10 Years Later...A Possible Cure for My Crohn's

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RichardO

RichardO

Joined
Jul 19, 2009
Messages
18
Gooday,
I wanted to post this for all who are concerned with Crohn's disease and ulcerative colitis chronic conditions.

I was diagnosed by a Kaiser physician in Marin County, CA with having a minor case of Crohn's disease back in 1998. I was 43 then. The ulcerated area was in the descending colon just below the transverse and was about 10 cm (4 inches) in length with corresponding damage to the circumference.

The doctor seemed to take some type of personal glee when he told me in a closed door session after the colonoscopy (which I was semi awake enough to view on a monitor as he exclaimed excitedly to a "fellow" intern "There it is! when the scope hit the affected area) that I would have this for the rest of my life and that there was "no cure". I was offended by his lack of hope and did not believe him. In fact I was not deflated but challenged.

I had been having sleep problems which I ultimately found were strongly related to the overactivity of my immune system responding to the Chrohn's. Also, I learned, that when the immune system triggers the heart to beat more, especially when asleep, that triggers the kidneys to over function causing one to wake up from sleep and urinate, usually in the middle of the night.


This was the last thing that I needed as I work in sales and my sleep is priceless. Once I started losing sleep and being unable to get back to sleep once I had awoken i started taking over the counter sleep aids. Seeing that this was a "slippery slope' I contacted my HMO, Kaiser, whose physicians were trying to pin 'psychological problems ( I had broken up with a girlfriend) as the culprit for the lack of sleep. Ten weeks later and out of group counseling, I was still not sleeping.

Fast forward to 2005 where a Kaiser physician again administered another colonoscopy. The Crohn's was still evident and by this time I had learned more about controllng my diet. My sleep could still be poor especially with the advent of higher caffeine intake. (As a salesperson coffee was really important and I needed to find substitutes to give me the extra energy). Red Bulls as well as any cola were poor choices.

By May of this year, through many personal stressed in my life I had started drinking caffeinated drinks once again in high volumve. My colon started bleeding copiously. This went unabated for over a month before I went to the VA clinic (I'm a US Navy Veteran) in San Diego.

The backlog for another colonoscopy, which was advised by my assigned primary physician, was at least a month. Having my sleep now very much impaired and bleeding bright red blood, I decided to be much more proactive with my approach.

I had read that the polysaccharides of aloe vera were very good for Crohn's and Ulcerative Colliits conditions. I decided to "megadose" to see if I could get any positive results prior the colonoscopy at the VA facility in San Diego, CA.

I purchased 16 ounce bottles of aloe vera juice from different brands (they all tasted anywhere from bitter to tolerable) and drank a bottle a day! The recommended dose on the bottle was a couple of ounces per day.

I did this for 14 days straight and it cost me $140 at approximately $7 a day.

My bleeding stopped completely after the fifth day. Things started to normalize.
I just had the colonoscopy completed last Thursday and the doctor FOUND NO TRACE OF TH THE CROHN'S DISEASE- no scarred tissue; no bleeding! I am still awaiting the biopsy results as the physician said that it would show Crohn-like tissue which could be more deeply imbeded in the colon walls.

Sincerely,

Richasd Orloff
San Diego, CA
 
interesting. What did your doctor say about this? keep us posted about the results when your doc gets back to you.
 
Aloe Vera Dosage - 1 Litre/day 14 Days

I'm not good with numbers and I am making a correction in reference to my previous email on the dosage of Aloe Vera Juice that had such a strong amelioration of my Crohn's condition.

Each bottle that I drank per day contained 32 oz or 1 full litre (not 16 ounces). The corresponding cost, while taxed as a "supplement" and not a food, was approx. $8/day. The total costs for the two weeks came to approximately $112.

Natures' Way had the overall best tasting juice, especially the one which was pomergranate. The most cost effective by far (cost vs. quantity) was from Trader Joes' but the taste was hard to swallow. I had to add some sweeteners to get it down and even then had to wince. Drinking this stuff is just a hair short of drinking medicine.

I'll have the tests from the biopsies back by week's end.

RO
 
ALOE VERA KICKS ASS Biopsies back

Good day,

I just got off the phone with the gastrointestinal lab at the VA in San Diego with reports from my colonoscopic biopsies.

The following are the results:

** No evidence of coliitis or Crohns in the small intestine or bowel
** All tissues Non Cancerous
** Small non bleeding hemmorhoids

What this means, per my original posting, is that through MEGADOSING OF ALOE VERA of 32 Fluid Ounces per day (1 Litre) for 14 days. I somehow ERRADICATED THE CROHNS/UC CONDITION WHICH WAS LONGSTANDING IN MY LOWER DIGESTIVE TRACT FOR OVER 10 YEARS.

For those of you reading this, HOW CAN THIS HURT FOR YOU TO TRY THIS AS WELL?
REMEMBER- Caffeine in the forms of coffee, colas, and others will WORK AGAINST YOUR HEALING.

YOUR MONETARY INVESTMENT IS LITTLE MORE THAN $100 (Don't know how much that is in pounds).

Postnote: I have a friend in Hawaii whose mother in law is 63 and just had surgery to remove a large portion of her colon because of Crohns. I have been in conversation with him about her condition as she was "near death' according to him.

She was a copious drinker of Coca Cola and Coffee! She could not give these up! She worked as a conceirge at a hotel on one of the islands so she was on her feet alot and needed the energy.

She has agreed to start taking the aloe vera and my friend says that as of yesterday she is feeling a lot better post operation.

THIS ONE IS A NO BRAINER IF YOU REALLY WANT TO HELP YOURSELVES.
 
Since Aleo Vera has both healing and antibacterial properties, I can see where it could remove or inhibit the bacteria that I believe cause Crohn's symptoms, as well as heal some superficial damage.

I personally used Miracle Mineral Supplement (Chlorine Dioxide) to provide a similar effect.

Colloidal Silver has also been used with some of the same reported results.

All of the above would require a certian dosage and a schedule of use that is usually unknown. Personal experimentation is going to be needed to determine this.

Of course all of the reports, including mine are anecdotal in nature. I think the Aleo Vera method could easily be tested without to much worry about side effects, but anyone using any of these methods should do some research first concerning any possible side effects or other potential problems.

Dan
 
Fantastic! I have been drinking small amounts of Aloe Vera for the past couple of months and it definitely reduced my bleeding. I've been wondering what would happen if I drank a bunch of it. I'll give it a try! Thanks for sharing your experience.

By the way, are you still drinking the aloe vera? How much per day?
 
Good day,

I am still drinking the aloe vera to the tune of about 1 litre per week. It's a sharp drop from the 1 litre per day which produced the amazing results.

I've already told this news to at least two friends who, in turn, have either relatives or other friends who have been diagnosed with Crohns.

I am anxious to hear their results if they are willing to replicate what I did. I had no side affects. I will take great amounts of satisfaction if others will get the same positive results that I got. "Nothing ventured nothing gained"
 
Megadosing Aloe Vera Juice- Note

Hello,

As I've read more and more personal vignettes about struggles that individuals are having with their Crohns and ulcrerative bowel conditions it is very apparent that most everyone is talking about the prescription medications that have not been working. Stories and doses are exchanged.

What I did for myself fell outside the lines of traditional medical input. If you are going to emulate what I did then it is best to speak to a physician first. My guess is that the physician will either a) talk you out of it and tell you to continue on the "latest prescription" to "give it more time b) tell you to wait until you've exhausted all medical applications (more pharaceuticals) before moving forward c) tell you that you can take aloe vera, however, in dosages which are small and cautionary.

It is best to find out if there may be potential conflicts with other medications. I am not on ANY pharmaceuticals.

I am not a physician and most everyone that I know, including my mother, have such "blind faith" in physicians that they cannot go any further than what doctors" say.

My mother has severe osteoporosis and rheumatiod arthritis. She has a wonderful osteopath MD who is treating her. Yet I went online and found at least two other supplements (through much online research) for her to take which could be purchased at the local "Whole Foods Market" I printed out the information and faxed it to the Osteopath who upon reading it, agreed that it would benefit my 81 year old mother. She gave her blessings. My mother is now benefiting from more energy and less pain.

There is also an herbal supplement for arthritic pain which I gave to my mother, who is now more trusting of me in that I am workng WITH her MD, which got rid of her arthritic pain in her hands ( in 2 days) to the point where she no longer uses pharmaceutical drugs to allay the pain.
 
I use the best of all worlds. I use one prescription medication, that is the only option to correct my immune system dysfunction. I would not even hesitate to take it if I was perfectly healthy.

I use a few supplements that I would take whether I had Crohn's or not.

I use two different alternative treatments that directly target bacteria. One I know works. The other I am still experimenting with to see if it will kill specific bacteria. This is primarily for my wife's Lyme Disease.

My family's sudden rash of disease has had the effect of forcing me to find out what is for real, and what is wishful thinking.

I have been very surprised at how well some of these have worked. I no longer automatically rule out unfamiliar or alternative treatments as I once would have.

Dan
 
D Bergy said:
I use two different alternative treatments that directly target bacteria. One I know works.
Dan
Click to expand...

Is the one that you know works is that for Crohns if I may ask? If so, may I ask what it is?

Thanks Dave...
 
I used acidified Chlorine Dioxide. The product has the crappy name of Miracle Mineral Supplement.

What it does is kills acidic bacteria in the body. I took it for six weeks to get rid of my post surgical nagging Crohn's flare. I tried several other methods, but they just would not resolve the problem.

This is not an approved treatment, and it probably has some risks, but I have not yet heard of anyone who has been harmed by it, and thousands of people have used it already.

Read up on it, and see if it is something that you are comfortable with.

I have used it many times, and took some last night, just because it has improved my gum's so much. The Dental Hygienist mentioned the improvement after the first time I used it.

I know of two other people with Crohn's who have improved considerably using the same method. That is not a huge sample size, but we have to start somewhere.

The Aloe Vera method sounds even less risky, but we need many angles to attack this disease from.

Dan
 
I ordered the MMS for my husband and should have it by Monday. Can't wait to try it out. He has been living in constant flare for the last 5 years. He has been on EVERY med (except LDN - which the Dr. says won't work....MD's can be frustrating!). He even tried hookworms, which worked for about 2 months. They mysteriously died off (we think due to a routine tetanus shot) and he began to get his Crohn's symptoms back. He re-infected, but the side effects were so severe (constant vomiting for 3 weeks) that he ended up in the ER and they killed them off. I think he got too many worms at once (25) which gave him a very severe reaction. He does not want to go through that again, so now to the scariest option ever - Tysabri. He is starting next week. I will get him the Aloe Juice tomorrow and see if that helps. Anything to not do the Tysabri!
Thanks for posting.
 
I would suspect the Tetanus shot re-inflammed his body. Vaccinations have adjuvants that are designed to do that specifically to activate a strong immune response.

Go slow with the MMS. It will provoke more loose stool in the beginning as bacterial die off occurs. After that, you should return to a normal state, if it works as it did for most people.

Dan
 
Richard O - you mention you are in sales - are you a salesman for Aloe Vera by chance?

Glad this works for you, but you must know that every case of Crohn's is individualized and just because Aloe Vera in megadoses works for you, it may not for the next person.

I was diagnosed at age 19, had a couple of surgeries, have taken Pentasa which helped me for several years...now taking Entocort - a steroid only absorbed by the gut so absolutely NO systemic side effects such that Prednisone would give most people.

Currently I feel normal, have loads of energy, and feel the best I ever have since 1986.
 
Hello Paula Jean,
In response to your question as to what I sell the answer is mortgages. The market is picking up here in California as foreclosure sales are moving more people to jump in and buy. I hope the same is happening in Europe and other parts of the country.

I have a close friend who also did very well on Pentasa. He urged me to try it. I did not.

As I've studied naturapathic medicine and diet moreso over the past 15-20 years I am strongly in favor, for my own progress, in alternating my eating patterns and making adjustments to supplements which I research. I never liked "side effects" from drugs. I realize that there are many drugs which have no or lesser side effects like you pointed out.

Certainly there are many indeed who benefit from taking pharmaceutical drugs. Yet most of the postings on this website are from people who have NOT benefited from these. They are upset and reaching out.

If you read more of these postings regarding aloe vera juice and the polysaccharides which are a major component, there is not one person who has not benefited. I suggested on an earlier posting that anyone who ''megadosed" contact their primary care physicians first. I had enough confidence in my own research (I've "megadosed" other supplements in my past with very good results for other maladies) to proceed and I was not on any doctor prescribed drugs to counteract and cause potential problems.

Everyone does come to the table with differing body chemistries and and histories of problems. However, from what I've read, and indeed in my own case as well, there are some basic "rules of the body" which we all have in common that we've abused in order to continue into the downward cycle of accellerated Crohns and other digestive problems over time. Most of these have to do with diet and taking in foods which are actually making the problems worse because of the poor eating habits, stress, and compromising drugs that we had taken earlier in our lives such as broad spectrum anti biotics.

I have two friends who are passing my information onto loved ones who are going to try, at least in part, my program for aloe vera increase in their diets. One, who just went through colon surgery, is already reporting benefits. I would like to hear that people on this site are doing what I did and are feeling better. It is their loss if they do not want to try something different than what their physicians are telling them.

I am on this site to strictly tell people what happened to me. It was sort of a "miracle". I am proud of what I did for myself. I am happy to share this information. All evidence points to this process as being a "winner". I am just sharing my success.
 
Hello,
I was perusing this site again and found another sufferer (ex sufferer now) who extols the same philosophy about diet and GOT RESULTS!!! Below is an excerpt from Alex036 and how she CURED HER CROHNS WITH THE SCD DIET!! Notice that she said CURED?

I copied and pasted her text below. She is saying the SAME THINGS that I have said in previous text. The only difference is that I added the Aloe Vera Juice. The combination to eradicate bowel and digestive disorders is EXTREMELY POWERFUL.

Too many on this site are blindly listening to their physicians and trading pharmaceutical drugs and dosages and "waiting" for pain relief. This woman was PROACTIVE. SHE RESEARCHED. SHE WAS DISCIPLINED WITH HER DIET.

Read her posting. THIS IS THE TRUE CURE. I added the Aloe Vera which doubles the healing effect.


"About a week after my surgery in Sept 2007, I totally committed myself to following the SCD diet to the absolute letter without any exceptions. I read that for this diet to work, you have to follow it 100% without any exceptions. If you just pick and choose parts of the diet to follow and you don’t commit to it 100%, then you are just wasting your time, and it probably will not work for you. Therefore, I decided to make a complete life style change to see if this diet would really work for me and put my crohns in remission.

First thing I did was to buy a yogurt maker and start making all my own yogurt. One of the main theories of the SCD diet is that you are trying to starve out the bad bacteria and yeast in your gut by depriving them of the sugars they feed on. You do this by eliminating the carbs and processed foods. You also want to repopulate your gut with good bacteria which you do by eating natural home made yogurt.

In order to starve out the bad bacteria, I eliminated all milk and diary products from my diet, as well all pasta, bread, whole grains, rice, potatoes, flour, sugar, and any foods that contained chemicals or sugar.. I also eliminated all processed foods like sandwich meats, hotdogs, and all soda, etc. I stopped going out to eat at fast food restaurants and also stopped eating pizza. I started baking all my own cakes, cookies, pizza and bread using such ingredients as almond flour, honey and farmer’s cheese. When I did go to a restaurant, I made sure I went to a restaurant where I could get broiled fish. "
 
RichardO said:
In order to starve out the bad bacteria, I eliminated all milk and diary products from my diet, as well all pasta, bread, whole grains, rice, potatoes, flour, sugar, and any foods that contained chemicals or sugar.. I also eliminated all processed foods like sandwich meats, hotdogs, and all soda, etc. I stopped going out to eat at fast food restaurants and also stopped eating pizza. I started baking all my own cakes, cookies, pizza and bread using such ingredients as almond flour, honey and farmer’s cheese. When I did go to a restaurant, I made sure I went to a restaurant where I could get broiled fish. "
Click to expand...

Well, there went MY whole diet :ylol2:
 
interesting story RicardO, glad you've found something that's worked for you.

btw, this little part you mentioned in your original post:

I had been having sleep problems which I ultimately found were strongly related to the overactivity of my immune system responding to the Chrohn's. Also, I learned, that when the immune system triggers the heart to beat more, especially when asleep, that triggers the kidneys to over function causing one to wake up from sleep and urinate, usually in the middle of the night.
Click to expand...


thank you, this makes sense and now i realize why i wake up so often to pee. also, i notice i experience anxiety like symptoms such as abruptly waking up with a racing heart... very interesting.
 
Waking Up to go to the Bathroom

Hi Cheeky,

Thanks for your response in reference to waking up to go to the bathroom and how it is tied into the Crohns Syndrome. Once I was able to make this connection, it allowed me more resolve to watch what I was eating that would aggravate the Crohns and ultimately cause me to awaken to go to the bathroom through overactive kidney function. I truly despise waking up in the middle of the night unable to return to sleep. I really, really hate it. The waking up in the middle of the night, incidentally, is why Michael Jackson overdosed on the Propapol.

I felt that this was important information to share and I am glad that you gleaned something from it. Incidentally, my ex girlfriend, who is a diabetic educator and counselor, turned me onto the heart rate and kidney connection.
 
I tried the scd diet, i did it to the letter and had no inprovements i actually got worse. I found stress plays a big part in my flare ups, and following the scd diet was to much for me. soon as i started eating normally i felt better.

I'm now trying aloe vera for the last 4 months plus reishi mushroom i take 30ml twice a day. Hard to say if it's doing any thing i still feel crap every day and have pain, but i haven't had to take as much of my prescipstion pain killers which is really good. Maybe 5 times in the last 4months or so
 
Possibly different bacteria involved with your case. That is what makes this disease tough to control, as there probably not identical pathogens causing symptoms.

I hope the Aloe Vera works for you. If it does not you can try the big guns of Miracle Mineral Supplement. The active ingredient Chlorine Dioxide will kill any acidic bacteria in your body. It works for me, when ever I get hint of symptoms.

The LDN I take does not work 100%, so I rely of more direct methods to help it out occasionally.
 
Hi

I'm new to this forum, though not new to crohns. Anyway, when I was reading through some posts, I saw this one, and decided to try it. Only started yesterday, so its still early days. It's a little more expensive in Australia - $24 per liter of aloe vera juice. But I figure its only for 2 weeks. I'm hoping it will fix the tightness that's always in my lower abdomen, which is crohns related, and the fatigue. I'm on azathioprine 100mg a day, and things are under control now (fatigue and abdominal tightness aside), though it was probiotics (lactobacillus plantarum), digestive enzymes, and new zealand green lipped mussel that got me there, not the azathioprine. Doc was going to put me on remicade before I started taking the above 3 in significant enough quantities to stop the flare ups. (I didn't really want to go there with remicade).

On a practical level, I found the aloe doesn't taste too bad, though I try to drink it all at once without taking a breath in between :) And I put manuka honey and lots of lime juice in it, and as long as I get rid of the slightly strange taste in my mouth afterwards (a cigarette and water will do the trick, though I imagine water alone will for those that thus prefer :) ), all is well.

Just been reading about the MAP theory. Interesting. Has anyone had any experience with it? It seems to make sense, though that site that was set up to provide info about it doesn't look like it has had too much stuff added to it recently.

Nice to meet you all anyway! I probably ought to say hi in the intro section :) I kind of rolled two posts into one, but I found the aloe thing intriguing, and worth a try.

Rebecca
 
I'm glad to hear about your personal success with dealing with the symptoms. But controlling their symptoms and curing an autoimmune disease are bit different are they not? I am hoping that eliminating most of the Omega six food sources from my diet and supplementing with Omega 3 is going to remove or reduce my symptoms, but I would not conceder myself Cured. Maybe cured of the symptoms, but not cured of the susceptibility of the autoimmune response. Nobody would ever claim to cure my allergies or my asthma either. But they have both been controlled to the point of reducing or eliminating symptoms.
 
To me, a cure would mean I no longer would need to treat the disease in any way.

I feel my treatment is as near a cure as I can get at this time, but until it is possible to correct a weak/faulty immune response, without medication, I cannot use the word "cure" as i define it.

Dan
 
Post the aloe vera success, I've also been taking psyllium husk and probiotics which hve also been excellent in getting rid of other stresses in the upper digestive system.
 
i do believe your sleeping problems are due to potassium deficiency and calcium malabsorption or deficiency.

1000 mg rda calcium

4700 mg of potassium
 
What are your thoughts about aloe vera being a laxative? And, especially in larger doses, would the laxative effect be more prominent?

I've been supplementing my diet with this Aloe Vera gel from Whole Foods - every morning mixed with OJ. I recently bumped up to three times a day. But I seem to be noticing a lot of irregular bowel activity and "gross" noises coming from my lower abdomen. No pain or blood, so that's a good thing.

FYI - I also started Humira a few months ago, so this has been bugging me as I'm hoping the Humira isn't already losing it's efficacy.
 
Hi RichardO,

Very interesting testimony. I'm using a steroid which seems to be working right now. There are several supplements that I use. I also use prescription medicine for treatment of other non-Crohn's disorders. I wouldn't have the luxury of trying your method because of the synergistic effect of my body with the prescribed meds and supplements. I'm at an advantage because I have a neurologist who understands drug chemistry, side effects, and interactions.

Between the neurologist and my GI, the symptoms of Crohn's disease that I was experiencing are under control. I think it was pretty much accidental at first, but they managed to get this flare under control by "tweaking" the medications I currently use. Entocort EC is the only "new" prescription that has entered the mix, and that was precribed short-term.

I believe that anyone that goes into remission has experienced some kind of "cure" to symptoms based on their own body chemistry, Crohn's and non-Crohn's medication, diet, and mental health. I believe your testimony speaks well to how you achieved remission, and possibly repair of past damage.

I hate to be the stick in the mud, but to believe you are cured is not scientific, and probably not completely true. You ascribe to being a "salesman", and not a scientist, medical researcher, or doctor. In fact you said you're basically doubtful of doctors and the medical and pharmacetical communities. Although I won't dispute your "miriacle", I don't believe you've found a cure for Crohn's disease. I think presenting your findings as a "cure" can bring about false hope and mistrust. I'm sorry but I wouldn't be responsible if I didn't emphasize this. Credibility is important when you' re words are reaching upwards of a thousand people, most of whom are seeking relief.

I agree with Kenny and Dan, that our condition could probably not be "cured" because of the cellular-biological-genetic immune defect. I don't believe any of us could return to our former diets and eating habits. Each of us have a certain pathology in common. That would include you, if indeed your clinical experience is as you said. Yet each of us has a genetic mutation that makes our disease as individual as it is common.

A "flare" is triggered by an adverse biological reaction. The same is true for the onset of Crohn's disease - it's "triggered". It shows up one fine day when it was never there before. I believe there are common disease "triggers" that will bring on a flare, or if there was no disease present, the trigger can bring onset. These triggers are smoking, use of NSAID's, and a diet high in refined sugars. How long these "triggers" need to be present is also unique to the individual.

My grandmother had this disease. She died at 80 years from a non-Crohn's cause. I was symptom-free when that happened and I was 27-years old. I'll bet if I could somehow compare our Crohn's/immune biology, I would find the exact mutation. The same is true with my girlfriend. Both she and her sister almost certainly have the same defective cellular Crohn's biology.

What makes this more complex and devoid of a "cure" is that we carry a genetic blueprint that is passed down generation to generation, regardless of how or what we do with symptomolgy. My mother doesn't have a penny's worth of Crohn's disease. My grandmother did. My girlfriend's mother had a case of adenocarcenoma (colon cancer), but she did not have a penny's worth of Crohn's disease either. In fact, she still doesn't understand the breadth of Crohn's and she has two daughters with active disease.

Although you may have found a way to end active inflammation, and to either heal or conceal previous Crohn's activity, I don't believe that yor regimen can eradicate the biological/genetic defect. Crohn's disease, and autoimmune disease in general, has been found to have a genetic link up to 30% of the time. I believe it's actually higher because family history is a complicated task to undertake, and an artform in itself.

My girlfriend's mother, my mother, and perhaps even your mother passed down a Crohn's genetic defect to their children. If you have children, you have have passed the same Crohn's genetic defect to them. Whether anyone's particular immune system is "triggered" into hyper-performance is another topic. Nobody had a choice in the matter. All the "hard work" and "reserch" that I do in my lifetime will not stop the onset of this disease in my generations to come.

But I can't and won't discount your successful experiment. I'm particularly interested in the caffeiene connection - indeed you may be onto something we all should give consideration. Had you not stopped caffeine, your results might have been different.
 
Last edited:
GingerCat

I have heard some good things about treating Crohn's with aloe vera juice. There is only one thing that I am concerned about- I have heard that some types of aloe vera can cause diarrhoea. Which type is best?
 
This thread reminds me why I can't stand Multi-level marketers. They seem to have started selling 'special' aloe in the last few years...
 
I have a 13year old daughter who has recently been diagnosed with Crohn's Disease,we spent a few weeks in hospital and she has been sent home on IG Tube feeds of Ensure Plus,this is now the 9th week of Ensure.Over all these weeks I have tried to understand why I might need to put my young daughter on any drugs..Which is the next discussion topic that her specialist tells me we need to talk about.
Searching the internet for some answers I found people taking about Aloe MP Plus.
I have 3 weeks before the discussion with my daughters specialist before I need to give him an answer on her medication status.
Im very intersted in NOT putting my daughter on any drugs AM I being unrealistic,
I would welcome anyone repsonces
 
Hi and :welcome:

This is a difficult one for me to answer as Roo, 14 at the time, received her diagnosis on the operating table.

She did not have the opportunity to try anything to help bring the disease under control. So in her situation no medication, no diet modification, no nothing equalled a perforated and infarcted bowel and sepsis.

At present she is on medication and has been in remission since her resection 4 years ago.

I guess this would be an extreme example of untreated Crohn's by any method. This is just our experience and I understand your concern about the medication. I'm sure others will chime in with their experiences and I hope you find the answers you need to make an informed decision.

All the best and take care,
Dusty
 
Excellent!

This thread is so incredibly interesting, and I find that the SCD diet is almost exactly what I have been put on 20 days ago and I felt better almost instantly! From having all the signs of a flare (tired, fever, blood, diarrhea, itchy skin, itchy eyes, stomach pains etc.) to having normal BMs, no blood, feeling more energetic and getting rid of the fever it only took TWO DAYS. I know this probably sounds like some kind of humbug thing, but for me this actually worked. I have no idea if I'm healed or cured or whatever, but right now I feel so much better so that is what really matters.

I do have a feeling though (from what I've been reading) that this diet may work better for Crohn's colitis and UC. But I'm not sure? To you people who have had an effect of this diet, what is your exact diagnosis?

Forum contributor posted something along the lines of: "There goes my whole diet!" And that is exactly what happened to me when I was put on this diet... :p I absolutely love candy, bread, cakes, cookies, potatoes etc. etc. And I was pretty devastated to learn that that was what I had to cut out... But if the motivation to get better is there, it really is worth a try. :) I was so hesitative before, but when I started to flare again and the option was Prednisone I was no longer in doubt. BRING IT ON! :D

The aloe vera juice is interesting news, and I will have a talk with my doctor about it, and ask if it interferes with my medication (Asacol). Since he is so open to new and alternative treatments this must probably be a winner for him. (NOT...)

Good luck to everyone out there! Best wishes!

xoxo
 
superglue said:
I have a 13year old daughter who has recently been diagnosed with Crohn's Disease,we spent a few weeks in hospital and she has been sent home on IG Tube feeds of Ensure Plus,this is now the 9th week of Ensure.Over all these weeks I have tried to understand why I might need to put my young daughter on any drugs..Which is the next discussion topic that her specialist tells me we need to talk about.
Searching the internet for some answers I found people taking about Aloe MP Plus.
I have 3 weeks before the discussion with my daughters specialist before I need to give him an answer on her medication status.
Im very intersted in NOT putting my daughter on any drugs AM I being unrealistic,
I would welcome anyone repsonces
Click to expand...

superglue, many CD's patients are treated with a steroid, like prednisone when in a flare, which it sounds like your daughter is in. I make the analogy of steroids that it is like calling the fire department, they may be a little rough getting the job done but they can put the fire out so you can move onto a maintenance drug.

I took prednisone for just 5 weeks, starting at a relatively low dose of 20 mg and tapering 5 mg every seven days, with two weeks at 5 mg. That stopped the flare that had caused me to lose almost 30 pounds in 6 weeks. Then I went on Lialda and have been doing OK for a month now.

I'm not a doctor and many folks here have more experience than me, but I just wonder why they have not put your daughter on steroids to get the "fire" out.

Good luck and I hope she gets better soon.

edit: after jetta's post I realized I missed the part about your wanting to avoid drugs. Sorry about that. Having said that, the prednisone does not have to be long term and mostly it is not. It could be really effective at getting her out of the gutter. After just three days on it I felt so much better and the wieght loss stopped. I also has bad joint pain which is another symptom of crohn's, the prednisone stopped that in almost a day, as I said, it's like calling the fire department. good luck!
 
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superglue said:
I have a 13year old daughter who has recently been diagnosed with Crohn's Disease,we spent a few weeks in hospital and she has been sent home on IG Tube feeds of Ensure Plus,this is now the 9th week of Ensure.Over all these weeks I have tried to understand why I might need to put my young daughter on any drugs..Which is the next discussion topic that her specialist tells me we need to talk about.
Searching the internet for some answers I found people taking about Aloe MP Plus.
I have 3 weeks before the discussion with my daughters specialist before I need to give him an answer on her medication status.
Im very intersted in NOT putting my daughter on any drugs AM I being unrealistic,
I would welcome anyone repsonces
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:welcome:Superglue, sorry your daughter has Crohn's and as a parent and a Crohnie, I dont blame you for not wanting her on drugs, unless it is absolutely necessary... having said that , this disease can also have acute pain anytime or anywhere, especially if she is narrowing. It is a hard decision but her diet will need to be strict. Aloe helps I have been on capsule ones , didnt work very long.

It would be a good idea to post your daughters journey and tell it on YOUR story , there are alot of good people here and knowledgable about different alternatives, because we all want to find the best way.

Welcome, let us help you and your daughter ok. What country are you from? Big hugs.
 
My daughter is NOT in ANY pain NOW,why medicate her????

I will try and explain further as to ''why the fire hasnt started being put out yet''/Or why Ive opted for Matilda<--thats my girl to not yet take any medications.
Matilda first complaint was at about 8/9years of age=her ankles hurt.
At 11years of age she started complaining of diah???,stole tests were done,
without any conclusion to the cause,this went on and on and one for over a year.
In January of this year Matilda complained of right sided illiac fossa pain,she began losing weight she could not afford to lose as she was only 34kilo's then,
by Febuary 2010 when I presented her at the first hospital,she was 29kilo's,
She was like a child in Labor,the pains she was having were lasting from 3 seconds to 43seconds and she was having them at least 30times a day and night.
It was suggested that I make an appointment with a Specialist in Sydney,
which I tried to but couldnt get into see him till the end of May.
My option was to pack a suitcase and present at Casuality at the hospital that the Specialist was connected at.,..This worked IMMEDIATELY.
Along with alot of tests Matilda was diagnosed with Crohn's.
NOW about the FIRE....her pains had subsided a hell of alot,AND when asked by her Specialist about ""Treatment''=Steriods,I explained my reluctence and Matilda was not at all keen on going on any drugs.He told me the other option at this point was IG Ensure Plus which she has now been on for 10weeks,she also I might add HAS NO PAIN.
NOW see this is why I am trying to ask the advice of others=
My point MY daughter is not in any pain why should I give her medication?
I think some of the fire has been put out...and I understand she cant stay on Ensure forever.AND time will tell when food is introduced.
Miss Matilda is currently 33.7kilo's WOOOOOOOOHOOOOOOOO
 
I appreciate your thinking on the medications. I encourage you to keep reading this site and keep becoming educated on the disease. It is chronic and there is no cure.

I was recently confronted with being put on Humira which is a strong biological drug that suppresses the immune response of the intestines, CD is basically an immune system disease affecting the GI tract. The labeling on Humira states clearly that it is for when traditional treatments do not work. So I asked my doctor, why go to this when I have never tried traditional? His reply is that the thinking now is to restrict the damage as much as possible. You see even without pain or strong symptoms we may be suffering scarring and damage. The small intestine for example if you have the diseases there can start to thicken and actually create e blockage which is terribly painful, they say and is fixed by surgery.

Not trying to scare or anything, but do read the experiences of those in this forum. You'll see people who had ten great years suddenly balled up in pain and having to go back into battle with the disease.

I hope I have helped and I wish you and Matilda all the best. You obviously care very much and you want to be sure you're doing the best for your daughter and not just taking the doctors advice. I do admire that because it is very important to advocate on her behalf.

Know that Matilda can have a great life despite this disease, but all of us with it have to expect things to get bumpy from time to time.
 
Dekar - While I have no personal experience using aloe vera. I recently found out a friend of mine from back home a) has Crohn's disease and b) quit taking all medications to take aloe vera (she said she has a lot of cancer in her family and didn't feel comfortable taking meds putting her at a greater risk of developing it). She's been solely on aloe vera and med-free for about 3 years now I think she said. She says her doctor is amazed how well she's been able to stay healthy and symptom-free on aloe vera alone.

I don't believe it's for everyone, but I guess in her case it really worked for her! For now anyway... I do believe even with successful alternative treatments, there will be times in life where medications and/or surgery will be necessary.
 
Hi superglue,

I agree with what crohnicaly stinky has said.

I will toss around a couple thoughts based on my experience with my daughter. During the lead up to Roo's diagnosis she wasn't always in pain either but the disease was undoubtedly active. So perhaps no pain doesn't necessarily equal no active disease.

Then there is an individual's perception of pain. In hindsight I know my daughter built up a tolerance to pain and I know that because right before she went into theatre, according to her, the level of pain was a 7 out of 10! This was with a perforated and grangrenous bowel and peritonitis. You need to ask yourself, has my daughter over time become accustomed to living with pain? If she has, what most people would consider a low degree of pain may for her be negligible.

Then there is how she feels about her condition and herself. You have stated that she is not at all keen to go on drugs, so be it, and for FWIW I don't imagine any 13 year old would want to be on medication. Another question you need to ask yourself is, does her reluctance affect her honesty about the way she feels? I don't mean that she is being deliberately dishonest but rather, weighing up her options she may mask some of her symptoms.

Now how does she feel this disease affects you/the family? Does she do or say things because she doesn't want to be a bother? You have stated you do not want her on drugs so is she also reflecting your feelings. Again, does she mask her symptoms so as not to be a burden? In our case, the night Roo was admitted to hospital she told us the pain wasn't really that bad. Why? because it was cold and wet and she didn't want us to have to drive at midnight to the hospital.

I guess what I'm saying by asking you to question and reflect about about Matilda's current situation is that what is apparent on the surface isn't always an indication of what is happening under the surface.

Take care,
Dusty
 
Hi superglue
and welcome

I'm not in any pain now, thank God! BUT... I will not become complacent, I will not stop taking my maintenance drug Pentasa, this is a prophylactic, a preventative to ward off future flares and to help keep me in remission.
I do understand your reluctance, but IMO, prevention is better than cure!
It's soooo unpredictable, it can suddenly jump up and bite you on the arse before you've turned round, so consider a maintenance drug like Pentasa for Matilda, it will be worth it in the long run.
read our treatment section and read about the amnio salicylates like Pentasa.
good luck and any questions, fire away
lotsa Luv
Joan xxx
 
Hello RichardO & everyone,
I know this is an older post but a very important one in my opinion. I was diagnosed in 1991 after having severe pain in my lower right abdomen. The day before I was fishing on the Colorado river & drinking lots of SODA in the hot weather. After a Barium enema test the Gastro Doc showed me on the screen where my intestine was narrowed down to almost a flattened closed off appearance , compared to the adjacent intestines. Him & his partner informed me that they believed that I had Crohn's. He put me on asulfasalazine anti inflammatory meds which made me feel sickly. After the 2nd med I decided to stop all meds.
The week before, I ran into an older gentleman that explained to me how ALOE VERA has been known to help people with gastro-intestinal problems.
I started drinking 1/2 cup of ALOE VERA juice 3-4 times a day.
I also stopped drinking SODA. I also changed my diet too.
When I went back the following month for another checkup the Doctor COULD NOT FIND ANY SIGNS OF CROHN'S in my intestines.
My Doctor actually said " Maybe its a Miracle", somewhat jokingly.
ALOE VERA has helped me to maintain Crohn's for over 20 years. It still remains to be the most important factor along with DIET in maintaining my Crohn's symptoms today. I have not been on any medications since 1991. Just like all prescription medications that help some people maintain Crohn's, ALOE VERA can do the same without the side effects. I also DO NOT DRINK COFFEE OR ANY THING WITH HIGH DOSES OF CAFFIENE, since coffee has caused a flareup in my case.
Thanks RichardO for posting your experience with ALOE VERA.
 
Look, I'm glad if this works for people. I tried it, seemed maybe to help for awhile, but nothing dramatic. It seems like a fairly low-risk thing to try. I would hesitate to pay attention to any specific brand names mentioned by anyone. Aloe is aloe.

What irks me about this thread, and the most recent post in particular, is that the excited phrasing, the selective total capitalization, and the format in general, REEK of spam marketing.

I'm not sure if you're a spammer, or not. Your post count is pretty low. Who knows. What I'm saying is, your post is formatted the way that a spammer formats his posts, and it detracts from your credibility in a big way, in my opinion.
 
Well muppett I dont sell anything & I'm not in sales. Im just here to post a viable alternative for Crohn's that had some very good success for me. I'm only here to let others know an avenue that does work for many who try it. You continue to try to discredit anyone who tries to help others on this site that is linked to nutrition or natural therapies. Your determination makes me believe that you work in the medical field or just biased towards traditional medicine only. I will not continue to debate over this with you since I have noticed you seem to get some satisfaction from it.
 
I don't generally try to discredit any individuals but I sure do ask for documentation and challenge unfounded assertions. That's only reasonable. In your case your last post looks like a chain email and that makes it hard to take seriously. If you had mentioned a brand name I'd have been sure it was spam.

If it helps you, great. I've been having great results lately from magnesium supplements and I've been crowing about them. Far from the biased nutrition and naturopathy bashing troll you think I am.
 
seaside said:
Hi

I suppose by now (since your post in 2009) you have some insight regarding the probiotics (lactobacillus plantarum), digestive enzymes and new zealand green lipped mussel. Did you manage to control the CD with it and diet? Can you share?

Regarding the MAP theory, I have read a lot (trials, theories etc.) Yes, it makes a lot of sense. Unfortunately still we have to wait (vaccine or treatment), especially since the Australian pharmaceutical company producing the triple antibiotic (acording to Borody's protocol) was taken over by a German (I will not name it here) company that decided to put the drug on hold.

An interesting testimonial comes from an MD CD affected and treated by Borody. The article is called "Is There a Cure for Crohn's Disease?"
published by Judith Eve Lipton M.D. on Nov 10, 2013 in Pura Vida. There is a second part of the post, even more interesting. Sorry, I cannot submit links yet
Click to expand...
 
Hi folks
I tried the diet - cutting out all carbs, sugars, fruit. I lost 1kg per week, which I could NOT afford to do, being too thin already.
I tried it again some years later - same problem. Lost energy, lost weight. As far as carbs are concerned, I currently I eat potatoes, sweet potatoes, and rice. Also some fruit. But I cut out sugar, caffeine and all other grains.
I was recently bitten by a tick and got Rickettsia. Currently on horrible anti-biotics, which has wrecked my gut flora, hello candida.
I have been told that Rife therapy and MMS will sort out the Rickettsia (similar to Lyme's disease) And I've also read some positive results by using Rife and MMS for Crohn's. I know that MMS has to be used VERY cautiously. Any comments?
 
Can anyone tell me how to mix and use MMS? I have tried almost everything LDN and had stem cell transplants and that works well, but the stem cells tend to only last a year or two. Sad, because I spent 20K 4 times. I cannot keep doing that. Lately crohns is on the attack and I want to try MMS. Im scared because I dont know the dosing or how to mix and take it. I ordered the two bottles. I know Lindsay Wagner Bionic Woman used it and it worked for the condition she had and it never returned. Please offer any advice.

Thank you,

Jonnny:sign0085:
 
Hi. Underneath the Treatment section in the forum, there is a subsection entitled Medical Marijuana.
 
Thank you for the information. However, I meant the other MMS product that they are saying is like bleach. I will try just about anything. I cannot smoke anything because I will have trouble with my lungs. I have tried to eat marijuana and its so potent that I could not handle it. Man I did get a nice set of the giggles though.
 

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