Advise Against Probiotices

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subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/14/2009 9:45 PM (GMT -6)   
I know someone who is taking antibiotics, Asacol, and Prednisone for microscopic Colitis. I told her that she should go to the drug store right away and get some Probiotics. She said that neither her doctor nor her pharmacist mentioned Probiotics and that she was not going to do anything without the advise of her doctor. Is it possible that a doctor would tell someone not to take Probiotics?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/14/2009 9:50 PM (GMT -6)   
I think it's possible that the doctor mentions nothing about taking Probiotics.

I was so surprised that my G.I. doctor didn't even mention or recommended taking Probiotics until I actually brought it up when I was flaring.
He only recommended, PREDNISONE and 6MP.
Sigh. I should have started probiotics earlier. I started taking probiotics only two months ago even though I was diagnosed with UC more than a year ago.
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/14/2009 10:29 PM (GMT -6)   
Quite likely the doctor didn't mention probiotics. A lot of them aren't really aware of the benefits.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 3/15/2009 5:30 AM (GMT -6)   
5 different GI's over the years. None mentioned probiotics. How can you be in that industry and not know about probiotics? Really no excuse there. Better reasons, but I won't go into all that mess. It falls back on her to educate herself.
Proctitis DX 1999, Pancolitis DX 2008
Lialda 1 day
Immuran
Golimumab study (100mg every 4 weeks)
Vitamin E Enemas as needed
Probiotis/GreenTea/VitD+Ca/SuperDHA


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 3/15/2009 8:53 AM (GMT -6)   
My GI never mentioned probiotics. I was the one that brought it up and he said they were good. He was more into pushing for prescription meds.
31 yr old female currently breastfeeding
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse, MUCH worse
Not taking any meds for now. May be on 6mp soon?


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 3/15/2009 9:18 AM (GMT -6)   
My GI did mention them... he said some have had good results with them, some have noticed no difference. Try them if I liked. He thought it probably had to do with the brand and to make sure I got a good brand. WHen I asked for a recomendation, he had none. Sid he didn't have enough info on the area. I first just used a GNC brand. Till I saw on here that it didn't have as many as some of you were taking. When I asked for recomendations on here everyone recomended brands I had to purchase off the internet or couldn't find locally. Since I HATE buyin off the internet, I asked my Pharm about it and he recomended a brand that they carried at his old Pharmacy. I drove up there and bought them and have been using that brand ever since. FloraJen3.
 
38 yr old male, NE Ohio, diagnosed Aug 2008, but been with symptom since Nov 2007
30 mg pred, 9 balsalazide, rowesa nightly, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera tabs
Following gluten free diet as well as spinach/sunflower regime
**down to 25 mg of pred 12/25/08 **down to 20mg of pred 1/7/09**down to 17.5 mg 1/22/09
**down to 15 mg of pred 2/3/08**down to 12.5 mg of pred 2/13/09**down to 10 mg 2/26/09
MED CHANGE: 1/13/09-- 4 Lialda, 2 Pamine Forte, 1 Florajen3 probiotic, 2 Aloe Vera tabs, Rowesa every other night, 20 mg of Pred, Lomotil as needed, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol
 
 
 
 
 
 
 
 
 
 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/15/2009 10:49 AM (GMT -6)   
So for those of you who your GI didn't mention Probiotics, did any of them advise you not to take them when you asked about them?
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


mudua
Regular Member


Date Joined Apr 2007
Total Posts : 459
   Posted 3/15/2009 11:06 AM (GMT -6)   

I am from South Africa aned I am horrified at how little doctors in this country know about colitis.

 

 

 

 

 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/15/2009 11:46 AM (GMT -6)   

My first appointment with my gastro doctor - before the colonoscopy and diagnosis handed me 3 weeks supply of Align probiotics.  He, no doubt gets them as samples from the company.  However, he does believe they have helped a lot of his patients when I ask about them.  I saw much improvement in "formed" BM's in about a week or so.  They caused extra gas for about a week but then it got better.  I have been taking the same now for almost a year.  Tried Primal Defense (too much gas, etc.) and Phillips which only caused gas and diarrhea returned.  I found I could not tolerate mesalamine medications but never had problems with diarrhea - just side effects.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 3/15/2009 2:12 PM (GMT -6)   
Not only did my daughter's doctor not mention probiotics, he said that if we wanted to try them, we were on our own because he was "a science man." Now, 3 years later, my daughter has a jpouch and her surgeon told her after surgery that she must take probiotics for the rest of her life to keep her pouch "healthy."
Let's face it, they are "medical" doctors and feel more comfortable (or encouraged) to push medications rather than something that's more natural for the body. BTW, my daughter's doing great digestively, but the d*#@ prednisone has given her a lifelong bone disease that will cause her to face a multitude of surgeries and joint replacements. I urge you to research Prednisone and Osteonecrosis. It's criminal that this risk is not disclosed. And, if your joints hurt, I urge you to discuss/research the possibility of this serious adverse side affect from this drug and request an MRI...an x-ray will not catch this disease in the early stages.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 3/15/2009 3:44 PM (GMT -6)   
My doc didn't mention probiotics...I told him I was using them. He asked which brand, wrote it on my file and stated they were a good brand.

I believe I'm proactive in my care, and although I trust my doctor to treat me for UC, the rest of my health is really my responsibility. He's suggested I exercise more...good advice, but my bad for not heeding it.


q
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/15/2009 3:53 PM (GMT -6)   
Any doc that doesn't mention the benefits of taking probiotics daily and indefinitely is completely out of the loop, research has shown that probiotics can be very essential when it comes to IBD and IBS as well.
My bum is broken....there's a big crack down the middle of it! LOL :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30587
   Posted 3/15/2009 3:55 PM (GMT -6)   
Out of the probiotics loop you mean? I personally don't think docs need to mention every little thing that's advertised on TV hundreds of times a day.

We can make our own lists, and research for ourselves. Why leave absolutely everything up to the doctors?

quincy
*Heather* Status..Asacol  (3 x2 daily); Salofalk enemas nightly for flares, tapered to maintenance  mild flare nightly enemas
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/15/2009 4:17 PM (GMT -6)   
My GI hasn't mentioned it but my primary told me about taking acidopholus w/ antibiotics. I had a nurse actually tell me at my gyno in high school about probiotics before I was diagnosed w/ crohns. For me, antibiotics = guaranteed yeast infection. She shook her head and was like "I don't know why the doctors aren't telling you girls about acidopholus..." It has worked!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5963
   Posted 3/15/2009 4:38 PM (GMT -6)   
     The first time I ever heard of probiotics was when I was hospitalized last May.  My GI doctor had me taking Flora Q in the hospital.  He wrote me a script for them but they are sold over the counter.  They cost a fortune too.  So, when I went to my nutritionist she suggested the Powerdophilus by Country Life.  She said they were just as good as the Flora Q and she takes them herself.  I keep them refrigerated and take two capsules a day with food, as they prescribe to do.  I told my GI doctor I was taking them and he said they were fine.

 
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


dodge08
Regular Member


Date Joined Feb 2009
Total Posts : 31
   Posted 3/15/2009 5:01 PM (GMT -6)   
My doctor never mentioned them, when I finally asked, his exact words were "people think they show promise, but they really do nothing". My naturopath dr completely disagrees. I still take them!
Male 38, diagnoised in 1998, first major flare in November 2008, have had 2 remicade infusions
have used pentesa, salofalk pills (mesalamine), and enema's.
Started salofalk again until I can get my next remicade.
currently decreasing predisone, take folic acid, calcium, vitamin D, HMP powder and a multi vitamin


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 3/15/2009 5:06 PM (GMT -6)   

q - you are right about being proactive if we can.  I say that because my husband has to rely completely on his VA doctors to offer treatment he needs including medications, etc.  He has COPD, lung cancer, heart surgery, etc. etc.  They have saved his life more than once.  Yes, they have given him choices at times and great explanations.  But, my husband is 73 and even though his heart problems started at 48 - he was years clueless as was I.  When I got my computer 9 years ago I started researching his medical problems.  So much you can't rely on and doctors won't listen to anyway.  Now, I check out his medications, interactions, etc. - something he would/could not do in the past.  That is why second opinions and NP or Pa can be helpful with those extra things - like nutrition, supplements, etc.  Yes, some have to leave everthing up to the doctors!  My husband always says they went to school for many years to do what is right for him.  BUt, for those of us who can research and get more info - good!  I have learned a lot here but also I know my knee surgeon, my primary care doc and my gastro NP/Doctor do NOT like me to mention I learned something on the internet so I am careful about what I talk to them about.  No doubt they think I am a gullible old lady who believes every thing I read LOL - NOT!!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008
Tried all mesalamines and enemas, Canasa, etc.  Colonoscopy 10/28 showed only few cm. left to heal -hydrocortisone enemas 12 days - much worse. Cannot tolerate mesalamine!
2/3/2009 - sigmoidoscopy showed about 30 cm. involved but mild - starting on prednisone only 40 mg. taper on 2/7/2009.
 Feb. 21 - down to 20 mg. - no blood, no pain, no bad side effects so far. Starting 6-MP Feb. 28 along with 20 mg. prednisone. March 9 - spoke too soon - bleeding returned.
Probiotic Align, Prilosec for GERD
 
 
 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 3/15/2009 5:10 PM (GMT -6)   
Probiotics have never worked for me.
Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day
 
 
 
 


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted 3/15/2009 6:02 PM (GMT -6)   
I asked my doctor about them and he said they would good for IBS byt no evidence for IBD. He said it probally wouldn't hurt and gave me abou 6 mo of samples of ALIGN.
Jessica 27/F
Remicade
Entorcort 9ml
Lialda 2.4GM
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/15/2009 6:29 PM (GMT -6)   
hana24, then your doc is "out of the loop" because the research on VSL3 for IBD shows the stats on the benefit and if you're doc doesn't know that then that's a shame for you and the rest of his patients.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/15/2009 8:01 PM (GMT -6)   
Thanks for your input everyone. I really appreciate it.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


James l
Regular Member


Date Joined Jul 2008
Total Posts : 95
   Posted 3/15/2009 8:05 PM (GMT -6)   
jars05 said...
Probiotics have never worked for me.


even VSL#3? not even some relief of symptoms?
JAMES - 19 Years old. 2nd year in college.
5'11. Pre-med student
Was bodybuilding for middle weight class at 175lb with 6%bf. then BOOM. UC kicked in for the first time in my life
Diagnosed with UC in Feb 2008. Lost 25lb in three weeks. Bloody hell diarrhea
Flare up in june 2008. took more antibiotics. Harder flare
Took prednisone for two months then 6mp. But I decided to get off on both.

10/08Started drinking hard liquors and once drank 15 shots in an hour.
Next day flare up.
11/08 Started anti-yeast regimen. I crapped out so much yeast. confirmed candida in stool studies.

On: No med but zinc, cod liver oil, coral calcium, probiotics, threelac, alpha lipoic acid, chlorella, sea salt, licorice root, aloe vera juice, VSL#ds(started 3/10/09)

Started eating dairy and all kinds of cheese again(beginning of March and I'm fine)
in 95% remission, E-mail me if you have any questions about how I achieved my remission.


Southernbelle
Regular Member


Date Joined Feb 2009
Total Posts : 33
   Posted 3/15/2009 9:31 PM (GMT -6)   
My Doc STRONGLY suggested I take them.
Dx leftsided UC July 08.Can't handle any masalamine or 6-MP
Been on steroids twice. Do well on those.
Suppliments: Aloe MPS, probiotics, enzymes, C and E, Curcumin,CoQ10,Grapeseed extract, Selenium, Cal.-Mag w/D, Multi., Vit.E enemas, Three-lac
Meds: mild blood pressure. Prilosec, Wellbutrin, steroid suppositories
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 3/15/2009 9:48 PM (GMT -6)   
My first GI recommended VSL#3 because it is one of the few Probiotices that has a study behind it. I tried it for 5 weeks and it did absolutely nothing for me. If you look at the study it is open label and has a small number of participants. My second GI asked me if I wanted to participate in a placebo controlled VSL#3 study for UC. This should be a much better study than the first. I declined because I had already tried it with no results.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 3/16/2009 8:01 AM (GMT -6)   
pb4 said...
Any doc that doesn't mention the benefits of taking probiotics daily and indefinitely is completely out of the loop, research has shown that probiotics can be very essential when it comes to IBD and IBS as well.

Ha. Every GI I've seen has been "out of the loop." Not one ever mentioned probiotics; it's always about the pharmaceuticals. However, when *I* bring up the subject, they're generally either okay with it or have the attitude of "it can't hurt."
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine. Probiotics, l-glutamine, vitamin D and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Mostly grain-free and dairy-free diet. Long-term remission with only minor blips.
 
 

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