from taking it after one day to a two weeks. It may stop working, in that case, try a different brand/type of probiotic. If it hurts your stomach switch probiotics. You will know if it is causing pain.
  • Consider the VSL-DS #3 its the only thing that has kept me healthy and its made exclusively for UC. Its fabulous!
  • It’s important to ALWAYS follow up with probiotics after taking antibiotics. Use a supplement with different kinds of bacteria, choose a supplement with a high number of live cultures. Finally, it wouldn’t hurt to keep them refrigerated.
  • I would say DEFINETLY use them! They helped me so much with feeling less bloated. I also felt my cramping cool down a bit more each and every day.
  • Try them and see what happens
  • I would encourage them to take them twice a day. Be patient because they don’t help right away.
  • Try them because they can definitely help, and we could use all the help we can get!!!
  • Give it a try!

 

That Concludes the COLITIS PROBIOTIC SURVEY!!!!!

Thank you very much to all 129 participants, and especially to everyone who is part of the newsletter who responded.  As you all know, these surveys are worthless without participation, and on behalf of all the other UC’ers and future visitors to the iHaveUC site, thank you very much.  The survey’s do take quite a bit of time to prepare and then to aggregate all of the data, but because so many people have requested more surveys in the future, I’ll try to keep them coming.

(Once again, if you are interested in ordering any of the probiotics, there is a list of them on Amazon.com I’ve prepared, and when you order though the iHaveUC.com Amazon Store, part of the sales benefits this website.  Here is the link:  iHaveUC Probiotics on Amazon)

Thank you for all your support and participation,

-Adam Scheuer

20 Responses to “129 Person – Ulcerative Colitis and Probiotics Survey Results”

  1. Laura from Toronto
    LauraFebruary 19, 2012 at 1:06 pm #

    Thanks Adam for doing this survey and thanks to everyone who participated. I have been wanting to give probiotics a try for awhile now and the information presented here really helped.

    • AdamFebruary 19, 2012 at 7:29 pm #

      Hey Laura,

      That’s great the info’s helpful for you! That’s the whole idea! Good luck to you if you do decide to check out probiotics further. Let us know how things go if you do!

      Take care,
      Adam

  2. RebekaFebruary 20, 2012 at 10:44 am #

    Thank you Adam!
    Great work, that was really quick!
    I’m so glad to see how important probiotics are to all of us, despite the fact that most of us did not receive a recommendation for them by our doctors! They should consider recommending them, because obviously people are willing to spend money on them.

  3. tracyFebruary 20, 2012 at 6:58 pm #

    Thanks Adam for this survey! It has given me some hope in helping my UC. The results were really positive and helpful.

    • AdamFebruary 20, 2012 at 8:33 pm #

      Hey there Tracy,

      I’m so happy you liked it. Big thanks to all 129 of the participants! without their participation, it wouldn’t be possible to get a bird’s eye view into what everyone is doing interms of the probiotics. Good luck to you Tracy, keep your head up, and i wish you the very best!

  4. ArminMarch 5, 2012 at 10:15 pm #

    Since I have been diagnosed with Ulcerative Colitis (2 Months), I have been taking probiotic yogurts such as BIO-k and Activia. Is this sufficient or should I try the VSL#3. I have been reading a lot about it and seriously considering it.

  5. Senga TaylorMarch 6, 2012 at 5:51 pm #

    http://www.worldgastroenterology.org/assets/export/userfiles/Probiotics_FINAL_20110116.pdf

    Hi Armin,

    I have just been reading about pro biotics from the site listed above. I actually found this through the IHAVEUC site in the first place. It’s been interesting reading. I began reading about using microscopic worms to help cure or alleviate UC. Thanks to Adam’s site, I am reading a lot of interesting new literature that it’s unlikely I would find easily on my own. After reading some information this a.m. I am going to try and purchase VSL#3 pro biotics for my daughter 12 yrs. I am making the SCD yoghurt, but she prefers it mixed up in my food processor with frozen bananas and raspberries….she calls it Monkey Icecream. She loves it but I am bit worried that after all the processing and frozen bananas there are no live pro biotics left LOL!!! Anyway, I certainly think that you ought to do some research and inform yourself and the site I have gave you is good. Best of luck!! Senga

  6. TerriMarch 21, 2012 at 5:52 am #

    Adam, Would you mind telling what kind of probiotics you take? Thanks!

    • AdamMarch 21, 2012 at 7:31 am #

      Hey Terri,

      I have taken most recently VSL#3 probiotics, but just a few once in a while. For example, I have not had any in over a month now, and before that I was only taking them sporadically. I need to really test them out for a long time consistently to make a personal judgment call on them.

  7. mrlApril 29, 2012 at 5:57 pm #

    What an excellent idea and response from all the participants.
    I was given VSL #3 ds by my dr few months ago and I had ignored to follow his recommendation.
    When I swithed my dr he did a colonoscopy and also found I have c diff. He immediately put me on vancomycin. After that he game me some new probiotic that he is promoting from a new company and magically it worked fine for me. It Is from a company called pancea scientific and the product is called – arise and this is not available in the stores or online. Only available thru the dr in each state/city.
    This really changed my opinion on the probiotic and I am going to try the VSL 3 ds also which is still hanging in my refrigerator.

  8. TracyMay 15, 2012 at 8:36 pm #

    Hey UC Peeps!

    A few months ago I tried a product supposedly made for GI conditions called Inflammacore and I ended up with a rash on the backs of my hands, forearms, chest, I also had some swelling/puffiness on the tip of my nose and my ears. I was told I had an allergic reaction. Well what I’m wondering is if anyone has ever gotten a rash from vsl#3? I went to my doctor last Thursday and in our conversation he was made aware that I’m not on probiotics. He told me that I have to be on them and gave me a 10 day supply. This probably sounds silly because I’ve only been on them for 5 days but I feel tons better. Not like a “healthy” person feels but damn good for a “UC’er. Wouldnt you know it I have a rash (they are little dots) on my hands, arms, a couple on Mr chest but they are not itching like the rash I had last time. I seriously hope that its not an allergic reaction but maybe the vsl#3 working. I’ve heard that toxins leave through the skin. Is this true? Has anyone had any sort of reactions from probiotics? I have a call in to my doctor to see what he has to say. I take 4 Lialda first thing in the morning then about 5 minutes later I take 2 vsl#3 capsules. Two hours after that I take 2 antibiotics. Phew! Maybe I’m taking the probiotics and lialda too close together? Also should I eat something withen a certain amount of time after taking them? I eat probably. 3 hours after taking. Any advice would be so appreciated. Thanks!!!

    • AdamMay 15, 2012 at 8:59 pm #

      Hey Tracy,

      I myself have not heard of anybody having that type of rash from VSL#3 like you’re talking about. As for toxins leaving through the skin, I’ve definitely heard that before, I think my old accupuncturist doc was talking about that as well. my guess is that different people might have differnet ideas on that though.. Good luck, and great to hear you’re feeling some relief!

      • TracyMay 16, 2012 at 5:08 am #

        Thanks Adam for the input! Am so very happy to read your comments. Today is an off day for me. Boo. But in general the lasr couple of days gave got me feeling more positive about being able to get out and do things again. You are right. That different. People have different views. Thanks again! Oh, do you know if its super important to take gluten out of the diet if you don’t have celibacy? I asked Mr GI about going to. See a nutritionist and he told. Me that’s not neccessary with UC, but with Chrons. I’ve tried. Some gluten free stuff and some is. Ok and well others…not. so much.

    • Coralie
      CoralieOctober 19, 2012 at 9:51 pm #

      Hi Tracy

      What I can tell you is that I have been on Infliximab (Remicade) infusions for a year now and each time I have experienced an itchy head almost as soon as the drip starts up. I couldn’t be absolutely sure it was the drip causing it as I had recently dyed my hair and thought I could be reacting to the dye. Silly me. A couple of days ago I had another infusion. It wasn’t long before I was scratching all over and I went bright red (like a flush) from my throat up my head and I had a bit of a temp and my blood pressure elevated slightly. The nurses stopped the drip and put hydrocortisone in the drip and gave me an antihistamine to take. Next time they are going to do that automatically. Seems I have to stay on the stuff even if I’m sensitive to it coz it’s my last stop before surgery. I must say I have been much better bowel wise for the first time after an infusion. I think the reaction was stopping me from getting the benefits. Also I went gluten free 2 days ago. I have found two great bread recipes. It seems that if you don’t use rice flour in the making of gluten free bread, it tastes fantastic and the secret is to use several different flours in the same loaf. I will try to add the link here to the one I made last night. Really nice. http://www.youtube.com/watch?v=mQpOjtw2PnY
      I have eaten several slices today (oops!). Next I’m doing cookies! :D

  9. TracyMay 16, 2012 at 5:13 am #

    Ok, I just have to say that I need to read my posts before hitting send.
    Lol. Oops! *celiac not celibacy*! Damn smartphones and the people that operate them!

  10. SolSeptember 4, 2012 at 7:49 pm #

    Thanks Adam! funny coincidence, but I’ve been thinking about probiotics for a while now and just bought some today and then saw your email. Good verification to start. Cheers

    • AdamSeptember 4, 2012 at 7:59 pm #

      You’re very welcomed Sol. Since so many UC’ers use probiotics, its about time there was some sort of survey out there talking about this stuff. Best of luck to you with the probiotics, and have a great week:)

      -Adam

  11. Iqbal NaiyerJuly 6, 2013 at 5:48 pm #

    On – May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC)

    Well, I am taking given below probiotics on a daily basis. I think somehow and in someway it did helping me out also SCD yougurt is a must not the commercial one since commercial yogurt culture has bifidus and ferment maximum for seven hours. I don’t think you will find a yogurt in the marketplace that has been fermented for 24 hours.

    VSL#3 DS-(20 Pack) – Prescription Only
    Non-dairy Saccharromyces Bolardii+Mos probiotic,
    Theralac (bio-Replenshing probiotic),

  12. Trisha NaveOctober 3, 2013 at 7:10 am #

    I recently ask my doctor about vsl#3 for my 16 year old daughter who was diagnosed with crohns 4 years ago she recommend I give it a try the problem is my insurance won’t cover it I was wondering if there is a trustworthy online website to order from or if I just have to try and come up with the money some how she order the VSL#3DS PACKETS any help would be appreciated I don’t no if this will help her but with everything I have read regarding this its worth a try

  13. Fred S
    Fred SOctober 13, 2013 at 4:04 am #

    A huge benefit not mentioned here is that probiotics help prevent colds and flu as well as lessen the duration when sick.

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