Probiotics Question

Introduction:

I was diagnosed with severe Ulcerative Colitis in June 2011. I started Remicade one month after being diagnosed, and it has literally saved my life!

Now for my Probiotics Question

My next colonoscopy will be in the sometime in the summer and I want my colon to look better than it did the last time. Basically the last time I had one you could not even tell I had a colon because all you saw were those awesome ulcers! Oh joy! And I’m sure you all know how much fun that is. :/

Everything I’ve read so far about Probiotics seems to be pretty positive. Are there any negatives associated with them? I was thinking about starting to take some probiotics, but I need some recommendations as to which works the best.  Also, would my doctors freak out if I start something new like this? Or should I just wait until my next appointment and speak to them about it first?

I’ve had to give up some of my vitamins because it was causing my sodium and potassium levels to go through the roof, so I am being pretty cautious about what I put in my body. I just don’t want to have to keep re-doing my blood work because my levels aren’t within normal range. Has anyone had any issues with your blood work being strange while on Probiotics? Or has anyone had issues like this in general?

Right now I’ve gotten off almost all of my medications. Yay!

I’m at 2 to 3 poops per day, however, that may change soon because I just had a Remicade infusion on Tuesday. The goal is to try to get me to 1 to 2 per day. I haven’t seen any mucus in a while, though I still see a little blood. But I think I’ve got hemorrhoids again, so that may be why. I try to be super careful about what I eat, though I’ve been slacking because of the holidays. But with the New Year comes the super strict diet again!

Colitis Medications For Me:

Remicade
Apriso
Nexium…….40 mg
Multi-Vitamin

written by Lara

************************

***The most popular probiotic in 2011 purchased by IHAVEUC.com users was:

VSL#3 Probiotic – click here to find it on Amazon.com

************************




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

8 Responses to Probiotics Question

  1. Adam
    Adam January 1, 2012 at 10:18 pm #

    Hey Lara,

    What’s up!
    thanks for posting again,
    i just ran a query for the entire website for the words “VSL#3” since its a probiotic that many people have used, myself included, and if you go to this link: https://www.ihaveuc.com/?s=vsl%233&submit.x=0&submit.y=0
    it will display all the stories that have that term mentioned. Maybe that might be useful for you. Another probiotic that some people have used from the site is called “Align” you can do a search for that up in the top right hand side of the site if you like.

    AWESOME QUESTIONS YOU GOT, and DARNATION, I think its time we ran a survey on probiotics on the site(I’ll try to hook that up soon since I know others have similar questions)

    I myself have just dabbled with VSL#3 since so many others swear by it. But i have not taken it religiously, skipping days etc… but i’m feeling fine both before and after, so I don’t think my experiences are too valuable for you.

    But anecdotally, I’m yet to hear of anyon having negative side effects from probiotics. If someone has had negative side effects, please speak up!!

    In terms of doctors acceptance etc… of probiotics… my GI’s have not ever mentioned it(that’s 6 GI’s total) and my guess is that is probably similar with most others. BUT there are other doctors who do see some benefits to them(from what I have learned from others.) So, overall, i think it just depends.

    What to me is even more valuable, was the feedback I received from the Gut Biologist I interviewed with over a year ago. He is a world leader in MicroBiology from Stanford University’s Microbiology and Immunology Labratories. There are some videos you can watch, and one of them I asked him about his thoughts on probiotics. I don’t remember exactly which one, but you can check out the links to those interviews here: https://www.ihaveuc.com/gut-bacteria-part-1/

    Regardign Blood work, I can’t help with any experiences with that since i haven’t had any bloodwork since getting on some probiotics. (again, maybe someone others will be able to write some comments with detials about that)

    Good luck to you Lara! I really hope to hear about how you proceed with this. And please keep us updated, ALWAYS great hearing from you.

    Happy new years to you and your family,
    adam

    • alex January 2, 2012 at 12:04 pm #

      Hi guys,
      i just felt the need to check in on the subject. I want to say that i have no absolute knowledge on the subject, but i have a little experience. I was having a very tough time in a flare when i started taking vsl#3. they suggested 4-8 packets a day if you are currently flaring. I found this to be very expensive first of all. second i think, because vsl seems to be pretty potent to begin with, it might be smarter to start off at a lower dose. the colonoscopy i received after taking the vsl was the worst diagnosis i have had yet, and i was hospitalized within a week. i dont think this was because of the vsl necessarily, but i do believe in the theory about gut bacteria, and i think a bombardment of even a good bacteria can trow your colon for a loop. i am now leaning twords a slower approach with proper diet, and may slowly incorporate probiotics, but maybe more through yogurt, kefir, and fermented foods than expensive supplements. also, if you are already feeling well, i would proceed very slowly with whatever changes you make and pay close attention to any changes.
      best of luck,
      alex

  2. Shelly January 2, 2012 at 3:43 pm #

    I’m a VSL#3 user and frankly find it a much better alternative to the poop replacement people are trying! ICK, by the way…Can’t even bring myself to read about it. Anyway, VSL#3 should be worked up to. As Adam said, there is some great info. on the gut bacteria research…you have to find the right amount that works for you. A flare is going to give you a nasty colonoscopy-that is UC, right? Of all that I have read, it is really hard to find too much negative on probiotics. You have to be careful with anything you put in your body. The VSL has been tested(and probably more pure, etc than some others-their website is pretty informative), but it is not a cure-it is an aid to help manage the bacteria. It is costly-better if you get the PRESCRIPTION STRENGTH from your doctor-usually 1-4 sachets…IT IS DS-DOUBLE STRENGTH-900 BILLION per packet so you have to figure out how much YOU NEED! I’m on about 2 sachets/packets fighting off a flare, but usually take 1 to 1 1/2. I have done this very systematically and started on Metagenics as recommended by my regular Dr.(he’s a D.O.) and worked up to the VSL#3 pills-my friend is a pharmacist and recommended I try them-and now I use the 2 sachets VSL#3DS in with my smoothie or applesauce. It has been tested and shown some positive results along with diet, etc. It probably is a great alternative/comparable to the SCD yogurt. (Still trying to get Adam to have them tested and compared!! :) All probiotics seem to cause some issues at first-gas mostly, but as you work up-that goes away and actually helps many of those issues. I’ve even found some immediate results. What I say all the time is that everyone is different and so is your UC and you have to figure out what works for YOU!!
    My background-43,female, UC diagnosed 28+years-had symptoms forever and am currently allergic and/or intolerant to pretty much all meds. so am med. free, other than VSL#3DS, lovaza Rx(omega 3’s-pure and more affordable through Rx) and power smoothies!! Hanging on, keeping my fingers crossed, and willing to try most (natural) things before giving up my innards!(already sacrificed my gallbladder 2 yrs ago!)
    Hope this helps. Good Health, Shelly

  3. uma January 2, 2012 at 6:54 pm #

    Garden of life Primal Defense has worked wonders on me. I take only 1 capsule a day early in the morning with a big glass full of water.I am symptom free for over a year now. I take my other medication salazopyrin too. But this i have been taking all along. Slippery elm, Boswellia, A multi vitamin and folic acid are the other supplements i take.Doing great. All blood work is normal too.

  4. George in Napa January 3, 2012 at 12:20 pm #

    My current GI doc and my last one, who retired last June, both told me it was o.k. to take probiotics. I started taking VSL#3 six months ago and most days I take one sachet (450 billion bacteria) per day. I either mix it in water or add the sachet to my smoothies. I never heard of anyone having a negative effect from probiotics except for sometimes occasional gas when you first start using it. I think the only down side to the VSL#3 is its cost. It ain’t cheap.

    • Shelly January 8, 2012 at 2:09 pm #

      Hey George,
      Just wanted to let you know you can get a prescription for the DOUBLE STRENGTH…900 billion bacteria in one sachet. A LOT cheaper that way! My Dr. writes it for 4 a day so I can vary it as needed. I think Adam posted the web which has the codes for your Dr. Let me know if you can’t find it. Shelly

  5. leslie February 24, 2012 at 7:10 am #

    I started taking Boswellia and a probiotic about 10 days and have seen some improvement in my symtoms. 5 trips a day to the bathroom down from about 15 or 20 trips. I tried Asecol and enemas for a month with no improvement. I have made some changes in my diet such as eliminating caffeine and all milk products. I will think about going on the SCD if my symptoms continue to improve without any drugs. My question, have other people seen significant improvement of their symptoms with Boswellia nad probiotics?

  6. Sumit June 28, 2012 at 8:20 am #

    Hello,

    I am from India, working in a software company.
    I am suffering from UC(Entire colon) since last couple of years. I am using VSL#3 in capsule form as in India we do not get the sachets.
    However, my doctor always alters the probiotics in every 3-4 months. That has actually helped a lot in maintaining the bacterial concentration.

    One more thing I noticed is when there is a flare up watching TV or overdoing things in laptop has never helped. Early morning after toilet I used to sit relax for 10-15 minutes taking slightly longer breathes has really helped.

    Most important thing which I have noticed in my case is when ever I got angry or shouted a lot that has really had a very bad effect. Watching comedy shows has helped me to smile during these bad times.

    I am taking Balacol(5ASA compund) 750MG 3 times a day + VSL#3.

    Please suggest if there are any thing which can help my condition.

    Regards,
    Sumit

Leave a Reply