Using probiotics

[Jeff D.]

I am starting a regimin using Primal Defense to hopefully start treating myself without medication. I am getting sick of taking something that makes me feel worried that I could get liver problems(6-mp). So I am going to start taking PD and if it makes me feel better I will ask my GI if I could try going off of my medication. All I know is that for the past month I have been taking my meds everyday and I am losing weight and having D with chunks of stool in the mix. For the past four days I stopped taking my meds and for once today I had a normal for me BM. I think my medication is slowly killing me and it may be causeing me to be depressed.

Wish me luck and I will start a journal in here with my experience.

Day 1 I bought PD and took one pill. Obviously nothing will happen in a day but hopefully within a week I will get a little better.

 

[D Bergy]

Good idea with the journal. I really get a lot out of them.

I hope what you are doing will work, but be careful. Don't be too proud to go back on some medication if you need to. Last thing you want is to make matters worse.

Also, don't fool yourself. If you are not really improving over time then you need to do something that does help. The journal will help you assess your progress.

Good luck.

D Bergy

 

[Jeff D.]

Yeah thats why I'm going to journal everything here. That way other people can see how the product works. I'm going to keep taking my medication and am not afrain to go back on it but I may try another medicine later.

 

[Cara Fusinato]

Kudos to you . . . I feel the same way about the traditional meds for Crohn's. I think they just came up with some ideas that might work, but it seems like the body decides for itself. Some people remain stable, others, despite the meds, get worse. It's the body's own decision. I, too, am trying only natural approaches and have done so for over a year. I have actually improved enough to be able to eat some fruit and veges and have had a reduction in pain.

Keep us posted -- if primal defense doesn't work for you, ask around and maybe some of us can suggest some other brands.

 

[Jeff D.]

Thanks for the support. It's weird because I have been stable pretty much ever since four months after diagnosis. I don't really believe that anything they give really does much and if anything it's a placebo affect.

 

[mikeyarmo]

Good luck with this Jeff, but I hope you do realize that this can be dangerous. It would be best to speak with a doctor before attempting to treat yourself, as it could be harmful to just suddenly stop a medication.

I know that for me personally, primal defense did not work. I tried the Specific Carbohydrate Diet and Primal Defense at the same time, and while I felt good for about a week, my health did not last and this lead to more weight loss and a hospital visit.

I have no disbelief that natural treatments worked (and are working) for Cara, but I would never advise someone to attempt a treatment without knowing all the potential benefits and all the potential risks.

I support you though no matter what you decide and wish you all the best.

 

[Nancy Lee]

Jeff, just my opinion but I would be very careful about going off of any prescription medications without your doctor's knowledge.

I would feel terrible if you had a flare after going off without your doctor's say so.

IBD is a very very serious disease..not one to play around with or just stop taking your prescribed meds.

Sorry I can't condone you doing this without your doctor's input.

Please consult with him/her first. Okay?

 

[Jeff D.]

Oh sorry, I forgot to say that I am still taking my medicine it's just that I forgot to take it when I left town. Hopefully if I feel better then I will ask my doctor to take me off my meds.

Today still not much difference. Took one pill.

 

[Cara Fusinato]

Ya, I agree. Before I deviated from the traditional, I spoke to my Dr. who gave me full approval. After 6 months in the clear, he still approves. I must see him every 6 months to report on my symptoms (or lack of) and my stability (or lack of). He has an open door policy with me that should I begin to feel symptoms, I must enter the office immediately as an emergency appointment. Don't do anything without Dr's full approval and supervision.

 

[Sojourn]

I went off my meds a few months after being diagnosed back in 2003. I started taking probiotics (primal defense) and aloe molecules. I did very well until just recently as you may know from my other thread.

I didn't have any Dr.'s guidance and basically refused to accept I'd ever been diagnosed with crohn's. I've got an abscess and fistula now that I'm trying to get under control. But as we all know, this disease is different for everyone.

I can't imagine any doctor would agree to going off meds when you've been diagnosed with crohn's. I'm surprised about Cara's doctor. You may have to look around to find a GI that would agree to monitor you while you try out the natural approach. Of course be careful and make sure it's a reputable GI practice.

 

[Mazen]

Yeah, I agree with Sojourn. Whenever I ask my GI about meds, he says that I have Crohn's and I need meds for all my life... I think the choice to stop meds would be our own, which sucks It's a hit or miss thing...

 

[D Bergy]

Maybe the people on this site are not a good cross section of Crohn's cases but I do not see very many people without serious flares. With or without medication. I am having a hard time seeing much improvement in general for the long term with anyone. Maybe someone should start a thread listing some years of improvement using whatever method has been working for them.

I suppose people without issues probably do not frequent the forums as often.

D Bergy

 

[Nancy Lee]

Hello D Bergy!

I guess I should pop my head in the door more frequently.
I was diagnosed 11 years ago...in hospital in critical condition, where I flat-lined.
AND touch wood..have had no really serious flares, just the minor two to three day bouts, where I place myself on bed rest and liquid diet.
These have happened oh,...maybe four or five times since diagnosis.
I think that's pretty good for all these years with Crohn's.
I started out on Prednisone when first diagnosed.
Then on to Entocort, and finally Asacol, where I have been for about the last 8 years.
A maintenace dose of 6 Asascol a day is what I have taken for about 8 years now.
I have not required surgery, even though my Crohn's runs the entire length of the large and small bowel.
I run an at home business, but I did that even before I was diagnosed.
I pretty well stick to my diet and get regular exercise, and always listen to my doctor.
Positive thinking has been a tremendous help in my well-being.
I am basically a postive, happy, person who does not dwell on the Crohn's,
but I find ways to work with it, so as to continue the lifestyle I had before diagnosis, as much as possible.

Yes I agree I don't think we get a good cross section of Crohn's patients in here.
But remember, most come here newly diagnosed as well and are in greater need of support and answers to their quesions.

Nancy~

 

[Op.28/18]

Oh sorry, I forgot to say that I am still taking my medicine it's just that I forgot to take it when I left town. Hopefully if I feel better then I will ask my doctor to take me off my meds.

Today still not much difference. Took one pill.

Did you ever end up noticing a difference?

Primal Defense is one of the first probiotics I tried too, but I was taking more than 1 pill each day--3/day, if I remember correctly. I was also taking Digestive Advantage for Crohn's and Colitis (2/day). I noticed some improvement, but I still wasn't in remission. Then I added Nature's Way Primadophilus Reuteri, the 5 billion CFU one, and, with a clean diet, it put me in remission. And now I notice that if I am beginning to notice a flare is coming on, if I take more probiotics, 4 at once or so, I'm able to keep my remission.

For me, probiotics have been safe and effective, and have allowed me to finally be in remission. I wish doctors would seriously research probiotics. Maybe there's a reason why they work for some and not others. Maybe there are particular foods to avoid and others to eat more of. (Apparently bananas have prebiotics, which help the good bacteria grow, so I eat a lot of bananas.)

 

[Jeff D.]

I never noticed much of a difference. I only take probiotics of one type now, such as an acidopholus probiotic instead of the multi ones. I only take them when I'm on anti biotics. Wow I can't even remember that I started this thread.lol

 

[BWS1982]

I thought you were supposed to take them AFTER antibiotics, otherwise you're just feeding lamb to the slaughter by taking the "bug and the poison" at the same time, if you take it following antibiotics, you can replenish your bowels with the good ones.

 

[Jeff D.]

I'm sorry I have been extremely busy this week and haven't slept much so I can't think very clearly. I take them during anti-biotic treatment and I take them for about a month afterwards. After that I taper off of them so I don't get a rapid decrease in probiotics.

 

[dad_01]

Maybe the people on this site are not a good cross section of Crohn's cases but I do not see very many people without serious flares. With or without medication. I am having a hard time seeing much improvement in general for the long term with anyone. Maybe someone should start a thread listing some years of improvement using whatever method has been working for them.

I suppose people without issues probably do not frequent the forums as often.

D Bergy

I think that's a good observation. At least judging from myself, I use this forum in spurts - typically tied to when I have a burning issue about something.

 

[hippie4lyfe]

im using primal defense now and im not really sure its made a difference, been on it for about 3 weeks or so