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Long term remission vs Cure

I was diagnosed with Crohn's a few years ago after having symptoms for 30 years. My main symptoms were chronic diarrhea and occasionally urgency with cramping.

I had a bowel resection (9 cm) with no other thickening, strictures, or damage found. I was not put on any medication as the surgeon and doctors felt I had managed it well on my own.

I felt fine following surgery but continued to have chronic diarrhea. I accepted that as I was used to it and it didn't really cause me any ill effects. It had been my norm for over 30 years. When I say my diarrhea was chronic, I mean I NEVER had a solid stool.

A year ago, I met a new neighbor who had various health issues. She was considering a vegan diet after watching Forks Over Knives, but her illness prevented her from shopping and cooking most days. I volunteered to shop and cook for her and join her in her vegan diet.

I was a bit concerned since I had been told to avoid high fiber, and the recipes my neighbor picked out were packed with fiber.

Within a couple of days on the vegan diet I had my first solid stool in decades, and it has continued since. All my blood tests are normal, my colonoscopy was clean, even around the anastomosis site.

So.....I have no signs or symptoms of the disease for over a year. At what point would you consider someone cured?
 
I would say you might be in remission. That is great. There is no cure for IBD I hope you stay that way for a long time
 
At this point I agree I am in remission. But if all tests remain normal and I am symptom free, I will consider myself cured. I believe diet plays a far greater role in this disease than most doctors realize.
 

Scipio

Well-known member
Location
San Diego
The main reasons to avoid high fiber in Crohn's is if it's a trigger food for you or if you have a stricture or other scarring and damage that puts you at risk for a bowel blockage. If neither of those apply then there may be no need to avoid high fiber. I've never had to avoid fiber. Perhaps you previously avoided it needlessly, and now the vegan diet has helped by finally providing some needed fiber.

Good luck with remaining in remission.
 
I was in remission for 9 years. I still have/had trigger foods and spices.

Now I have been in a flare for 6 years.

remission is a beautiful thing.


Lauren
 

Lisa

Adminstrator
Staff member
Location
New York, USA
I too have been in remission (not on any medications) in the past for years.....unfortunately, each period of remission for me became shorter and shorter and my disease progressed and became more severe. Now, do keep in mind that when I was initially diagnosed 30+ years ago, it was accepted to take medications until remission was achieved then stop.....until a flare occurred.....
 
intestinal bacteria ferment dietary fiber to create healthful compounds which benefits digestive system. low fiber diet has been shown to be a risk factor to developing IBD. It's not surprising this has helped you at all. i find rolled oats and well cooked beans(until they soft as mashed potatoes) to be the absolute best sources of fiber and contribute to large formed moist stools.
 
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I have not been diagnosed with Crohns, but I am having all sorts of issues. I am also looking for a different GI doctor to get another opinion. One thing I can say is that No one can say there is No cure for any disease when they do not even know the cause themselves. I have a disease called Interstitial cystitis. There also is supposedly No cure for it. It is similar to Crohns except it is in the bladder and causes ulcers and severe inflammation in the bladder. I have had this disease for the last 11 years. I have a friend who also had it. She is cured! She has not had any symptoms of IC in the last 5 and half years. She follows a very strict diet ( similar to the SCD diet). I also think with these illnesses, the cause can be different in each individual. So for example, if one person's Crohn's is caused by a pathogenic bacteria and they are able to eradicate that bacteria their Crohn's can possibly be cured. Or if a person's Crohn's is caused by a severe hidden food allergy and they fix that then they are cured. I think it all depends on the cause. Also some believe these chronic illnesses are due to a malfunction in the immune system itself. If that is corrected then there could be the potential for a cure in any illness. Sadly not everyone gets cured because the body is extremely complex and it is not easy to figure it all out all the time. So basically in order for someone to classify any disease as having "no" cure, well they would have to know the cause to prove there is no actual cure out there.
 
My thoughts exactly!

As far as flares and remissions, my Crohn's was always constant. No periods of intense symptoms, just diarrhea every day.

I always have plenty of energy and was a long distance runner and triathlete for years. I never missed work or avoided social activities.

Since my bowel resection, all my tests have been normal. With the change to a vegan diet, I feel cured of my disease.
 
It is my understanding that for something to be classed as 'cured' then you are free from the disease after discontinuing treatment. Whereas you stay in remission by continuing a treatment. Bowel resections also put many people in remission for several years but it is not a cure because after several years the disease often returns.

If you are following a vegan diet and this keeps the disease inactive, but if you then stop the vegan diet and eat meat etc and the disease returns then you were never cured.
 
I think some people may have food "allergies" or sensitivities and when they consume these foods it can cause inflammation anywhere in the body. If they avoid the trigger foods then the disease goes away. Kind of like with a person who has Celiac disease. They do not have the enzyme required to break down gluten so when they ingest it, it causes massive damage to the small bowel. When they give up Gluten the disease goes away and will only emerge if that person starts consuming Gluten again.

I also honestly think there is more than one illness out there that can cause intestinal inflammation. My son's best friend was diagnosed with Crohn's disease when he was 16 years old. I remember how he would have to run to to the toilet all the time. He told me it was so bad in high school that he literally would not eat anything at all all day until he got home so he would not have to run to the toilet. He finally got diagnosed. They gave him I believe steroids and Asacol. This got him better. He is 24 going on 25 right now and has not been on any medications for years and has no symptoms at all. I mean he drinks alcohol and does not eat the best diet and still has no issues at all. I just wonder if he even had Crohn's to begin with, maybe it was something else. That or he has a really good immune system that is keeping it in check.

I think everyone is different and is going to respond differently to illness. Some do get cured. Like I said, my friend who definitely had IC( Interstitial Cystitis) in which there is no cure supposedly has been cured of the disease for the last 5 years or so. Yet I have had the illness since 2005 and still battle with it. It is all about the immune system in how any disease state will manifest in any individual.






It is my understanding that for something to be classed as 'cured' then you are free from the disease after discontinuing treatment. Whereas you stay in remission by continuing a treatment. Bowel resections also put many people in remission for several years but it is not a cure because after several years the disease often returns.

If you are following a vegan diet and this keeps the disease inactive, but if you then stop the vegan diet and eat meat etc and the disease returns then you were never cured.
 
But what is my diarrhea is not a result of Crohn's but bile salt malabsorption from my resection?
I would say that is a separate issue unrelated to whether or not your Crohn's is in remission/cured.

I have a friend who also had it. She is cured! She has not had any symptoms of IC in the last 5 and half years. She follows a very strict diet ( similar to the SCD diet).
In my view then your friend would be cured if she could come off this SCD diet and not have any further issues with IC. I would say this diet is keeping her "in remission", and if she changed her diet and had problems again then she was never cured, but if she changed her diet and still continued to have no problems then she could consider herself "cured".

Same with coeliac disease. If people avoid gluten and have no further symptoms, they are not cured of coeliacs disease as the underlying problem is still there. If they ate gluten again they would start having problems again.

This is just my view... and it is difficult really because Crohn's can be in remission for decades and then out of the blue start causing inflammation/damage.
 
Have you contacted your doctor?
Not about my vegan diet. But I have discussed the ongoing diarrhea with her. She was the one that suggested my diarrhea was a result of the resection. Questran would eliminate it, but I hated taking it.
 
The conversation I had with my doctor was a couple of years ago.

I don't need Questran any longer as I have no diarrhea or any other symptom or evidence of having Crohn's.
 
Many people achieve long term remission with surgery. Others have the disease return rather quickly.

If the diarrhea was present before your surgery it could be due to stricturing of the bowel, active disease etc. After surgery, many GIs will inform you that it may take some time before bowel movements become normal.

I agree with the above poster, a cure would be if you stopped treatment, be it meds, diet etc and the disease did not return proved out by lab work, scopes w/ biopsies, imaging etc not by symptoms. My son has been asymptomatic for quite sometime yet required surgery 2 years ago and the disease is active now.

I wish you a long, happy, remission.
 
Even though he had no outward symptoms, there was an area that was severely ulcerative, fissured and narrowed which required surgery.

After surgery the CR surgeon described it as hamburger meat and was both surprised he wasn't in agonizing pain or that perforation had not occurred. This area had been an area of simmering inflammation for quite a long time. He had been on remicade and mtx for 2+ years before surgery.

Six months after surgery and 3months after starting humira with mtx his scopes were visually clean but biopsies showed active inflammation at anastomosis and other areas that had previously not had active disease.

A scope 6 months after that showed active inflammation from anastomosis site and throughout colon. He had only had active disease in the terminal ileum before surgery.

His disease progression is a perfect example of why the standard isn't treat to symptom remission. Even without outward symptoms the disease can be causing severe damage.
 
Clash, ok, this is very interesting. I find it very helpful reading everyone's experiences in order to understand this disease. Or atleast attempt to understand it. LOL!
 
Even though he had no outward symptoms, there was an area that was severely ulcerative, fissured and narrowed which required surgery.

After surgery the CR surgeon described it as hamburger meat and was both surprised he wasn't in agonizing pain or that perforation had not occurred. This area had been an area of simmering inflammation for quite a long time. He had been on remicade and mtx for 2+ years before surgery.

Six months after surgery and 3months after starting humira with mtx his scopes were visually clean but biopsies showed active inflammation at anastomosis and other areas that had previously not had active disease.

A scope 6 months after that showed active inflammation from anastomosis site and throughout colon. He had only had active disease in the terminal ileum before surgery.

His disease progression is a perfect example of why the standard isn't treat to symptom remission. Even without outward symptoms the disease can be causing severe damage.

Do they relate the new effected areas to the fact that he had the surgery ?
 

Jennifer

Adminstrator
Staff member
Location
SLO
I'm glad to hear that you're in remission scl. :) After my resection I also went into remission and have been since 1999 (I have always been on medication since my resection so I can stay in remission). A cure would mean that there's no chance of the disease coming back but with remission it's possible for the disease to become active again but there's no set time for when that may happen. I hope you have a very long remission as well. :)

Before my resection I also had to avoid fiber but since my symptoms returned to normal after my surgery I have been able to eat salads, fruits and vegetables without any problems. Over the years the scarring from my resection has become more narrow which is common with scars as they shrink over time so sometimes I do have to be mindful of what I eat because I do have a stricture and adhesions from the surgery which can cause partial obstructions from time to time (a few years ago I had a full obstruction but it cleared without needing surgery after a 3 day hospital stay on bowel rest). You likely won't have to deal with this for quite some time (hopefully never) and hopefully don't have any adhesions.
 
worriedboy, noone thinks his surgery was the reason for his CD being active. Surgery is not curative. Studies show numbers as high as 60% of disease returning especially at anastomosis site. He required surgery due to the area being significantly inflamed and fear of perforation was high.
 

Jennifer

Adminstrator
Staff member
Location
SLO
How are adhesions diagnosed? Were the strictures found by CT scan?

Thanks in advance.
Adhesions can't really be seen in any imaging tests. They can be found during surgery or in my case they were diagnosed by going in to have a balloon dilation done at my anastomosis site since I had a full obstruction and a few partial obstructions but they found that the anastomosis wasn't narrow enough to need stretching. Meaning that it was likely adhesions from the surgery and prior inflammation creating the scar tissue on the outer layers of my intestine that were likely contributing to the obstructions.

For me only a CT scan and colonoscopy have shown my anastomosis narrowing. An MRI, MRE and small bowel follow through didn't pick it up at all. An endoscope can also see the anastomosis (via colonoscopy, upper endoscopy or a double balloon endoscopy depending on where your anastomosis is).
 
I am humbled by the suffering I've read in these posts.

It seems my disease has been very atypical. I had chronic diarrhea for 30 years. No fatique, no pain, no flares. It was a blockage that led to the diagnosis of Crohn's. In my consultation with my surgeon he told me he expected to find widespread damage since I had the disease for so long and had never taken medication. My illness never affected my lifestyle.

Following the surgery to remove 9 cm, my surgeon was amazed he found no other thickening, strictures, or any sign of the disease. He recommended no medication following the resection and all tests have been normal since. Both my GI doc and surgeon say have no signs of the disease for the past several years. I am grateful, but it honestly seems a bit unfair. I hope that greater understanding of this disease leads to better treatment and even more important what causes the disease and how it can be cured for all.

Thank you for sharing your stories.
 

Jennifer

Adminstrator
Staff member
Location
SLO
I'm glad that you've had very few symptoms. :) It's not as common to be asymptomatic (based on the posts I've read on the forum) but I have heard many other people on the forum like you who have had very few symptoms as well and seemed to mainly be diagnosed after some other procedure or like in your case surgery. While in remission it's good to have routine tests/scopes done every 4-5 years just to make sure that everything is still doing ok (especially since you're known to be asymptomatic) and to at least screen for colon cancer which people with IBD are at a higher risk of getting. During a flare tests are done much more often.
 
Thanks Jennifer. I will continue to have tests to make sure I'm not ignoring something potentially harmful.
 
It is my understanding that for something to be classed as 'cured' then you are free from the disease after discontinuing treatment. Whereas you stay in remission by continuing a treatment. Bowel resections also put many people in remission for several years but it is not a cure because after several years the disease often returns.

If you are following a vegan diet and this keeps the disease inactive, but if you then stop the vegan diet and eat meat etc and the disease returns then you were never cured.
What if my disease was largely caused by a poor diet or misuse of antibiotics? Once corrected, the disease is gone.

Right now I am providing my body with the nutrients and lifestyle to stay healthy and disease free.

Think about how diet and lifestyle play a part in creating and curing atherosclerosis, heart disease, stroke, obesity and type 2 diabetes, and diseases associated with smoking and alcohol and drug abuse. Regular physical activity and diet helps prevent obesity, heart disease, hypertension, diabetes, colon cancer, and premature mortality.

If accept your theory, then how can you say anyone is ever cured of any disease?
 
There is colitis caused by antibiotics, NSAIDs, infections etc. Those aren't Crohn's Disease and they can be cleared.

Crohn's is a cyclical disease, it waxes and wanes. There are some large studies going on with certain diets such as SCD. And there have been small studies with other diets that have proven helpful.

Juvenile type 1 diabetes was a fatal disease until the discovery of insulin. Taking insulin increases the lifespan and quality of life for those who have type 1 diabetes but it's not a cure. If you stop the insulin the disease ravages the body.

Type 2 diabetes can sometimes be controlled with diet and exercise. Note the word controlled, because if you stop exercising and restricting your diet then the disease comes back. The same is true for most of the ones you mentioned.

Someone with type 2 diabetes that is treating with exercise and diet haven't cured their disease they've controlled it. Because as opposed to someone who doesn't have type 2 diabetes they either have to restrict diet or be on medications and if they don't then the disease comes back.
 
It is interesting to me that Mycobacterium tuberculosis and also mycobacterium avium subspecies paratuberculosis has been associated with type 1 diabetes by some studies.

Really, your dispute is about what defines a cure. i use the more difficult definition of anything special I have to do on a regular basis that normal people do not have to do is a treatment. On the other hand I do not know if my current treatment method needs to be done forever. If I quit today after a couple of years and the Crohns never comes back was it a treatment or cure? It gets complicated.

Dan
 
First of all, I did not include Type I diabetes in my argument. And yes, my issue is what defines a cure.

Clash says, "Someone with type 2 diabetes that is treating with exercise and diet haven't cured their disease they've controlled it. Because as opposed to someone who doesn't have type 2 diabetes they either have to restrict diet or be on medications and if they don't then the disease comes back."

But those who don't have type 2 diabetes are likely to get it they abuse their body with poor diet and lack of exercise.

If your disease disappears by providing your body with the nutrition and physical activity that it needs, I call that a cure. And yes, returning to abusive behavior will make it come back. And sadly, there can be permanent damage to nerves and blood vessels that might require treatment. But that is treating the damage, not the diabetes itself.

If you can prevent it, you can cure it.
 
I understand you didn't list type 1 diabetes. I was using it to give you an example of how the word cure is defined on the forum.

There are a number of members on this forum that have achieved deep, stable remission with mucosal healing that has lasted years. They've done so using meds, surgery, diet etc. but if they stop be it meds or diet then their disease returns so they don't state they are cured.

Also, since a large number of our members are newly diagnosed and looking for answers it would be entirely misleading to state "I cured myself by _____.", seeing as that is anecdotal. Since it would be hard to prove correlation or causation with variables such as gene involvement, possible infection, surgery outcomes etc. Not to mention it would be the result of 1 person with CD.
 
Keep in mind I said, "I feel cured of my disease." Whether the medical community or anyone else disagrees, is irrelevant to me.

I appreciate the anecdotal stories on this site that are helpful for a particular person. I always consider their story and try to determine whether it might work for me. There have been many helpful solutions that I've adopted from fellow posters.

Perhaps other stricture-free Crohn's posters will consider a vegan diet. It certainly cleared up my diarrhea which was my one and only symptom of the disease. Yes, I could have used questran but I hated it and it did not have the huge benefit on my overall health that my vegan diet affords.

I've enjoyed the conversation regarding what constitutes a cure. It's clear there are many definitions held.

Also, for new members who might have recently been diagnosed, I find it discouraging to say there is no cure. How about, there is no known cure at this time, but ongoing research brings us closer to one.
 
Keep in mind I said, "I feel cured of my disease." Whether the medical community or anyone else disagrees, is irrelevant to me.

I appreciate the anecdotal stories on this site that are helpful for a particular person. I always consider their story and try to determine whether it might work for me. There have been many helpful solutions that I've adopted from fellow posters.

Perhaps other stricture-free Crohn's posters will consider a vegan diet. It certainly cleared up my diarrhea which was my one and only symptom of the disease. Yes, I could have used questran but I hated it and it did not have the huge benefit on my overall health that my vegan diet affords.

I've enjoyed the conversation regarding what constitutes a cure. It's clear there are many definitions held.

Also, for new members who might have recently been diagnosed, I find it discouraging to say there is no cure. How about, there is no known cure at this time, but ongoing research brings us closer to one.
It does sound better, but speculative.
As much as we all want to belive, still the mechanism of Crohns is yet to be understood. No one can tell why flares take place, why they do at the time they do, the huge variance among patients, whether Crohns is an umbrella term to several diseases and if so what are they, why one drug works for a sub group and doesnt for another, why certain anti-tnf-a work very well and others dont, what makes Crohns likeliehood at northern countries much higher; but also in some other countries as well.....

There are dozens of questions that are yet to be answered; all possible explanations as of today are just hypothesis.

During the last 20 years, as I see it, the progress in regards to Crohns comes down to:
1) Introduction of biologics (tnf-a blockers and some others which are still to be proven "in the field"
2) Related genes and the overlap to immunodeficienicy
3) Taking 5ASA out of the standard protocol
And...
4) General understanding and better practice as to Crohns management

But in terms of a cure ?
I believe there is still a long way to go ...
 
Type 2 diabetes can sometimes be controlled with diet and exercise. Note the word controlled, because if you stop exercising and restricting your diet then the disease comes back. The same is true for most of the ones you mentioned.

Someone with type 2 diabetes that is treating with exercise and diet haven't cured their disease they've controlled it. Because as opposed to someone who doesn't have type 2 diabetes they either have to restrict diet or be on medications and if they don't then the disease comes back.
This makes no sense to me.

A person lives a destructive lifestyle which results in type 2 diabetes. They stop the destructive lifestyle and their disease disappears. Are you saying that if they return to the destructive lifestyle and the disease reappears, it never was cured?

I don't call it "restricting diet." I call it providing your body with the necessary nutrients and lifestyle it requires to be healthy.
 
Type 2 diabetes is a progressive disease which has no cure. People can manage type 2 diabetes with diet and exercise but after about 10 years most people's diabetes will have progressed and will no longer be able to be managed this way and will require medication. There is absolutely no cure for type 2 diabetes.
 
I don't think we are? You said:

A person lives a destructive lifestyle which results in type 2 diabetes. They stop the destructive lifestyle and their disease disappears. Are you saying that if they return to the destructive lifestyle and the disease reappears, it never was cured?
I am saying this isn't the case - people with type 2 diabetes will eventually require medication to manage their condition. This isn't because they returned to their destructive lifestyle. It's because type 2 diabetes is a progressive condition. Over time diet and exercise will not be enough to keep blood glucose at a safe and healthy level and they *will* need medication. It may take a year or a decade but it will happen. Even with a healthy diet and exercise their diabetes is slowly getting worse. Medication controlled diabetes is not cured diabetes.
 
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Actually I know a co-worker of my husbands, well her dad had bad type 2 diabetes, I mean he had it bad. He underwent stem cell transplant and he no longer has the diabetes. He can eat whatever he wants now.

Also it is a myth that type 2 diabetes is caused by obesity and bad diet. How do I know this? well my moms side of the family( her 2 aunts and two uncles) have type 2 diabetes( adult onset) and they are all skinny people who do not abuse themselves with bad diet, yet they all have it. It is genetic! My son has been pre-diabetic for a long time according to his glucose tolerance tests. My brother just got diagnosed as pre-diabetes (type 2) and he is thin as can be and is Not unhealthy at all.

But yeah, it can be cured in some people who undergo stem cell transplant. Also, not all people get worse who have type 2 diabetes. Some never require medications as long as they follow very strict diets. Yet some do require medication no matter how good of a diet they follow. It all depends on the person really.














I don't think we are? You said:



I am saying this isn't the case - people with type 2 diabetes will eventually require medication to manage their condition. This isn't because they returned to their destructive lifestyle. It's because type 2 diabetes is a progressive condition. Over time diet and exercise will not be enough to keep blood glucose at a safe and healthy level and they *will* need medication. It may take a year or a decade but it will happen. Even with a healthy diet and exercise their diabetes is slowly getting worse. Medication controlled diabetes is not cured diabetes.
 
I can't comment on stem cell treatment as I don't know enough about it. What I will say is that it is generally a new approach and so I feel it would take a number of years to watch for any changes (I.e around 20 years) to proclaim it as a curative treatment.

Of interest this piece of research found that stem cell transplant was not enough to help people with type 2 diabetes so I would not say it is a "cure" of the condition but may help people anecdotally like your friend:
http://www.cell.com/stem-cell-reports/abstract/S2213-6711(15)00067-3

Most people will eventually require medication with type 2 diabetes. It is an established fact that the longer you have it, the more likely you will require medication. As I said it may take decades but it will happen, unless the patient dies first. I think people living with type 2 diabetes for more than 20 years without needing medication is generally unheard of, but I am sure there will be some rare people out there that it has happened for.
 
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I am not sure on the stem cell transplant, but for him he has been 5 years free now from diabetes. He can eat whatever he wants with no issues. As far as long term, only time will tell.

I agree that some people can do everything possible like eating healthy, losing weight and still have issues. Then again there are the ones who get type 2 diabetes directly due to lifestyle and when they correct their lifestyle the diabetes goes away. I think there are actually two types of Type 2 diabetes. One is genetic( the kind that runs in my family) and then there is the kind that is directly related to an unhealthy lifestyle. The ones that are related strictly to unhealthy lifestyle( over weight, eating bad foods etc..), I believe they can get rid of it by maintaining a healthy lifestyle, at least some can.













I can't comment on stem cell treatment as I don't know enough about it. What I will say is that it is generally a new approach and so I feel it would take a number of years to watch for any changes (I.e around 20 years) to proclaim it as a curative treatment.

Of interest this piece of research found that stem cell transplant was not enough to help people with type 2 diabetes so I would not say it is a "cure" of the condition but may help people anecdotally like your friend:
http://www.cell.com/stem-cell-reports/abstract/S2213-6711(15)00067-3

Most people will eventually require medication with type 2 diabetes. It is an established fact that the longer you have it, the more likely you will require medication. As I said it may take decades but it will happen, unless the patient dies first. I think people living with type 2 diabetes for more than 20 years without needing medication is generally unheard of, but I am sure there will be some rare people out there that it has happened for.
 
The ones that are related strictly to unhealthy lifestyle( over weight, eating bad foods etc..), I believe they can get rid of it by maintaining a healthy lifestyle, at least some can.
I understand that you choose to believe what you want to believe. Just that your beliefs are not in line with research, literature or that of the medical community and profession. Research has so far established there is no way of "getting rid" of type 2 diabetes (though what the future holds time will tell), and it cannot be got rid of by diet or exercise. Diet and exercise can maintain the blood glucose at a healthy level, but over time the insulin producing beta cells in the pancreas are no longer able to release enough insulin. At a certain point in the progression of diabetes, insulin or insulin in combination with the other oral diabetes medications is necessary to control blood glucose levels.
 
Long term remission is more believable than a cure. If you're in remission because you've changed to a clean/healthy/balanced diet, then there's always the chance to go back in a flare if you decide to start eating junk/ too much animal protein vs vegetables, too much fruit.. You should try to be detoxing everyday, and foods are great for that, along with a handful of supplements (kelp, TMG, magnesium, digestive enzymes). There are more variables to the equation that will always be there that can bring about a Crohn's flare
 
I guess the big picture should be looked at on whether a particular treatment method is useful to you personally and not make claims either way whether remission or cure. Instead make the claim you can measure to some degree, whether it was useful in alleviating your symptoms.

When the research doesn't have a definitive cause, and the diagnosis is based on symptoms and characteristics of the disease, you really cannot hope to claim remission or cure because you don't even know the cause. It could be either or none. Is the cause still there or not? What was the cause of the symptoms? Are the causes the same for everyone? Is there complicating factors involved, coinfections, environmental exposures, past medication complications? Genetic componants, are they all the same?

Nonetheless, we can make some logical assumptions based on people's experience. What might be useful to others based on their results?

While our disease is likely not a cookie cutter situation, in most cases it is unlikely to be completely different. Some aspects are likely similar and some are likely not. If Crohns was a simple disease, wouldn't we have a one size fits all answer already? We don't because it isn't. I think that is a pretty accurate statement. It's not like malaria, or chickenpox or other disease that have more or less a single cause. If it was, it would be far more easy to eliminate.

My own amateur research on my particular case of Crohns indicates at least four pathogens involved. Unless one of these is the ultimate cause of the immune dysfunction, and it likely is not, all I have done is reduce symptoms of the disease. But again, this is likely not everyone's cause and I have no clue if it is remission or cure. I assume remission. My absolute best guess at the ultimate immune system dysfunction is lack of vitamin D starting the ball rolling. Then exposure to the pathogens. Then the gradual increase of those same pathogens and maybe others I am not aware of.

Even my understanding of my Crohn's is likely too simplistic. But, like the old football adage goes, if it works, stick with it until it doesn't work any more.

The people posting what works for them may or may not be useful to others. I think the answer to the problem of if its remission or cure would be not to characterize it as either. Just say this has helped my Crohn's symptoms, possibly it can be useful to others.

Dan
 
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