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05-13-2014, 01:14 PM   #1
jettypark28
 
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Join Date: May 2014
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Scams and Crohn's

I had Crohn's since 1984.. when I blew up inside and they had to take a
few feet of my guts out...Then I took Predisone for so long that I forgotten
how many yrs I was on that..

Finally after being on a roll coaster ride of side effects and other mental
issues I gave that up and only take it when I have no other choice..
and yes I have try everything else...

I went thru some trials/work shops and other snake oil wonder drug...finally
decided to give everything up and take each day as best I could..

My Gf is a health nut and stays pretty active (we are both in our 50s) and
is always looking for something new...

I'm sure most have heard the SOS... where someone took this new drug/Vitamin/shakes
and the Crohn was gone..

Well we have a few friends who swear by a new product/company and I'm
pretty good at finding thing.. but can't find much on this new Snake oil
company...

They go by the name of "THRIVE Premium Lifestyle DFT" and I just wanted
to ask if anyone here has heard anything on them...

Everything I found is fishy.. but I promise my GF that I would try anything
at least once...

Oh I have been on the site for awhile but never joined... I'm more of a reader
then talker.. but you wouldn't believe that from this long thread... LOL..

Anyway thank you for taking the time to read this and for any replies..
I will be more involved in the forum from now on
... because it sucks being alone with Crohn's and people that have No freaking
clue about Crohn's always seem to have an answer for me
05-13-2014, 01:33 PM   #2
Lisa
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First, welcome, second, never heard of them! Usually if you have a 'feeling' about something, it means something! Any idea what this wonder treatment is supposedly made up of?
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
05-13-2014, 01:37 PM   #3
Mellybean
 
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Amen! I've had so many people just suggest some really obscure homemade cures. my faves:
Eat gluten free. If I eat gluten-free as well as no fiber, no spicy stuff, no fat or caffeine I'll literally eat nothing.
Try such herbal remedy. Try these vitamins. Try juicing.
Myself, I try my meds, rest and eating as healthy as I can. Plenty of fresh air, and stay far away from snake oils. lol
I wonder though, if some people don't push miracle wonder treatments on us because it's really hard to be helpless in front of such a disease? And in such a case, why is it so hard to just say to them that we need other forms of help...
Kinda hard not to understand their concern, but it is ever so frustrating!
05-13-2014, 01:51 PM   #4
jettypark28
 
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pasobuff> their shake/pills and Patch (yes I said Patch) have nothing but the regular
Vitamins you find at any Heath store (a lot cheaper at the stores)... but I did find
that it does have 3 high power caffeine and 4 dangerous stimulants...

In a few of the reviews I did find some people had trouble.. after getting off it..
headaches and some folks said it felt like taking speed...

And don't worry... I'm not about to take this crap> but like I said before
I promise my GF... but bless her heart she always fall for stuff like this..
because a friend told her so....and I try to be cheerful with her when it comes
to my Crohn's because I put that girl thru hell during my years of taking
everything under the sun for Crohn's..

Now I go fishing and take what the man up stair give me on that day...

Thanks for the welcome

Oh on their facebook page they have a few who said it cured their "Crohn's"
the funny part you can't find any information on those people
05-13-2014, 02:29 PM   #5
nogutsnoglory
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Anyone with extraordinary claims needs to be watched out for. If their product was so phenomenal you will see it all over the news.

Last edited by nogutsnoglory; 05-13-2014 at 03:22 PM.
05-13-2014, 03:12 PM   #6
Cat-a-Tonic
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I agree with NGNG 100%. That part about extraordinary claims reminds me of a quote - "Extraordinary claims require extraordinary evidence." - Carl Sagan

There is currently no cure for Crohn's - Scientists/researchers may be getting in the ballpark with the stuff they're doing with stem cells nowadays, but I would absolutely not trust a shake or a patch that claims to be a cure. If anything, stuff claiming to be a miracle "cure" makes me not want to touch it with a 10 foot pole!
05-13-2014, 03:17 PM   #7
sid
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are we going to see any cure at all ?? so many researches and experiments going on but no breakthrough really. So its understandable why people try these miracle cures.
__________________
In remission since Diagnosis

Crohn's since Jan 2011.

No meds.
Diet as per ayurveda.
Vitamin D and B12 shots.
Currently experimenting with Probiotics, starting 2016.
And a large joint mad family, thus stress cant touch me.
05-13-2014, 03:19 PM   #8
jettypark28
 
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Too be fair the company isn't claiming anything other then being a "Wellness and
weight Management group" that deals in "All-natural formula" ....

It's the people that are taking it claiming cure's and other overnite wonder.... the thing
I try to get across with some people is to always do "Research" and look at the fine
print...

and if you can't find infor.... walk away..
05-13-2014, 04:31 PM   #9
valleysangel92
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Hello, welcome to the forum

I'm glad to see you are approaching this with caution, generally if something doesn't feel right then it probably isn't.

I'm sure your gf means well and just wants to help you, but if you don't feel comfortable with the treatment then stay away from it.

You aren't alone, we understand what this is like and we will do everything we can to support you. Feel free to rant here as much as you need to and vent your frustration as much as you need.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-13-2014, 09:39 PM   #10
D Bergy
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Join Date: Apr 2007
There is nothing wrong with taking vitamins to make up for what the a Crohns is taking away from us. There is nothing in the product that gives me any indication it would have any significant effect on Crohns, and I have tried many unusual treatments.

On the other hand, if your other half thinks you could benefit, and you are sure it won't cause problems, it might be with a try just to make her feel better.

I don't like the stimulants. That would make me shy away from it.

At least she is aware of your condition and cares about your well being. That's not always the case.

Good luck.

Dan
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Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
05-14-2014, 02:24 PM   #11
Ihurt
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You have to be careful when it comes to " supposed cures". There is NOT going to be any magic pill that is going to cure you. Now there may be some natural things that can really help though. It just depends on the person as everyone's body is different and will react different to treatments. I know a guy who has UC and he went on an extreme diet, I mean extreme. He does juicing with all organic vegetables and fruits. He drinks Raw kefir made with raw goats milk. and he even said he only eats raw meats that are 100% organic and free range. ( I do NOT agree with this, I think it is dangerous and just asking for a parasite). But anyhow, he said it is the ONLY thing that stopped his UC. He does not eat anything else at all. He has been disease free since being on this diet for the last 5 years. Would this work for everyone? No, probably not, but it worked for him. Is he cured? No, but he is disease free as long as he sticks to this regimen. I guess my whole point is, There probably are natural things that can help a person to feel a lot better. But you do have to be careful when it comes to people claiming to offer a magical cure.
05-15-2014, 08:26 AM   #12
Axelfl3333
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I,m sorry if it was that easy to deal with crohns and up purely by diet we,d all do it and probably find doctors would be ramming it down our throats!these quackery cures for lots of conditions also have a mainly diet angle forgetting of course that human beings are genetically omnivores if it grows crawls or swims over the centuries we,ve eaten it!any doctor or ibd nurse worth there salt tells us to eat as healthy and varied as possible while avoiding the individual,s known trigger foods and that advice applies to healthy people as well common
sense methinks and a lot cheaper than buying the DVD set and books.
P.s who could eat raw meat for 5 years?
05-15-2014, 12:05 PM   #13
Ihurt
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I know, I agree that this guy is nuts for eating raw meat. I myself would Never do that! Too risky in my opinion!

But as far as doctors, I hate to say it but even if there was a diet that could help, they would never advise it anyhow. I mean think about it, if there was a diet that could help( which I will say that diet alone cannot cure any disease, but it can help some people a lot ) most doctors are Not going to push that. They would much rather push drugs and such. I mean my MIL was having all kinds of heartburn and reflux issues. You would think her doctor would have told her about diet and what to avoid, but No, he just pushed a script for a PPI for her to take. I think each person has to do what works for them and what works for one person wont always work for the next. It is all trial and error for the most part.






I,m sorry if it was that easy to deal with crohns and up purely by diet we,d all do it and probably find doctors would be ramming it down our throats!these quackery cures for lots of conditions also have a mainly diet angle forgetting of course that human beings are genetically omnivores if it grows crawls or swims over the centuries we,ve eaten it!any doctor or ibd nurse worth there salt tells us to eat as healthy and varied as possible while avoiding the individual,s known trigger foods and that advice applies to healthy people as well common
sense methinks and a lot cheaper than buying the DVD set and books.
P.s who could eat raw meat for 5 years?
05-22-2014, 08:09 PM   #14
Seahawk
 
Join Date: May 2014
Location: Seattle, Washington
I don't have crohn's, I am here looking for answers for a friend. I and my brother have diabetes, I was diagnosed three years ago with adult onset type 1 and my brother is type two dx Oct 2013.
We were both sent to AMA dietitians that recommended a relatively high carb diet. I researched and decided to go very low carb and my autoimmune diabetes has been stable for three years without insulin. My brother id doing low carb and his doctor told him he has never in 25 years seen such a remarkable remission. We both lost 40 lbs and feel better than ever.
Moral of the story, neither of or medical teams mentioned low carb diet as an alternative therapy. I have asked people in the medical community why diet isn't addressed as an alternative to medications they tell me it's because patients cannot be compliant. I have just started investigating Crohn's but I am having a hard time believing that some sort of proper diet wouldn't positively affect your condition. Just saying.
05-22-2014, 09:17 PM   #15
afidz
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The first thing ANY GI will tell you when you have ANY digestive issue is to change your diet. Its not a secret that the food we eat affects how we feel. But diet alone is not enough to treat any disease.
Diet is not scientifically proven to help Crohn's. Of course changing your diet is beneficial to everyone regardless of health history, so its not discouraged either. Yes there are diets that claim to be a good alternative therapy, but once again, they aren't scientifically proven. Crohn's can flare silently for years, severely damaging your insides and no one ever knowing anything about it until they find them selves in emergency surgery. To me, that itself is not worth the risk of simply changing my diet. Crohn's meds are not scams. They do more good then they do bad.
Crohn's and diabetes are 2 completely different diseases. They can not be compared to one another, their treatments can not be compared to one another.
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
05-23-2014, 12:14 AM   #16
DustyKat
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Hey Seahawk,

I am a little confused as to what advice you were given. Did the doctors actually tell you to lose weight?
It is well known that adult onset diabetes generally responds well to weight loss and for those that successfully achieve weight loss then the need for medication, including insulin, drops off.

Whilst the AMA does recommend a high carb diet there is much discussion in diabetes circles about the benefits of a low carb diet and your experience shows what a success it can be, well done.

Unfortunately for those with Crohn’s the dietary results are nowhere near as consistent or successful on a large scale as they are with diabetes. EEN (Exclusive Enteral Nutrition), a liquid/tube diet, is one diet that has been widely researched and has proven to be as successful as steroids in inducing healing and remission but it is not a long term solution to the maintenance of disease control.

You will find many diets talked about on the forum and for every success in alleviating symptoms there are just as many failures. There simply isn’t a one size fits all with IBD and since it is a disease of severities and remissions and relapses the numbers on the forum that can manage their disease through diet alone is small. You may also find that for many with Crohn’s their aim when in remission is to gain and maintain weight, not unhealthily so, but nonetheless carry something in reserve for when the next flare hits.

Crohn’s is a complex disease of which the cause is not known. It is not high profile nor at the forefront of funding and research. Almost all the medication treatments are received via the trickle down effect of the research and treatment of other autoimmune diseases.

As a parent of two kids with IBD…well what I wouldn’t give for diet, and diet alone, to be their saviour. I am happy for you though that it has been yours.

Dusty. xxx
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Mum of 2 kids with Crohn's.
05-23-2014, 12:56 AM   #17
theOcean
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I don't have crohn's, I am here looking for answers for a friend. I and my brother have diabetes, I was diagnosed three years ago with adult onset type 1 and my brother is type two dx Oct 2013.
We were both sent to AMA dietitians that recommended a relatively high carb diet. I researched and decided to go very low carb and my autoimmune diabetes has been stable for three years without insulin. My brother id doing low carb and his doctor told him he has never in 25 years seen such a remarkable remission. We both lost 40 lbs and feel better than ever.
Moral of the story, neither of or medical teams mentioned low carb diet as an alternative therapy. I have asked people in the medical community why diet isn't addressed as an alternative to medications they tell me it's because patients cannot be compliant. I have just started investigating Crohn's but I am having a hard time believing that some sort of proper diet wouldn't positively affect your condition. Just saying.
It's wonderful that changes to your diet helped you, but you also must remember that while you have autoimmune issues, you do not have Crohn's, which extensively affects the whole GI tract. Like afidz says, diet is not enough. If diet alone was sufficient treatment, we wouldn't need medications. Most people have considered diet changes -- if not have been forced into them because of the nature of our illnesses -- already. Thank you for your input, though.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!

Last edited by theOcean; 05-23-2014 at 01:53 AM.
05-22-2017, 10:48 AM   #18
IrishDoll01
 
Join Date: May 2017
OK not sure if anyone is reading this forum about Thrive and Crohns Disease. I have only been taking it for less than a week. I have been having more diarrheaha and vomiting than not taking this stuff. Its like a flare up, which I haven't had in almost a year. Until now.
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