Major Theories of Crohns.

[dad_01]

I'm trying to sort out the major theories of crohns, in order to make decisions on future treatment for my son. Right now we are going the conventional medical route (conventional, at least as far as europe is concerned, if I understand correctly) and he is using an ng feeding tube at night - six to seven nights a week - to take in about 800 ml of this special nutritional stuff.

Doctor said that in 70 percent of the cases, if the person gets 80 percent of his calories from the nutrient stuff, it will have a therapeutic (reduction of the inflammation) effect. After that, he must use the ng tube for 5 nights a week for possibly a long time to remain in remission.

 

[dad_01]

I've seen the MAP theory of crohns - something about a bacteria called MAP that has a higher incidence in people with crohns. Not sure if it is causal or not. Also, interestingly, it apparently is not present in all crohns patients, just present in a higher precentage of crohn's patients than non-crohns patients.

I've read some stuff about an e coli connection to crohns (a relatively recent study by cornell, on animals, I believe)

Maybe related to this is a program by a doctor in california (a GI at cedars sinai in los angeles) who treats you with antibiotics for a short time - a couple of weeks - and then puts you on low doses of something called zelnorm. Sounds like the program is under the theory that attacking some bacteria will help.

Just wondering what people think.

Thanks.

 

[dad_01]

This is all with the view that there are genetic predispositions to getting crohns, of course.

 

[Kev]

Well, it's quite easy to get stuck in a quagmire of sorts... as popular theories on crohns wax N wane. One can build a mindseye house of cards on the foundation of a popular theory only to have it come crashing down WHEN a 'new' study does a number on it... Frinstance, I jumped on the MAP bandwagon big time the first time I heard it.. thought doctors/researchers were within a stones throw of a 'cure'. Then the 'next' study really seemed to contradict the MAP theory.. and my vision of a cure within 5 years, or 10 years, EVAPORATED. I can't tell you, considering the state I was in at the time, truly the impact that little event in the ongoing battle with this disease, had on me.

So, these days I try to maintain a more 'distant' approach. I'm pleased to read any new theories... and I'm thrilled to see theories 'rebound'.. cause it shows that, popularity aside, ANY/ALL theories are re-examined whenever any new evidence is found, pro or con. I'm even willing to gamble, to personally invest in new, almost experimental treatments.. like LDN. It seems to be working for me. I guess what I'm trying to put into words is that, fighting IBD is a gamble of sorts; and like all gambling, you have to judge for yourself when to fold and walk away; and when to go all in and bet the pot. Or, least, what you can truly afford to lose.

 

[dad_01]

Thanks for your comments.

Question - what is "LDN?"

 

[Kev]

Oooops, sorry about that.. bad habit. LDN is short for Low Dose Naltrexone. It's a relatively new treatment, using an old drug, for the treatment of Crohns/IBD. I learned about it first here, then did some research. A study from early 2007 was presented in the American Journal of Gastroenterology.. they studied a group (it was a relatively small group, as drug involved was old, and off patent protection) of patients who were given very low doses of naltrexone to see what, if any effect, it would have on IBD. The results were promising.. over as little as 12 weeks, 60 - 89% experienced significant improvement. The other good news is that, at such low doses, there are literally no side effects of concern from this time tested drug. The only ones I've experienced is the odd (as in rare) vivid dream.. I knew about those going in.. thought it referred to 'nightmares'... Wasn't the case for me.. just panoramic very detailed dreams.
anyway, I'm well past my 4th month on LDN, and it has turned around my life (I'm a bit leery saying that.. not trying to peddle a cure, just pass on info AND a little paranoid that saying it out loud might 'jinx' it for me.. don't want to wind up in the 11-40% for whom it had little or no effect).. Anyway, this isn't a cure. At least I don't think so YET. I've kept a diary on here about my regular (I was going to go daily.. but after an initial slow start, then a few odd rough patches, it settled down to such a routine and boring.. I'm doing really good scenario.. I reverted to weekly or more updates - just how many ways/times can one say 'Same old, same old' Doing much better, symptom almost nil, little if any pain, lots of energy.. get's pretty boring after a while).. experiences with Naltrexone
Anyway, there is a whole website devoted to it "www.lowdosenaltrexone.org"
as it has found to be very/extremely effective in treating a host of diseases: crohns, MS, arthritis, even ALS.. I've read anecdotal stories on there of cases of even 3 year olds suffering from crohns who responded to LDN where all other treatments had failed. My GI agreed to trial me on it because the other medical options available to me carried lower percentages and greater adverse side effect risks. That was part of my reasoning for playing guinea pig. Others included I wanted to take the risk in case my kids developed IBD, and I have a sister and close friend who both have MS. And, it was a fairly safe gamble.. in the 'situation' I was in.. a/b's didn't work, 5ASA wasn't getting it done, I became toxic to Imuran/Azathioprine.. couldnt' afford Remicade or humira either. so it was metho OR surgery.. with no guarrantees either would do me any good. Look, if you find that your are running low of viable treatments for your child; or those open to you are very daunting in the associated risks, you may want to look at this as an option. If you decide to try it, the big hurdles are convincing a doctor to gamble N prescribe it; and finding a close pharmacy to compound this drug into the very low doses that us crohnies would need. It was originally tested at 300mg... most people taking it take it in 50 - 150 mg doses... us crohnies take it in a single dose ranging from 1.5 - 4.5 mg total. In my particular case, a 2 week supply for a regular user would last me 14 months

 

[dad_01]

Thanks for all the info on this. I'm very glad you are having so much success with it.

I will definitely want to include it in treatments that I want to look into.

Do you know any good medical sites for researching medications?

 

[dad_01]

Am I missing any major theories on crohns (either cause or treatment)?

Do you remember which theory undermined the MAP theory?

I know that the specific carbohydrate diet has a lot of very strong adherents. I've found web sites where people swear by it. Not sure if it is a good sample, though. For instance, where do you hear from people who have tried it and didn't have success.

 

[Kev]

CCFA for one... There are others... but it can be hit or miss. Like, I was able to actually go into the website for the American Journal of Gastroenterology and see AND printout the overview of the LDN study (wanted to arm myself with it for my next GI's appointment - didn't need to - she'd gone in and read the whole study) BUT I couldn't see the whole study w/o paying a hi (dr's scale) subscription fee. I would also suggest checking out the manufacturers website of any drugs you are considering... a wealth of info to be had there. Just watch out for 'direct' marketing sites... usually their take on meds isn't an unbiased opinion', OK? I would suggest, just to make the learning curve less steep at the early stages... you note everything your docs discuss with you, then do a ton of research on them.. then go back, with notes in hand, on what you have learned.. Get into discussions, debates... Don't put the docs on pedestals, nor treat them with disrespect... they have a lot of training, expertise, experience.
Just keep in mind they don't know it all.. they can't answer EVERYTHING right.
Think you'll find that in dealing with this, there are few hard black Vs white answers... and since this disease is soo individualistic, sooo variable and personal... and your child is soo young.... welll, what may apply today often is out tomorrow. And even our 'best guess' advice or opinions may not apply.

 

[dad_01]

Thanks. I'm not real impressed with the CCFA site; the impression I have is that they play it very close to the conventional thinking; I seem to recall that they don't put a lot of credence in the role of diet.

You sound like you're pretty methodical, and do good research, on things that you look into.

One question about the MAP stuff, if you don't mind. An alternative nutritionist we have seen pushes for drinking raw milk (i.e., unpastueurized). I thought the MAP bacteria was supposedly not killed by the pastuerizing process. If there is no pastuerizing at all, wouldn't there be more MAP bacteria?

(Excuse my spelling if I am butchering the spelling of pastueurize).

 

[Kev]

No, my research skills are no where near as good as some others on this site. The problem is my memory can't handle tooo many details (not sure if that's age AND OR gender related).. I don't know what benefits or risks one might arrive at by switching to 'raw' milk. My understanding here is that such sales are 'illegal'. As for the pasteurization process (and this is all bona fide guesswork on my part) my understanding is that North America uses a short time hi temperature process WHICH doesn't affect the MAP bacteria. But some countries/places use a long time/low temp process that does. I think its a moot point if one already has the disease (but that could be shortsighted thinking on my part). I have always been sensitive to milk products, long before I showed any sign of IBD (tho that itself could have been an early sign). But on trips to the Domican Republic (note how I didn't simply say D.R.?) I was able to drink all the coffee/tea I wanted with their milk... thought it might have been goats, but apparently it is cow's milk... but it was kept at hi temp in a separate heated urn to keep it from spoiling... a carry-over from the days before refrigeration. Thaat it might have impacted the 'bacteria' that our methods don't is pure guesswork OR that it helped breakdown the lactose I'm sensitive too is likewise. All I know that it certainly impacted me... or more to the point the milkproducts didn't. OK

If one is concerned about pastureized (sp?) milk vs raw, or the HTST methods, I think various sites will tell one how to Long Time Low Temp pasteurize milk at home... without the milk spoiling... then refrigerate it to child drinking temps. I think one may have to experiment, throw out some early batches, then keep a sharp eye (or maybe nose) on the home pastuerized milk to avoid spoilage. I can see no harm in the attempt, but then again, I can be pretty shortsighted.

As for the CCFA being traditional in their approach (without judging them) think they pretty MUCH have to remain 'mainstream' as they are working on donated funds.. Can one actually gamble with other peoples money willy nilly, esp with a disease like this? If you do, how long will you last. Only those also in favour of such 'leftwing/rightwing' tendancies will continue to support you, correct??
BUT, they do keep abreast of the research, and they offer that as an ongoing thing.. think you can even be put on a mailing list for updates, news events, etc,... AND even if just in their 'mainstream' approach, they offer a lot of good material and support. See? Nothing is ever strictly black or white in this, OK?

 

[dad_01]

Kev, I guess, but I don' t know if I completely agree with that.

I'm annoyed from the apparent lack of importance from the conventional medical community towards diet, though it does seem that some medical schools are starting to place more importance on it.

It's hard for me not to think that it could be influenced by the large pharmaceuticals; I'm wondering how much influence they have on medical school cirriculums, and how much influence they have on the U.S. Food and Drug Administration. Oftentimes, these regulatory agencies are populated by people from the industries that they are supposed to be overseeing.

 

[D Bergy]

Everything is suspect when treating disease. Too much money involved to be completely objective.

Just my opinion.

I give the most credence to the MAP theory. The more recent one that basically says the MAP bacteria enables sticky E-Coli to burrow into the intestinal tissue and irritate it.

This theory supports some accidental evidence I came across when treating my disease.

I also think that a genetic component is involved that does not allow use to eliminate this and likely other pathogenic bacteria. Or, our immune system was compromised by an environmental factor such as immunizations, chemical exposure, or some yet unknown environmental reason.

All three could be interrelated also.

Dan

 

[soupdragon69]

Dad 01, See I would disagree with you on the aspect of the medical community not seeing the importance of diet.

Yes, ok , I am in the UK but my team and those at the same hospital highlight the need for diet and have even devised a Crohns diet plan for those patients coming off elemental diet and eating again for the first time. They gave me a booklet last year and it comprised of all the foods least likely to trigger the gut then told me how to reintroduce the other foods gradually as part of an elimination plan to work out what most likely triggered me as an individual.

Unfortunately for me it didnt work because I had way too many food sensitivities and have had to work very hard with my gastro dietitian who is part of the team to sort things out. You will see what I am allowed on another thread here called food intolerances. I only posted it to give folk some idea as to how much a dietitian can make a difference but also its a two way street in relation to communication.

The diet plan the gastro teams at my hospital use was devised from research they did and then they trialled it at other hospitals in the country some of which now utilise it too.

Its called the LOFFLEX diet. Means Low Fat low Fibre Exclusion Diet. As I said it doesnt work for everyone and you already know Crohns patients are very much individuals on the food front but it does give somewhere to start and did allow me to work out what else was triggering me from there.

Hope this helps.

 

[Brando]

the MAP link has been discussed for years now. there are some studies that suggest the link and others that are fairly inconclusive. CCFA has posted more than once about the "lack of evidence" for a MAP connection through some studies but the one thing that is being overlooked by most is what type of bacteria MAP actually is. It's a pleomorphic bacteria or L-form bacteria along with a few other types most notably Helicobacter pylori which causes stomach ulcers and Borrelia burgdorgeri which can cause lyme disease. given the success rate of getting a real deal lyme disease diagnosis (very low) using current culturing technology it would be easy for me to correlate the success rate of also culturing other bacterias of the same type in a lab, or lack thereof, to getting a definite answer to if a bacteria such as MAP actually causes Crohn's Disease. these are very hard bacterias to culture and can even invade white blood cells and live there. check it out here: http://bacteriality.com/2007/08/15/l-forms/ (thanks to D Bergy for finding this website and posting it in another thread)

if you are interested in some video documentaries that talk about the dairy industry and specifically the milk pastuerization process v. raw milk check youtube link.. very interesting stuff here too which could help explain why milk could be a carrier of some bad bacterias etc.

http://www.youtube.com/watch?v=uHcyAH0rOPE&feature=related

there are also some other theories about the role of oxdiation in the body and specifically some iron transport problems in the intestinal tract contributing to the disease. this along with certain protein allergies has been suggested to be the cause as well. really good info here: http://www.krysalis.net/crohn.htm

there are also theories on the use of probiotics in the management of IBS and IBD. some have more success than others and some books say it works better with specific diets etc. etc. it is definetly worth looking into as some people in the medical community are starting to give it more thought rather than dismissing it immediately. this and fish oil.

the LDN approach seems like it might be a very good way to go as well. Kev and D Bergy both use it and both have had success with it. there are threads here to read about it and i'm sure they would provide info if you ask.

another approach that some scientists are devloping are the use of whipworms in the intestinal tract. i believe it is called the Helminthic therapy and they basically innoculate you with whipworms which then begin to live in your digestive tract and give your immune system a target to attack rather than your own tissues. as crazy as it may sound they are getting some success out of it with minor side effects. you would probably have to fly to Germany or Mexico to get this though.

hope this helps some and hope your son is doing ok. this disease can be a bitch but it is good you are taking a proactive approach. the FDA approved methods dont have all the answers to everything and it is important to look into every possible avenue to get some relief.

 

[Brando]

a couple things real quick to think about.. most of these low carb diets are also suggested for use in chronic candida albicans infections. this yeast lives naturally in the body (mostly in the terminal ileum where alot of people with Crohn's have their trouble) but it is always in check and kept in low concentrations by other intestinal bacterias. the theory is that antibiotics and steroid treatment deplete the body of good and bad bacteria at the same time giving candida a chance to proliferate. it can mutate into a fungus and produce rhizomes which are roots in the intestinal tract making it hard as hell to completely get rid of. this is where people have had some success in probiotic therapy granted it could be killing sometihng other than candida (sticky e. coli comes to mind).

on another note, most of my problems at the moment come from cramping after eating something that doesnt agree with me completely. i have significantly less active disease than when i was first diagnosed ~4 years ago and i have used probitiocs for a while now along with changes in diet and other things as well. lately i have been using ALOT of extra virgin olive oil in my diet and most of my cramping problems have been resolved. some of the crohn's books suggest to cook with it or coconut oil or others. there are even scientific studies saying the classic Mediterranean diet plays a huge role in the reason most people from that geographical area do not get bowel cancers or have a high rate of heart disease and olive oil is one of the main ingredients. the oil itself is high in monounsaturated fats and antioxidants as well which could lend some credence to the DMSO and oxidative stress theory proposed above.. i am, however, one person and i'm sure not everyone will be cured by eating some foods with olive oil in it -- http://www.msnbc.msn.com/id/11758647/

 

[D Bergy]

Olive Oil is so much better for you than vegetable oils or animal fats that even if you do not have health problems, you should consider using it. Just the heart and circulatory system benefits make it worthwhile.

http://www.mayoclinic.com/health/food-and-nutrition/AN01037

All Olive Oils do not have these good characteristics so you have to use cold pressed extra virgin Olive Oil to benefit fully from the oil. It is more expensive than other oils.

Coconut Oil is another good oil to use. It actually steps up your metabolism for a while when you first start using it. If memory serves me right it is also antibacterial in nature.

These are my favorite way of treating Crohn's because they are things you normally consume anyway, and it takes no extraordinary effort to use them. Just replace what you use now, and you should increase your chances of getting a little benefit for the Crohn's at the same time. Lowers your bad cholesterol without the side effects of medications that do the same thing.

Another thing I remember about H-Pylori is that Fish Oil can kill this bacteria in vitro. Since Fish Oil is quite often taken as a supplement for Crohn's, it is good to know that you are likely preventing infection from H-Pylori at the same time. I had this infection and it causes a whole new set of stomach problems that gave me more misery than my Crohn's ever did.

http://www.thorne.com/media/helicobacter_pylori.pdf

Dan

 

[Mazen]

Another popular diet and theory for Crohn's is the Specific Carbohydrate Diet. The diet is hard to follow (I couldn't do it!!!); but if you can , it's worth the try. the prmises of the diet are:

The diet was originally developed by Dr. Sydney Hass, and is based on the same guidelines Gottschall's daughter followed decades ago in her bout with Ulcerative colitis. The rationale of the diet described in Breaking the Vicious Cycle is as follows:

When the body receives complex carbohydrates (disaccharides or polysaccharides) these substances must be broken down before they can be absorbed.
In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish.
Bacterial overgrowth is accordingly followed by a significant increase in the waste and other irritants they produce.
Irritation in the lining of the digestive tract results in the overproduction of mucus and injury to the digestive tract, which in turn causes malabsorption and makes it even more difficult to maintain proper digestion.
The purpose of the diet is to break the ongoing cycle caused by an overpopulation of harmful bacteria in the gut. When the body is able to absorb the proper nutrients from simple sugars and other carbohydrates that are easy to digest, the inflammation and other complications caused by many auto-immune diseases can be lessened. The goal is to rid the body of complex saccharides so that the gut will be able to heal itself and enable further healing to occur.

The method of the diet is to keep the gutflora well balanced and to allow the gut to digest all of the food it is given, thereby starving out the harmful bacteria.

http://en.wikipedia.org/wiki/Specific_Carbohydrate_Diet

http://www.scdiet.org/

 

[TammySue62]

My diet is the BRAT diet. It works for me

 

[Brando]

Going off what Mazen has posted, it is also worth looking into Leaky Gut Syndrome as a possible cause or possible complication of Crohn's Disease. Healing it would require a diet like the SCD diet.

 

[butt-eze]

Dad
I see how it's easy to be skeptical of the drug companies and how medical professionals are trained. However, I think there is no way to discount the fact that there is a large population of crohn's sufferers that have adhered to strict diets whether recommend or not. For some it has aided in remission but for others it did nothing to improve the patients situation.
It is true that drug companies seem like they are primarily out to get our money. However, I have never read information from drug companies that would indicate they dis-credit a diet related to treatment.
The truth is that you're going through what most of us have...that is, you're trying to find the common link. We have all asked the same questions and mostly come up with differing answers and opinions.

For those who suffer with Crohn's personally it does irk us when people that do not have Crohn's suggests the solution or problem is diet only. All evidence indicates that this disease is out of our hands as far as cause goes.

 

[BWS1982]

I did a ton of research myself here and there when first diagnosed but since I came up with so much heresay, conjecture, theory, and all-out guesswork, I got too frustrated. I figure once there's something clear cut enough for a cause and/or cure, it'll be quite unavoidable, and I'll hear about it when/if that happens. Until then, I'll do my best to wage war against this atrocity.

 

[dad_01]

the MAP link has been discussed for years now. there are some studies that suggest the link and others that are fairly inconclusive. CCFA has posted more than once about the "lack of evidence" for a MAP connection through some studies but the one thing that is being overlooked by most is what type of bacteria MAP actually is. It's a pleomorphic bacteria or L-form bacteria along with a few other types most notably Helicobacter pylori which causes stomach ulcers and Borrelia burgdorgeri which can cause lyme disease. given the success rate of getting a real deal lyme disease diagnosis (very low) using current culturing technology it would be easy for me to correlate the success rate of also culturing other bacterias of the same type in a lab, or lack thereof, to getting a definite answer to if a bacteria such as MAP actually causes Crohn's Disease. these are very hard bacterias to culture and can even invade white blood cells and live there. check it out here: http://bacteriality.com/2007/08/15/l-forms/ (thanks to D Bergy for finding this website and posting it in another thread)

if you are interested in some video documentaries that talk about the dairy industry and specifically the milk pastuerization process v. raw milk check youtube link.. very interesting stuff here too which could help explain why milk could be a carrier of some bad bacterias etc.

http://www.youtube.com/watch?v=uHcyAH0rOPE&feature=related

there are also some other theories about the role of oxdiation in the body and specifically some iron transport problems in the intestinal tract contributing to the disease. this along with certain protein allergies has been suggested to be the cause as well. really good info here: http://www.krysalis.net/crohn.htm

there are also theories on the use of probiotics in the management of IBS and IBD. some have more success than others and some books say it works better with specific diets etc. etc. it is definetly worth looking into as some people in the medical community are starting to give it more thought rather than dismissing it immediately. this and fish oil.

the LDN approach seems like it might be a very good way to go as well. Kev and D Bergy both use it and both have had success with it. there are threads here to read about it and i'm sure they would provide info if you ask.

another approach that some scientists are devloping are the use of whipworms in the intestinal tract. i believe it is called the Helminthic therapy and they basically innoculate you with whipworms which then begin to live in your digestive tract and give your immune system a target to attack rather than your own tissues. as crazy as it may sound they are getting some success out of it with minor side effects. you would probably have to fly to Germany or Mexico to get this though.

hope this helps some and hope your son is doing ok. this disease can be a bitch but it is good you are taking a proactive approach. the FDA approved methods dont have all the answers to everything and it is important to look into every possible avenue to get some relief.

Thanks for your comments. When I mentioned to my son's doctor that we were looking into alternative nutrition approaches, he went into a rant about how much money is spent on supplements (which I agree is true, though he was suggesting that it is all wasted spending) and that the medicines prescribed by the medical community are all tested and approved by federal agencies. I had to hold back and reply that cigarettes are also approved by federal agencies.

 

[dad_01]

the MAP link has been discussed for years now. there are some studies that suggest the link and others that are fairly inconclusive. CCFA has posted more than once about the "lack of evidence" for a MAP connection through some studies but the one thing that is being overlooked by most is what type of bacteria MAP actually is. It's a pleomorphic bacteria or L-form bacteria along with a few other types most notably Helicobacter pylori which causes stomach ulcers and Borrelia burgdorgeri which can cause lyme disease. given the success rate of getting a real deal lyme disease diagnosis (very low) using current culturing technology it would be easy for me to correlate the success rate of also culturing other bacterias of the same type in a lab, or lack thereof, to getting a definite answer to if a bacteria such as MAP actually causes Crohn's Disease. these are very hard bacterias to culture and can even invade white blood cells and live there. check it out here: http://bacteriality.com/2007/08/15/l-forms/ (thanks to D Bergy for finding this website and posting it in another thread)

if you are interested in some video documentaries that talk about the dairy industry and specifically the milk pastuerization process v. raw milk check youtube link.. very interesting stuff here too which could help explain why milk could be a carrier of some bad bacterias etc.

http://www.youtube.com/watch?v=uHcyAH0rOPE&feature=related

there are also some other theories about the role of oxdiation in the body and specifically some iron transport problems in the intestinal tract contributing to the disease. this along with certain protein allergies has been suggested to be the cause as well. really good info here: http://www.krysalis.net/crohn.htm

there are also theories on the use of probiotics in the management of IBS and IBD. some have more success than others and some books say it works better with specific diets etc. etc. it is definetly worth looking into as some people in the medical community are starting to give it more thought rather than dismissing it immediately. this and fish oil.

the LDN approach seems like it might be a very good way to go as well. Kev and D Bergy both use it and both have had success with it. there are threads here to read about it and i'm sure they would provide info if you ask.

another approach that some scientists are devloping are the use of whipworms in the intestinal tract. i believe it is called the Helminthic therapy and they basically innoculate you with whipworms which then begin to live in your digestive tract and give your immune system a target to attack rather than your own tissues. as crazy as it may sound they are getting some success out of it with minor side effects. you would probably have to fly to Germany or Mexico to get this though.

hope this helps some and hope your son is doing ok. this disease can be a bitch but it is good you are taking a proactive approach. the FDA approved methods dont have all the answers to everything and it is important to look into every
possible avenue to get some relief.

This disease is a bitch. The approach I'm taking is to be my son's own advocate and not blindly accept, and follow, what we're told, regardless of who it is.

It takes a lot of work to even get a slight understanding of what is going on.

I'm sorry my son caught the disease so early, before his major growth spurts, but we'll deal with it the best we can.

 

[dad_01]

a couple things real quick to think about.. most of these low carb diets are also suggested for use in chronic candida albicans infections. this yeast lives naturally in the body (mostly in the terminal ileum where alot of people with Crohn's have their trouble) but it is always in check and kept in low concentrations by other intestinal bacterias. the theory is that antibiotics and steroid treatment deplete the body of good and bad bacteria at the same time giving candida a chance to proliferate. it can mutate into a fungus and produce rhizomes which are roots in the intestinal tract making it hard as hell to completely get rid of. this is where people have had some success in probiotic therapy granted it could be killing sometihng other than candida (sticky e. coli comes to mind).

on another note, most of my problems at the moment come from cramping after eating something that doesnt agree with me completely. i have significantly less active disease than when i was first diagnosed ~4 years ago and i have used probitiocs for a while now along with changes in diet and other things as well. lately i have been using ALOT of extra virgin olive oil in my diet and most of my cramping problems have been resolved. some of the crohn's books suggest to cook with it or coconut oil or others. there are even scientific studies saying the classic Mediterranean diet plays a huge role in the reason most people from that geographical area do not get bowel cancers or have a high rate of heart disease and olive oil is one of the main ingredients. the oil itself is high in monounsaturated fats and antioxidants as well which could lend some credence to the DMSO and oxidative stress theory proposed above.. i am, however, one person and i'm sure not everyone will be cured by eating some foods with olive oil in it -- http://www.msnbc.msn.com/id/11758647/

One of the alternative nutritionists we have consulted feels that coconut oil is the best fat / oil to use. Apparently it got a bad rap a number of years ago from a study that was not structured correctly.

Coconut oil, however, does have sort of a heavy, strongish taste, so I'm going to look into getting it in pill form and try that.

Thanks.

 

[dad_01]

Another popular diet and theory for Crohn's is the Specific Carbohydrate Diet. The diet is hard to follow (I couldn't do it!!!); but if you can , it's worth the try. the prmises of the diet are:

The diet was originally developed by Dr. Sydney Hass, and is based on the same guidelines Gottschall's daughter followed decades ago in her bout with Ulcerative colitis. The rationale of the diet described in Breaking the Vicious Cycle is as follows:

When the body receives complex carbohydrates (disaccharides or polysaccharides) these substances must be broken down before they can be absorbed.
In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish.
Bacterial overgrowth is accordingly followed by a significant increase in the waste and other irritants they produce.
Irritation in the lining of the digestive tract results in the overproduction of mucus and injury to the digestive tract, which in turn causes malabsorption and makes it even more difficult to maintain proper digestion.
The purpose of the diet is to break the ongoing cycle caused by an overpopulation of harmful bacteria in the gut. When the body is able to absorb the proper nutrients from simple sugars and other carbohydrates that are easy to digest, the inflammation and other complications caused by many auto-immune diseases can be lessened. The goal is to rid the body of complex saccharides so that the gut will be able to heal itself and enable further healing to occur.

The method of the diet is to keep the gutflora well balanced and to allow the gut to digest all of the food it is given, thereby starving out the harmful bacteria.

http://en.wikipedia.org/wiki/Specific_Carbohydrate_Diet

http://www.scdiet.org/

Is there a connection between the specific carbohydrate diet and the MAP and e. coli theory of crohns?

 

[dad_01]

Dad
I see how it's easy to be skeptical of the drug companies and how medical professionals are trained. However, I think there is no way to discount the fact that there is a large population of crohn's sufferers that have adhered to strict diets whether recommend or not. For some it has aided in remission but for others it did nothing to improve the patients situation.
It is true that drug companies seem like they are primarily out to get our money. However, I have never read information from drug companies that would indicate they dis-credit a diet related to treatment.
The truth is that you're going through what most of us have...that is, you're trying to find the common link. We have all asked the same questions and mostly come up with differing answers and opinions.

For those who suffer with Crohn's personally it does irk us when people that do not have Crohn's suggests the solution or problem is diet only. All evidence indicates that this disease is out of our hands as far as cause goes.

Good points. I'm not saying the drug companies would necessarily discredit a dietary solution to an illness. I just don't think they will go out of their way to fund a study that would support a nutritional approach to healing.

Why buy their drugs for hundreds or thousands of dollars a year when you can just eat healthy.

 

[dad_01]

Dad
I see how it's easy to be skeptical of the drug companies and how medical professionals are trained. However, I think there is no way to discount the fact that there is a large population of crohn's sufferers that have adhered to strict diets whether recommend or not. For some it has aided in remission but for others it did nothing to improve the patients situation.
It is true that drug companies seem like they are primarily out to get our money. However, I have never read information from drug companies that would indicate they dis-credit a diet related to treatment.
The truth is that you're going through what most of us have...that is, you're trying to find the common link. We have all asked the same questions and mostly come up with differing answers and opinions.

For those who suffer with Crohn's personally it does irk us when people that do not have Crohn's suggests the solution or problem is diet only. All evidence indicates that this disease is out of our hands as far as cause goes.

And please, I'm not saying there isn't a very important role for medicine in the treatment of any illness. I'm not rejecting modern medicine.

I'm just looking to see if there is a way to minimize whatever medicine my son might be taking.

 

[D Bergy]

Since I am fairly well convinced that bacteria plays a large role in this disease, I just follow the general objective of making my intestinal tract a bad environment for the suspect bacteria to grow. Whether it is diet, supplement, chemical or drug related treatment, I shoot for the same objective.

When the body receives complex carbohydrates (disaccharides or polysaccharides) these substances must be broken down before they can be absorbed.
In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish.

This is where the specific carbohydrate diet comes into play, as it discourages the bad bacteria from growing. I simply do not have the discipline to follow this diet so I use other methods to accomplish the same thing.

It is pretty short sighted to exclude diet or supplements as a possible treatment by your doctor, in my opinion. I do not relate to a thought process that says no food will make any difference in your disease when almost all of us have foods we cannot eat without major problems. There is no logic in that at all. If some foods make our condition worse, does it not stand to reason that others may make our condition better?

I agree with you completely that everything should be considered, but nothing should be blindly accepted. That is why we are given a brain. We may as well use it.

Dan

 

[dad_01]

And I am thankful for this bulletin board. It is a great place to share experiences, thoughts, hopes, a great place to pose questions and comments looking for feedback.

 

[BWS1982]

I admire your advocacy in your son's disease, Dad01, not that my parents don't share concern for my well being, but I wish they were as into it as you are, sometimes....sometimes I think they have just as much concern, but are showing in their own (sometimes obnoxious) ways....

other times I am glad they're there for me.

 

[dad_01]

Thanks for your compliment. I wish I was able to do more but I'm doing what I can.

My son is only 11 years old and i don't want him to be overwhelmed by everything - he's already dealing wiht a lot and he's been an absolute trooper about it. He's been poked and prodded in places that he never would have guessed that someone would need to be in order to make a medical diagnosis.

It's funny - when we were preparing him for his colonoscopy last year,, we were describing the process, from the fasting beforehand, to the enema, to the rest of the process. When we described the actual colonoscopy procedure, he responded with an observation I thought funny and true - he said "you're kidding, there must be a better way than that to do an examination." It struck me as funny that, with all the multi-million dollara technology and medical gadgetry, this exam boils down the to doctors sticking a tube up your butt.

 

[Colt]

Modern medical gadgetry does have a better solution. The camera pill. It's vastly superior. Crohn's can be anywhere in the digestive tract and cameras at the end of tubes can only see the 1/5 of it. So, if it's focuses in a specific section they have a 1 in 5 chance that it's even in a place they are looking. That's not counting the good chance that small damage will be overlooked. The thing is, though, that almost no one can afford the pill so it's reserved to countries with public health care.

 

[Jeff D.]

The other problem with the pill is that is can get stuck and could possibly need surgery to come out if it doesn't want to.

 

[Mazen]

I'm Sorry that some people are using this forum for racist jokes.... This forum is for people affected by disease, and it doesn't differentiate which race or color or religion you are. We share the same suffering and the same emotions... So please administrator remove this previous post. Thanks

 

[Guest]

I'm Sorry that some people are using this forum for racist jokes.... This forum is for people affected by disease, and it doesn't differentiate which race or color or religion you are. We share the same suffering and the same emotions... So please administrator remove this previous post. Thanks

thanks for the alert Mazen. sorted now

 

[Leelee]

One theory that I have come across is that there is an imbalance in the body after medications such as antibiotics kill off good and bad bacteria. If you do not replenish the good bacteria you will be overrun with the bad kind which can lead to all sorts of inflammatory illnesses including Crohn's. Most people with chronic inflammation need nutritional support such as Omega 3 oil, vit C and D, and probiotics. These are all supplements that we should be taking anyway even during a remission of symptoms. Some people also believe that DMSO and melatonin which are potent antioxidants help the immune system rid the body of harmful microbes such as yeast, fungus and bacteria.

 

[momofzach]

Kev, I guess, but I don' t know if I completely agree with that.

I'm annoyed from the apparent lack of importance from the conventional medical community towards diet, though it does seem that some medical schools are starting to place more importance on it.

It's hard for me not to think that it could be influenced by the large pharmaceuticals; I'm wondering how much influence they have on medical school cirriculums, and how much influence they have on the U.S. Food and Drug Administration. Oftentimes, these regulatory agencies are populated by people from the industries that they are supposed to be overseeing.

Dad 01, I agree with you that nutrition is fundamental to our overall health, and therefore more importance should be placed on it. I have been pleased to see several doctors in my area getting educated and certified in holistic care and overall wellness of the patient, and have received some valuable advice because of it. It's a good trend in a positive direction.

 

[hugh]

paleo worked for me
(SCD is similar but not as strict and didn't work for me)

All the talk 'about how hard diet is' is like listening to smoker talking about quitting,
The first two weeks is hard, and there are slips, but you get back up and carry on
(yes, i was a smoker too)

 

[Bec215]

Oddly, since the announcement in 2008 of a study finding genetic indicators of a predisposition to develop IBD, I haven't seen people looking at so much is the hereditary component... Three generations of women in my family have this disease! My mother has UC, my maternal aunt has UC, my maternal first cousin and second cousins have Crohn's, my maternal grandmother had a 'bowel disease' that based on family stories and our present knowledge, was most certainly UC or Crohn's.

Clearly bacteria play a role - otherwise, Flagyl wouldn't help people, and probiotics wouldn't help people.... but there must be some genetic component or immune system trigger that is also involved.

I have heard too many stories of people who got a flu bug, or an intestinal bug while traveling, and they never felt fully recovered, and months or a year later they were diagnosed with Crohn's.

Anecdotally if you read various websites, there's an apparent correlation where women with Crohn's and IBD experience a ramp-up in symptoms during puberty, menstruation, pregnancy, and menopause... that would link some activity to hormones - but I never see any research being done on that direction. (I'd heard at one point the vast majority of diagnosed patients are female, but I have no idea if that's accurate.) Most research focuses on men's bodies because they are (biologically) simpler... shame.

I long subscribed to the theory of a hyper-vigilant immune system going haywire, needing to be re-set, after seeing the study where French doctors found 80%+ remission rates by having moderate to severe CD patients drink porcine tape worm eggs in Gatorade... that was based on the theory if you re-set the immune system, you can put someone into remission. LDN therapy may work along the same lines... resetting, somehow, the immune system. And for some people, diet or probiotics alone may work, if they're system is responsive to being reset by that alone while others need a more major 'shakeup'.

The genetic pre-disposition may simply increase the probability that a flu virus or other bug will trigger the disease the first time... I am still looking for the NIH study that ties all the other studies together. Fingers crossed!