How I'm Managing Crohn's

My story with Crohn's is surely a common one:

Diagnosed in the 4th grade. Symptoms included paleness, skinniness, lack of appetite, abdominal pain, bloody diarrhea, fatigue, and joint pain.

I was initially treated with prednisone, which really beat back the Crohn's along with some unfortunate side effects. such as "moon face", excessive weight gain, and a lack of growth (also caused by entocort). I grew hardly at all between 4th and 8th grade. I started growing again in 9th grade after starting on a new course of treatment.

For the next few years, I was treated with Entocort, 6-mercatapurine, Azathioprine, and lastly Remicade/infliximab (briefly, before I had an allergic reaction to it on my second infusion). The only medicine that truly kept me in check was prednisone, but that was not an option for long term use.

The summer before 9th grade, I had exhausted all of my treatment options except Humira. My mother by that point was fed up with ineffective traditional treatment methods, so she told me to try the Specific Carbohydrate Diet. My doctor told her that it "absolutely would never work to treat the Crohn's..."

Five years later, the Specific Carbohydrate diet is the only long-term treatment method that has EVER worked for me, and it has made me healthier than I have ever been. It's a big sacrifice to follow such a limited diet, but I find that it's worth sacrificing ice-cream and bread in order to retain an otherwise high quality of life. I'm now 18, almost 19. I have a girlfriend, I performed as a lead actor in a school musical, I enjoy playing tennis regularly, and I will now attend an elite college after finishing in the top 10% of my class. Most importantly, I am healthy and happy. If I hadn't found the diet, I don't know where I would be. It certainly wouldn't have been as good as where I am now.

To my old doctor who almost screamed at me "Diet will NEVER WORK AS A TREAMENT OPTION," I question your morals and motives. You tortured me year after year when all I had to do was quit eating complex carbohyrdates. Do you really want to help your patients?

Prednisone can help you in the short term, but THE ONLY WAY TO DEFEAT CROHN'S FOREVER IS THE SPECIFIC CARBOHYDRATE DIET.

Try the diet. Change your life.

Bless your heart. thank you for sharing. may good health continue!

Thanks for telling us your story!!

For a severe case I personally believe SCD and other diet and supplement mods can take care of 60% of your symptoms. Adding Med's can knock the rest of the symptoms out.
Mild cases may be treated well with only SCD and other diet changes. I have used Some concepts form SCD for 6 years I have had no surgery of complications, I don't use yogurt though, but eliminating simple sugars has helped the greatest. I don't eat meat but I do eat cheese.

If I had read this 5years ago, I probably would have just looked right over it. But, YOU'RE RIGHT. I was on everything from prednisone and Entocort to Humira. I tried the Specific Carbohydrate diet about 2 years ago (when I was sick of stabbing myself with humira) and have never felt better!! I'm also one of those people who "could never go on a diet of my life depended on it" but it's really not that hard! You just need the right guidance and need to get a little creative with your cooking. Direct message me if you're considering it and I'd love to help you get started! It's hard to do alone, but was 100% worth it.

I used to believe that SCD alone could take you places but you have to be careful in how you do it or you could just be starving your beneficial bacteria of essential prebiotics leading to further loss of food tolerance and making it harder to rebound later.

Unfortunately traditional SCD diets often aren't an option to me because some of the foods they use as replacements aren't things I can eat. Things like almonds and almond butter, nuts of any kind, many fruits, I simply end up too calorically starved to maintain weight.

SCD isn't a cure, it's a management option, and it may be an important clue in finding a cure.

My doctors gave me the same spiel when I was slowly dying as their humira and prednizone failed to get a response. Gluten was slowly killing me, I was in seriously bad shape. When I came back after about 2 months off humira and prednizone with significant improvements they had no real explanation except more tests and send me to a nutritionist who tried to push fiber on me when my stomach wasn't ready for it.

Congratulations on your succes!

Many things that are "legal" on the diet I have issues with even in remission. How does one deal with that?

How do you know you have defeated the disease? Did you have it confirmed with blood tests and a colonoscopy? I ask because I know you can have damaging inflammation even when you have no symptoms. Have you had flares since being on the diet?

My Dr has said there is no diet for Crohn's, but any foods that might upset a normal digestive tract may send mine into a tailspin. You just have to know what your body doesn't like and stay away from common triggers.

Yes, I had a colonoscopy a year later and was told there's minimal evidence showing mild crohns-so i'm on the right track!
In terms of foods/nutritional deficiencies, Ive been working with a nutritionist. I've combined other tests (LEAP protocol and IgG and IgE testing) along with the specific carbohydrate diet. It just takes creativity there was a time when I wasn't eating any nuts either and I relied on seeds and supplements to get some of those nutrients. There are ways around it without starving your body-I promise!
If you are craving carbs, try riced cauliflower or zucchini noodles in place of pasta/rice. And you can use sunflower butter in smoothies and other things like that. Just need to get creative and get over the mental part thinking you can't do it.

If your gut/intestines are inflamed it's important to pay attention to what's going through them.

Chronos08,
I love hearing how your health turned around. It sounds as if you have a wonderful life now!

We are in midst of big improvements for my son after prednisone (a miracle drug for him too) , EEN, and now SCD paired with SCD. What do you mean by defeating Crohn's? Could you tell me whether you have any symptoms at all? How bad were the scopes before you started? And, are the Drs on board with the diet since you are seeing reduced inflaation?

I hope you continue to have great health and success in school.

Hi and welcome. its been 5 years you are on this diet?and you have had a colonoscopy 4 years ago? (I just want to make sure I understand properly).
do you see the same GI you had before? or a new one?

that is so good to hear. My daughter is trying it but really isnt sticking to it.... her treatment methods have been very similiar to yours with only the prednisone really keeping this in check.. She is now weaning off of it and using the Mesalamine enemas to help. Have you stuck to it?

The following responses correspond to the comments of (in chronological order)
1) earthshine
2) Wildbill 52280
3) ConfusedCrohny
4) InstantCoffee
5) teeny5
6) Optimistic
7) Organic Lady
8) Hope345

1) earthshine thank you!

2)Wildbill 52280- Thanks for your comment. Could you elaborate on how you have modified the SCD to better treat yourself? I find that it's very difficult to eliminate simple carbs from the diet, as most of the diet consists of simple-carbfoods/monosaccharides. I do not use the yogurt either. Perhaps I should, as I'm sure that the probiotics would be beneficial.

3)ConfusedCrohny Right on with the SCD! I also found that it was easier to switch to the diet than I anticipated. I suppose it was easy because the foods on the diet make me feel so good that I don't want to eat anything else.
And yes, creative cooking is absolutely necessary with the SCD. I eat coconut flour pancakes (homemade) with chicken sausages and apple butter (from whole foods) every morning for breakfast, which is a huge calorie source for me. I had to use coconut flour because I am allergic to almond flour. Other than the pancakes I eat very plain foods.

4)InstantCoffee I understand and relate. I couldn’t eat almond flour, so I had to substitute coconut flour. It seems to work pretty well. I can’t eat seafood due to allergies, so I avoid that. Luckily I do not have fruit allergies, so I am OK with those. I am not calorically starved, but I am not a macho man. According to some BMI websites I’m about average (6”1 and 165 pounds). A good solution to the SCDs effect of harming probiotics in the gut may be the recommended SCD yogurt or some probiotic capsules. Best wishes.

5)teeny5 That is interesting. I haven’t had problems with any SCD foods, but I do typically eat organic, additive-free stuff. Is it possible that the foods you are eating contain additives that aren’t permissible on the SCD?

I had a blood test recently as part of a physical for college which stated that all of my values are normal. I used to be anemic with Crohn’s, but that has gone away. I have not had a colonoscopy since starting the SCD, though I strongly assume that my guts are OK since I feel healthy. No flares, but I am strict with my diet.

My doctor and your doctor would make good friends. My doctor told me that diet would never work as a treatment option. All people are unique, so I can’t promise that adhering to the SCD wouldn’t cause you a tailspin. For me, however, it seems to be the only thing that works.

I must say that it’s hard to imagine the diet spinning someone into a tailspin. It’s a very simple diet with very simple foods. As long as you aren’t allergic to the foods on the list, following the diet shouldn’t have any negative consequences.

6)Optimistic Thank you! I am glad to hear that your son is doing better! I also appreciate you telling me about the EEN, which I hadn't heard of until now. I assume that you meant that your son is trying a combination of "EEN and SCD" rather than "SCD and SCD." If this is not the case, please ignore the following: It seems that there is an interesting difference between EEN and SCD mainly in how they classify carbohydrates. EEN seems to suggest that foods containing soluble fiber are OK while foods with insoluble fiber are bad. The SCD differentiates between monosaccharides and polysaccharides (simple carbs and complex carbs), and it claims that only monosaccharides are the good rather than all carbs with "soluble fiber." How do you manage combining EEN and SCD when they diets contradict each other? (For example SCD permits cabbage while EEN doesn't). Additionally, does EEN allow any green vegetables? I learned in biology that all green plants have cellulose which is an insoluble fiber. I eat a lot of green vegetables, so idk if EEN would work for me.

When I said that I had "defeated Crohn's," I intended to say that I have made it a minimally-invasive part of my life. I really only have to think about Crohn’s when I’m going out to eat with other people. If I’m eating at home, I have a supply of foods that I can snack on.

I do not have any symptoms. I used to have bad seasonal allergies, but those have gone away. I still have food allergies to shellfish and some tree nuts, but I have had those for my whole life. The only “symptom” (I use the term loosely) that I have is that it’s hard to gain weight; however, I have read online that this is a secondary effect of being on a high-protein, low-carb diet. It seems to me that the only way to gain weight on this diet is to gain muscle mass. This is a positive or a negative depending on one’s current weight situation. I do experience tinnitus, or ringing in the ears, but doctors have told me that it has no correlation with Crohn’s. They said that it’s most likely hearing loss from playing the guitar too loudly. I don’t know if that’s true.
The scopes were OK before I started, as I had just had another round of prednisone. When I was first diagnosed, I was told that I had significant inflammation in my ileum (but nowhere else).

The doctors are not on board, however that may be because I haven’t talked to them since I began the diet. The last interaction that I had with my doctor was the one in which he told me “the diet will never work” five years ago.
Thank you for the kind wishes. Best wishes to your son as well. Sorry for the excessively long response.

7)Organic Lady Thank you! Five is pretty much correct. It could be four and a half. I couldn’t pinpoint the day I began the SCD. I had a colonoscopy probably a year before I started the diet. I haven’t had one since beginning the diet. I am not seeing any GI doctors at this moment unless you count Elaine Gottschall, who is author of the book “Breaking the Vicious Cycle,” which is how I originally learned of the diet. I have an appointment with her book every once in a while to determine if a food is “legal” for me to eat.

8)Hope345 I’m sorry that your daughter is having trouble with the diet. I have stuck to the diet very strictly. I never intentionally eat a food that isn’t a part of my diet. Sometimes at a restaurant they’ll forget to take the flour out of the sauce for my entre, but that’s the only time I break the diet. Small dietary infractions don’t make me feel bad, but I don’t make a habit of them. I’m sorry to say that sticking to the diet pretty rigidly is the best way to make it work. Best wishes.

I'm really genuinely happy for you @Crohnos08, you've put alot of hard work in and it is clearly paying off.

Just a point - you are in stable remission, it is not cured. I really have issues with the term defeated or cured when it comes to IBD problems.

Anyway, hats off to you. And the very best of luck in the future, keep the positivity going!

Hi Crohnos08. I love hearing your success story!

There actually are quite a few more like you, teens or young adults, whose stories I've heard through our ped Gi office. They don't typically post on forums so I think it seems like it is rare situation to do what you do and feel/measure etc healthy.

My typo certainly made my first post unclear. He is on SCD, rigid, no flex and no slippage except for one time when another dr told him diets were garbage and he promptly went home and had a bagel! EEN is a complete formula diet which he started first. Now that he is on SCD he still has about half his calories, maybe a third some days, from formulas. I know Boosts, Ensures, and even prescription formulas have a few ingredients that are illegal on SCD. We are aware of this conflict. We've talked to two IBD focused nutritionists and they can't explain how it works together but it does.

Had you told me last year this time, when he was down 25 pounds and in hospital, that he would be at a sports camp now, I would not have believed it.

kikig said:

Just a point - you are in stable remission, it is not cured. I really have issues with the term defeated or cured when it comes to IBD problems.

Click to expand...

@kikig
SCD works because it starves pathogenic overgrowth allowing the probiotic gut micriobome flora to rebalance. It is a cure. The doctor's have sold you a lie, a misgnomer. It is curable. Wake up.

Crohn's and colitis are not a "disease" or chronic death sentence condition - they're a lack of probiotic organisms to protect and defend our intestinal lining. Autoimmune disease is a sham - nothing more than a modern tragedy caused by overuse of antibiotics, fluoridated water supplies, excessive hygienic practices, over-consumption of carbohydrates, and a severe lack of probiotic foods/supplementation leading to dysbiosis and leaky gut. Add to that a capitalistic medical industry run by big pharma cronies that don't want to acknowledge the true cause of these "autoimmune" diseases being pathogenic in nature. Why do you think they give you antibiotics for abscesses and fistulas??? Yet they speak nothing of diet and probiotics?!?! The only way to fight these misconceptions is to look at the science and to expose the truth.

@Crohnos08
I'm proud of you Crohnos for turning around your health. I only wish I took more responsibility for my illness at your age. Unfortunately, I don't think all the information was out there on the internet back when I was diagnosed. I'm mostly on the same track as you but I have a focus on restoring healthy probiotic organisms to turn the tide of my "Crohn's" and chronic non-digestive symptoms.

As far as fixing food "allergies", likely they're just sensitivities due to a leaky gut. Work on healing your gut with making home-made bone broths, and L-glutamine supplementation. Probiotics will also help you heal leaky gut by displacing pathogenic organisms that are tearing wholes in your gut causing food particles to leak in and giving you food intolerance.

WingedVictory there is no cure for Crohn's disease. Any claims otherwise are not allowed on the forum unless you have scientific evidence to back up your claims. Diets and other alternative treatments can be used to help try and get you into remission but they are not a cure. We have many members who have failed the SCD so it clearly does not work for everyone.

@Jennifer
I understand that and we've all heard that from doctors. I heard it about 15 years ago when I was diagnosed. From a semantics perspective...what SCD achieves is the closest thing to a cure, but I actually do agree that it's probably not the best way to describe one method of treatment. And SCD is just one aspect of the "cure". I just get irritated by forum members regurgitating discouraging sentiment that has no value whatsoever. It starts to make them sound like drones...Why steal his thunder? Whats the worst that could happen? People try his diet? Its perfectly safe and provides enough nutrition. remission sounds like a term for cancer patients because the tumor is benign. It just seems inappropriate once you start to understand the microbiology behind all this.

If dysbiosis can be caused by various strains of pathogen overgrowing (an individual variable) how can doctors even identify a constant catalyst? That's how they get away with saying they don't know what causes Crohn's specifically in each persons case, nor what cures it. There are long lists of pathogenic organisms that can be opportunistic and lead to intestinal permeability, systemic overgrowth, and specific symptoms. Now if doctors were to anyalzye our biomes with services like ubiome we would have more insight into what organisms are overgrown to better treat through diet and supplementation.

If the diet were stopped then your symptoms would return. It's not a cure it's a way to manage symptoms.

Many of us are tired of hearing that we haven't tried hard enough and that all we have to do is try a simple diet (this is what your posts sound like when you claim it's a cure) when that's clearly not the case. I could easily claim that I'm cured and that all people have to do is have a resection, stay on Mercaptopurine for the rest of their lives and follow a typical American diet with no restrictions. I've been in stable remission for 15 years so it must be true. It's not and to claim that it's a cure is irresponsible and gives false hope to people. That's why we don't claim that anything is a cure here on the forum.

Crohnos- I have issues with apples, beef, lettuce, kale, carrots, celery if I eat them more than 2 times a week. Fruit and raw vegetables will cause issues if I eat them regularly. I am not following the diet, but was looking over the info online. I mostly eat organic, gluten free, non GMO, but I don't do it because it eases symptoms...it does not, but I feel better about what I am putting into my body.

Glad that it works for you, but not something I could stick to. I do not believe diet is the one stop solution for everyone and would hate for someone to be overly optimistic in doing the diet only to have it not work. For me stressing about/analyzing every meal would cause more stress that in turn aggravates my symptoms. I plan to eat what I want while I can because I too clearly remember what it was like not being able to eat anything solid.

Teeny5, I'm glad to hear you're feeling better about eating good food! I was THE PICKIEST eater before I started a diet, so here's some ideas (working around your food sensitivities:

-make lots of snacks to have on hand (cookies with almond flour, homemade larabars, hummus, whatever you like)
-try making bone broth and soup with the vegetables you can eat
-my favorite of all is zucchini noodles (cook them so they're soft enough to digest and put some pesto or sauce on!)
-grind up cauliflower in a food processor and add some spices/sauce/whatever

If you have enough food and ideas on hand, it's much less stressful and actually begins to be fun. For me, it was stressful for the first 2 weeks, but then cooking became one of my de-stressors! It is time consuming but if you prepare food ahead of time, you can just grab a snack on the go.

**be careful buying gluten free at the store because some things are very processed and may irritate your stomach more**

Sounds like you're thinking on the right track though!

thank you for your eloquent responses Crohnos08, quite impressive, I must say :ysmile:

Im glad you are feeling well and blood report looking good. Out of personal experience, i would still encourage you to have a colonoscopy every few years or so because sometimes, it is possible to have inflammation when we dont feel it. I had 10 years of experience with recto-colitis and thought I was in remission when, 4 years ago , new GI insisted I get a full colonoscopy even if I was telling him I was well. I was used to simple sigmoidoscopy but he wanted the full check up. I was unhappy with this but he convinced me. It turned out I had the biggest surprise and had mild inflammation somewhere else than usual spot. I'll always remember my reaction when he woke me up in the middle of the procedure to show me the inflammation on my ileum. I just coulnt believe it!! so my conclusion is, it is safer to get GI confirmation about remission, rather than subjective clinical feeling. Moreover, if we want doctors to open up about diets, one key could be for them to see patients doing well on diets. if every patient who go well doesnt return to the clinic how can they possibly change their opinion?

Kikig- Thank you- I wish you the best.

WingedVictory's sentiments reflect my own. In my case, all that I had to do was try a simple diet. I take some offense at the insinuation that my own story, which is 100% true, may be providing false hope to people. My life's story isn't false, and it is a genuine story of hope for people who are struggling to fight a brutal battle against Crohn's. I understand everyone's sensitivity to the word "cure." It's kind of hard to imagine being "cured" of Crohn's. But for the last 4-5 years, the SCD has cured me more than any other treatment on the market, and I feel that I have every right to say that according to the definition of "cure," which is as follows: to "relieve (a person or animal) of the symptoms of a disease or condition." Am I cured forever? I'd like to hope so, but obviously nobody is so clairvoyant as to make such an outrageous claim. I'd never claim that I am cured forever, but I have been as healthy as I've ever been in the avenue of 4-5 years. I might relapse tomorrow, but today I am cured provided that I stick to a simple diet. (I regret stating "5 years" as an exact figure, as I can't be sure that I have been on the diet for exactly 5 years. 4-5 is more accurate. My apologies.)

I understand that the SCD might not work for everyone, but it's certainly worth a try for people who haven't yet done so. I wouldn't dare declare that it's a cure for everyone, but it's a lot easier to try a diet than it is to try pumping Remicade (mouse proteins) into one's veins at the cost of $10000 per infusion (I saw the bill. that's the cost without insurance.) + increased susceptibility to infections + many other unpleasant side effects such as allergies which can land you in the ER. (Fun fact: after my second infusion of remicade I was so allergic to mice that my eyes turned bright red after standing next to a mouse's cage. It was as interesting as it was scary.) Better to try a diet than to try surgery, which many times doesn't even work (talk about false hope!). A diet can't hurt people nearly as much as more mainstream treatments.

I rest my case. My statement still stands: if you haven't tried the diet, I highly recommend it. If it doesn't work for you, I am sorry. My only purpose on this forum is to provide hope to people and shed light on a viable alternative treatment method. Additionally, optimism is important in fighting Crohn's, and my post did indeed aim to provide some optimism and hope. I am sorry if that is offensive to anyone, but optimism is how I roll.

I appreciate all of the constructive comments on this page, such as yours WingedVictory. I'm going to look into some probiotics and l-glutamine because that seems like a good idea to get rid of my food allergies.

teeny5- Are you in a relatively stable state with your Crohn's? Carrots and celery used to upset me a lot too when I was more sickly. It could be that carrots and celery are causing irritation to an already inflamed GI tract because they are hard-to-digest insoluble fibers. As for apples, do you eat them with the skins on? The skins are full of tough, insoluble fiber which could be irritating as well. Interestingly, I think all of the foods that you listed are insoluble fibers except beef. Not sure what to tell you about the beef. I'm no doctor but it might help you took read about EEN. EEN suggests that one should eat soluble fibers to avoid GI issues. Best wishes my friend.

ConfusedCrohny- I was really picky too before the diet also. Kinda interesting. And yeah zucchini noodles are AWESOME! They were actually serving those at an Italian restaurant I went to a few weeks ago. They were great with some chicken, white wine sauce, and parmesan! Cauliflower mashed potatoes are also excellent hahaha. Spaghetti squash is another great noodle option.

Organic Lady - Thank you for the advice; I appreciate your comment.

@Crohnos08 - Optimism is also how I roll.

I notice you changed the title of your thread, thank you from me to you.

The very best of luck in the future!

@Jennifer (and her supporters)
None of this is meant to offend anyone specifally, assume anything of you, or take away from their efforts with dietary approaches. No need to be personally defensive in responses. :devil:
Since you brought up the Standard American Diet (SAD), immunosupressants, and resections lets look deeper into those aspects. Avoiding the pitfalls of the SAD is part of a cure. If people could conceptualize what the processed food industry is doing to all of us on an astronomical scale (mass extinction conspiracy theories anyone?? Just kidding) their stomachs would forever instinctively revolt in disgust at the idea of even contemplating consumption of that destructive garbage. Packaged foods and restaurants (chains especially) don't even really appeal to me anymore. Which is why everyone on this forum should take the time to research food science (read a book like The Paleo Approach, Perfect Health Diet, etc) and the negative health implications of modern unhealthy processing of foods like grains and legumes by the food industry. Add on top of that all the other foods that contribute to leaky gut. The problem isn't us, it's the food and the mad scientists that manipulate it for their greedy ambitions to fuel their profits and your addiction to their product. These are external factors that we can't avoid unless we only consume grains that are properly soaked/fermented and beans that are soaked and sprouted. We can't make a restaurant use properly prepared safer ingredients, but we can choose what we order or to not dine out at all. Same thing with all the processed foods that consume a good 60% of most grocery storefront space. As to why some can eat the SAD and not get sick...my thinking is that they have better adapted gut flora to break down certain proteins and they heal intestinal damage quickly. Eventually at some point in their lives, in some form, it will likely catch up with them and disease will rear its ugly head.

People should set a standard in their lives to primarily only eat home-made meals from whole foods regardless of their schedules. To avoid foods that are destructive or eat them in strict moderation. Unfortunately everyone caters to convenience and "foodie" addictions these days. Add to that all the crooked lifestyle habits spurred from the challenges of living in a "greedy, I want it all" society that is ridiculously fast paced. We have a choice to avoid specific foods and change our lifestyles. I guess I'm to the point of believing more in exhausting all possibilities for improvement and refinement rather than making excuses because I don't believe I should have to follow rules in order to live a healthy and productive life. Am I jealous I can't just go out to eat all the time or eat a frozen pizza every week, etc and still be healthy like other people can? You betcha. Knowledge is power and we live in an age of information warfare. As a more global society (melting pot) I don't think we ever had a healthy concept of nutrition...it's a work in progress as we learn more through microbiology.

Immunosuppressants, just a band-aid approach. As we know they work at suppressing the immune system for some and not others. Lets be honest, who wants to go around functioning with an impaired immune system? I know, I know we take what victories we can get. While I was on Humira (fail) I never stopped researching and changing my diet; I never gave up. With diet we can't tell if a forum member stuck strictly to a diet like Autoimmune protocol or SCD for a year or two in order to get results. Even myself avoiding foods I wasn't healing because I didn't have bone broth or glutamine supplements in my diet. Eating lots of meat protein wasn't enough. Ultimately, it's a lifestyle change based on food science as it relates to the gut microbiome, it's not a cure all in a few months approach like some infomercial fad diet.

As far as resections that's a bit of a stretch for a cure isn't it? Doctors start with antibiotics and if that can't calm the "inflammation", well really kill off the pathogen overgrowth, then they start getting "scalpel happy". I was at that point once and the antibiotics luckily worked. I tend to wonder if resections are even necessary in most cases where they're performed. I bet they would have cut out my ileum section before they recommended trying other antibiotics like xifaxan or...*gasp* high dose probiotics and a carb reduction diet. Or heck even immunosuppressants. Either way it's good that something worked to give you a relief of your symptoms - albeit an extreme approach. I do believe that we have to be open-minded about acknowledging alternative treatment approaches, but I'd say surgery is the least logical approach from my understanding from researching...I think surgery just doesn't work well for debate about autoimmune treatment in any way. Actually I'd guess that newer treatments are going to steer farther and farther away from surgical methods. Probably immunosuppressing biologicals as well as they're a huge expense that...lets just say probably aren't helping the economy.

I don't think anyone is trying to discount that SCD is very helpful, but the problem is that in some cases people that discontinue traditional medicine to try alternate treatments end up with uncontrolled inflammation and needing resections that could have been avoided with pharmaceutical treatment.

Either way, meds or no meds, you gamble on irreversible damage. That's why it's important to pursue alternate treatment under the supervision of a GI doctor, even if you don't intend to get medication from them.

I say this as someone who abandoned their GI doctor after they failed to see I was non-responsive to Humira and Prednizone and pursued alternate treatment with great results. I don't have the money right now to go back and get screening done, but I really think I need to. I'm worried if I do need any kind of surgery I simply can't afford it, let alone the scans and tests needed to see it.

I'm not 100% certain on if it's true that inflammation can be there without symptoms, or if it's just that many patients see dramatic improvement and feel asymptomatic because they're so used to living a life in extreme pain / discomfort that they overlook more reduced symptoms of their disease, and in fact DID have indicators of their disease's progression.

I still think this is something we need to make people aware of before they choose alternate medicine, and I wish I had been more aware when I left my doctor 3 years ago.

That said I've remained in relatively good health and not had a major flare since discovering dietary limitations, however I also believe that crohn's dieting is much more complex than SCD / allergy based diets can account for. It may include both the inclusion of prebiotics, probiotics, and in light of recent studies I've seen it may even involve levels of amino acids like tryptophan and other hormone altering substances like soy, BPAs, etc. because there's a strong link between Crohn's and neurotransmitter / hormonal disturbances that can't be overlooked.

I, personally, cannot simply accept a limited diet though, I want to live my life free of restrictions, so I'll continue to search for therapies that allow me to expand my diet and live a normal life. If I thought a pharmaceutical drug could do that for me, I would be willing to face many side effects to take it, but so far none have.

InstantCoffee said:

Either way, meds or no meds, you gamble on irreversible damage. That's why it's important to pursue alternate treatment under the supervision of a GI doctor, even if you don't intend to get medication from them.

Click to expand...

I completely get where you're coming from and would agree with this for those that seriously need meds. I may come off as "Mr. anti-doctors, anti-surgery, anti-pharmaceuticals", but extreme circumstances call for extreme measures. Every tool has its own advantage depending on the situation.

The caveat being that as many of us know the vast majority of GIs REFUSE to acknowledge nutrition as it relates to microbiome dysbiosis being the root cause. So basically all they can do is give us drugs and we're free to do what we want with nutrition and supplementation on our own. They don't seem to want the liability of diet advice - it's too uncharted territory for them to justify their advocacy. Maybe if there were some sort of kickbacks for recommending the Paleo diet. Hahaha.

WingedVictory said:

I completely get where you're coming from and would agree with this for those that seriously need meds. I may come off as "Mr. anti-doctors, anti-surgery, anti-pharmaceuticals", but extreme circumstances call for extreme measures. Every tool has its own advantage depending on the situation.

The caveat being that as many of us know the vast majority of GIs REFUSE to acknowledge nutrition as it relates to microbiome dysbiosis being the root cause. So basically all they can do is give us drugs and we're free to do what we want with nutrition and supplementation on our own. They don't seem to want the liability of diet advice - it's too uncharted territory for them to justify their advocacy. Maybe if there were some sort of kickbacks for recommending the Paleo diet. Hahaha.

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It is sort of a grey area.

Crohn's treatment is looked at by some GI doctors in one light.

To some doctors the ideal outcome of a Crohn's treatment is to give their patient a normal life (I.e. unrestricted diet.) If the patient only finds relief from dietary restrictions, then their treatment isn't really 100% working and they should be looking to alter it. Now if they have the patient changing their diet and seeing improvement, then it's harder to test their pharmaceutical approach as well.

You then risk the patient going, "Wow, this works so great, I don't need you anymore! I just eat SCD and I'm healthy." then they leave, and if they come back in 10 months, 2 years with severe inflammation that went unchecked, now they try to blame the doctor.

I think this might give rise to the fear of advocating dietary 'treatment.' They stress that 'diet isn't a cure or effective treatment' in the sense that it won't fully replace medical intervention for many patients, because many people are incapable of using critical thinking to determine that dietary treatment can improve their symptoms without completely curing them. To them no symptoms = no disease = why do I even need a doctor?

It's unfortunate but doctors don't like to overly involve patients in the actual discussion or knowledge of treatments because some of them are simply too stupid to discuss it with for fear they'll misunderstand and do something bad, so instead they approach it as "I'm the expert, just do this because I said so and tell me how it turns out in a 4 weeks."

My doctors never really discussed treatments with me, it was always just that, "This is what I think is best, go home and do it."

I think it's important for us to understand how drugs work, how the disease works, and all we can that way we can know what to report back to our doctors so they can help us.

Crohnos08 my comment was in no way directed at you as you did not outright claim that it was a cure that it would work for everyone. When people hear the word "cure" it means forever. If you stop the treatment and the disease returns then it's not a cure. If you're able to manage your symptoms and keep your inflammation under control with diet then I think that's a wonderful thing so thank you for sharing your story and please keep us posted on your progress.

My GI is very open to diets and alternative treatments and I know that he would be willing to continue running tests for me to check and make sure that there was no inflammation and that I was still in remission even if I refused to take any medication. There are some GIs out there who give up and refuse to treat patients who aren't willing to do what they recommend but I think a good doctor will be willing to continue working with the patient. Hopefully you have a GI who's willing to work with you and if not I hope you'll be able to find one who is.

I'm a bit concerned by the bashing of docs on this thread. My gi has also always been open to diets and alternative means of supporting heath in addition to modern treatment methods. However, she will not and should not be the one directing diet etc. and I appreciate that she has never crossed that line or fed into alternative care despite me mentioning I've found yoga and diet awareness helpful - her job is to specialize in gastrointestinal disease and care. while diet can impact, it is not her specialty and should be left for me to discuss in depth or pursue with the appropriate provider. While I've personally never had luck with any set diet I find many of the foods I rely on successfully are on the scd list. Always glad to hear of people finding relief whether through diet, alternative care, or modern treatments as the disease can manifest in such a varied fashion and degree.

duh panda said:

I'm a bit concerned by the bashing of docs on this thread. My gi has also always been open to diets and alternative means of supporting heath in addition to modern treatment methods. However, she will not and should not be the one directing diet etc. and I appreciate that she has never crossed that line or fed into alternative care despite me mentioning I've found yoga and diet awareness helpful - her job is to specialize in gastrointestinal disease and care. while diet can impact, it is not her specialty and should be left for me to discuss in depth or pursue with the appropriate provider. While I've personally never had luck with any set diet I find many of the foods I rely on successfully are on the scd list. Always glad to hear of people finding relief whether through diet, alternative care, or modern treatments as the disease can manifest in such a varied fashion and degree.

Click to expand...

As a doctor, especially when they are crohn's specialists, I expect them to be an authority on all facets of the disease.

The link between crohn's and the microbiome is no longer something we can pretend is circumstantial. It's there and we need to stop pretending like it's only secondary to the problem of inflammation.

The fact is there are dietary risk factors that if left unchecked can lead to the worsening of Crohn's symptoms by furthering dysbiosis of the large intestine as well as SIBO, and by not addressing these risk factors they put their patients at risk of unwittingly furthering their condition.

The studies are out there, and it's no longer just pseudo science guesswork. We have studies showing a clear difference in the levels of firmicutes, bifido bacteria and bacteriodetes between patients with IBD and healthy controls. These bacteria are strongly implicated in immune function, food allergies, intestinal mucosa health, and protection from invasive bacteria.

We know what kind of diets worsen this imbalance, promote the growth of harmful bacteria like c. diff, e. coli and MAP which Crohn's patients are susceptible to due to their existing immune deficiencies and lack of protective natural bacteria.

These are things doctors should know.

When I asked my doctor about it 4-5 years ago he just said, "Take Align." and he couldn't really explain why I should take Align vs. any other probiotic or what it doesn't for Crohn's, but he DID have plenty of Align advertisements around his office.

I'm not saying it was the wrong advice, I'm saying he should know why.

If someone had told me 4-5 years ago I could have saved myself a lot of pain and progression of my condition by cutting back on refined sugars and certain other high risk foods, I'd have listened.

Sorry to hear your experience has been such. But I highly disagree, there is so much a doctor must consider from the type of patient they are trying to treat to the potential for legal liability in addition to treatments and much of the studies done may not apply as directly to crohns as we might assume just skimming abstracts for example. Not to mention they have the same human limitations as the rest of us and aren't databases that can fit together an abundance of info without some types of gaps in knowledge.

My gi has been notorious for hiding when pharma reps come around her office, and was the first to suggest to me nearly 6 years ago that probiotics couldn't hurt if I could afford them but honestly even when I haven't been able to it isn't the defining factor in my experience.

In college i did 3 years with 125/ month For all food and supplements. It was non organic, high simple carbs and calorie foods, simple veggies as tolerated. Multi vit. Vit. D and calcium the only supplements. Ice cream my go to for a treat when walking home from campus. Humira and asathoriprine for disease management and during that time frame prior to humira losing effectiveness was the healthiest I'd been since before my diagnosis at 16.

Yes, diet can make a difference - for example gas causing foods are probably going to be far more painful for a crohnie then someone w/o issues, but correlation is not causation. I find more peace of mind when I can eat the diet I perceive is benefiting me best and wish to pursue.

but to compare, I've been in a full flare, experienced extraintestinal manifestations rendering walking impossible for weeks at a time as a precursor to normal symptoms, for over 2 years with surgery considered too high risk and just as likely to result in poor quality of life, despite diet management of organic ideally sourced foods, vsl#3 probiotics (marketed as the best for crohns/ uc and developed as such for those diseases), and nutrition supplements, pharma treatments, alternative support including basic essential oils as aromatherapy and topical relief, etc. despite all this ongoing changes in disease manifestations have progressed including development of fistula, abscess, fissure, intestinal mass, etc. For the first time. I do credit all of this... work and effort for why my Dr. Trusting me enough to allow me to remain home rather then admit me to the hospital when things have gotten especially dicey and for maintaining my small and large intestine as best as I can because until things can heal some and inflammation is reduced surgery carries as high if not higher risks w/ regards to malnutrition/ absorption of calories, infection, etc. As leaving it in.

Probiotics have helped most following rounds of antibiotics to prevent gut infections from spreading elsewhere, but whether they are something doctor's should buy into and push as long term treatment support? That's a matter of opinion still. And a highly expensive one at that.

This is just an example of just some of what our docs. probably constantly consider/ face when talking to any given patient.

Sorry to hear your experience has been such. But I highly disagree, there is so much a doctor must consider from the type of patient they are trying to treat to the potential for legal liability in addition to treatments.

My gi has been notorious for hiding when pharma reps come around her office, and was the first to suggest to me nearly 6 years ago that probiotics couldn't hurt if I could afford them but honestly even when I haven't been able to it isn't the defining factor in my experience.

In college i did 3 years with 125/ month For all food and supplements. It was non organic, high simple carbs and calorie foods, simple veggies as tolerated. Multi vit. Vit. D and calcium the only supplements. Ice cream my go to for a treat when walking home from campus. Humira and asathoriprine for disease management and during that time frame prior to humira losing effectiveness was the healthiest I'd been since before my diagnosis at 16.

Yes, diet can make a difference - for example gas causing foods are probably going to be far more painful for a crohnie then someone w/o issues, but correlation is not causation. I find more peace of mind when I can eat the diet I perceive is benefiting me best and wish to pursue.

but to compare, I've been in a full flare, experienced extraintestinal manifestations rendering walking impossible for weeks at a time as a precursor to normal symptoms, for over 2 years with surgery considered too high risk and just as likely to result in poor quality of life, despite diet management of organic ideally sourced foods, vsl#3 probiotics (marketed as the best for crohns/ uc and developed as such for those diseases), and nutrition supplements, pharma treatments, alternative support including basic essential oils as aromatherapy and topical relief, etc. despite all this ongoing changes in disease manifestations have progressed including development of fistula, abscess, fissure, intestinal mass, etc. For the first time. I do credit all of this... work and effort in my Dr. Trusting me enough to allow me to remain home rather then admit me to the hospital when things have gotten especially dicey and for maintaining my small and large intestine as best as I can because until things can heal some and inflammation is reduced surgery carries as high if not higher risks w/ regards to malnutrition/ absorption of calories, infection, etc. As leaving it in.

Probiotics have helped most following rounds of antibiotics to prevent gut infections from spreading elsewhere, but whether they are something doctor's should buy into and push as long term treatment support? That's a matter of opinion still. And a highly expensive one at that.

This is just an example of just some of what our docs. probably constantly consider/ face when talking to any given patient. What a doctor says to a patient should often be brought up by the patient. In my view it is the patient who sits at the head of the medical team and should do their own research to serve as points to instigate in Convo at their appointments. Otherwise, due to risk, unless your doc. Has worked with a patient extensively and established a high level of trust the conventional is where their comfort zone will lie for legal purposes and to ensure the best possible likely outcome for the average patient who may not want to spend their life focusing on disease options, let alone pursuing it all. Sometimes it takes time to learn that not all doctors will be the doctor for you, the variety in how they choose to approach treatments and patients is what gives us our best odds at achieving wellness.

duh panda said:

Sorry to hear your experience has been such. But I highly disagree, there is so much a doctor must consider from the type of patient they are trying to treat to the potential for legal liability in addition to treatments.

My gi has been notorious for hiding when pharma reps come around her office, and was the first to suggest to me nearly 6 years ago that probiotics couldn't hurt if I could afford them but honestly even when I haven't been able to it isn't the defining factor in my experience.

In college i did 3 years with 125/ month For all food and supplements. It was non organic, high simple carbs and calorie foods, simple veggies as tolerated. Multi vit. Vit. D and calcium the only supplements. Ice cream my go to for a treat when walking home from campus. Humira and asathoriprine for disease management and during that time frame prior to humira losing effectiveness was the healthiest I'd been since before my diagnosis at 16.

Yes, diet can make a difference - for example gas causing foods are probably going to be far more painful for a crohnie then someone w/o issues, but correlation is not causation. I find more peace of mind when I can eat the diet I perceive is benefiting me best and wish to pursue.

but to compare, I've been in a full flare, experienced extraintestinal manifestations rendering walking impossible for weeks at a time as a precursor to normal symptoms, for over 2 years with surgery considered too high risk and just as likely to result in poor quality of life, despite diet management of organic ideally sourced foods, vsl#3 probiotics (marketed as the best for crohns/ uc and developed as such for those diseases), and nutrition supplements, pharma treatments, alternative support including basic essential oils as aromatherapy and topical relief, etc. despite all this ongoing changes in disease manifestations have progressed including development of fistula, abscess, fissure, intestinal mass, etc. For the first time. I do credit all of this... work and effort in my Dr. Trusting me enough to allow me to remain home rather then admit me to the hospital when things have gotten especially dicey and for maintaining my small and large intestine as best as I can because until things can heal some and inflammation is reduced surgery carries as high if not higher risks w/ regards to malnutrition/ absorption of calories, infection, etc. As leaving it in.

Probiotics have helped most following rounds of antibiotics to prevent gut infections from spreading elsewhere, but whether they are something doctor's should buy into and push as long term treatment support? That's a matter of opinion still. And a highly expensive one at that.

This is just an example of just some of what our docs. probably constantly consider/ face when talking to any given patient.

Click to expand...

What was the time line, was your unhealthy experience after? If you overindulged in simple sugars it can create an overgrowth of bad bacteria in the small intestines and very few of the therapeutic treatments will ever make it to that large intestines to have effect, that's why prevention is so important. It's very hard to reverse the gut once it goes down that road other than completely wiping out and rebuilding which is also even harder.

InstantCoffee said:

What was the time line, was your unhealthy experience after? If you overindulged in simple sugars it can create an overgrowth of bad bacteria in the small intestines and very few of the therapeutic treatments will ever make it to that large intestines to have effect, that's why prevention is so important. It's very hard to reverse the gut once it goes down that road other than completely wiping out and rebuilding which is also even harder.

Click to expand...

Once the gut starts going down that road, you are right, it's difficult to rebuild. But you can rebuild gut flora once stable much easier then you can rebuild an entire intestine due to dragging feet with more aggressive treatment as inflammation and ulceration is the lesser evil of the disease.

Crazy gut flora has been an issue for me and rebuilding/ preventing is pretty much where I've been all along, but treatment of life threatening crohn's symptoms such as abscess trumps re-balancing gut flora on my priorities list and complications such as severe stricturing can highly influence things - more so then probiotics.

My doc has explained it to me like this: crohn's sucks, it can be managed, treated and enter a state of remission providing allowing for a fulfilling and normal lifestyle, however you have an acute case and symptoms are severe which can/ will most likely lead to life threatening situations and/ or require surgery at some point. My experience with a fairly difficult case is why I will stand behind physicians as a whole. I have had excellent and not so excellent experiences with my GI docs. My current and I have established a very trusting and open relationship when it comes to my care. When I want to give up and have been seriously considering just starting to hack the worst of it out, she lays it all out for me. I'm along the lines of its best to hold on to your guts and maintain what there is as best as possible and prevent future damage to the best of my ability we've worked well together. She is always curious to hear my experience with probiotics/ supplements/ yoga/ meditation/ weed but can't provide medical insight as none of those things are her forte. Everything from stress to environment to consumption has physiological effects, but that doesn't mean the information is viable or complete enough to provide information to me as a medical professional. I think for many doctors there is separation between what they will say/ provide professionally and the depth of information, knowledge and opinion they hold personally. Their duty/ vow as a doctor makes where to draw that line difficult.

Here's my treatment/ disease/ management history from past to current. It's long, but I tried to condense as best as I could.

Childhood: organic home-grown vegetables, grass-fed meats, all home cooked meals, nuts, seeds etc. for snacks as a year round competitive athlete. Home canned veggies/ fruits, etc. during winter months - limited known exposure to plastics/ metals. Didn't know what a doughnut or cookie was till starting school.

Around 9 years old started experiencing what I now recognize/ call extraintestinal manifestations and no doctor or specialist could pinpoint what was causing the swelling, inflammation and pain in feet, ankles, and lower legs. Started becoming clear that my development/ growth was slower and behind that of my peers. Had minimal signs of puberty even by 15.

2005-2008: Extreme bleeding, pain, fatigue, etc. but as a teen and being embarrassed I continued with sports/ school until my mom kept me home suspecting the flu... turned out my organs were on verge of shutting down. Hospitalized at 15 for 2 months (spent 16th b-day in hospital) and was diagnosed with U.C. pursued treatment options from lowest risk to higher risk as nothing helped reduce the inflammation or help slow intestinal damage until my first round of loading doses of Remicade in hospital, did not pursue Remicade further at that time since everything calmed down and I was gradually able to get off of Prednisone and finish high school. Diet was as tolerated with a goal of maintaining weight. Diet manipulation, even following work with a dietician/ nutritionist always resulted in severe weight loss (think 10 lbs a week loss when already always underweight) and was deemed highly dangerous/ deadly. Mom worked with diet and we found I could tolerate high lean proteins, nut butters, skinned foods, no seeds, no nuts, no fried foods, no chocolate, no high-fat dairy, some well-cooked veggies and fruit, Ritz crackers, pudding, pancakes/ waffles etc. etc. Pretty much the suggested flare diet with additions as discovered through elimination diet and reintroduction with time/ observation.

2008-2009: Daily probiotics, multivit., vit. d, calcium, B vitamins. Ensure drinks to help maintain weight. Didn't do so well freshman year while living in dorms/ required to use the cafeteria for meals. I do think the flaring and severe pain during that year was heavily influenced by poor diet. Began researching and asking more questions of my doctor, discussing treatment plans - not just what we'd do right then, but what options were if I could hit certain goals.

2009-2010: Transferred schools and lived in a sorority where diet concerns were addressed and followed by the house cook. Limited fiber, high protein, very little raw or processed food. No seeds or nuts. No ice cream/ desserts etc. because it simply wasn't provided. Kept up with treatment but only thing that seemed to work to keep crohn's in check (bleeding, urgency, frequency, pain) was prednisone with maintenance meds (I dont remember what it was... 6-MP maybe? Pills, not yet on TNF blockers). Was doing better then previous year but as I think you might be noticing... there's never been any spectacular break for me - I just continue with life regardless as best as I can. Still struggled with repeat infections (strep-throat, colds, the usual when a lot of people come together from all over). Severe infection causing 105 degree fever led to hospitalization and broad-spectrum IV antibiotics Spring 2010, withdrew from semester and returned home for healing. Upon colonoscopy and endoscopy found severe stricturing through the small intestine (explaining inability to maintain weight and the chronic malnutrition) and have never been able to get complete imaging of it in addition to the usual inflammation/ ulceration of large intestine, new inflammation found at site of ileum. Discussed surgery as I still had a Uc diagnosis but Doc. officially switched to Crohn's and began second loading doses of Remicade because she did not think it would solve my case as it does for some. I am grateful still today for her making that call as I was ready to start hacking away myself. Was still taking my probiotics and supplements. I'm a type A personality and don't do anything half-assed, that has included my health.

2010-2012. Best "3" years. Fall 2010: switched from Remicade to Humira for treatment. Kept Asathoroprine as maintenance/ combo med. after 6 months due to having to travel 2.5 hours for infusions and it just being inconvenient in college. Best I have felt since I can remember. Was able to participate in sports again, but I still hit a point of fatigue far faster then even the least-fit individual. Was able to go out and enjoy the occasional party, did enjoy smoking weed through college especially before meals, but no major changes in diet - was tolerating soluble fibers so I was eating small salads again. Moved out of the sorority at which point I was able to afford 125/ month in groceries: still skinned everything and stuck to the fruits I generally tolerated like apples, peaches, pears etc. My budget was tight so I focused on meeting my nutritional/ caloric needs not my wants and eventually dropped probiotic supplements - figured I was still getting them from the keifer and yogurt I consumed daily. High focus on protein and carbs to maintain weight. Ice cream was my guilty pleasure on the way home, as mentioned previously. Other sweets were treats enjoyed at special occasions and when visiting home on holidays. so, maybe like once a month :yrolleyes: Was off of prednisone until 2013.

Spring of 2012 Humira started becoming ineffective, disease symptoms began to increase (dropping weight, pale, anemic, etc.) but severe symptoms were still being held at bay. Graduated college Winter 2012 underweight, pale, exhausted, and with the help of understanding professors who were willing to work with me those final 2 semesters so I could do a lot from home. At 5' 6" I have not been able to maintain above 100 lbs. apart from this 3 year period during which I stayed between 108-125 until things began spiraling out of hand despite ALL efforts.

Spring 2013-Spring 2014: Began probiotic supplements again due to finally having an income. 2 weeks into starting my job in a law office post-graduation I began to experience extreme pain, exhaustion, and heavy intestinal bleeding in the large intestine. Had been a change in diet: I had started eating oatmeal in the mornings. Cut out oatmeal and saw a decrease in blood/ pain but by July I could not walk due to reappearance of extraintestinal manifestations such as I'd experienced w/o explanation prior to my initial diagnosis. Tried following gluten free then scd specifically but continued losing weight (7 lbs in 1 week) and was unwilling to risk any further weight loss. Had not used pain killers etc. since initial hospitalization and morphine due to the withdrawals and addiction that I developed/ struggled with while in hospital, but became necessary due to inability to sleep/ function from extraintestinal pain.

December 2012, kept working with Humira/ Asathoroprine due to having already worked my way through everything else trying to hold out until Cimza was approved. Added prednisone which helped decrease extraintestinal manifestations but they continue to persist to varying degrees still today. Discovered an intestinal mass 50 cm into the large intestine roughly the size of a golf ball, tests came back benign. due to poor physical wellness/ stability surgery for the mass was not recommended. Severe VIRAL infections including catching hand/foot/mouth from a bunch of toddlers (it is generally only seen in young children), colds, sinus infections, yeast infections/ BV back and forth, etc. Maintained use of probiotics, keifer, and plain yogurt, multi. vit, vit. D and calcium. Spring 2014 quit my job and applied for disability.

By June 2014: First attempt to move to CO. Stopped Humira and started Cimzia. Discussed the approval of Entyvio as a possibility since likelihood of Cimzia working was low after failure of Humira. No major changes in diet: chicken, turkey, eggs for primary sources of protein and grass-fed beef only. Simple carbs: white rice and sourdough bread. no legumes or whole grains, no seeds, no skins, no nuts other then nut butters. No fried foods, no ice cream/ desserts unless you count fruit with peanut butter or "fried" in coconut oil with honey and cinnamon etc. Added coconut oil to diet for calories and supposed gut benefits (I like it whether it helps or not, so that's a plus) Began drinking smoothies to help get down that Ensure to boost caloric and nutrition intake and keep spinach in my diet for the iron. Same bunch of supplements etc. Began using essential oils to help manage pain and keep calm but continued to lose weight, began experiencing SEVERE upper GI pain to the point of passing out periodically and occasionally vomiting blood - this was new for me. Upped prednisone from 30 to 50mg. Began vaping weed which helped dull the pain and increase interest in food, was able to maintain 100 lbs.

September 2014-December 2014: Determined to be steroid dependent as no other treatment was viable/ working at this time. Colonoscopy/ endoscopy showed ulceration in and just below stomach in upper small intestine (never present here before) and an anal fissure with scaring from what appeared to be old fissures that had healed. Intestinal mass was still benign. Returned home to live with my mom due to no longer being able to maintain care on my own and keep working with the GI I trusted. Stress levels lowered due to the help I was receiving at home. Maintained diet as tolerated (as well as meditation and what yoga I could manage as I had since starting both Fall 2011) - lots of BBQ'd foods w/o any spice etc. was eating more fish (tilapia and salmon).

Dropped Cimzia and began Entyvio due to zero improvements and continued difficulty managing minor infections (primarily yeast infections). Began seeing improvements on Entyvio and was able to taper prednisone back to 30 mg. November 2014, follow up colonoscopy showed some decreased inflammation of large intestine, however upper GI pain was still severe and was continuing to experience low grade fevers. Did first MRI in ages to see if something was happening in the section above ileum (mid-lower small intestine) that we'd never been able to image due to stricturing. MRI revealed what appeared to be an abscess due to a large accumulation of abdominal fluid. Began Flagyl and another antibiotic and saw minor improvement on a follow up MRI's over 6 weeks. Tapered prednisone to 25mg before bleeding/ more severe symptoms showed back up.

Jan. 2015-Present: Met with a surgeon who essentially told me that I need surgery at some point, but if we were to go in now I'd lose at least 90% of the colon since the two concerns (fistula and intestinal mass) are at opposite ends of my colon and my current frailty puts me at high risk for infection, complications, and other concerns.

Continued follow-up MRI's for monitoring every 4-6 weeks until March.

Stopped antibiotics during a period of time during which fever spiked.

In March abdominal fluid still remained but it was far less then before.

Stopped antibiotics due to intolerance of flagyl (began experiencing peripheral neropathy in feet/ legs). One last MRI in April to check status without antibiotics and while fluid remained there had been no changes, I wasn't running a fever any more, and that technician's opinion was that it was a fistula that had become infected and was on verge of abscess, not full blown and could potentially heal/ settle further.

GI doc. informed me that we were at the end of the line treatment wise and it was up to me whether I wanted to hold out and see if Entyvio would help things further or go ahead with surgery. I chose the Entyvio but asked about Remicade since I'd never technically failed it like everything else - it had just been too inconvenient. Not to mention it's been after Remicade loading doses every time where I've noticed the biggest relief from symptoms and improvements in energy levels/ overall sense of wellness. She was surprised by this idea, but figured it was no more risky then surgery and not a bad thought.

In May there was still no further improvement from Entyvio and I was still unable to drop below 25mg of prednisone without repercussions. Took anti-body test to determine whether or not I'd developed antibodies to Remicade from past loading doses/ courses of treatment (still waiting on results since they accidentally froze the sample and I had to go in and get redrawn).

In the mean time while waiting on insurance to approve and for me to return to the area since I was visiting my significant other who had remained in CO since we'd initially moved June 2014 C-Diff infection developed from the broad-range antibiotics despite heavy probiotic support during and after the round of antibiotics. I thought it was Crohn's flaring hard again but upon telling my doc I was feeling "extra crohnsie" with frequency, high mucus, and deep gut pain she tested due to the round of antibiotics I'd been on and it came back positive for c-diff toxins. June: Constant low-grade fever and dropped from 94 lbs. to 82 lbs. in 2 weeks. 1 round of vancomycin and was feeling much better and back up to 95-98 lbs, but c-diff symptoms returned after about 4-5 days. Monday 6/29 recieved my first loading dose of Remicade for the third time with no reaction to note for better or worse and I will finish my second round of vancomycin today. now holding 102-10 lbs., eating well (same diet as I eat what I can tolerate, just my quantities have improved immensely), with intentions to begin attempting to taper prednisone again following my third loading dose. The goal is to get me off of prednisone since I've been on it so frequently and this last round has now lasted over a year and a half at moderate dosing, to see no bleeding or ulceration, and hopefully see healing of the fistula from Remicade (most likely treatment to achieve this), and eventually do surgery but only need to take out the intestinal mass at this point leaving the rest of the colon.

:drink: Cheers to those who read through it all.

InstantCoffee said:

As a doctor, especially when they are crohn's specialists, I expect them to be an authority on all facets of the disease.

The link between crohn's and the microbiome is no longer something we can pretend is circumstantial. It's there and we need to stop pretending like it's only secondary to the problem of inflammation.

The fact is there are dietary risk factors that if left unchecked can lead to the worsening of Crohn's symptoms by furthering dysbiosis of the large intestine as well as SIBO, and by not addressing these risk factors they put their patients at risk of unwittingly furthering their condition.

The studies are out there, and it's no longer just pseudo science guesswork. We have studies showing a clear difference in the levels of firmicutes, bifido bacteria and bacteriodetes between patients with IBD and healthy controls. These bacteria are strongly implicated in immune function, food allergies, intestinal mucosa health, and protection from invasive bacteria.

We know what kind of diets worsen this imbalance, promote the growth of harmful bacteria like c. diff, e. coli and MAP which Crohn's patients are susceptible to due to their existing immune deficiencies and lack of protective natural bacteria.

These are things doctors should know.

When I asked my doctor about it 4-5 years ago he just said, "Take Align." and he couldn't really explain why I should take Align vs. any other probiotic or what it doesn't for Crohn's, but he DID have plenty of Align advertisements around his office.

I'm not saying it was the wrong advice, I'm saying he should know why.

If someone had told me 4-5 years ago I could have saved myself a lot of pain and progression of my condition by cutting back on refined sugars and certain other high risk foods, I'd have listened.

Click to expand...

If there are studies, I don't think it's fair to criticise doctors for failing to instruct patients to make diet changes that haven't been officially accepted by the healthcare system in which they're working. It takes a while for study results to be translated into medical practice and real situations; there's a lot more to people than their digestive bacteria. Or is the system different in the US? Do doctors where you are base their medical practice on studies they seek out for themselves rather than having to follow standardised guidelines?

And are you saying there are studies showing what every Crohn's patient should and shouldn't eat? And the extent of the improvements they should see? You say it's no longer guesswork, but your posts about your own diet and supplements seem very much to be guesswork. If the information is clear then why are you still giving yourself symptoms from eating the wrong things despite years of focus on your diet?

UnXmas said:

If there are studies, I don't think it's fair to criticise doctors for failing to instruct patients to make diet changes that haven't been officially accepted by the healthcare system in which they're working. It takes a while for study results to be translated into medical practice and real situations; there's a lot more to people than their digestive bacteria. Or is the system different in the US? Do doctors where you are base their medical practice on studies they seek out for themselves rather than having to follow standardised guidelines?

And are you saying there are studies showing what every Crohn's patient should and shouldn't eat? And the extent of the improvements they should see? You say it's no longer guesswork, but your posts about your own diet and supplements seem very much to be guesswork. If the information is clear then why are you still giving yourself symptoms from eating the wrong things despite years of focus on your diet?

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A) I didn't have the information I have now for the past 10 years.
B) Years of bad diet doesn't fix itself overnight.

The studies explain perfectly why what I did turned out how it did.

0 carb dieting will kill the kind of bad pathogens that cause advanced symptoms, but it will cause a disproportionate growth of bacteroidetes to firmicutes leading to more food sensitivities.

InstantCoffee said:

A) I didn't have the information I have now for the past 10 years.

0 carb dieting will kill the kind of bad pathogens that cause advanced symptoms, but it will cause a disproportionate growth of bacteroidetes to firmicutes leading to more food sensitivities.

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On your blog it looks like this type of info is what you've been following and researching/ testing at a personal level so i can understand the enthusiasm and desire to share what you are learning and the connections you may have made through your personal experience.

It's key to remember our info will continue changing as studies progress and become looked at on a wider scale. So what you hold true now may not be accurate in another 10 years.

The level of certainty you display could be more harmful to many then beneficial. I for one struggled immensely feeling a pressure that the crohns was a direct cause of my actions or lack of action AS A CHILD and still as a young adult there is a level of guilt that persists when people present alternative thoughts since "natural" seems all the rage right now and "its my body can heal itself" everyone and their mother has a remedy or diet suggestion. These things are worth questioning and discussing with your doctor, but can be dangerous mentally and/ or physically to pursue unguided.

I support the concept that the gut can enter a state of balance - that the potential exists - but to word your claim so it sounds like this one specific way is the ideal or benchmark someone should strive for can be disastrous especially if thy continue to struggle or fall short of remission despite doing it "right".

duh panda said:

It's key to remember our info will continue changing as studies progress and become looked at on a wider scale. So what you hold true now may not be accurate in another 10 years.

The level of certainty you display could be more harmful to many then beneficial. I for one struggled immensely feeling a pressure that the crohns was a direct cause of my actions or lack of action AS A CHILD and still as a young adult there is a level of guilt that persists when people present alternative thoughts since "natural" seems all the rage right now and "its my body can heal itself" everyone and their mother has a remedy or diet suggestion. These things are worth questioning and discussing with your doctor, but can be dangerous mentally and/ or physically to pursue unguided.

I support the concept that the gut can enter a state of balance - that the potential exists - but to word your claim so it sounds like this one specific way is the ideal or benchmark someone should strive for can be disastrous especially if thy continue to struggle or fall short of remission despite doing it "right".

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I wish someone had explained this to me when I first started getting very ill. Especially the guilt part. I couldn't contemplate the idea of never getting better, so I'd research and find one more thing someone or some science/pseudo-science claimed was wrong with my diet/lifestyle and change it. Then I would still not get well and search for something else. Sometimes I did make improvements in my symptoms, enough to keep me trying but never near as much as I wanted. I don't think I ever really believed it was working, but I just couldn't face the reality of my illness being permanent.

My situation was different though, as the only diagnoses I had at the time were IBS/stress/mental illness. So I was basically being told my humiliating digestive symptoms were due to my psychological failings. When people realised I was actually very physically sick and it wasn't my fault, I got permission to be ill and then I could accept it.

I suppose it could be worth spending all that time and effort on yourself and your digestive system if it actually led to a miraculous recovery, which my own attempts at diet really didn't. I regret I could have put all that energy into something selfless or useful or fun or beautiful.

That's not to say I'm against experimenting with diet or that I don't understand it's crucial to health and plays a big role in Crohn's symptom management. But I think sometimes you have to trust doctors and dieticians to tell you the basic truths that are well established, e.g. my doctors have overseen my bowel rest, transition to soft foods and to a normal diet; my stoma nurse and websites told me which foods were most likely to cause stoma blockages, but I still went through some trial and error applying their advice to myself. And I do believe that things like elimination diets or even SCD may help some people, but it shouldn't become the focus of someone's life or have to be managed with meticulous detail; it's not like when someone has potentially life threatening food allergies. Avoiding food when you have true allergies has a clear purpose and it works, just as eating too much of the wrong things has led to my having blockages and that's the kind of effect where diet really matters. But I think when I tried to fix my health with diet I really needed to acknowledge much earlier that it wasn't working, but also that diet not working wasn't the end of the world.

panda I finally had time to read all of that. It seems like your case is much more severe. I think you mistake me if you think I'm one of the 'diet is to blame for crohn's' group. '

I believe diet could hold an answer to stabilization, but it's clear no one did this to themselves through bad lifestyle choices.

The problem I take is that if we have strong evidence to suggest that the worsening of food intolerance in Crohn's patients as well as inflammation is an imbalance between the firmicutes and bacteroidetes bacteria then that is something that can be addressed through a targeted approach to prevent it from getting worse, and it would also explain why a patient like myself could have their Crohn's 'under control' through biologics but still have their symptoms spiraling out of control.

My doctors told me my condition was under control from the biologics, yet I was still getting chronic inflammation of my skin from the hidradenitis outbreaks and my food tolerance continued in a downward spiral and they had little advice to help me. They in fact dismissed food as a cause for my symptoms despite the fact that my symptoms improved by dietary changes after I had been off Humira for months due for treatment of the abscesses resulting from the Hidradenitis. Unfortunately my treatment diet was a zero-carb approach which lead to a short-term remission but would but a further overgrowth of bacteroidetes and reduction of firmicutes strains, my food tolerances progressed, I lost more dietary options and I could get no explanation as to why foods that were safe were slowly being lost to me!

Now I finally have that explanation, and it makes perfect sense.


If we only target the one aspect of the disease but treat the others as secondary until they actually result in severe disbiosis like SIBO and C. Diff then we're leaving patients to sink or swim on the own luck of the draw of a combination of their diet and natural gut flora.

You'd been put on repeat doses of antibiotics for infections as well as prednizone which is known to alter gut bacteria.

It's just my belief that if the bacteria load imbalances prove to be a universal in crohn's patients, we need to be testing the bacterial loads in all crohn's patients and working to find ways to stabilize them. The proper balancing is crucial to long term health and healing of the mucosa as they produce the biproducts that naturally keep our colon functioning properly.

The hard thing is once our food intolerances move past a certain point it's harder to return once the Firmicutes / clostridia populations are effectively decimated by a mixture of antibiotics and starvation through the low fiber diets many of us Crohn's patients are forced onto.

You then have to kill the bad bacteria in the upper and lower GI so food can get to the colon to feed the good stuff, but only the good stuff you're deficient in which competes for resources with the other good stuff you have too much of. Some foods are shown effective at selective feeding but I haven't yet found evidence of whether or not these foods bipass the SIBO in the upper GI.

Unfortunately the only current therapy to direct a targeted repopulation of those bacteria is the fecal matter transplant, which is only approved for C. Diff. What we need to be looking at is a way to make a diverse spectrum Firmicutes / Clostridia delivery system.

We also have GIs suggesting things like Ensure / Boost which are loaded with simple sugars and maltodextrin which is basically an ultra-simply sugar which is going to promote mass growth of SIBO in the upper GI tract, starving the lower GI bacteria and creating the imbalance that causes food intolerance. Not only that but the risk of Klebsiella which is linked to ankylosing spondiliditis.

It's one thing to give no advice, another to suggest something that could make things worse.

While in the short term you'll likely see improvement in your symptoms by taking in liquid calories, eventually the increased bile production and SIBO will turn that around and you'll see your symptoms beginning to get worse.

This has happened to me EVERY time I was able to recover enough to re-introduce simple sugars to my diet.

InstantCoffee - what does your theory look like in practice? If a doctor provided their Crohn's patients with a meal plan, what would be on it? And what does your current diet consist of? I remember reading some posts about foods you have eaten and they were pretty obscure - do you eat foods that patients in studies have eaten?

duh panda - I am still working through your post. My main conclusion is illness is complicated!

UnXmas said:

InstantCoffee - what does your theory look like in practice? If a doctor provided their Crohn's patients with a meal plan, what would be on it? And what does your current diet consist of? I remember reading some posts about foods you have eaten and they were pretty obscure - do you eat foods that patients in studies have eaten?

duh panda - I am still working through your post. My main conclusion is illness is complicated!

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I'm still building on it with self experimentation. The problem would be that I would need to create a different diet for each patient based on their digestive capabilities.

It seems evident that our food intolerances are based on both the level of dysbiosis and the specific imbalances. For example the reason that some patients can have lactose but others cannot is likely due to either insufficient bacteria of the kind that consume it in the lower GI tract, or overgrowth of harmful bacteria that consume it in the upper GI tract. I think we need testing on the specific bacteria loads of healthy individuals vs. ones with specific food intolerances to see what those differences are so we can better understand what needs to be taken out or put back in.

Mine are VERY limited right now, IDEALLY I would include a higher balance of prebiotic foods in my diet but I cannot tolerate the ones I want to, while many other Crohn's patients can.

I can tell you a rough idea of an approach I would use based on the chart I found describing bacterial growth as relates to diet.

Summary of diet-induced dysbiosis.

Diet Bacteria Altered Effect on Bacteria References
High-fat
Bifidobacteria spp. Decreased (absent) [45]
High-fat and high-sugar
Clostridium innocuum, Catenibacterium mitsuokai and Enterococcus spp. Increased [18]
Bacteroides spp. Decreased [18]

Carbohydrate-reduced
Bacteroidetes Increased [49]

Calorie-restricted
Clostridium coccoides, Lactobacillus spp. and Bifidobacteria spp. Decreased (growth prevented) [48]

Complex carbohydrates
Mycobacterium avium subspecies paratuberculosis and Enterobacteriaceae Decreased [49]
B. longum subspecies longum, B.breve and B. thetaiotaomicron Increased [53]
Refined sugars
C. difficile and C. perfringens Increased [54,55]
Vegetarian E. coli Decreased [56]
High n-6 PUFA from safflower oil
Bacteroidetes Decreased [59,60]
Firmicutes, Actinobacteria and Proteobacteria Increased [59,60]
δ-Proteobacteria Increased [61]
Animal milk fat
δ-Proteobacteria Increased [62]

Stage 1 diet
My first step would be to test for SIBO and the prevalance of harmful / invasive species like MAP, C. Diff, and Klebsiella because if those are a problem it limits your dietary options further. Simple sugars would DEFINITELY be off the table. Klebsiella also limits your use of standard prebiotics like RS, FOS and inulin because it's capable of breaking the complex molecular bonds that divides them from simple sugars.

So my first treatment for those would be one of a few things. The safe approach would be a mixture of complete carb restriction and fasting, which risks further imbalancing the gut flora in favor of bacteroidetes, but unfortunately the only other choice is antibiotics which will have the same result, but possibly more dramatic.

I would restrict the diet initially to meats, broths and tolerable oils focused on safflower and coconut oil, basically a fully ketogenic diet until they see a decrease in invasive bacteria. Due to extreme restriction of diet I would also put them on a multi vitamin. I would say this approach should be completely safe, supplementing with probiotics would be optional but not necessarily effective due to the chances you'd simply be starving them out anyway. Caprylic acid supplementation is also an option that I would consider safe but not sure if it's effective. You'd already be getting some in coconut oil.

For a more pseudo-science approach, I would say it's -possible- but not yet tested to the point of recommendation to supplement with euginol and carvacrol containing oils like thyme, oregano and cloves / black wallnut / wormwood which have been shown to kill harmful bacteria while feeding Firmicutes strains. Until I can find further evidence on this I would file it under a 'maybe.' I would like to further look into if taking them with an enteric coating to deliver them as food to the large intestines + fight off harmful bacteria there would be effective / optimal. So far search results on the topic have been no help.

Stage 2 diet
After the invasive bacteria is under control I would introduce complex carbs starting with low dose resistant starches like psyllium husks, potato starch (if tolerable), green bananas or plantains along with supplementation of FOS and inulin since foods containing it will likely be hard to digest for a patient with advanced dysbiosis due to high fiber content.

Initially they would likely experience flatulence, bloating and possibly diarrhea or constipation, so moderation and gradual increase based on personal comfort level would be necessary. Continued testing would be important to see that levels of harmful bacteria remain low and aren't feeding on the prebiotics.

Grey area
As you begin to introduce prebiotics, over the next week or so I'd say start introducing probiotics targeted at bringing up the shortcomings in their bowel diversity. Unfortunately it doesn't seem like there are capsules or anything for Clostridia, but likely Bifido bacteria would be the first choice which is a protective bacteria many Crohn's patients are deficient in.

This is another area I need more research in. When do you introduce probioitics / prebiotics? If you introduce the prebiotics first with nothing to feed you could be feeding the already over represented bacteroidetes. If you introduce probiotics without prebiotics as food for them they may starve. Will both at the same time simply cause too much gastric upset (flatulence, diarrhea etc.) for the comfort of the patient? How long will it take to subside? This is another area I need to find hard information on.

I would look really hard at supplementing L. acidophilus in those with lactose inolerance and possibly colostrum supplementation which acts as another natural prebiotic. I need further research to confirm effectiveness of both.

Stage 3 diet
Ideally the patient's food tolerances should continue to improve until they are able to move onto a diet rich in raw fruits and vegetables from which they can get their vitamins and prebiotics, along with meats, animal fats and healthy oils like safflower, and extra virgin coconut and olive oil. This would be the end goal for long term maintenance of healthy gut bacteria.

For those with complications of Crohn's like having had resections and such it could complicate the effectiveness because bacterial populations are regional to the intestines and I have no evidence of whether those populations can migrate and what effect that has on the ecosystem of the gut.

Grey area
I would look at raw, organic honey and royal jelly as a prebiotic for those in the advanced dietary stages with no signs of SIBO. I think regular testing for SIBO until dietary effectiveness is established would be best. I have reservations about honey though because some say harmful bacteria cannot digest it due to its chemical structure, while others say it can. I'd really like a confirmation on this but it doesn't seem that many find it scientifically relevant.

Long term maintenance, comparison with obesity etc.
Over the long term, it looks like a diet rich in complex carbs and fats with moderate protein will lead to the ideal balance that we're looking for. We basically want to be eating what obese people eat - because they have an overgrowth of Firmicutes where we have the opposite.

So what do we have to learn from this? Well unfortunately both depend on carbohydrates to an extent. Firmicutes seems to love fat and sugar - but bad bacteria also love sugar, so sugar binging is not an option to us!

Firmicutes is much less resilient to starvation than Bacteroidetes. If an obese person combined fasting with increase of resistant starches, they'd see a reduction in firmicutes and an increase of bacteroidetes.

Fasting and how it relates to this
For this reason I support the continual small meals through the day approach for Crohn's. I know you followed my log and know about my fasting trials UnxMas so let me clarify why that did what it did and why I no longer support it (but i may be able to in the future, it DOES have benefits but also drawbacks.)

During a fast we see a loss of firmicutes as well as harmful bacteria, an increase of gut-based serotonin production, and increased catecholamine production, increased cortisol production. All this is beneficial to Crohn's EXCEPT the loss of firmicutes.

However during the fast the Bacteroidetes begins to consume intestinal mucins, as a biproduct is creates butyric acid which promotes mucosal healing. So we see healing of the mucosa, balancing of the neurotransmitters, and bowel rest, great stuff really.

But we also see death of Firmicutes which leads to furthering of food intolerance. I don't have the resources to prove if I can maintain / grow my firmicutes population during the 8 hour feeding window of an Intermittent Fasting diet, so until I do I deem it unfit to my goals of increasing my dietary options to fast.

Dairy and MAP
I'd like to make a fleeting mention of dairy. I'm starting to believe that MAP bacteria is not a cause of Crohn's, and that it's simply a result of the dysbiosis we see, and a marker of the loss of protective bacteria and overgrowth of harmful bacteria. It's likely that the high prevalence in Crohn's patients is a sign of overall bad gut health, and it's possible that it DOES cause symptoms, however we also find it in healthy, asymptomatic individuals. I think in advanced dietary recovery with L acidophilus supplementation I would consider dairy to be SAFE and that the MAP should be manageable if you can restore a healthy balance of gut bacteria to protect you from it. I think monitoring of symptoms and levels of MAP in a patient in the advanced stages of the recovery diet would be very interesting to give us a better perspective on the role of dairy consumption and MAP growth.

My opinion on dairy is, perhaps, bias because I've NEVER seen correlation between dairy and my symptoms except when consuming it at ABSURD levels (1 gallon whole milk a day). The one time I experienced problems with dairy, I supplemented Kefir for a couple weeks and the problems subsided.

I think that covers everything for now...

My other treatment
My amino acid therapy doesn't relate to this, it's an indirect treatment of symptoms (both bowel syndromes and my depression / mood), and I will not recommend anyone else try it without a doctor's supervision. I also believe that if the dietary approach works then it will render this therapy unnecessary.

Some after-thought edits:

I just found this, I read about it before but forgot to mention it because there's just so much stuff I've read lately I forget some things.
Polydextrose seems extremely promising.
http://ajcn.nutrition.org/content/72/6/1503.full

Short-chain fatty acid production—notably that of butyrate, isobutyrate, and acetate—increased with polydextrose ingestion. There were substantial changes in fecal anaerobes after polydextrose intake. Bacteroides species (B. fragilis, B. vulgatus, and B. intermedius) decreased, whereas Lactobacillus and Bifidobacterium species increased.

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Conclusion: Polydextrose ingestion had significant dietary fiber–like effects with no laxative problems.

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This is EXACTLY what we want.

This thread has gotten out of control and completely off track. I can see how all these success stories can just spiral into endless debate. Not sure what the point is if everyone is just going to argue over universal causation and what is a "genuine" cure vs temporary remission.

I feel like InstantCoffee, gets it though. And a few others on this forum I've come across, like hugh. Then again I've been hammering away at Instant, working on his perspective in his personal weight gain thread. But judging from his personal website I think he was well aware of the pathogenic causation factor for his Crohn's, like his posts on Candida a few years back. We're all learning and sharing as we go and that's a good thing.

I don't think this is about shaming ourselves for what we didn't know about nutrition/dieting and how it relates to the development of disease. Nor is it about blaming doctors, educators, or government health agencies for their misguidance/deception/naivety - yes, I'm guilty of this (justifiably so). The challenge we're faced with is that any treatment takes faith and dedication in order to observe a positive outcome. Whether it's surgery, pharmaceutical drugs, diets, or natural supplements. I do however think we need to hold ourselves accountable if we're presented with alternatives and refuse to give them a proper chance. Sometimes it's all about the little tweaks and refinements necessary for a formula to work.

My experience in healing a fistula through diet is proof of the power of nutrition and supplementation. It is also proof of the destructiveness of certain foods. I'm rather new as a member here (lurked for a few years), but has anyone else claimed such recovery through diet? For how few responses I've seen on my fistula thread it's like people doubt the progress I've made or have no faith it will work for them. I saw relief from my fistula in as little as a few weeks, but it took me years to get the right scientific information on dieting and supplementing to believe it enough to put it into practice. It amazes me that the potential answers for those suffering are on this very forum yet some don't want to believe in them.

Our immune systems aren't just going bonkers because we're some kind of freak mutants or real life X-men. More and more evidence in research is solidifying the fact that pathogenic overgrowth/dysbiosis is at the root of most autoimmune disease and at this time diet and supplementation is the best way to treat the root cause.

Regardless of our own personal positions on the theories and treatments surrounding autoimmune disorders...as a community there needs to be solidarity. There's nothing to gain from endless arguing/debating over this stuff. What will foster positive outcomes is members being opened minded to unconventional / natural treatment methods. In addition, it would greatly benefit us all to be inquisitive about the science that is behind all of this.

From my experiences so far on this forum I think the excessive censorship and unnecessary disciplinary action is a hindrance to less knowledgeable members being able to learn more about the cause and natural treatment for their condition. Already, after only a month I feel like not investing my time here anymore. If this continues to occur I will just find something better to do with my time or go find another community that appreciates my perspective, because I don't need the stress. The vibe I get from this community and its moderation is that of being overly-sensitive and overly-protective.

It's unfortunate we have to make up for the shortcomings of current mainstream medical treatment options. Many of you need to act more like wolves instead of sheep. If you don't you're just going to remain a tragedy of a failed modern health care system that is going to damn you instead of save you.

Instantcoffee - my conclusion as well! Thank you taking the time to respond and expand some on the conclusions/ connections you were drawing.

Winged victory - I don't see any censorship going on, just discussion development. More info. Was requested, clarifications made and there is nothing wrong in seeking minimal ambiguity when conversing via written language. Whether for self or to try to prevent poor leadership to those who are less familiar with or completely new to crohns. Perhaps, I agree it might be a bit extensive for this thread, but there is relation between the initial post and the follow up discussions/ sharing/ conversing that has occurred. Your post is neither helpful, supportive, or informative.

duh panda said:

Instantcoffee - my conclusion as well! Thank you taking the time to respond and expand some on the conclusions/ connections you were drawing.

Winged victory - I don't see any censorship going on, just discussion development. More info. Was requested, clarifications made and there is nothing wrong in seeking minimal ambiguity when conversing via written language. Whether for self or to try to prevent poor leadership to those who are less familiar with or completely new to crohns. Perhaps, I agree it might be a bit extensive for this thread, but there is relation between the initial post and the follow up discussions/ sharing/ conversing that has occurred. Your post is neither helpful, supportive, or informative.

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This thread, no, but in many when discussion evolves it's seen as derailment and gets locked, as does often time discussion of alternate treatments.

Unfortunately many get dogmatic about treatment approaches which leads to questioning of those approaches as a personal attack.