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As Dr Hyman said, "Is your Dr. Making You Sick?"

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I had suffered in agony and pain. I suffered through out my early childhood, but kept it to myself. My mother had a clue when a doctor said he thought I had too much acid and they told her to have me drink jello to coat my stomach when I was two. My parents had no idea I was sick until I started to bleed internally at the age of 171/2-18years old. I have had pain & fatigue for many years off an on and I did not find relief until I realized my medicine isn't helping me it's making things worse. It only masked the problem it was not fixing it. I feared the consequences of it's long term use. I researched studies in australia and read about similar diseases in cows (Johnes Disease). I read and read and searched. I heard of the downfalls of steroids and how it damaged the body in so many ways it was not worth taking. I avoided it by taking Pentasa at 18. I am now 30 years old and off the medications. I use Probiotics, exercise, and diet to maintain my health. Having healthy bacteria and getting rid of the bad bacteria can change your life and your symptoms. I came to this conclusion with the help of another long term sufferer who had a great Dr in DC.

There are few Dr.s out there, but they are there and they are willing to truly find out what is wrong and fix the problem not mask it.

Here is one of those Dr.s....

Dr. Hyman
 
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DustyKat

Super Moderator
Hi ColorsofHeaven,

I am very happy to read that you have found a path that controls your disease so well and gives you lasting good health. :)

This is primarily an adult forum and as such we are free to make our own decisions on any information that is posted here. In regards to Dr Hyman, I personally don’t believe in what he says and what he stands for but again, that is only my opinion after having researched him for some time now.

I wish you continued good health and happiness.

Dusty. xxx
 
Hi ColorsofHeaven,

I am very happy to read that you have found a path that controls your disease so well and gives you lasting good health. :)

This is primarily an adult forum and as such we are free to make our own decisions on any information that is posted here. In regards to Dr Hyman, I personally don’t believe in what he says and what he stands for but again, that is only my opinion after having researched him for some time now.

I wish you continued good health and happiness.

Dusty. xxx
Yea on his page he claims integrative medicine aims to treat the causes of disease rather then the symptoms, but this is exactly what scientists in conventional medicine are trying to do everyday, if they haven't figured out everything yet, its unlikely integrative medicine has either. and the idea of treating the whole person is good in itself, no doctor is against improving your diet by adding fruits and vegetables I'm sure and getting some exercise, but that generally doesn't treat specific disease symptoms, which is a real phenomena and reality of diseases, they can be pretty specific to parts of the body such as inflammation of the ileum in crohn's, even though other symptoms can include energy levels and cognitive/affective processes. It's a good idea to try and understand and treat the specific process that is unique to that disease state, if that's where the abnormality is, then start there, we will eventually get to the first causes of disease as science progresses though.

Also check out my link on fecal transplants.
 
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You must have very mild Crohn's. I'm glad you're able to control your symptoms with probiotics, exercise and diet. If I tried that, I'd soon be in the hospital. I hope you are still getting tested annually at least, to make sure that the disease is not silently destroying your intestines.
I think it's very wrong of Dr. Hyman to suggest that people shouldn't take their prescription medication.
He says: “A pill for every ill”, which is an outdated disease-care model that does nothing to identify and fix the underlying cause(s) of a patient’s symptoms."
They have not yet DISCOVERED the cause of Crohn's disease, therefore there is no cure for it.
I'm going to stop my rant here. You managed to make me upset, which is very hard to do.
 
Hi ColorsofHeaven,

I'm really pleased you're enjoying good health at the moment and long may it continue.

But since this forum is read by a good many people who are new to this disease I feel the need to point out some things which your account of your own experience (relating only to a sample size of one) can't do - and which may be misleading for those who don't yet have the perspective of years living with this disease and seeing countless studies and experiences of other Crohnies.

My reply got a little long (as all my replies do so I've put what I think are the important points in bold!)

I understand that you felt that your medication was making things worse - either because of side effects or because it wasn't working to control your disease. But with appropriate choice and monitoring of medication this should never be the case. Your GI should work with you to balance the risks and benefits of the medication, monitor your disease's response and adjust or change medication as needed due to lack of response or side effects.

I don't know what medications were made available to you when you were pursuing traditional medicine treatments for Crohn's but nowadays there are many more treatment options so that it should be possible to tailor the approach to the patient and avoid the situation you found yourself in (feeling that the medications made things worse and did not treat the underlying disease in a satisfactory way). Of course you need a GI who is up with the current thinking - and not all are so I don't think it will hurt to say the following:

1) Exclusive Enteral Nutrition is an effective and side effect free alternative to prednisone (so it might well have been possible for you to avoid what sound like repeated and perhaps prolonged use of steroids)

2) Budesonide can also be used when appropriate to minimise side effects and damage from steroids

3) Infliximab, and other biologics, and immunosuppressants can help achieve remission and when used as maintenance therapy increase the likelihood of prolonged remission and minimize exposure to steroids. Used appropriately (i.e. as 'top down' therapy) they should also reduce the likelihood of surgery.

4) Traditional medicine includes research into diet - such as the IBD-AID diet - the microbiome and MAP. It is not necessary to eschew traditional medicine to pursue these therapies

Here are a couple more things that (the way you've written them) might give people the wrong impression, so I want to clarify:

*prednisone can be very useful for many people with Crohn's when used correctly as a short term medication to get inflammation (a flare) under control and achieve remission. Used appropriately like this the benefits far outweigh the risks. Under treated Crohn's disease is far more dangerous.

*most people cannot avoid prednisone by taking Pentasa. It's great that Pentasa worked for your disease but as others have said Pentasa only works for those with the mildest disease, and only in the part of the bowel targeted by this medicine.

* You mention Johne's disease but this did not apparently lead you to anti MAP antibiotic therapy - this is a promising area of research but your treatment is not equivalent to anti MAP therapy to which you allude and I think this could be misleading for some people reading your account.

* Probiotics, exercise and diet alone are simply not enough to treat Crohn's disease in the majority of people. We wish it were. I speak for many when I say we've tried. I think it is important to acknowledge the degree of luck involved in being in that small proportion of patients who can treat their disease in such a way and the high degree of risk that you may try that approach and fail - and that out of control Crohn's may in the meantime have caused lasting damage. That's not to say that probiotics, dietary restrictions and exercise can't be very useful adjunctive therapies - but few manage to successfully avoid medication with these therapies alone.

* You are off medication and healthy for now but you are only one person and therefore few conclusions (if any) can be drawn from that. The most useful information comes from large studies of whole patient populations. We simply haven't been able to replicate YOU ;) and try out different therapies and see which is best for you - or to keep one of your clones as a control, and give them a placebo. No one can know what would have happened if you'd stopped all treatments - and we don't know what your future holds. That's why we need studies! I love hearing individual experiences but it's important to distinguish!

* You say that healthy bacteria and getting rid of bad bacteria can change your life and symptoms and I'm sure this is true (I have intractable SIBO so I know this is true for me!) however getting rid of symptoms is sadly not the same as getting rid of inflammation - and inflammation is the biggest danger with Crohn's disease

There are some details you don't include that make it harder to understand your experience and the relevance of your results:
*your disease location and presentation (or phenotype)
*you say your meds were making things worse and masking the problem but you don't say what meds you were on
*the response you observed to those meds - any change in symptoms, inflammatory markers or clinical findings
*you say you were bleeding internally - do you actually mean seeing blood in your bowel movements? Or was your issue something else?
*you say your doctor found out what was wrong and fixed the problem but you don't say how, or indeed what the specific problems were
 
I,ll throw my tuppence in,first I hope you are well ,but there are a thousand diets,lifestyles which supposedly cure crohns but going by the evidence on here on with research are ineffective,no one seems to have proven these holistic lifestyle treatments are anything other than placebo effects and I hope no one is persuaded to stop proper treatment after reading your link.
 
Well it is obvious I upset people with my own take on things. Which is fine. I just know that I had so many different issues in my health that doctors time and time again only made it worse by prescribing the wrong medications that caused my condition to worsen. It would be a very long list if I typed it all out. The fact that people keep stating I must have a mild version is presumptuous and I believe out of their own frustration with their own health placement caused by this disease. In response to one persons comment when I said bleeding I meant literally bleeding internally from three ulcerations in the ileum and was admitted into the hospital (this is how they found out I had Crohns).

24601-In response to you-I read about the disease in cows back when I was 18 years old ( I am now 30 years old-12 years ago) and it lead me to reading about a study in Australia on how particular antibiotics where showing 87% of participants went into complete remission. Which then lead me with further research to using proper probiotics.

When harmful bacteria multiply — resulting in inflammation and damage to the intestines, and chronic episodes of abdominal pain, cramping, diarrhea and other changes in bowel habits.) The thing with bacteria in the gut is that even a good bacteria can become harmful if it becomes to high in numbers. So making a proper ecosystem of flora is key. In which case you would have to have it checked by a doctor and find out exactly what is off in your situation to make sure you are taking in the appropriate bacteria. You cant just take a probiotic and assume it will work...you need the right balance for your system. Everyone is different and no two people are alike, but if it helped me to avoid the path of steroids, surgery, and multiply medications that damage the body over time then maybe it will help someone else to.

Everyone should definitely see a doctor on a consistent bases, but sometimes it's just about finding the right Dr. who is willing to think outside the box. A Dr. who looks at you as a person who needs real specific solutions tailored to you.
 
You haven,t upset anyone,we all hope that some one hits the bullseye with,crohns,cancer,Alzheimer's and any other long term serious conditions but all these treatments are basically unproven and or can,t be replicated in large numbers so are pretty useless it's probably likely that the odd isolated person has recovered from these illnesses but we just haven,t found them because they would be the cure.i personally think that conventional science will find an answer I,ve just watched a documentary about a man with a broken spine who is regaining use in function below the break,amazing,science is the answer and a bit of luck.
 
You'll find a lot of resistance to this kind of thinking here, despite the numerous studies on the strong correlation between diet, AIEC, MAP and Crohn's disease, and the numerous people achieving remission by treating it as a pathogen.

I agree with you, treating the condition with immune-suppressing drugs if it is, in fact, a pathogen could be dangerous and I fear that's what lead to my near-death experience.

Remicade and Humira was, for a time, able to mask the symptoms of the growth of the bacteria, but eventually it was too strong for them to work. My doctors just shook their head and kept me on it and were debating prednizone or azathioprine with Humira despite that being a last resort due to the risk of lymphoma.

You must have very mild Crohn's. I'm glad you're able to control your symptoms with probiotics, exercise and diet.
Crohn's cannot be traditionally measured as mild, moderate or severe. It's in constant fluctuation based on the level of treatment - this is even more true if it is in fact pathogen based.

When I was first brought into the hospital I was diagnosed with severe crohn's and told I had some of the worst inflammation my doctor had seen and I'm responding well to diet alone after remicade and humira failed to work, it took a long time to heal my gut to this point, a lot of careful, highly restricted dieting and I've had a lot of setbacks - all of which I could have avoided if I knew then what I knew now because they make sense within the pathogen explanation.

The only other explanation I could see is that not all Crohn's is caused by the pathogens - but many are, in which case it's still dangerous for doctors to treat it all under an umbrella diagnoses.

We have all the evidence to suggest that, at the very least, the symptoms are the result of intestinal bacteria. The cause may simply be genetic inability to regulate that bacteria, since the aleles linked to Crohn's are all exactly that.

It's very frustrating when doctors and the community turn a blind eye to all the studies and correlations on this topic.

I'm not saying we should stop using biologics as treatment - they block the TNF-alpha that the AIEC causes, but we have to treat the cause as well as the symptoms, or true remission will never be possible. We shouldn't be doomed to a life of a limited diet and biologics to cope with a treatable condition.

E. Coli evidence
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4133521/
http://www.ncbi.nlm.nih.gov/pubmed/25809337

MAP studies
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654961/


Dietary links
http://www.researchgate.net/publica..._and_Treatment_of_Inflammatory_Bowel_Diseases

http://www.crohnsforum.com/showthread.php?t=57893

Diet with a high rate of maintain remission in Crohn's patients
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/figure/F2/
 
Yes CD can wax or wane from mild to severe. That being said there are times when regardless of current state the disease is labeled it can still be considered a severe case, i.e. Crohns would be considered severe if you have fistulizing Crohns or stricturing disease.
 
Yes CD can wax or wane from mild to severe. That being said there are times when regardless of current state the disease is labeled it can still be considered a severe case, i.e. Crohns would be considered severe if you have fistulizing Crohns or stricturing disease.
Saying that someone got better with diet means they can't have had severe Crohn's is just outrageous then.

I had a fistula and it's healed more through diet alone with no medications than it ever did on biologics, prednizone or azathioprine.

Again, I'm not saying this will work for everyone, just saying that it's unfair to act as if people who have gone through cycles of strict dieting to control their crohn's just had it easy in life or never had severe crohn's.

I used to sleep about 4 hours a day because I was too busy puking or going to the bathroom, I constantly had pain like a knife in my abdomen and couldn't stand upright, and I puked bile twice a day. I was well on my way out the door because I believed in doctor's ability to fix me with medications.
 
I checked the diet out and I,m absolutely certain that only a tiny part of the population could keep to it and that is its fundamental weakness,I,m sure diet is a factor but eating seaweed and hard to get ingredients won,t work!The thing to remember about the ingredients in that diet is scarcity,some big company could turn it out but more than likely would resort to industrial farming and we,d end up at square one.i won,t even go down the bored senseless route.give me a burger.
P.s could everyone afford it?
 
I don't think the whole Crohn's community is ignoring that diet has a role to play in treating Crohn's and that this might even be a significantly effective treatment (at least for a proportion of patients) if it can be better understood, and that better understanding may allow us to select which patients will most benefit from dietary therapy and which other therapies may also be needed for others.

I acknowledge that it is very frustrating that it seems to have taken so long for much research to focus on diet but there are beginning to be a lot more studies done.

However we are still in the position of not knowing enough about the role diet plays for most people with Crohn's and this can mean taking a purely dietary approach to treating Crohn's comes with a high risk of undercontrolled disease causing disease progression and complications.

It seems a few have a lot of luck in finding a diet very quickly that controls their disease (or that coincides with remission). For many though much time is spent trying different diets and refining their dietary restrictions without sufficient success to control the disease. In the time that these variations on diets are tried, irreversible damage can be done and the opportunity to control inflammation by other therapies can be lost.

As adults we all have the right to choose whichever treatments we feel best, but I think we would all, hopefully, agree that whichever treatment we choose that we should aim to reach deep clinical, biochemical and endoscopic remission.

I think the best chance that we have of more people being able to achieve deep remission with diet (alone or along with other treatments) is to continue to research the effect of diet on Crohn's

Here are some studies that are currently recruiting in case anyone would like to take part and contribute to that research:
Trial in healthy adults - looking at gut microbiota in Glasgow
https://clinicaltrials.gov/ct2/show/NCT02426567?term=crohn's+diet&rank=2

Elimination diet at Johns Hopkins
https://clinicaltrials.gov/ct2/show/NCT01897090

SCD as maintenance at Stanford
https://clinicaltrials.gov/ct2/show/NCT01749813?term=crohn's+diet&rank=7

SCD and PEN at Massachusetts General
https://clinicaltrials.gov/ct2/show/NCT02412553?term=crohn's+diet&rank=18

SCD in children in Seattle Children's
https://clinicaltrials.gov/ct2/show/NCT02213835?term=crohn's+diet&rank=9

Normal vs. restricted diet at University of Pennsylvania
https://clinicaltrials.gov/ct2/show/NCT01926730?term=crohn's+diet&rank=12
 
I checked the diet out and I,m absolutely certain that only a tiny part of the population could keep to it and that is its fundamental weakness,I,m sure diet is a factor but eating seaweed and hard to get ingredients won,t work!The thing to remember about the ingredients in that diet is scarcity,some big company could turn it out but more than likely would resort to industrial farming and we,d end up at square one.i won,t even go down the bored senseless route.give me a burger.
P.s could everyone afford it?
It's not the 'only' diet that works, it's proof of concept.

In fact I know that diet wouldn't work for me because I can't have potatoes or brown rice.
 
I checked the diet out and I,m absolutely certain that only a tiny part of the population could keep to it and that is its fundamental weakness,I,m sure diet is a factor but eating seaweed and hard to get ingredients won,t work!The thing to remember about the ingredients in that diet is scarcity,some big company could turn it out but more than likely would resort to industrial farming and we,d end up at square one.i won,t even go down the bored senseless route.give me a burger.
P.s could everyone afford it?
I just want to point out that, for some of us, the problem with diets is not that we can't stick to them, it's that diets don't work! (By "diets" I mean the various alternative diets, or whatever you'd call them, that claim to treat illness but which aren't recognised by conventional medicine.)
 
Everyone keeps arguing about diets. There is no one diet for all people with Crohns Disease. What I was stating was about probiotics and bacteria in the gut. Depending on you and what type of ecosystem you have in your gut. It will cause you to have different issues and bacterial offsets when you consume certain food(s) that those type of bacteria feed off of and grow in numbers. It will cause inflammation/infection. Diet is one part of it and not the whole answer. So maybe these diets did not work because they fed the bacteria that was overabundant in your system. Oddly enough when you go to either kill overabundant bacteria with detox/diet and replace healthy bacteria you will have die off at times that causes you to feel week for awhile before you get better. Same with Steroid medicines your body will flare worse due to withdrawal symptoms. So when it rains it pours and just because you don't feel better immediately doesn't mean you won't eventually. Find a doctor who can help check the flora offset in your gut and get you back on track with live probiotics and not the dead ones off the shelf or ones with bacteria that will increase your problems.
 
Unless many months counts as "immediately", diets were not working for me. The "die off" theory was used by alternative "doctors" and nutritionists to explain why I was getting worse, but it eventually became clear that I was just getting worse. I'm sorry to disagree with your advice, it's just that it sounds so much like very bad advice that I've been given in the past.
 
Hi ColorsofHeaven,

I really would like to know more about how your doctor assessed what precisely was off-balance about the flora in your gut. It's a very genuine question. :)
So making a proper ecosystem of flora is key. In which case you would have to have it checked by a doctor and find out exactly what is off in your situation to make sure you are taking in the appropriate bacteria.
And I realise that the conclusions are individual but if you could give us the specifics of your diagnosis from Dr Hyman and which bacteria you needed to eradicate (or reduce) and those you needed to repopulate (or increase) then I think people would find that very interesting.

Also how often do you now have scopes or other imaging? And blood tests and fecal calprotectin tests? Does Dr Hyman do these tests or do you have another GI for that?

Did Dr Hyman test for MAP? Or AIEC?

And, again I know this is individual, but what diet did you follow to rebalance your bacteria? And do you follow the same diet now?

Does Dr Hyman keep checking the flora offset in your gut? Or do you not need to repeat these tests?

Thanks in advance for answering
 
The what diet as you,ve probably noticed is a fairly hot subject of conversation here as there seems to be loads of opinions but little evidence any of them make an ounce of difference,I,m not including the shakes only one that doctors prescribe for people having a bad spell that's different.the only advice I,ve had from hospital is keep it as varied as possible but that applies to non crohnies as well.
 
The what diet as you,ve probably noticed is a fairly hot subject of conversation here as there seems to be loads of opinions but little evidence any of them make an ounce of difference,I,m not including the shakes only one that doctors prescribe for people having a bad spell that's different.the only advice I,ve had from hospital is keep it as varied as possible but that applies to non crohnies as well.
Little evidence?

There's tons of people who have self medicated with diet, the thing is doctors just say it's the drugs, and if you're not taking drugs you probably don't see a doctor, so it never gets noticed.

When my symptoms got significantly better I was off medications of all kinds and changed diets and my doctors were still hesitant to accept that explanation, they didn't want to consider Humira and even Prednizone weren't working, but I got better off both.

They told me my gastric sphincter was nearly swollen closed so they couldn't get the endoscope past my stomach, when I cut gluten it got better.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877178/figure/F2/

The evidence is there, you can read about it in pubmed studies.

Instead of just looking at crohn's you have to look at the pathogens that cause it: MAP and AIEC. You'll find diets that Crohn's patients respond well to have a direct link to them. Low-carb because carbs feed pathogens.

The problem is is determining the variations in diet. Most likely this comes down to SIBO and leaky gut. When the pathogens invade and whatever chemistries like the bile salt in the gut that change in Crohn's patients, so do the bacteria, and because of that the gut bacteria is different from patient to patient.

Someone like me probably has lost most of them since I can't have any grains except oats, and any small amount of simple sugars will trigger me.

But there's also a difference between trigger foods - foods that make your disease worse - and sensitivities, things like fiber that are just too hard to digest for an inflamed gut but don't actually feed the pathogens.

If you just look at it as an inflammatory disease, then all food is the same, either causes inflammation or doesn't. You're limiting your ability to decipher why things do what they do.
 
Saying that someone got better with diet means they can't have had severe Crohn's is just outrageous then.

I had a fistula and it's healed more through diet alone with no medications than it ever did on biologics, prednizone or azathioprine.

Again, I'm not saying this will work for everyone, just saying that it's unfair to act as if people who have gone through cycles of strict dieting to control their crohn's just had it easy in life or never had severe crohn's.

I used to sleep about 4 hours a day because I was too busy puking or going to the bathroom, I constantly had pain like a knife in my abdomen and couldn't stand upright, and I puked bile twice a day. I was well on my way out the door because I believed in doctor's ability to fix me with medications.

i have generally rejected modern medicine shortly before i was diagnosed with crohn's. I have used very little meds for these six years and my doctors have baffled to outright furious with me seemingly because of it. I credit ideas from reading breaking the vicious cycle/specific carbohydrate diet and avoiding meat to my "success". i wouldn't call it success liek you woudl want to define it, because things were are bad for me, whats good is ive always had control over my diarhea, but my brain doesn't work well i have memory issues ADD and anxiety/depression, I've never had any complications nor had to go to the hospital for anything. So the power of dietary changes is real and will agree with you on that. to this day i still struggle with energy and brain function though, and im taking a small bit of lialda which barely does anything. Fecal transplants have also helped me and i still plan on doing them again.
 
The what diet as you,ve probably noticed is a fairly hot subject of conversation here as there seems to be loads of opinions but little evidence any of them make an ounce of difference,I,m not including the shakes only one that doctors prescribe for people having a bad spell that's different.the only advice I,ve had from hospital is keep it as varied as possible but that applies to non crohnies as well.
I'm sorry Axelfl, I'm not sure I understand your post correctly. By '"shakes" do you mean supplements like Ensure, Fortisip, etc.? And what do doctors prescribe to people "having a bad spell"? Are you saying that doctors pay attention to patients' nutrition when it comes to supplements when people are very ill because there's evidence showing that that helps, but not to any aspects of diet besides that? :confused: I'm sorry for all the questions, I just want to make sure I've understood you. My doctors seem almost obsessed with my diet and nutrition, but much more so because I'm very ill.
 
Guys, I appreciate everyone's enthusiasm about different treatments but let's try to keep this thread on track! :)

It was started by ColorsofHeaven to tell us about her particular experience with Crohn's and the treatment she found.

Since the details she's given so far are scant let's not dominate the thread by discussing diet etc. in general.

We don't want ColorsofHeaven to feel like she can't come back to the thread and share more because things have got heated!
 

Jennifer

Adminstrator
Staff member
Location
SLO
So making a proper ecosystem of flora is key. In which case you would have to have it checked by a doctor and find out exactly what is off in your situation to make sure you are taking in the appropriate bacteria. You cant just take a probiotic and assume it will work...you need the right balance for your system to increase the numbers of the ones you're lacking in.

...

So maybe these diets did not work because they fed the bacteria that was overabundant in your system.
Hi ColorsofHeaven. :) May I ask what test your doctor does to find out which specific bacteria your gut is lacking in or has too many of? I'm aware of testing for SIBO (simple breath test) but this is the first I've heard of a doctor regularly testing to see which bacteria you have and how to reduce their numbers through reducing certain foods and providing the correct probiotic.

Bacteria tend to feed off of sugar so reducing that can help in general to reduce the number of certain kinds of bacteria in your gut and taking high doses of live bacteria can help to increase your numbers but there's no scientific evidence that shows that taking probiotics does anything for Crohn's disease. http://www.ncbi.nlm.nih.gov/pubmed/24180407 For UC yes but not Crohn's.

When was your last scope?
 
Can I just add that I think this statement you made is absolutely right. I think finding the right doctor(s) is one of the most important things one can do for their health:

Everyone should definitely see a doctor on a consistent bases, but sometimes it's just about finding the right Dr. who is willing to think outside the box. A Dr. who looks at you as a person who needs real specific solutions tailored to you.
 
I'm okay with everyone posting their thoughts and opinions. It's okay if people question or disagree on my statements based off their own experiences. I was told by one of my college professors that you can't come to a solution without discussing it. Solutions and compromising are the results of arguments. We wouldn't be human if we didn't. I look at this as a good thing, everyone's opinion matters, and everyone deserves to be heard.
Now truth be told my husband has told me I'm not always the best at communicating it all well. I tend to shorten things and it tends to leave out some details.
Which can then lead to misinterpretations on my actual point I want to get across. I am working on it..lol.
Now, I am at work and have to work on getting the Rolling Year to Date Sales and Yield forecasting out to my boss. It's imperative as He uses it to decide how much product they will purchase from the growers and he is down at the factory this week. I will get back on here later today and get back to people.

Harvard Medical School Health Publication on Probiotics:
http://www.health.harvard.edu/vitamins-and-supplements/health-benefits-of-taking-probiotics
 

Jennifer

Adminstrator
Staff member
Location
SLO
That's from 2005. The link I provided above is from 2014. Yes probiotics help with a number of illnesses however Crohn's Disease is not one of them. If they help alleviate some of your symptoms then that's awesome. :) Just be sure to have regular testing done to make sure that your inflammation is under control so you can help prevent further damage.
 
Honestly I've taken probiotics from cheap to $50+ therapeutic grade, home made kefir and sauerkraut, store bought miso, taken half a bottle of probiotics a day, I've never gotten any effect, positive or negative.

I think kefir might have helped once when I was having problems with lactose but it could have been some other variable I overlooked.
 
My primary care suggested probiotics. I tried them, and whether coincidence or not over the month and a half i was taking them i felt actively worse. New GI today said that if i didnt feel they helped then we could drop em
 
I think it's important to consider the individual and having a doctor whose does that is critical
A lot of studies make blanket statements which fit the masses but not everyone
My kiddo has crohns but has constipation as a main sign/ rectal involvement ( not fissures or abscesses just pure rectal inflammation ) and oddly enough improved on probiotics .

Does any of these things apply to 99% of those with crohns
Not at all
But having a doc who takes time to figure out what does work for the crohns patient as an individual not a study is extremely important
 
That's from 2005. The link I provided above is from 2014. Yes probiotics help with a number of illnesses however Crohn's Disease is not one of them. If they help alleviate some of your symptoms then that's awesome. :) Just be sure to have regular testing done to make sure that your inflammation is under control so you can help prevent further damage.

Please see below. Granted, it's a mouse study, but the interaction between probiotcs and a host with a diseased GI system is barely understood. Sure, many crohn's patients, especially with small bowel disease or fibrostenosis or fistulizing disease may not see improvements with priobiotics, but there are some who see tremendous results. It is irresponsible to lump all crohn's patients and say

"Yes probiotics help with a number of illnesses however Crohn's Disease is not one of them"

We simply don't know the interaction between the host immune system with probitocs alone and with other meds. CD/UC are highly individualized diseases-let's stay away from blanket statements, especially ones you cannot backup with evidence.

Hope you are doing well.



Inhibition of Chronic Ulcerative Colitis-associated Adenocarcinoma Development in Mice by VSL#3.

Talero E, Bolivar S, Ávila-Román J, Alcaide A, Fiorucci S, Motilva V.
Inflamm Bowel Dis. 2015 May;21(5):1027-37. doi: 10.1097/MIB.0000000000000346.
PMID: 25793324
Related citations
 
This section is supposed to be for newbies to introduce themselves, not for people pushing their beliefs. Can someone please move this post to Diet & Fitness. Thanks.
 
I concur with Mr Chicken above... we can all post all the studies, but this disease is so.... random sometimes... My PCP said "Oh GI disease... probiotics" but for *me* as an individual, my gastro and i feel like they didnt help me. Its difficult to make anything black and white about Crohns I think. If probiotics help... by all means.... but it gets dicey when we start assuming that because they helped patient X means they will help patient Y
 
I concur with Mr Chicken above... we can all post all the studies, but this disease is so.... random sometimes... My PCP said "Oh GI disease... probiotics" but for *me* as an individual, my gastro and i feel like they didnt help me. Its difficult to make anything black and white about Crohns I think. If probiotics help... by all means.... but it gets dicey when we start assuming that because they helped patient X means they will help patient Y
The problem is more so that we know so little about probiotics, and what we do know is just enough to know how hard they are to use.

Probiotics are native to differnt parts of the intestines, and delivering and populating them there is not well understood.

You have to know what you're missing, how to get them where they need to go, but more importantly why they are missing, and if it's because the environment in the gut doesn't support their ecosystem, then you can keep putting them in and they'll keep dying.

This is why I worry about cutting carbs, it's the only way I feel better, but could I be starving good bacteria too?
 
The replies above, showing the variation in success with probiotics, are exactly why I'd like to hear more about ColorsofHeaven's exact testing and treatment - because she is saying that she was tested for specific bacteria offsets and prescribed probiotics tailored to the results.

I have never heard of a doctor being able to do this so if there are tests that make this possible I think it would be nice to know - as ColorsofHeaven is asserting that you increase the chance of success by knowing which probiotics to supplement and avoid the possibility of making things worse by increasing the wrong populations of bacteria.

I'd hate for anyone to waste valuable time and money going from doctor to doctor seeking a similar outcome but not knowing exactly what kind of testing and treatment they are looking for.

Otherwise as so many of you say it is a case of trial and error - which is true for any treatment but becomes higher risk when there is less evidence to back up the effectiveness of the treatment and if you are relying on this as your sole therapy, as opposed to a potential adjunctive therapy.
 
Id be curious to know that as well. For me as yet probiotics were a non starter as far as helping me. Id love to know how they were able to tailor in that way
 

Jennifer

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Staff member
Location
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Please see below. Granted, it's a mouse study, but the interaction between probiotcs and a host with a diseased GI system is barely understood. Sure, many crohn's patients, especially with small bowel disease or fibrostenosis or fistulizing disease may not see improvements with priobiotics, but there are some who see tremendous results. It is irresponsible to lump all crohn's patients and say

"Yes probiotics help with a number of illnesses however Crohn's Disease is not one of them"

We simply don't know the interaction between the host immune system with probitocs alone and with other meds. CD/UC are highly individualized diseases-let's stay away from blanket statements, especially ones you cannot backup with evidence.

Hope you are doing well... Dr. Bai



Inhibition of Chronic Ulcerative Colitis-associated Adenocarcinoma Development in Mice by VSL#3.

Talero E, Bolivar S, Ávila-Román J, Alcaide A, Fiorucci S, Motilva V.
Inflamm Bowel Dis. 2015 May;21(5):1027-37. doi: 10.1097/MIB.0000000000000346.
PMID: 25793324
Related citation
I meant in regards to inducing and sustaing remission for those who suffer from Crohn's Disease. I did provide a link that stated such. I left open the possibility that probiotics could help some people with symptoms (based off the various testimonials I've heard on the forum over the past five years) but again there's no proof they help with inducing and sustaing remission alone. I also mentioned that there is evidence that it can help those with other illnesses which includes UC if you clicked the link I provided above however this thread in particular is about Crohn's Disease.
 
The type of testing needed are extensive blood work, urine, and stool samples to check what is in your system. They can check a lot from Fecal matter. This is why fecal transplants (from a healthy gut) have helped some patients as fecal matter will contain the same bacteria in your gut.
 
Honestly I've taken probiotics from cheap to $50+ therapeutic grade, home made kefir and sauerkraut, store bought miso, taken half a bottle of probiotics a day, I've never gotten any effect, positive or negative.

I think kefir might have helped once when I was having problems with lactose but it could have been some other variable I overlooked.

Have you tried Raw Sheep Milk?

The benefits really out weigh the others, it is better tasting, creamier, and most people with allergies or lactose problems seem to be able to tolerate it better. It's much closer to human milk (aids in digestion) then cow milk and has more calcium & protein than cow or goat milk.
 

Jennifer

Adminstrator
Staff member
Location
SLO
The type of testing needed are extensive blood work, urine, and stool samples to check what is in your system. They can check a lot from Fecal matter. This is why fecal transplants (from a healthy gut) have helped some patients as fecal matter will contain the same bacteria in your gut.
Do you know what they were actually testing for? I know you're getting a lot of questions on this thread, but I think people genuinely would like to know. I've had plenty of bloodwork, stool and urine samples, but none have ever resulted in my doctors prescribing or even talking about probiotics.
 
The type of testing needed are extensive blood work, urine, and stool samples to check what is in your system. They can check a lot from Fecal matter. This is why fecal transplants (from a healthy gut) have helped some patients as fecal matter will contain the same bacteria in your gut.
Did you have this done at Dr. Hyman's clinic?
 
Do you know what they were actually testing for? I know you're getting a lot of questions on this thread, but I think people genuinely would like to know. I've had plenty of bloodwork, stool and urine samples, but none have ever resulted in my doctors prescribing or even talking about probiotics.
Thats my main question too, none of my bloodwork has ever touched on what bacteria are in my gut or pointed us in a direction on probiotics. Id love to know what the test specifically was
 
I've always believed in the importance of diet and my search has led to the belief that Dr Hyman is completely right about the 'ideal' diet,

Personally i feel that there is a large area of flexibility on some issues and almost none on others,
(For example, the amount of meat can vary greatly (and probably should depending on ancestry, an inuit and a ketavin probably have different 'ideal' diets) but zero artificial toxic crap is the right amount - twinkies coke are not on any healthy diet list.)

The people who keep on saying "but it's sooooo hard, nobody could eat like that".
Well, it's not hard,
You start, and it is hard, you miss the treats and indulgences and convenience, and then it feels normal and you feel healthier and then the thought of putting 'crap' in your mouth and deliberately messing up your health fills you with revulsion. (Then if you go too far you end up with orthorexia, but that's another story)

It's like any other addiction, and needs to be handled the same way
I regularly go into cake shops (and i mean the good ones) with family and friends and feel no desire at all.

Pegan (Dr Hyman's recommendation)[1] is probably far better than Cordain's paleo in that it is closer to our ancestral diet (we did eat grains and legumes, just not so much and of different species and breeds, prepared properly)

The food we eat determines (to a large extent) the balance (or imbalance) of out microbiome (a complex interplay between "the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space") and this directly affects our immune function and our gene expression (epigenetics)

It's all a bit too obvious, we're obsessed with finding a 'cure' ,a pill that means we don't have to give up our addiction

[1] Why I am a Pegan – or Paleo-Vegan – and Why You Should Be Too!
http://drhyman.com/blog/2014/11/07/pegan-paleo-vegan/
 
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Being hard isnt just about wanting the "indulgences" though. Its also about cost time cooking for a family instead of just yourself, there are a lot of factors.
 
Being hard isnt just about wanting the "indulgences" though. Its also about cost time cooking for a family instead of just yourself, there are a lot of factors.
I did say 'convenience' too.
I'm not trying to belittle or berate anyone.
I cook for a family about half the time, always from scratch, It takes hours away from my netflix and facebook.......
 
And that im sure is true for You.... I, just as an example, however am a mother of two special needs kids, who is the primary caregiver for both of them in addition to my own health, they are also homeschooled for health reasons and have their own dietary restrictions. When I speak of time, its not facebook, its lesson planning, and appointments for all three of us with various members of our respective medical teams, etc.
 
understood aideen33,
life is not easy for many but eating real food is an important part of health.
Avoiding the foundations to spend more time on the cladding will never work out well.
Healthy food can be fast and easy (or slow and easy)
Have you looked at the 'diet' suggested? there is nothing weird or difficult in it, just food
Many foods can be cooked in batches and stored/frozen, meat and starchy veggies can be roasted or slow cooked, stir fries are quick and easy, breakfast usually comes straight out of the fridge here, leftovers or chocolate avocado cake,
 
I've always believed in the importance of diet and my search has led to the belief that Dr Hyman is completely right about the 'ideal' diet,

Personally i feel that there is a large area of flexibility on some issues and almost none on others,
(For example, the amount of meat can vary greatly (and probably should depending on ancestry, an inuit and a ketavin probably have different 'ideal' diets) but zero artificial toxic crap is the right amount - twinkies coke are not on any healthy diet list.)

The people who keep on saying "but it's sooooo hard, nobody could eat like that".
Well, it's not hard,
You start, and it is hard, you miss the treats and indulgences and convenience, and then it feels normal and you feel healthier and then the thought of putting 'crap' in your mouth and deliberately messing up your health fills you with revulsion. (Then if you go too far you end up with orthorexia, but that's another story)

It's like any other addiction, and needs to be handled the same way
I regularly go into cake shops (and i mean the good ones) with family and friends and feel no desire at all.

Pegan (Dr Hyman's recommendation)[1] is probably far better than Cordain's paleo in that it is closer to our ancestral diet (we did eat grains and legumes, just not so much and of different species and breeds, prepared properly)

The food we eat determines (to a large extent) the balance (or imbalance) of out microbiome (a complex interplay between "the ecological community of commensal, symbiotic and pathogenic microorganisms that literally share our body space") and this directly affects our immune function and our gene expression (epigenetics)

It's all a bit too obvious, we're obsessed with finding a 'cure' ,a pill that means we don't have to give up our addiction

[1] Why I am a Pegan – or Paleo-Vegan – and Why You Should Be Too!
http://drhyman.com/blog/2014/11/07/pegan-paleo-vegan/
The problem is that millions of people eating normal, unhealthy, western diets and not having any sicknesses contradicts the idea that the condition is caused by diet.

It's simply exacerbated by diet.

More likely cause:
Genetic imperfections cause macrophages to poorly handle intracellular bacteria normally present in healthy individuals.
These bacteria grow out of control in our intestines and pass through into the blood stream via the peyer patches where they are absorbed by macrophages. Bacteria like AIEC causes an inflammatory response by triggering tnf-a and we get Crohn's symptoms and an environment hostile to natural gut flora making hard to repopulate.
 
The problem is that millions of people eating normal, unhealthy, western diets and not having any sicknesses contradicts the idea that the condition is caused by diet.
We all express our "unwellness" differently. I does not contradict it at all, not everyone who smokes has a heart attack or lung cancer
It's simply exacerbated by diet.
Even if it were just 'exacerbated' by diet (and it is far more than that), that would be reason enough to take diet seriously

More likely cause:
Genetic imperfections cause macrophages to poorly handle intracellular bacteria normally present in healthy individuals.
possibly not 'imperfections', possibly epigenetic polarisation of macrophages, possible a whole cascade in response to (chronic) overload on many fronts of which macropages are only one part that has been observed
Epigenetic regulation of macrophage polarization and function
"Environmental factors that induce macrophage polarization include cytokines and microbial factors produced by pathogens or commensal microbiota. "
"Thus, various M1-like macrophages ......... are effective at killing microbes and producing inflammatory cytokines, but have the potential to cause toxicity and collateral tissue damage. "
"By contrast, M2-related macrophages ........promote tissue function under physiological conditions, preserve function during times of stress, restrain and resolve inflammation after infection or injury, and promote repair and wound healing."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3647003/

The microbiome influence the immune system and the immune system influences the microbiome
There is sooooo much going on with so many interacting and inter-related factors acting on different genes with different epigenetic expression that it would be foolish to think we know what is happening, but we don't have to be professors to work out that diet matters
 
I just want to point out that, for some of us, the problem with diets is not that we can't stick to them, it's that diets don't work! (By "diets" I mean the various alternative diets, or whatever you'd call them, that claim to treat illness but which aren't recognised by conventional medicine.)
I posted this earlier in the thread, but I'll post it again as I still think it's important.
 
We all express our "unwellness" differently. I does not contradict it at all, not everyone who smokes has a heart attack or lung cancer

Even if it were just 'exacerbated' by diet (and it is far more than that), that would be reason enough to take diet seriously



possibly not 'imperfections', possibly epigenetic polarisation of macrophages, possible a whole cascade in response to (chronic) overload on many fronts of which macropages are only one part that has been observed
Epigenetic regulation of macrophage polarization and function
"Environmental factors that induce macrophage polarization include cytokines and microbial factors produced by pathogens or commensal microbiota. "
"Thus, various M1-like macrophages ......... are effective at killing microbes and producing inflammatory cytokines, but have the potential to cause toxicity and collateral tissue damage. "
"By contrast, M2-related macrophages ........promote tissue function under physiological conditions, preserve function during times of stress, restrain and resolve inflammation after infection or injury, and promote repair and wound healing."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3647003/

The microbiome influence the immune system and the immune system influences the microbiome
There is sooooo much going on with so many interacting and inter-related factors acting on different genes with different epigenetic expression that it would be foolish to think we know what is happening, but we don't have to be professors to work out that diet matters
I'm not saying it doesn't matter, I'm saying that there's got to be something that sets Crohn's apart from everyone else.

And it's also just speculation to say that people eating a western diet that appear to be healthy aren't, but don't manifest it. Without testing everyone that appears healthy but eats foods with simple sugars, wheat and emulsifiers we can't be sure that there aren't people out there completely unaffected by it.

The problem in most with obesity, cholesterol, heart conditions etc. is not what they eat but how much of it they're eating. We've seen people prove that a calorie restricted mcdonald's diet can work.
 
As mentioned many times before, there is no question diet plays a huge role in the management of IBD. But what that diet is will be different between different hosts and also location and severity of disease. To say otherwise is naive and inaccurate.

The other point people don't realize is that diet does not exist in a vacuum. The immune system's ability to function in terms of any exposure- be it from a food source, virus from someone's sneeze, touch, etc... can be altered by exercise, sleep, mood, medications. Personally I find when I get good sleep and exercise my ability to handle certain foods increases. During times with night call, physically taxing shifts my diet needs to be simpler. Is that the same for everyone? of course not.

Forgetting IBD for a second, the role diet plays in other conditions also is extremely variable. For some a glass of red wine may protect against heart disease, for others it can trigger alcoholism. Many eat McDonalds 3 times a day and have perfect BP, cholesterol and blood sugar. I have patients who are vegan who have trouble with all 3. How much is a genetic component vs. lifestyle? Who can say?

The nice thing about IBD is that though nothing can replace scopes/biopsies and other objective markers like Fecal cal, we can get a sense of how we are doing based on our daily symptoms of lack there of. It's a lot of personal experimentation and trial and error. Plenty of people fail SCD, paleo and other diets big time.

Personally, I would be lost without rice. It is a lifesaver for me. One of the most gut relaxing foods out there. And considering I have right sided colonic disease only, and rice can increae colonic butyrate especially in the proximal colon, it doesn't surprise me. And frankly, with my last scope being normal and recent fecal cal at 37, I find it difficult to agree that I am hurting myself just because some author says so.

Good luck to all.
 
I don't know enough to claim that my views are any more than opinions, I just think diet is the starting point..

I'm not saying it doesn't matter, I'm saying that there's got to be something that sets Crohn's apart from everyone else.
There is 'something' that sets every disease apart from every other disease, That's sort of the point of labeling them.

And it's also just speculation to say that people eating a western diet that appear to be healthy aren't, but don't manifest it.
I don't know if anyone implied that, but there are people with many other chronic diseases and rates of all of them are rising alarmingly (and spreading around the world to countries that were virtually free of them until the 'SAD" and 'moderniation' arrived)

Without testing everyone that appears healthy but eats foods with simple sugars, wheat and emulsifiers we can't be sure that there aren't people out there completely unaffected by it.
I'm sure there are many unaffected (or un-noticably affected) but that doesn't mean anything. If ten people eat peanuts and one dies that doesn't prove it wasn't the peanuts

The problem in most with obesity, cholesterol, heart conditions etc. is not what they eat but how much of it they're eating. We've seen people prove that a calorie restricted mcdonald's diet can work.
Some people eat bread and get fat, i eat bread and start bleeding out the arse and loose a whole lot of weight, we're all different.........

Oversimplification doesn't help, obesity seems to be more about the type of food than the amount (extremely high calorie (high fat) diets have proved effective too) but both quantity and type are factors- (although fat and protein are satiating whereas carbs leave you wanting more). Lots of media about the links between obesity and microbiome, who knows where it will lead (i'm betting on nowhere until there is a product to sell). Governments are reversing their positions on cholesterol in the diet, apparently it's good for you (unlike trans fats which raise blood cholesterol levels).
 
After re-reading this thread I,m convinced as varied a diet that you can tolerate and enjoy is best and the most of these "healing diets"are impossible to stick to long term and are to hard to stick to,let alone buy the ingredients,raw sheep milk being one of them,have you seen how expensive it is?and it's not recommended to drink unpasteurised.on obesity,that's easy if you expend less energy than you put in you get fat.been there bought the big T shirt.
 
Im not sure Id agree that diet is the "starting point" necessarily. I think it can be one factor for many of us... but i think that if we start to interpret is as the starting point that implies A. that diet is the biggest factor (and Im not sure that it is) and B. that its cut and dry for all of us. I have friends that are paleo (not IBD just Paleo for their own reasons), and I know that for me, at this point in time, removing potatoes from my diet? yeah thats going to be an issue. Mashed/baked potatoes are one of the few things i can eat when Im really ill... we do a lot of potatoes and rice here since I have one kiddo thats gluten free as well
 
and the most of these "healing diets"are impossible to stick to long term and are to hard to stick to,let alone buy the ingredients,raw sheep milk being one of them,
Hmmmm, i understand how tempting it is to lump "most of these "healing diets"" together in one big pile of weirdness, it lets you ignore the sensible things because you have associated them with the crazy ones....
Anybody starting reading your post might think raw sheep's milk is part of the Dr Hyman's diet, really doesn't help if you refute the benefits or complain about the difficulty of one 'diet' by invoking the peculiarities of a completely different diet.
I get it though, it's all a big bunch of crazy interchangeable new age hokum.

If this post was about 'most healing diets' then i'd try to aim some light on that, point out that with most diets that people get all enthusiastic about there are a few common factors,
When people adopt a diet and change multiple factors and then find that it helps they will usually assume that it was 'the diet' as a whole, and run off to well everyone about it and how good they felt and how you HAVE to try it blah blah blah. (i've been there :) )
Might be vegan, might be lemon juice and cabbage, might be paleo, whatever
They don't start off by thinking that they changed 10 things , maybe only one of them was an issue for them, maybe two, probably not all though.
It is hard to know if it is something that you have started eating or something that you have stopped eating that helped.

And then there are those who did try 'a diet' or even 'that diet' and it didn't work therefore it can never work and it hasn't been proved, and my doctor said, and anyway it is this microbe or this genetic defect so don't bother.....

I kind of look at it like "I tried to get pregnant but i didn't so it doesn't work" = well, Are you doing it right? Why not try again? Still no luck? Change a few things, get help, you might be a difficult case.........

Then there is the dogma and stereotyping, It's easy to pick the extremes and use it as an excuse, but it's a pretty lazy way to do it.

I know there is Paleo (with the registered trademark), but that's just a small portion of paleo (as in ancestral/hunter-gatherer), Carbs (including Rice and potatoes) are commonly eaten.

Dr Hyman's diet (Pegan, which i attempt to use as a guide, rather than accept as a doctrine) just says 'don't eat too much high carb food, and if you do, eat lower on the glycemic load, and be aware that grains may mess with your immune function' (that's my paraphrasing). Remember, most of the people looking at 'diets' are dealing with high carb problems -obesity, diabetes, heart disease
To rage against it as 'impossible to follow' is a load of bull.

"Eat more veggies" - oh my god, what weirdness is that?
"Dairy might cause problems for some people" - no mention of sheep's milk (other than it is dairy)
"No chemicals" - but where do i get my RDI of Red 3, and i think i'm deficient in ammonium sulfate..........

You're right, it's just too weird..........

Please, read the diet before dumping on it, and then dump on it
(Disclaimer - I eat rice, i eat potatoes, i don't eat wheat and i like to argue)
 
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Love a good debate,my point about the multitude of crohns related diets are the difficulty of Mr average sticking to them,the likely expense and availability of ingredients and the lack of proof they make any difference I,ve found that my dr clinic nurse recommend as varied a diet as possible is best and that seems good advice.
Crohns is such a ballache of a condition I really don,t see a diet being more than a sticking plaster being stuck on an amputation for most people and I know a few post surgery who,s diets are pretty pants and are fine which is great.salads,fruit and veggies used to be a serious test for me and now are fine so how does that work?doesn,t the tedium of sticking to one eating regime drive you nuts?the drugs work eventually,hopefully and I,m well aware that lots of people they don,t help much,fingers crossed for a big breakthrough.
 
I'm in the bacteria / diet camp theory. Why else is it that doctors first line of treatment is antibiotics when you have an abscess???? Why is it that perfectly healthy adults develop some mysterious bowel disease out of nowhere??? After being treated multiple times in the ER for an abscess and fistula,...I'm just now starting to put together the puzzle.

I believe most IBS symptoms and auto-immune diseases originate from the fermenting of bacteria consuming carbohydrates. Specifically high FODMAP foods. Looking back at my diet as a teenager when I as diagnosed with Crohn's, I basically lived on wheat and carbs. I'd even wager 80% of my daily caloric intake came from carbs. I think this sort of carbohydrate over-consumption leads to bacterial overgrowth, which leads to leaky gut, which leads to various food intolerances, an over-active immune system, malnutrition, a host of any number of auto-immune disorders, and chronic symptoms (both mental and physical). For years the western diet has preached excessive consumption of grains and carbohydrates (the now deprecated USDA food pyramid anyone?).

So it's no wonder that today if we look at the statistics we're drowning in the epidemic of 1 in 5 people Americans have an autoimmune disease. Additionally I think many IBS sufferers have issues with the functioning of the ileocecal valve (I was diagnosed with Crohn's in the Ileum), which separates the small intestine from the large intestine. Or an issue with stimulating the Migrating Motor Complex or MMC which encourages the movement of bacteria back down into the colon.

I think most of us are partly victims of the addictive, conventient processed food industry and bad nutrition advice from doctors, and well our own insatiable appetite for the wrong foods in excessive portions. I believe that food science and properly balanced nutrition (high healthy fat, mod protein, low carb diet) is the only answer, not some wacky named pharmaceutical drug breakthrough, some miracle pill / serum instant fix that costs thousands of dollars. I believe in personal empowerment and taking back our own health. I'm kind of cynical by nature and I tend to venture into thinking that the medical community is extremely corrupt and that many autoimmune diseases wouldn't exist today if we were taught proper nutrition in the first place. That there would be no immune disease epidemic. I could go on about this subject as well as my disdain for the processed food industry.

I've taken Humira for the past 2 years and it was apparently ineffective at reducing inflammation and closing a perianal fistula. I ceased taking my Humira 3 months ago and in the past few months I have gotten my fistula to stop draining fluid and show signs of healing, all through diet (low salicylate) alone. That is enough evidence to me in the power of nutrition and my personal dietary choices. I highly doubt I will take an immune suppressing drug ever again.

Recently I've personally discovered how probiotics can be detrimental to health and contribute to bacterial overgrowth. My experience with consuming milk and water kefir (high potency, fermented probiotic foods) only proved to exacerbate my non digestive symptoms (Insomnia, depression, anxiety, emotional fluctuations, eczema). I imagine with the amount of bacteria I consumed (that I believe worsening SIBO) that if I started eating High FODMAP foods I would develop severe IBS symptoms and eventually another abdominal abscess. Now I have to backpedal and go super low carb / low FODMAP to reverse the damage I've done. The problem is a solely dietary approach could take years so antibiotics are likely the next step.

I really wouldn't be surprised if most sufferers on this forum see improvement with committing to a strict SCD / Low carb & Low FODMAP diet and avoiding foods that have chemicals that damage the gut lining. Most my IBS symptoms have subsided in the past few months of simply eating foods lower in fermentable carbohydrates. Combine that with nourishing foods like bone broth to heal the gut. As well as intermittent fasting between meals so the MMC activates and moves bacteria where they properly belong.
 
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I don,t accept any responsibility for getting crohns it's a disease like many others which have no easily diagnosed reason for catching it.i got diagnosed after a highly stressed winter at work(100 hour weeks)in which I got badly burned and then managed to catch shingles which is viral and not bacterial.The favourite fall the diet one doesn,t really apply don,t eat a lot of processed food pretty much everything made from scratch chicken,fish lots of veggies a lot of which were home grown.i think your doing yourself a dis-service blaming lifestyle.
P.s leaky gut is unproven
 
. For years my GI told me that it didn't matter what I ate, but I knew that my diet throughout my life was the only variable that contributed to how horrible I felt at times. Apparently he was wrong...and I'd wager most of our GI's are lieing just as much. If we cured ourselves through nutrition...they would have to find a new line of work. Follow the money. Big Pharma is an infinitely profitable industry that thrives on the ignorance, irresponsibility, and suffering of the masses.
I really don't think doctors are worried about running out of work to do. And here in the UK we have the NHS, so doctors are under pressure to spend as little money as possible treating patients, but that hasn't led to them trying to treat Crohn's with diet rather than medications.
 
From a child, I have eaten home cooked food made from scratch. I've eaten very little chemical laden processed food. I don't believe my Crohn's was caused by my healthy diet.
 
The focus isn't on whether food is processed or not. More to do with daily carb intake and the amount of highly fermentable carbohydrates we consume.

For the past 4 years I was eating mostly home made meals and in that time I developed a fistula. Unknowingly, I got into the habit of eating foods that were higher in salicylates (a natural food chemical found in most plants)...foods like broccoli, cauliflower, nuts, zucchini, lots of dried fruit, berries and other random fresh fruit, sweet potatoes, various beans, olive oil, spinach, coconut oil...all foods you would think are healthy because they're "natural". There are so many natural food chemicals that when consumed in large amounts create various symptoms if you have "leaky gut". Like oxalates, histamines, phytic acid, phenols, lectins, saponins, etc...in excess they have destructive effects on the body.

I know leaky gut isn't acknowledged by the medical community, but intestinal permability is found in peer reviewed research literature along with its relation to inflammation, links to auto-immune disease and food sensitivities.
 
To be honest winged victory it sounds like you blame yourself for getting crohns because you ate a healthy varied diet and that is wrong,there are a multitude or theories,guesses especially on the Internet that espouse the idea it's diet related and if you go and buy the book,DVDs or cd it,ll be cured where are these cured people?and I don,t believe and the conspiracy theory that big pharma keeps answers under wraps doesn,t work no one keeps secrets like that anymore to many whistleblowers out there and medical professionals who care and want to help they,d let it out the bag.
A really common theme on this forum seems to be a period of high stress plus a viral or other illness puts them over the edge,seems logical to me and should be looked at very closely.the whole diet thing seems to be a red herring it helps to avoid triggers but doesn,t cure it and it always seems high risk to recommend diet alone as an answer especially to the newly diagnosed who are generally worried sick and we all know that really doesn,t help.
 
India, the world's second most populous country, with a population of over 1.2 billion has around 500 million vegetarians. They seem to have a low rate of Crohn's even thought they eat carbs.
 
Axelfl3333 what is a healthy diet? Can that even be defined in this day in age of extremely conflicting fad diet advice? I went through college without a single "flare" as people on this forum like to call it. When I graduated my diet changed drastically. Sure I had the stress of job hunting but it wasn't really anymore stressful than academia. Since graduating I got my first abdominal abscess, then a year later a rectal fistula. I don't know if I'd call it blame so much as holding myself accountable for reckless nutritional habits. Not caring enough about what I was putting in my body. Not listening to my gut.

Personally I think the writing is on the wall of the destructive outcome of the western worlds dieting philosophy of high grain/ high refined sugar. I don't even see how India's dietary habits have anything to do with the majority of us being of European descent. They have entirely different evolutionary dietary choices based on their heritage and food tradition. I'm guessing they eat specific carbohydrate sources, prepared a certain way, and a more structured eating schedule.

No sense going in circles debating. I just wanted to share my theories and experiences whether they're appreciated or helpful...or not.
 
WingedVictory - I just read your post about your diet and the paper you linked to and I think it's really interesting and it may well be helpful to some other people on the forum.

But I think your experience may well be quite different from many other people's experiences here. Crohn's is likely an umbrella term for a number of diseases with different causes - merely grouped together because of the similarity of symptoms.

Most people don't have the extreme reactions to certain foods that you have and likely aren't sensitive to salicylates. The paper you linked to was really interesting as they followed the salicylate sensitive patient for two years and he had complete remission without meds - but he had a sensitivity to salicylates and most people don't.

I hope you can achieve deep stable remission as he did but please be aware that your experience just doesn't match others here on the forum and therefore they are likely to feel differently to you.
 
I was reading about squat toilets vs. sitting toilets:

Human beings were designed to perform their bodily functions in the squatting position. In order to be squeezed empty, the colon needs to be compressed by the thighs. Furthermore, the puborectalis muscle needs to be relaxed and the ileocecal valve from the small intestine needs to be closed. By ignoring these requirements, the sitting toilet makes it impossible to empty the colon completely. Incomplete evacuation causes wastes to stagnate in the lower regions of the colon. In these areas, virulent bacteria can establish colonies, inflaming the surrounding tissues.

From http://www.naturesplatform.com/health_benefits.html#colitis

One explanation why third world countries don't have IBD as much.
 
Same old problem too many words and no-one will read it, too few and it is too ambiguous,

Loving the way diet brings out the passion in people, totally bewildered by the hostility,
There is ample 'evidence' of the help that diet provides on this forum alone.
If a 'cure' is the only reason that you would consider diet then forget it.
If symptom reduction and management along with better health and wellbeing is of interest then give it a go.
Structured approaches like GAPS/SCP are a good starting point as they have introduction phases that are designed to suit people with intestinal difficulty, It can be personalised as your 'inner awareness develops. Others diets like pegan, Paleo AI, perfect health etc are worth looking into but keep in mind you can't just start eating cabbage or nuts and expect everything to 'flow smoothly'

my point about the multitude of crohns related diets are the difficulty of Mr average sticking to them,the likely expense and availability of ingredients and the lack of proof they make any difference
All the Crohn's diets that i'm aware of tend to centre on the role of carbs and there is some evidence from small studies, and a huge body of anecdotal evidence, to support them.
And other diets revolving around 'clean eating' but including certain carbs (but never wheat) also show lengthened remission and improved quality of life
One main observation is that by removing all carbs you remove grains and in particular gluten containing grains. I find the work coming out regarding the role of gluten (and similar compounds in other grains) in immune dysfunction fascinating and I hope it leads somewhere.
Another is that by starving the bacteria that feed on carbs there is the possibility of other species that are more helpful gaining a stronger position.
There is plenty more showing that different people have trouble digesting different sugars and different bacteria will ferment the undigested cards in different ways in different individuals (fodmaps helps many with this).
There is astrong and growing body of evidence supporting fecal transplants but , as they don't really know what they are doing, it is still pretty hit and miss. Nevertheless it (and other research) supports the concept that gut bacteria play a major role in this and probably most immune dysfunction and chronic diseases.

I have no interest in diets that involve expensive ingredients although I did what most people do when they start paleo/SCD. I replaced grains with nut flours and 'legal' imitations of the foods I was familiar with.
This is completely unnecessary but quite understandable, It takes a while to adjust a template for our own situation.

I no longer really think in terms of this or that disease too much, An analogy, overly simplistic as it is....You give 1000 unfit people some shoes and get them to run around, some will get fitter, some will get blisters (these will be in different places, but there will be similar groupings) some of them will dehydrate, some of them will pull muscles, some will damage joints, some might have heart attacks.
Why should food affect us all the same way?

I,ve found that my dr clinic nurse recommend as varied a diet as possible is best and that seems good advice.
I would totally agree, but with one huge caveat. If a food is harming you don't eat it.
One of the main ways to check this is an elimination diet (and it is not foolproof and harmful effects can take weeks or months to manifest).
All the 'healing diets that I spruik (SCD, Paleo, Fodmaps, Gaps, PHD) recommend some form of elimination/staged reintroduction along with (except for FODMAPS) avoidance of 'toxic' foods.

Interestingly, what we consider a 'varied diet' in the west tends to be huge amounts of the same four ingredients reconstituted with a variety of chemical flavourings packaged in bright wrappers.
I loved this photo shoot of food
http://www-rohan.sdsu.edu/~cbabroad...ood for a Week Around the World in Photos.pdf
I think I prefer Ecuador (and i'd eat the potatoes). All the western ones are wheat, sugar, corn and soy with flavour and chemicals.

salads,fruit and veggies used to be a serious test for me and now are fine so how does that work?doesn,t the tedium of sticking to one eating regime drive you nuts?the drugs work eventually,hopefully and I,m well aware that lots of people they don,t help much,fingers crossed for a big breakthrough.
There is a big difference between foods causing harmful bacterial overgrowth and cascades of immune dysfunction, and foods that cause pain and discomfort as they travel through an ulcerated colon, or foods that cause bloating and gas as they are devoured by an overgrowth of bacteria.
- We focus all our efforts on the latter because that is the pain we feel.

Tedium, no. I eat lamb and potatoes and veg (I should eat Veg with a little lamb and potatoes according to Dr Hyman) almost every night. After 4 years I still love it. Favourite is kofta – lamb mince (what you guys call hamburger? - but without all the fillers and grain) mixed with grated carrot and onion and parsley – so its half veg to begin with.
I make vegetable juice and then dehydrate the pulp with chia seeds to make crackers and eat them with avocado.
I'm adding pulses and legumes back in slowly (bean sprouts mainly)
I get plenty of variety,
My 'regime' is far more varied than most peoples even though 99% of the meat I eat is lamb

I long ago stopped thinking that technology would cure the problems caused by technology, all it does is mask it until a bigger problem develops

I don,t accept any responsibility for getting crohns it's a disease like many others which have no easily diagnosed reason for catching it.i got diagnosed after a highly stressed winter at work(100 hour weeks)in which I got badly burned and then managed to catch shingles which is viral and not bacterial.
I don't blame myself either, After a lifetime of undiagnosed digestive and immune issues it was stress that pushed me into diagnosable illness.
Diet IS ONLY A PART OF IT, but it is a big part and probably the easiest to take control of (no, really, I mean that)

The favourite fall the diet one doesn,t really apply don,t eat a lot of processed food pretty much everything made from scratch chicken,fish lots of veggies a lot of which were home grown.i think your doing yourself a dis-service blaming lifestyle.
I used to be an organic vegetarian, then organic semi-veg(low meat). but I thought grains were healthy. My arthritis has gone since I stopped eating wheat.
Crohn's is widely accepted that it is a multi-factorial disease, but all agree that environment (lifestyle) is one of those factors. The other main factor is genetics and the effect of environment on genetic expression is well documented. Personally, I think you do yourself a disservice by denying lifestyle (and I mean that in a polite supportive and conciliatory sort of way)
P.s leaky gut is unproven
Leaky gut (Intestinal permeability)is proven, leaky gut syndrome is still under debate.
The debate is now -Leaky gut exists, but is it bad for you?



India, the world's second most populous country, with a population of over 1.2 billion has around 500 million vegetarians. They seem to have a low rate of Crohn's even thought they eat carbs.
Doesn't matter how any debate progresses, people cling to the little 'factoids' that suit there arguments.
Firstly rates of Crohn's in india are going up sharply, totally invalidating the 'genetic argument'.
Reducing carbs is a big part of the technique to bring gut bacteria back to normal in diets like SCD/GAPS. Doesn't mean the carbs are the cause, just that they perpetuate the problem.

To stretch that analogy abit further (possibly to breaking point). Once one of those runners has a blister or a sprain the first thing to do is to get them to stop. Some might need a dressing or padding, some might need training, some might need surgery, whatever. The first thing is to stop running until you work out how to do it without causing damage.
All these diets are an intervention that aims to short circuit a cascade.
Abnormal gut flora is a documented phenomena associated with IBD, changing gut flora will change the disease.

All this hostility that it is "not a cure so don't bother", take the meds instead....Well they are not a cure either and can have many adverse effects.
 

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All this hostility that it is "not a cure so don't bother", take the meds instead....Well they are not a cure either and can have many adverse effects.
I believe it's possible for there to be a happy medium between the two. Do everything you can to make yourself feel better until a cure is discovered.

If anyone wants to debate diet or the cause of Crohn's further they are more than welcome to start a new thread. :) I believe this thread has been derailed enough and am now closing it.
 
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