Anyone actually had a doctor . . .

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mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 8/18/2008 1:30 PM (GMT -7)   
Has anyone had a doctor that has actually suggested any sort of vitamin or supplement such as probiotics, bee propolis, etc? My doctors seem indifferent to something as simple as probiotics.
 
Also, I just started a new supplement called Chlorella (I think, I don't have it by me right now). Anyone here used it/something like it with any good/bad effects?
Bad flare May '06 resulted in CD diagnosis-symptoms for 10 yrs prior.
Asacol: 2400 mg/day
6mp: 100mg/day
Prednisone: 10 mg/day
Entocort: 9mg/day


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/18/2008 1:34 PM (GMT -7)   
My GI has a very favorable outlook on Probiotics.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Cookie's Wife
Regular Member


Date Joined Aug 2005
Total Posts : 299
   Posted 8/18/2008 2:02 PM (GMT -7)   
My GI has given me samples of Probiotics. And when I was in the hospital they gave me Keiffer yogurt after my rounds of antibiotics.
~april
 

 



Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 8/18/2008 4:26 PM (GMT -7)   
I've had several doctors suggest probiotics and supplements. The ones suggested so far have made me worse, but I have the info for something new sitting on my fridge. I'm getting up the nerve to try it. We'll see. I know that probiotics are suppose to be good for us, but I've never had much luck with them. I've tried several brands, live refrigerated and the ones that are on the shelf, but I've still ended up sicker. So maybe next time will be the charm.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


LMills
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Date Joined Apr 2008
Total Posts : 1753
   Posted 8/18/2008 4:37 PM (GMT -7)   
My doctor told me it would be good to try them. I also had several dietitians visit me during my last hospital stay tell me that taking probiotics would be a good idea. I just started taking an acidophilus supplement today actually and am drinking kefir when I can. Let me know how the chlorella works out. I'd like to try some more supplements like that, but I've noticed a few like the chlorella say "act as a natural laxative" which exactly what I don't need. I'm pretty curious about the bee propolis and aloeelite though...
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 8/18/2008 4:44 PM (GMT -7)   
my gi seems to think they wouldn't be very beneficial to me.
.: stephanie :.
33 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/18/2008 4:46 PM (GMT -7)   
Chlorella is of limited use unless it is "broken cell" because it is not digested otherwise. As for the probiotics, make sure that your probiotic does not contain FOS. That is added to a lot of formulas because it is a bacteria food. Unfortunately, it can also feed the gut bacteria that cause inflammation. Try to find one that has Lactobacillus casei. That has been shown to have the greatest effect in reducing TNFalpha, just like Humira, without the general immune supression. Lactobacillus bulgaricus is almost as good. Finally, once you have a good base of beneficials in you, you need to feed them. Lactose free whey powder is one option. The best option is home made yogurt or kefir. You need to age it 24 hours to remove the lactose - commercial yogurts are not fully aged and contain lactose and usually other undesirable additives like starch and sugar or FOS.

jacenta
Regular Member


Date Joined Nov 2006
Total Posts : 47
   Posted 8/18/2008 9:38 PM (GMT -7)   
what is FOS? is it written on the label?

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/18/2008 10:08 PM (GMT -7)   
Usually the term FOS is on the label. Sometimes they spell it out: "fructo-oligosaccherides"

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 8/18/2008 10:17 PM (GMT -7)   
Doctors are often indifferent to probiotics and supplements because there is little to no evidence that these things benefit Crohn's. (Admittedly, this lack of evidence is in part due to a lack of studies.) And most doctors follow what's called "evidence-based medicine," ie, if there hasn't been a study done to prove something works, then the doctors aren't interested.

As for probiotics, the simple fact is that nobody knows whether they help or not. They might help. And they might not. They might even be problematic. Or it might be that some strains help and others hurt. Or some might help you and hurt me, or hurt you and help me. Nobody knows.

So the best thing is probably just to try them on your own and see if you can find something that helps you.

Side note: The one area where studies do seem to show benefit of probiotics is in pouchitis, inflammation in J-pouches for people who have had that surgery.

Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 8/19/2008 12:14 AM (GMT -7)   
There are studies showing very promising results of Bifidobacterium infantis on IBD...so my doc has been recommending that probiotic. It has helped.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/19/2008 10:13 AM (GMT -7)   
Studies on the positive effects from VSL3 are enough evidence that ALL IBDers should be taking probiotics, any doc that is indifferent towards them or thinks it won't benefit their patients has their head in the sand.

It's already known that our system is attacking harmless bacteria which in turn cause our symptoms, we tend to have bacterial over-growth which is why probitoics daily and indefinitely is essential...docs don't always know their stuff, I would never competely rely on what any doc says especially given the fact that they all have their own opinions which I sometimes think is based less on medical knowledge.

BTW, my GI strongly encourages me to continue taking bee propolis because of the positive effects I've gotten from it, infact he told me to add fibre supplements daily and indefinitely as well, which was the best advice I've ever gotten from a GI.

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


beave
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Date Joined Mar 2007
Total Posts : 1091
   Posted 8/19/2008 11:30 AM (GMT -7)   

So those doctors from the Mayo Clinic, Cleveland Clinic, Scripps Clinic, etc, who gave presentations at a IBD seminar I attended last year have their head in the sand?  I'll be sure to let them know next time I see them. smile

In all seriousness, I'm planning to go to another conference soon in which the latest research on probiotics will be one of the topics.  I'll try to post what I learn on here.

And by the way, VSL3 was shown to be beneficial in ulcerative colitis, but not in Crohn's.  And it was only one study.  So the jury is still out.  It's not the simple situation some make it out to be.


mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 8/19/2008 11:38 AM (GMT -7)   

Thanks for all the feedback, it is really interesting to know how different most doctors can be. I will let you know how the Chlorella turns out, so far so good but it's pretty early to tell yet.

I was wondering too, has anyone taken some form of Fish Oil? I tried that for awhile, but I think it made my D worse, it's hard to tell of course because I was starting a flare at the time. mad

Thanks again!


Bad flare May '06 resulted in CD diagnosis-symptoms for 10 yrs prior.
Asacol: 2400 mg/day
6mp: 100mg/day
Prednisone: 10 mg/day
Entocort: 9mg/day


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/19/2008 12:18 PM (GMT -7)   
beave, as a member of the CCFC, the journals I recieve have more info about new knowledge of the benefits of taking probiotics, there have been more studies than just one and it's believed that probiotics are not only a benefit to IBD (CD and UC) but to IBS as well....maybe the docs at the mayo clinic, cleavland clinic, ect, should become members of the CCFC to learn about the latest advancements when it comes to mechanisms of intestinal susceptibility to bacterial pathogens, archaeal microbiota in IBD, the effect of never growth factor and probiotics not to mention many, many more studies going on regarding probiotics/bacterial infulence and IBD...I assure you the jury is not still out when it comes to the benefits of probiotics (even for those who do not have an intestinal illness), of course much more needs to be learned and no one said it's a simple solution (that would be ridiculous to assume) but it most definitely has it's place where crohn's, UC and even IBS are concerned.

:)


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


Keeper
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Date Joined Jun 2008
Total Posts : 1058
   Posted 8/19/2008 5:57 PM (GMT -7)   
The medical community still says that Crohn's is an auto-immune disease. Current research has identified the target of IgG immune globulins in Crohn's patientts as common intestinal bacteria. http://www.nature.com/nature/journal/v448/n7152/abs/nature06005.html and http://gut.bmj.com/cgi/content/abstract/38/3/365
That does not help much, since the intestinal bacteria are hard to alter. One of the culprits is extremely antibiotic resistant and can develop resistance to almost every known antibiotic. That explains why the problem returns regularly as well as why many people have great results from cipro or flagyl for a time. As for the use of probiotics, some studies have shown that certain probiotics can competitively displace a common gut bacteria that has been identified as targeted by immune globulins when supported by dietary aids: http://jds.fass.org/cgi/content/abstract/81/5/1229

beave
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Date Joined Mar 2007
Total Posts : 1091
   Posted 8/19/2008 9:54 PM (GMT -7)   
rolleyes   Well pb4, since the doctors I met at the conference probably WROTE some of the research in your journals, I doubt they need to become members of the CCFC in order to gain access to this info.  But nice try.
 
Like I said, I'll be attending another conference next month and probiotics will be one of the topics.  I'll hopefully get more info then.
 
In the meantime, I should point out that the studies in the CCFC journal are *suggesting* there might be a benefit to probiotics.  If and when those studies are duplicated over time, THEN AND ONLY THEN will you or anybody be able to say with confidence that probiotics help.
 
If probiotics have so clearly been proven beneficial, tell me exactly which strains help and exactly what they help with.  I doubt you can.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/19/2008 10:36 PM (GMT -7)   
Are any of them Canadian because the researchers conducting these particular studies that I mentioned above are Canadian researchers actually. Yes, they are suggesting it BASED ON THEIR RESEARCH so far.

Clearly more studies are being done on which are the most effective strains and how exactly they help, but at least they are investigating, and not to mention, ask how many people here at HW alone have found benefits to taking them.

Again, no one is suggesting probiotics is the only source of a future cure but at least they are one step ahead and that's better than being 2 steps backwards like most.
 
BTW, did you know this about VSL3...VSL#3 probiotic upregulates intestinal mucosal alkaline sphingomyelinase and reduces inflammation.
 
here's the link you can read what the Canadian Journal of Gastroenterology writes...
 


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

Post Edited (pb4) : 8/19/2008 11:51:30 PM (GMT-6)


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1184
   Posted 8/20/2008 1:31 AM (GMT -7)   
Probiotics works and I'd siggest Natren Brand or the Nature's Way, Primadophilus Reuteri. Both are supposed to help the Intestines. There is no point arguing about it, either you try it and it helps you/or not or you don't try it and you will never know.

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis with no Granuloma
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


nruth
Regular Member


Date Joined Mar 2006
Total Posts : 195
   Posted 8/20/2008 11:10 AM (GMT -7)   
I asked my doctor what he thought about probiotics, and he said, "what are probiotics?" Hmm.

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 8/20/2008 11:30 AM (GMT -7)   
pb4, thanks for proving my point for me! wink
 
The article you link discusses VSL3 and ulcerative colitis.  If you read my earlier posts in this thread, you will see I mentioned that already.  The article does not mention Crohn's.
 
And, yes, one of the researchers I met was from Canada (University of Western Ontario, I believe).  His name was Brian McFeagan or something like that (I'm not on my normal PC so I don't have my links or any of my info right now).

mj8dokken
Regular Member


Date Joined Dec 2006
Total Posts : 149
   Posted 8/20/2008 12:20 PM (GMT -7)   
I think you're arguing just to argue now. Everyone knows that there is no definitive research yet.

Bad flare May '06 resulted in CD diagnosis-symptoms for 10 yrs prior.
Asacol: 2400 mg/day
6mp: 100mg/day
Prednisone: 10 mg/day
Entocort: 9mg/day


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/20/2008 12:59 PM (GMT -7)   
Have a look at http://gut.bmj.com/cgi/content/abstract/51/5/659 You can view the entire article if you do a free registration. It cites downregulation of TNFalpha by Lactobacillus bacteria in vitro using tissue from crohn's patients having undergone a resection. The graphs in the complete article show that L. casei reduces TNF alpha levels to the level of the controls (no increased TNF). You may want to wait for the placebo controlled double blind study on a large population before you would consider trying something so radical and dangerous... Seriously, if people on this forum report good results from using probiotics, are you going to wait for the science to catch up?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/20/2008 2:36 PM (GMT -7)   
I'm with you keeper, plenty here are having some success with taking probiotics and I'm glad I'm not living in the dark ages waiting for science to catch up...now on t.v. you see all these commercials pushing probiotic foods/beverages, well it's about time, I've only been taking probiotic supplements for almost 5 yrs now.

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


beave
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Date Joined Mar 2007
Total Posts : 1091
   Posted 8/20/2008 6:09 PM (GMT -7)   
Keeper, you're right that some people on here have reported good results, but we all know that's far from scientific.  I could give everybody on here a sugar pill, tell them it's a new Crohn's med, and 40% would tell me it's helping them.  And what about the people on here who have reported getting *worse* when taking probiotics?  Are we to ignore them because they didn't give the result we wanted to hear (and, yes, people on this forum have reported getting worse after starting various probiotics).
 
For the record, you seem to think I'm convinced probiotics don't help. Not so.  I have and do take them myself - and in various posts on here I've recommended that others try them - but I'm not so sold on them that I'm willing to make any claims like "EVERYBODY should be on them."  That's what I'm disputing, that it's so cut and dried.  It's not.  Some people, many in fact, get worse on them.
 
pb4, in an earlier post you said, "It's already known that our system is attacking harmless bacteria which in turn cause our symptoms, we tend to have bacterial over-growth which is why probitoics daily and indefinitely is essential."  That seems to contradict the use of probiotics.  After all, if our immune system is attacking harmless bacteria -- which is exactly what probiotics are -- and that leads to our symptoms, then how is ingesting more of these bacteria beneficial?
 
And, yes, I'm arguing just to argue.  I enjoy these debates and hopefully all of you do too.  If we learn something in the process, even better.
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