FlyByEye
Unregistered User
(10/20/03 9:34 am) Reply
IBD Crohn's
I am the father of a 12 yr old who was recently diagnosed with Crohn's disease. As any parent hopefully would I have dedicated a great deal of time in researching anything that will help with the rest of his life, and health. I am very much against long term drugs due to the side effects, especially steroids and immunosuppressives, especially in children.
What I have found, based on "real" science and clinical testing is whats called "Probiotics" and the benefits of Omega 3, 6, and 9 fatty acids. I strongly recommend that all sufferes of IBD do some research on these topics, before purchasing any high priced "miracle cure". All research I have done very clearly indicates the positive benefits of the proper balance of "good" bacteria and enzymes critical to the digestive process. We all know, including M.D.s, D.O.s, nutritionists, and scientists, the awsome benefits to your body of ingestion of Omega-3 acids (Fish Oil, Flax Oil, ect.) and Probiotics, (L-Acidopholus, L-Bulgaricus, B-Bifidum, ect.) in addition to a healthy, nutritional diet.
Several things also come into play that must be considered, and I do not believe there is any one method or silver bullet pill that will compensate entirely.
Because IBD disallows proper absorbtion of critical nutrients, anyone with IBD must look at B-12, calcium, and iron supplements beyond a mutlivitamin daily, and unfortunately an increase in caloric cunsumption of 20-25% (due to malabsorbtion).
As far as inflammation goes, adjustments in diet are neccessary. Create a food chart listing all foods eaten daily, also create a chart for your BM's listing how often, color, density ect. You will notice from what you eat, how you feel shortly thereafter (pain, gas) and how you go (blood, diar., constip, etc) what foods work and which do not. Too many people take it on blind faith that they are lactose intolerant, gluten intolerant, ect. and immediately remove them from there diet. The nature of IBD makes this nutritionally dangerous. You should chart your own food do' and don'ts. Test foods in a variety of combinations before simply removing one from your diet entirely. Everyone is different, and there is no one diet that I have found that works for everyone. Gotchalls diet seems to have merit, but...is almost impossible to follow as rigorously as advised. Again if it works great, but I believe in mild to medium cases it is overboard. Personal testing and recording of your personal results is the ONLY sure way to know for sure.
There is also what is called whole foods you should move towards. Predigested plant, vegatable powdered foods, "Primal Defense", "Omega-Zyme", and "Perfect Food" with "HSO's (Homeostatic soil orginisms) have done very well for us, alas they too are expensive, but you can buy similar probiotics for less without the HSO's.
They MD who developed them has a story all with IBD should become familiar with, even if you dont buy the products, it is founded in a great deal of solid research and clinical trials, and follows the "Intestinal Flora" concept of which I am a HUGE proponent. The book is called "Patient Heal Thyself" by Jordan S. Rubin N.M.D, C.N.C.
I could ramble on for days with the research I have done, but I will say that the most relief we have found from Crohn's has come from that general direction (Probiotics, Omega acids, and whole foods). Sorry for the length, but at least I hope it gives you a direction for research.
Lastly, Inflammation. It is suggested that prostiglandins ave a direct relationship with inflammation, and your immune system, I don't have the research at hand, so I may not be totally precise, but, there are PG-1, PG-2 and PG-3 that you body makes that have an effect on the mucus secretions of your gut. Certain foods force your body to make PG-2 (bad) instead of PG-3(good) and this is were Omega-3 fatty acids come into play. If interested in these topics a couple of outstanding books founded in solid research are: The New Eating Right for a Bad Gut : The Complete Nutritional Guide to Ileitis, Colitis, Crohn's Disease, and Inflammatory Bowel Disease
by James Scala, and Probiotics: Nature''s Internal Healers by Trenev, Natasha.
Good luck, and good health, and I hope this helps you folks.
Fly
Rasputin
Unregistered User
(10/20/03 9:18 pm) Reply
AMP not a cure
First off, everybody needs to know there is no "cure" for Crohns. I've been suffering from crohns for over a year now, and have been on every medication possible. I'd like to clear a few things up, from my personal experiances and from my research
1. There is no cure for crohns WHAT SO EVER.
2. AMP is not AKA aloe vera it is an isolated polysaccharide that comes from the aloe vera plant
3. a Diet will not help cure this disease, infact it won't even help it get back into remission. A diet will help keep the symptoms under control, but has been proven to have no effect on the disease itself.
4. For all you say AMP made them worse, you might be allergic to soy if you have taken the pills
5. I agree with flybyeye. Omega essential acids (essential meaning not produced by your body) are the most important thing you can take. I have done no research into probiotics, so i can not comment on that. I have looked at the website containing primal defense, and i do not find the MDs statments liable.
6. flybyeye is also correct about multi-vitamins. IBD victims suffer malnutrition, therefore they should be taking upwards of 150% of the FDA recommened intake for a vitamin.
I have taken AMP, and can say i have drastically improved. I am not following the diet becuase I do not believe a diet will aid in the restoration of my digestive system. Last time when I was tapered off a high amount of prednisone I flared up, but now being on AMP i am doing fine. All I suffer form now is cramps, gas, and fatigue, which for me is an improvment. I am satisfies with AMP and will continue to take it for the duration that my disease is not in remission.
E-mail: Rasputin187@comcast.net
FlyByEye
Unregistered User
(10/21/03 8:09 am) Reply
No Cure
Rasputin is absolutely correct in his statement "There is NO cure" for Crohn's........YET. (a little hope never hurt!) All IBD sufferers need to understand that clearly, and be very skeptical of anyone or anything claiming to "cure", especially high priced supplements. Always be a smart consumer and compare research, ingredients, amounts, processing methods, and price. Generic versions sometimes equal the higher priced versions. Again do your homework, and be skeptical of wild claims and testamonials not backed by solid, verifiable, scientific research by acredited professionals and researchers.
Everyone is different. The specific location of the disease in the small intestine will have an effect on what you absorb, and because of that, what you may lack and need to supplement. Different parts absorb different things. Trial and error, and the location of the IBD/Crohn's/Illeitis will clearly determine what works for you (as in my recom. to create a food/BM diary) but there are many products that work for some and not others. There is good evidence that Aloe Mucilaginous Polysaccarides (AMP) can help with symptoms of Crohn's, along with Probiotics, Omega-3's and whole foods (along with about 30 other diseases) but, as with anything, personal testing with your Doc's knowledge and approval is the only sure way to know if it works for you. Make sure you document it. Data and your reaction will be the ONLY way I assure you. It is also a supplement not regulated by the FDA, as are Probiotics, Omega's, Multi-Vit's, and whole foods, and are not intended to supplant medicines permanantly. They are intended to help with symptoms and encourage longer remmisions by helping your body deal with food and your intestinal flora. If you dont try you will never know, but please understand, none will work if you are not addressing the whole package so to speak. What I mean is you cannot simply take a supplement and expect it to help if your diet and lifestyle are pizza, burgers and beer, 4 hours of sleep, and a stressful lifestyle. You have to make a whole life change, putting as many good things in, and very little, if any, bad things, based on the location of your IBD, MD recomm's, blood tests, medications you are on, diet, research, your diary and reactions, etc.
I do agree that no diet will cure, but there is no doubt whatsoever, listening to folks with IBD that flare ups WILL occur if they eat certain things. There is also direct unrefutable evidence that Elemental (liquid tube feeding of predigested easily absorbable foods) diets will help a person back into remission quickly. You give your gut a rest so to speak. Diet (including mentioned supplements) in my opinion is foremost in maintaining remmission and controlling flare ups, and is what we have had the most dramatic successes with. There is a ton of undigestable fiber if eaten can actually scrape the intestinal walls and cause bleeding (sometimes just by touching) and many foods that are irritants to the gut. Eat a Jalepeno pepper, and tell me if when it comes out, you don't get the same feeling you had in your mouth at the other end. Look at Corn go in, and look at it when it comes out. So I do believe that diet is essential to prolonged remmission, and can greatly help with symtpoms. Again do your homework, gather as much data as you can, then test, test, test, soon you will be able to make educated decisions for yourself, your own testamonial so to speak.
The only thing I need to add to Ras's comments about multi-vitamins, is be sure to check with your doctor BEFORE taking 150% of ALL multi-vitamin RDA.
Water soluble vitamin supplements for the most part will be absorbed as needed, and the excess will pass in your stool/urine, such as B complexes and D. You MUST be very careful with Vitimans A, E and non-water soluble, sometimes also called anti-oxidant type vitamins. These kind of vitamins DO NOT pass through your system and are actually stored in your fat cells. An overdose of these can create a toxic build up in your body and become life threatening.
PLEASE, PLEASE, PLEASE do your research, and check with your doctor before adding large quantities of non-soluble vitamins. Some can certainly be harmful, not the desired effect.
Rasputin, if you have not yet, I highly recommend that you look into Probiotics. It has a direct relationship to the way your gut processes foods, and maintains the proper balance between "Good" bacteria/enzymes, and "Bad" ones, and the mucous your gut secretes to protect it from "bad" bacteria (absorbtion again, to much mucous, less absorbtion). Most health food stores will carry a probiotic supplement containing several strains of bacteria such as L. Acidopholous, L. Bugaricus, and B. Bifidum to name a few (I personnally think the most important ones) Everyone has heard the benefits of natural or homemade yogurts, and every IBD book on the planet recommends it. Basically that has L. Acidopholous "active" or "live" bacteria in it. Probiotics. Pro-"Good" Biotics-"Bacteria" to put it simply. The book I mentioned in last post I believe to be a good one, get it at Amazon.com used for less than 10 bucks, and or look around the net for highly recommended supplements. All probiotic supplements are not the same, you want one with at least 1 billion active units of culture, "active" being the key word. I have also found the refrigerated powdered types seem to be the best. They need to be fresh and active (live) to be of any use, and clearly can benefit your digestive system in a big way.
Hope it helps.
Fly
P.S. Sheesh, I told you I could go on for days....sorry all.
Molocure and Aloe Vera
It is hard to believe that readily nature substance can cure Crohns and the medical community knows nothing about it. If aloe vera or Molocure would do the trick every doctor in the country would be pointing their patients in that direction. In a three week period of time, I can go from the hospital to no medications. Crohns is not an exact science and has no rhyme or reason as to duration or intensity. Without a blind study with a large group its impossible to tell if remission is due to aloe vera or Molocure or a nature progression of the disorder. For me attacks last anywhere from one to three months. The only thing that has shortened it is Remicade and Prednisone. So, without good scientific data, save your money and follow your doctor's advice; if you don't like the advice, change doctors.
AMP
Most of the postings forget to mention that AMP
supposedly cures not only UC but also the entire
gamut of 'autoimmune diseases'--as claimed by
Molocure. Surely this is too far fetched to believe...
Also, given the diverse causes for people coming down
with UC and/or IBD, one would expect AMP works with
differing efficacy for each person having IBD.
Chrons disease
My 12 year old also was just diagnosed with crohns and is and has been place on a number of meds, are you using the probiotics and omegas in place of the meds or in addition too????
Molocure
I have been using Molocure for the last 3 months for acid reflux esophagitis. I had been on Nexium 3x/day plus Pepcid 2x/day and sleeping sitting up for 9 months with no relief from my symptoms. I took Molocure religiously as directed for 2 months and felt absolutely no difference until the end of the 2nd month. After taking it for 2 months +, I started to feel almost back to normal all of a sudden. I have been feeling so much better that I weaned myself off all of my medication. I am still in the "overkill" stage but that will end in another couple of weeks. I have had no other changes in medication or diet that could explain the sudden change in my symptoms. I tried it since nothing else was working and for me it was a life saver! Good luck!
MOLO-CURE (Not working)
Please be advised that I tried this product and followed the instructions and it did not cure anything that I had related to any of the bowel problems that the company list in their handouts that go with the product.
I think that it is interesting that a company with a product that has as many handouts, info sheets, and exposure with all sorts of questionable research, could not admit that the product may not work for everyone. When one looks at research, a person in the medical community would go to a medical journal to find what the research says about a product.
I could not find any US medical Journal with any recent solid research on this product. Nor could I find any doctor who reviews products in any of the literature who would say that this product is for any specific bowel conditions, in another words " it does this for this condition and was proven in X amount of cases to work."
I am not saying it does not work in specific cases with very clear controls and administration but to say it works for the list of conditions that are quoted that it cures is nonsense.
The other issue is not giving money back to a person who has purchased the product and finds it fails to help or cure them.
I purchased the product in good faith, knowing that everything that comes from your doctor will not work you would expect a refund if it does not work or some sort of credit. The company does not allow for refunds or at least they did not when I purchased the product.
I feel that there are probably other products that will help persons with bowel problems but they ar specific in nature to the actual cause of the problem the person has. As noted in the previous comments there are some success stories so I would not tell you not to try the product.
All the best in your quest for health.
Blane RN PhD
Mears11 Registered User
Posts: 1
(11/23/03 7:41 pm) Reply
Primal defense
I have been taking Primal defense for over a year now. The price has come down to about $31 per bottle and I wouldn't live without it. I suffer from UC and have now for some 5 years or so. This is the first product to help me substantially. I was in a 1 year remission and then had to take anti-biotics for a sinus infection and now I am looking at a mild flare up. Things are not nearly as bad as they once were and I am thankful that I can replenish my body with probiotics once my antibiotic treatment is finished. I believe in this product along with a healthy diet to support the immune system.
I've been using product for about 4 months. Been taking 15 capsules (5 capsules 3x/day). I find them helpful. No more diarrhea or bleeding. One stubborn symptom that nothing has helped, including the molocure, is I still have urgency in the morning. If anyone has any suggestions for that, I'm open.
bigbelly
Unregistered User
(12/4/03 7:48 pm) Reply
Ulcerative colitis - AMP
Rasputin - You've only been diagnosed for a year but you're an expert? It has not been "Proven" that diet doesn't work - there are no clinical studies for obvious reasons. But there's plenty of anecdotal information that supports diet modification - from individuals who arent' trying to sell an expensive supplement. Diet DOES help - SCD works and they aren't selling anything but the book, which is also widely available at libraries and used book stores.
molo-cure
This product is completely bogus; I ordered it, it is a complete waste of money and time. Most of the capsule is lechethin, while only a small portion is acutally aloe vera. Most of the users simply comment on "flare up" this, or "IBS" with the added words of "stick to the diet". Honestly, you're better off with prednisone and pentasa. Though I have discovered two REAL natural healing herbs: Calendula and Yarrow. More later..
Special diet?
I've just been reading all the comments about Molo-cure and I have a question. What is this diet everyone is talking about? The website does not mention any special diet. It only talks about the pills. I just ordered some and now I'm wondering if I made a mistake. Any comments would be greatly appreciated.
ewillian
Unregistered User
(12/14/03 12:23 pm) Reply
crohns treatment
Christmas miracles, they do exist!!!! My 12 yr old daughter was diagnosed with crohns approx. 5months ago following a year of visits to the doctor. Her enterologist placed her on methsalasine and flagacile with no improvement ( still nine or more bowl movements a day and severe abdominal pain ). The enterologist stated that this is what he was afraid of and stated that she had severe crohns and recommended prednisone and azacol ( sorry if my spelling is off ).
I was in tears when i heard this as I could picture the long term out come of multiple surgeries and the damage from the drugs. A patient of mine upon hearing this referred me to a colleague who is a professor at the medical school in our state who was offering an alternative treatment for crohns. I spoke to this doctor for a half hour on the phone and then set up a consultation with him. we were extremely exited after talking to the doctor and decided to try his approach; then the bad news. He told us he would not consider treating my daughter without the permission of her enterologist. A big disappointment as I did not believe that her enterologist would agree.
I immediately began to look at the possibility of taking her to Canada and getting he drugs through a doctor their or going to Mexico as the drug is available
without a prescription down their I believe. But everything came together and her enterologist consented. Now for the good news three weeks into treatment my daughter is pain free!!!!!!!, diarrhea is gone and shes down to one bowel movement a day that is starting to develop some form. The only drugs that my daughter is on is 50mgs of wellbutrin 2x day and flagacil 1x day, we will be discontinuing the flagacil in a few weeks and my daughter will then take 1 150 mg wellbutrin per day. Wellbutin is a mild antidepressant with no known long term side effect after 50 years of use. The only side effect my daughter has experienced is shakiness as we have titrated up on the drug which last 1-2 days. The drug is also safe to use during pregnancy. The clinical research started around 1988. The doctor has said that he has not seen a relapse in any patient who has stayed on the meds, after the disease has been under control for a period of time the meds are cut back to 50 mgs. If anyone would like the research on this I will give you my email . I am selling nothing!!! and only want share the information that can help with this horrible disease. I would love to see my daughter off all meds but if the choice is wellbutrin or the other meds Ill take wellbutrin any day. If any one would like to contact me email me at williancrp@yahoo.com
Good luck and merry Christmas!
Colorado Girl
Unregistered User
(1/3/04 12:50 pm) Reply
Molo-Cure
I just found this forum and thought I'd participate. I was diagnosed with UC/Crohn's 2 years ago. I was recently in remission taking Asacol however, went off of it for about 2 weeks while waiting for new prescriptions from Canada since they're less expensive. I had an immediately relapse that has been worse than ever. Out of desperation, I got online to do more research and found the Molo-Cure site. It does sound too good to be true, but I ordered it anyway. Like many others have said, if it works, then the price isn't high. The site does explain that 9 out of 10 have improvements, so the company does admit that not everyone has positive results. However, how many people have tried so many other "remedies", inluding the almight prescription drug, and still have not found relief? Every body is different because it is such a complex machine and we are not a "one size fits all" creature. Yes, the "positive" testimonials may be set up, but there IS a 50% chance they are not. By the way, has anyone called the Southeast Branch of the Ft. Lauderdale BBB?
neverquit
Unregistered User
(1/6/04 6:47 am) Reply
molocure
I just started using the molo cure, my doctor wants me to start Remicade, but I'm not big on "side effects".
I found the diet and information from molo cure very helpful. I will keep you updated, I wish someone out there had more information on molo cure also.
Molocure
The special diet that molocure puts you on is not a very strict diet. All it says is to take foods which are easy to digest (steamed rice, vegetables, eggs, chicken soup etc), and stay away from foods like fatty and greasy items which will cause stomach upsets. By following this diet the body will be better able to absorb A.M.P. and all other nutrients which will accelerate the healing process.
I've just started using it today. All their instructions are comprehensive and meaningful and I' am gonna follow it word by word. I will keep you posted about my progress.
Email This To a Friend
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies