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Crohn's Disease Forum » Your Story » How I'm Managing Crohn's


 
06-27-2015, 12:26 PM   #1
Crohnos08
 
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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.
06-27-2015, 01:19 PM   #2
earthshine
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Bless your heart. thank you for sharing. may good health continue!
06-27-2015, 02:05 PM   #3
wildbill_52280
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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.
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06-27-2015, 03:58 PM   #4
ConfusedCrohny
 
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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.
06-27-2015, 04:47 PM   #5
InstantCoffee
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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.
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06-27-2015, 05:50 PM   #6
teeny5
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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.
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06-27-2015, 08:46 PM   #7
ConfusedCrohny
 
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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.
06-27-2015, 09:00 PM   #8
Optimistic
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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.
06-27-2015, 10:16 PM   #9
Lady Organic
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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?
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06-27-2015, 10:45 PM   #10
Hope345
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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?
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
06-28-2015, 10:14 PM   #11
Crohnos08
 
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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 couldnít eat almond flour, so I had to substitute coconut flour. It seems to work pretty well. I canít 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 Iím about average (6Ē1 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 havenít 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 arenít 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 Crohnís, 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 canít promise that adhering to the SCD wouldnít cause you a tailspin. For me, however, it seems to be the only thing that works.

I must say that itís hard to imagine the diet spinning someone into a tailspin. Itís a very simple diet with very simple foods. As long as you arenít allergic to the foods on the list, following the diet shouldnít 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 Crohnís when Iím going out to eat with other people. If Iím 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 ďsymptomĒ (I use the term loosely) that I have is that itís 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 oneís current weight situation. I do experience tinnitus, or ringing in the ears, but doctors have told me that it has no correlation with Crohnís. They said that itís most likely hearing loss from playing the guitar too loudly. I donít know if thatís 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 havenít 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 ďthe diet will never workĒ 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 couldnít pinpoint the day I began the SCD. I had a colonoscopy probably a year before I started the diet. I havenít 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 ďBreaking the Vicious Cycle,Ē 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 ďlegalĒ for me to eat.

8)Hope345 Iím 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 isnít a part of my diet. Sometimes at a restaurant theyíll forget to take the flour out of the sauce for my entre, but thatís the only time I break the diet. Small dietary infractions donít make me feel bad, but I donít make a habit of them. Iím sorry to say that sticking to the diet pretty rigidly is the best way to make it work. Best wishes.
06-29-2015, 03:52 AM   #12
kikig
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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!
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06-29-2015, 10:41 AM   #13
Optimistic
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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.
06-29-2015, 12:58 PM   #14
WingedVictory
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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.
@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.

Last edited by WingedVictory; 06-29-2015 at 01:34 PM.
06-29-2015, 01:42 PM   #15
Jennifer
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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.
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-29-2015, 03:28 PM   #16
WingedVictory
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@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.
06-29-2015, 04:09 PM   #17
Jennifer
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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.
06-29-2015, 06:22 PM   #18
teeny5
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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.
06-29-2015, 09:09 PM   #19
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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!
06-29-2015, 10:45 PM   #20
Lady Organic
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thank you for your eloquent responses Crohnos08, quite impressive, I must say

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?
06-30-2015, 02:13 AM   #21
Crohnos08
 
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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.
06-30-2015, 04:09 AM   #22
kikig
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@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!
06-30-2015, 07:09 AM   #23
WingedVictory
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@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.
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.

Last edited by WingedVictory; 06-30-2015 at 07:42 AM.
06-30-2015, 07:19 AM   #24
InstantCoffee
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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.
06-30-2015, 07:35 AM   #25
WingedVictory
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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 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.

Last edited by WingedVictory; 06-30-2015 at 07:58 AM.
06-30-2015, 08:20 AM   #26
InstantCoffee
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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.
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.
07-01-2015, 12:15 AM   #27
Jennifer
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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.
07-02-2015, 11:57 AM   #28
duh panda
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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.

Last edited by duh panda; 07-02-2015 at 11:59 AM. Reason: autocorrect sucks
07-02-2015, 02:20 PM   #29
InstantCoffee
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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.
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.
07-02-2015, 02:56 PM   #30
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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.

Last edited by duh panda; 07-02-2015 at 03:15 PM.
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