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Crohn's Disease Forum » Diet, Fitness, and Supplements » As Dr Hyman said, "Is your Dr. Making You Sick?"


 
05-15-2015, 11:15 AM   #1
ColorsofHeaven
 
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As Dr Hyman said, "Is your Dr. Making You Sick?"

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

Last edited by Jennifer; 05-24-2015 at 10:29 PM. Reason: Link removed - the sale of items is agianst forum rules
05-15-2015, 01:19 PM   #2
wildbill_52280
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which probiotics do you use?
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05-15-2015, 03:59 PM   #3
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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 donít 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
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05-15-2015, 11:32 PM   #4
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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 donít 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.

Last edited by wildbill_52280; 05-23-2015 at 09:36 PM.
05-16-2015, 10:41 AM   #5
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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: ďA pill for every illĒ, which is an outdated disease-care model that does nothing to identify and fix the underlying cause(s) of a patientís 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.
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05-16-2015, 06:52 PM   #6
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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
05-16-2015, 09:02 PM   #7
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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.
05-18-2015, 02:00 PM   #8
ColorsofHeaven
 
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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 ó 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.
05-21-2015, 10:29 AM   #9
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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.
05-21-2015, 01:10 PM   #10
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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/publicat...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/arti...178/figure/F2/
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05-21-2015, 01:34 PM   #11
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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.
05-21-2015, 05:55 PM   #12
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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.
05-21-2015, 05:57 PM   #13
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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?
05-21-2015, 06:47 PM   #14
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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/...7s+diet&rank=2

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

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

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

SCD in children in Seattle Children's
https://clinicaltrials.gov/ct2/show/...7s+diet&rank=9

Normal vs. restricted diet at University of Pennsylvania
https://clinicaltrials.gov/ct2/show/...s+diet&rank=12
05-22-2015, 05:41 AM   #15
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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.
05-22-2015, 08:36 AM   #16
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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.)
05-22-2015, 01:39 PM   #17
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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.
05-22-2015, 02:29 PM   #18
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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.
05-22-2015, 03:41 PM   #19
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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
05-23-2015, 06:49 PM   #20
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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.
05-23-2015, 09:28 PM   #21
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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/arti...178/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.
05-23-2015, 09:47 PM   #22
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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.
05-24-2015, 05:17 AM   #23
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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? 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.
05-24-2015, 05:57 AM   #24
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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!
05-24-2015, 11:20 AM   #25
Axelfl3333
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It doesn't,t seem heated to me just people giving there thoughts and opinions.
05-24-2015, 02:45 PM   #26
Lady Organic
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ColorsOfHeaven, what is your diet consisting of? or what have you eliminated?
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
05-24-2015, 10:56 PM   #27
Jennifer
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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?
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-25-2015, 05:59 AM   #28
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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.
05-26-2015, 11:31 AM   #29
ColorsofHeaven
 
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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/vitami...ing-probiotics
05-26-2015, 03:28 PM   #30
Jennifer
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Harvard Medical School Health Publication on Probiotics:
http://www.health.harvard.edu/vitami...ing-probiotics
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.
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Crohn's Disease Forum » Diet, Fitness, and Supplements » As Dr Hyman said, "Is your Dr. Making You Sick?"
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