# This is how I'm going to put my Crohn's into remission



## acemagic

Hey guys,

I've taken about an hour to write the following information out to you. I want it to be super concise, but easy to read. I hope you can get through it all because  I think it will be important for everyone on this site. Over the last 3 weeks, I have read almost every posting on this website, in every category. I've read books on Crohn's disease, diets, and looked at all the different medications available to us. I've literally spent about 40 hours, simply reading everything I can and taking down key information. I've done this because I've been laid up in hospital for the last 3 weeks, having undergone my third and hopefully final resection of bowel. And I want to share what I've discovered with you. I know there is a TON of information out there, half of which contradicts the other half, and it's nearly impossible to weed through it all (unless you have 3 weeks with nothing else to do). So here goes:

1- Diet IS a factor in treating your disease. I'll talk about why I'm so certain of this a little later in this post. Many western doctors feel that this is not the case, but I have been listening to my Western doctor for 14 years, have gone on every medication available to us from Prednisone to Remicade, and still have had 3 resections. Once I accepted that *maybe* the western docs don't know everything there is to know about the disease, I was able to look further into the role of diet. And here is what I've found:

2- First and foremost, I found Robert747. He is an active user on this forum who has been in remission for about 13 years (no small feat). From age 40 to age 50, he was in a complete remission and from ages 50 to 53, his Crohn's has slowly crept back into his life. I asked him to provide me with a list of his general food intake from ages 40-50 and his intake from ages 50-53 to see if anything has changed in the last 3 years. Here is what he sent me:

40 to 50

Dairy Average to high
Grains Low
Meats Average
Raw vegetables / Fruit High (juicing)
Sugar Average to low

50 to 53

Dairy Average to high
Grains High
Meats Average
Raw vegetables / Fruit Low to medium
Sugar Average to low

Based on this list, I started looking into grains as a potential cause of Crohn's disease, since that was the biggest change in his diet. And what I found out was pretty astonishing.

3- The SCD diet, The Paleo diet, the LOFFLEX diet...they all in some way remove grains and/or fibre and/or dairy from the diet, and they all seem to have some degree of success. The most success lies within the strictest diet: The Paleo diet. I literally can't find anyone on this forum that has said the Paleo diet did not work for them. Every person who I've spoken to and read about on this forum seem to be in a complete remission (with no medication or very little medication)  if they can stick to a strict Paleo diet. There is a moderate degree of successes and failures with the SCD Diet, but it allows a significant amount of dairy in the diet, whereas Paleo does not. If you have SERIOUSLY tried the Paleo diet for 30 days and it didn't work for you, then please feel free to comment, but even a google search of "Paleo doesn't work" didn't come up with any IBS related results, just weight loss ones.

4- For those unfamiliar with it, the Paleo diet essentially states that processed foods (such as dairy, grains and refined sugars) are relatively new to the human digestive system and humans haven't completely adapted to digest these foods yet. It makes sense from an evolutionary standpoint and is backed up by the fact that our diseases (IBS, Crohn's and colitis) never existed before we began cultivating grains and milking cows. For those who are underweight (such as myself), a Paleo diet seems to help with weight gain, and for those who are overweight, it appears to be very successful with helping weight loss.

5- My best educated guess is that there are 3 types of foods: Crohn's CAUSING, Crohn's IRRITATING and SAFE foods. Crohn's CAUSING foods are foods that will bring back the disease no matter what stage of health you are in. These foods include Grains (not just gluten, but wheat, corn, rice, etc), dairy and processed sugars. However, these foods don't actively HURT us when they're being digested, which is why a "low residue" diet prescribed by doctors (lots of noodles, rice, and white bread) feels just fine when we're on it, but does nothing to remove the disease itself. Crohn's IRRITATING foods are high fibre foods such as raw fruits and vegetables, seeds, nuts. This is why when a person has ACTIVE disease (aka, a flare-up), we can't seem to stand raw fruits and vegetables. It's because the high fibre content of these foods irritates the active crohn's in our digestive tracts. Since my surgery a few weeks ago, I am Crohn's free (for all intents and purposes), so I have vastly increased the intake of my fruits and vegetables (raw) and I'm finding very very little ill effects. I have gotten the occasional cramp just before a bowel movement, but that's it. The 3rd type of food is crohn's SAFE, which from what I've gathered, seems to include chicken, fish, and most fruits/vegetable juices (watch out for acidic juices such as pineapple or tomato or juices containing pulp!). This will neither irritate active crohn's, nor will it make the disease any worse. This also supports the juice diets that we know can be successful at bringing ourselves back to health from a flare-up.

6- Finally, stress seems to be a major factor in contributing to the disease. I haven't really determined its exact role, but definitely try to do some moderate exercise, yoga or meditation. I HATE exercise with a passion (I'm a computer geek!), but I'm going to do my damnedest to try and go for a 20 minute walk every day for starters and move to some weight bearing exercises over time.

Now guys, I'm not a doctor. But my personal doctor is world renowned at being a leading expert in Crohn's (he was the guy who brought Remicade onto the market and conducted the clinical trials), and not even HE knows what causes the disease. I'm sick of letting this disease rule my life and I absolutely refuse to put my family and friends through the weeks of hospital visits and suffering that we both endure every time I have to go back. I've already lost 3 feet of intestine and am vowing to do everything in my power to not lose any more. I'm going to do my best to fully commit to the Paleo diet and I will come back to all of you with HONEST results. If I'm totally and completely wrong, I will let you know and I will commit to reporting back every few days or weeks with progress. If you want to join me, I'd certainly appreciate the support. If you're currently in a flare, my advice is to buy a good juicer and juice fast for at least a few days (and maybe have some SCD legal chicken soup - no noodles!) to get your gut healed. Report back with any results (good or bad!). I hope we can tackle this thing and get some people disease free. 

I also want to say thank you to Robert747 for his awesome communication and support. I'll be in touch, and feel free to email me or PM me at any time.

Sincerely,

Adam C
Acemagic@shaw.ca


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## nikimazur

This is awesome and I hope it works for you! On the other hand, Paleo, destroyed me. I was on a complete paleo diet for over two years before my Crohn's started. I tried to maintain the paleo even amongst the Crohns, but kept losing weight, and had zero energy whatsoever. For me, fiber is my biggest irritant (food wise), and it was sending my body over the edge. I still maintain a high protein (all organic) and try to keep paleo when I can (rare to low temp cooked), but have added in some simple carbs for energy sake. As an endurance athlete, with crohns, the protein even in huge quantities was not sufficient. 

I would love to know how your experience goes! I hope it works better for you then me. I miss living my paleo life, and hate putting "bad things" like grains into my diet, but the most important thing is listening to your body.


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## acemagic

Hey Nikimazur,

That's great information, thank you for posting that. Crohn's varies so much from person to person, and you're quite right, the most important thing is listening to your body. My fear with Crohn's is that it comes back so gradually that sometimes you don't realize anything is wrong before it's too late. Giving up rice, noodles and potatoes is going to be immensely hard for me, as it was a staple in my diet (and pretty much every meal) for a decade or so. But I'm worried that if I re-introduce those things, I may feel better in the short run, but it could do damange in the long run. Although I just posted today, I've actually been on Paleo for 3 days and have already felt a considerable drop in energy. I'm exhausted, but from what I've read, that's pretty normal when starting out.

Oh, I forgot to mention in my last post about my weight. After my last surgery 5 years ago, I had dropped from 140lbs to 110, and then bounced back to 145 after the operation, where I've stayed for the better part of 5 years. Just before this operation I just had, my Crohn's was active again and it had brought me down to 140, from 145. I now weigh 120, as of this morning, post-op.

-Adam


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## EthanPSU

Great read. I saw that you might think Grains are a part of what inflames it.

This might be a dumb question, but is spaghetti a grain? I've been eating a ton of spaghetti the past week due to trying to gain weight and working out, and thus far my crohns has been seeming to be getting better. I haven't added any new meds (yet). Ill let you know if I continue eating a lot of grains if anything changes.


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## acemagic

Hey Ethan,

Yes absolutely! Noodles have wheat in them (even egg noodles). Which sucks, because they're my favorite thing ever and were a staple of my diet for years. Rice noodles are "better" but are still not Paleo legal because they're a grain. Paleo advocates recommend using spaghetti squash as your new noodle. I wasn't a big fan when I tried it years ago, but maybe you'll think differently. One Paleo book I read said that if you HAVE TO HAVE TO cheat, go with rice noodles.

As far as your lack of pain, I'm not surprised. Wheat (noodles) fall under the doctor recommend "low-residue" diet, which doesn't seem to aggravate and irritate Crohn's in the short term, but it's one of those things that may bring about Crohn's in the long term. I never had any pain associated with heavy noodle eating. But my Crohn's came back over the course of a couple of years and going by what I've read, eliminating grains seems to have the most success in keeping the disease away for long periods of time.

-Adam


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## Irene3

Ethan..spagetti is wheat, so it is a grain. Any pasta is. But docs recommend it for weight gain, and it's low residue. 

Ok, so having a full paleo diet. Do you have (have you found), any info to say pulses are bad. Legumes? Lentils beans ect. And also, what about qunoia? I can understand that white bread pasta etc, can be bad, but not how or why legumes would be. And rice? I want to try scd, and not have rice for a while, just to see if it improves the crohns, but rice has been eaten for thousands of years, and I'm not sure that fits with 'it a new grain and so we can't digest it'. It's gluten free, so if it isn't the gluten, what in grains, do you think, causes the disease? I question sugar more, then the grains themselfs, as white carbs all have high levels of sugar. But legumes... I thought were supposedly healthy all round, and the rice, I just want to at least try for a month, not to have, after the other refined sugars, carbs, and most starches, which also turn into sugar. 
  So what about grains, do you feel, causes crohns? I'd say sure, I'll try paleo and support you, but I want to wean pred as I slowly have less and less milk, as I already have osteoporoses (I'm 29), and the breads etc, I thought bit by bit, so it's not a huge leap, as a candida diet made me really sick last year. But I really hope it works for you, and please keep us posted on your progress. I asked if anyone has tried a no sugar diet, and someone on paleo, had a lot of good things to say about the diet, so maybe by scd stage, I'll give it a try. Best wishes xo


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## Mia E

Hi adam,

thanks for doing this, in my head i kept saying i must read it all but it is all so contradictory and huge!

my plan now is to go read the Paleo diet stuff and see what it says,if its achievable for me the chocaholic!

I had my first resection 2 months ago and thats when i received my diagnosis.  On discharge I was told no active crohns was left in my system.  I was eating low residue after surgery and have expanded my diet now a bit more. I'm just wondering if the crohns has come back since my surgery, can anything make it go away again or will it always be there?
i hope that makes sense?
x

i hope that question makes sense!


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## fromthegut

Hi Acemagic.. I can guarantee that you do *not* want to hear me right now. What really helped me in my quest for better ehalth.. as there is no cure for Crohns.. was prayer..*and* meditation !!   
 For me prayer is talkign to God and meditation is listening to God.   I ahev lsiten a lot but I also talk a lot. I am am very frustrated these days as it feels as if no oen is "listening." I think I am finally accepting taht people.. usally health care professioanls coubnsellors ect.. just do nto have the capacity to understand.
 BAsically I have "outgrown" the peopel who are suppose to be supporting me.  Their time is over.  my quest now is to find get help to help me move forward. That is the challenge. I need people to not only "think" but "act' outside the box.
 That ishow I got healthier with my Crohns. Changed lots of things and behaviours in my life !!
 Unforatunately some realtionships had to end becasue of this. I am grateful for the bond we "did" share btu I am on a different path now. 
 And there are *many* paths !!


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## acemagic

Hey Irene,

I believe the theory behind avoiding grains is not the gluten itself. You avoid gluten if you have celiac disease (an allergy to the gluten molecule, I believe). But we all know that you don't necessarily need to have Celiac if you have a form of IBS. The reason for avoiding grains (including rice and yes, and unfortunately quinoa) and Legumes (including pulses) is something called Lectins. I don't know much about it. As a matter of fact, when I read your post, I had to Google it. But here are a few links I found:

http://www.smart-diner.com/tag/paleo-diet-lectins/
http://www.paleoplan.com/2011/03-30/why-no-grains-and-legumes/
http://board.crossfit.com/showthread.php?t=64684

You're also right, rice has been eaten for thousands of years in some countries. But in the grand scheme of things, thousands of years is not a very long time. And rice was only first cultivated in the late 1600's in the Americas (and Australia) for the first time, which really only gives us about 300 years to make biological changes that allow us to digest it. That's not a long time at all.

Regarding your osteo, I totally understand. I'm also osteopenic (thanks Prednisone!) but interestingly enough, during my readings, I found that light, weight bearing exercises are more responsible for building bones, than a high intake of calcium. Even so, calcium is probably important, but it's far better to get it from dark leafy vegetables (I hate spinach, but if I juice it and add some fruits for taste, it's awesome) or calcium supplements. 

I also found during my reading that biphosphate drugs that help "build bones" such as Fosamax, Actonel, Boniva and Reclast seem to be popping up more and more as causing bone FRACTURES! Here is one of the articles that mentions it from last year:

http://articles.mercola.com/sites/a...ngthening-drugs-actually-cause-fractures.aspx

Hope that helps you!!

-Adam


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## Irene3

Fromthe gut.....I'm also a spiritual person. In that, when I am most upset, I always talk to God. I thought for so long about deutoronomy, and how it says if we ignore sabbath, all kinds of illnesses come upon us. For a while I thought, if I speak to god about everything, then even if I don't agree with ancient deutoronomy laws, about tithing etc, that god still loves and understands, that I'm a good person. I felt I could go without tithing etc, and it didn't really matter. Well, I got more sick, so then I started studying the bible again. But reading it again, just made me realize that I either tithe, and keep sabbath, or I just keep studying and saying I believe in god, but disagree to do as the bible asks. So I started tithing again, and try to keep sabbath now. Not with all the Jewish tradition (im not Jewish), but just as the bible says. I dont speak to others who do, as most people I know who believe in god, feel tithing and sabbath are not necessary. What do you think?


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## acemagic

Mia E said:


> Hi adam,
> 
> thanks for doing this, in my head i kept saying i must read it all but it is all so contradictory and huge!
> 
> my plan now is to go read the Paleo diet stuff and see what it says,if its achievable for me the chocaholic!
> 
> I had my first resection 2 months ago and thats when i received my diagnosis.  On discharge I was told no active crohns was left in my system.  I was eating low residue after surgery and have expanded my diet now a bit more. I'm just wondering if the crohns has come back since my surgery, can anything make it go away again or will it always be there?
> i hope that makes sense?
> x
> 
> i hope that question makes sense!


Hey Mia,

Oh chocolate, RIP.

Actually, some people on Paleo, seem to indulge dark chocolate once in a while. I hate the stuff personally I loved milk chocolate, but that's a definite no-no. But I think I've read about 2 Paleos who still indulge every once in a while in DARK chocolate. So if you like dark chocolate, you might be able to get away with it once in a while.

Again, I just want to re-iterate that this is really just a "best guess" strategy based on boatloads of information available. I highly doubt your Crohn's could come back that quickly, but if you were to follow this strategy, I would suggest weaning yourself off of the low-residue stuff and try to go more into the cooked vegetables and juices and meats for starters, and try introducing raw fruits/veggies very slowly. You may get some initial cramping, similar to what I have had, because remember: those foods can be Crohn's irritating due to the high fiber content. But since low-residue could be bringing the Crohn's back gradually, I would opt definitely try and limit your intake of those foods until you can get rid of them altogether. Besides, lets face it. Fruits and vegetables are simply better for you than processed noodles and breads. But yes, if your Crohn's is ACTIVE, stay away from raw anything.  Buy a juicer and juice for a while to get some bowel rest. 

In the past, when I have had a bowel obstruction that landed me in the hospital, I have had to go off foods for a week and gradually re-introduce things because my bowel is so inflamed. It's awful, being on nothing but an IV drip for so long, but it certainly has helped repair things!

-Adam


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## acemagic

fromthegut said:


> Hi Acemagic.. I can guarantee that you do *not* want to hear me right now. What really helped me in my quest for better ehalth.. as there is no cure for Crohns.. was prayer..*and* meditation !!
> For me prayer is talkign to God and meditation is listening to God.   I ahev lsiten a lot but I also talk a lot. I am am very frustrated these days as it feels as if no oen is "listening." I think I am finally accepting taht people.. usally health care professioanls coubnsellors ect.. just do nto have the capacity to understand.
> BAsically I have "outgrown" the peopel who are suppose to be supporting me.  Their time is over.  my quest now is to find get help to help me move forward. That is the challenge. I need people to not only "think" but "act' outside the box.
> That ishow I got healthier with my Crohns. Changed lots of things and behaviours in my life !!
> Unforatunately some realtionships had to end becasue of this. I am grateful for the bond we "did" share btu I am on a different path now.
> And there are *many* paths !!



Hey Fromthegut,

I am not a religious person at all. I was born into a Jewish family, but I can't honestly say I practice any form of religion. But I do agree with you that healing comes from many places. I wholeheartedly agree that meditation may very well help people along (I even mentioned it in my original post!), and I am glad to hear that you have achieved a form of healing through your journey. I'm simply offering yet another path to those who are still searching for answers. Whether they find it in God, Paleo, or any other means, we're all tried to achieve the same result - healing. Thank you for contributing what has helped you!!

-Adam


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## Mia E

Hi adam

thanks for your response.  i understand this is just a theory so dont worry about me taking it as gospel truth! but i like the process you went through to get to your hypotheses so i am willing to try it out as an idea.

RIP chocolate indeed! after surgery i vowed to never eat crisps (chips) again (purely so i wouldnt put the weight back on again, i may have loved them more than chocolate!) and i have stuck to that, so i'm sure i could manage without chocolate too....i hate dark chocolate!

how does vitamin supplements and medication fit into your theory?


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## acemagic

Mia E said:


> Hi adam
> 
> thanks for your response.  i understand this is just a theory so dont worry about me taking it as gospel truth! but i like the process you went through to get to your hypotheses so i am willing to try it out as an idea.
> 
> RIP chocolate indeed! after surgery i vowed to never eat crisps (chips) again (purely so i wouldnt put the weight back on again, i may have loved them more than chocolate!) and i have stuck to that, so i'm sure i could manage without chocolate too....i hate dark chocolate!
> 
> how does vitamin supplements and medication fit into your theory?


Hey Mia,

Chips were my vice too. Matter of fact, when i got released from hospital a few days ago, I bought a big bag of ruffles original and ate them all and have another bag sitting in my pantry, begging to be eaten. Unfortunately, now that I'm committed, I'm giving it to my girlfriend.

Well, vitamins are important through and through. They're essentially the fuel that your body needs in order to survive. So if you're not getting your essential vitamins on ANY diet, you should be supplementing. I take a vitamin D tablet daily, along with Fish Oil and probiotics (which are on hold because I'm still on a healthy dose of antibiotics -- courtesy of the hospital visit -- until tomorrow).

Medication is an excellent point to bring up. Medication prescribed to Crohn's patients have a chance of reducing inflammation in the gut. That's what they're all designed to do. From Prednisone to 6-MP to Remicade, they're all just aimed at reducing inflammation. Prednisone is a prime example. Prednisone reduces inflammation and suppresses the immune system, which is why we usually feel better while we're on it. But it doesn't tackle the source of the inflammation! It's like banging your head on the wall, and taking Tylenol to make you feel better! Sure the headache will go away, but you should really stop the banging your head thing  As I'm sure you've heard before, Western medicine is amazing at treating symptoms of disease, but rarely the root cause.

The "best theory" right now according to Western docs is that Crohn's disease is an autoimmune disease, which is essentially the immune system attacking itself, causing inflammation. They don't know why the immune system is attacking itself, so they just aim to reduce the inflammation. So all the medicines available to us do exactly that. But something is still continuously causing it to come back. The other interesting thing I found is that there have been very little studies done on the role of diet in Crohn's disease, because studies cost a great deal of money and no pharmaceutical companies want to spend millions of dollars only to discover that diet plays a role! Why? Because if they discover that diet is the cause of Crohn's disease, then they can't SELL us anything and get their investment back. It makes perfect sense from a business point of view, but it really sucks for all of us who are suffering. So all of their studies are aimed at introducing more drugs into our system to combat the inflammation.

So in summary, keep on your supplements and if you're concerned you're missing something, definitely do some investigating to find other food/supplement sources!!

-Adam


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## Irene3

Adam... Thank you for your response. I'll try paleo, but without even lentils, just meat and veg, it will be hard. I'll try to research meal ideas. Ill be staying on humira and 6mp though, but if the diet improves things dramatically, then I'll see what my gi thinks about not taking the 6mp at least, then maybe humira. At this point, I'm happy with humira though. 
  Best wishes


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## kiny

acemagic said:


> The "best theory" right now according to Western docs is that Crohn's disease is an autoimmune disease, which is essentially the immune system attacking itself, causing inflammation. They don't know why the immune system is attacking itself, so they just aim to reduce the inflammation.


Doctors who still believe in that need to start reading more, that theory has been debunked over and over and over and over and over and over ad nauseam. 

There are so many reasons that explain why this isn't true.

Studies show that crohn patients have a *reduced* reaction against harmless bacteria, when you infect a crohn patient with a harmless bacteria they react slower to bacteria than controls.
_
"Importantly, in the second biopsies, a lower cytokine
production and an abnormally low neutrophil accumulation
was observed in patients with Crohn’s disease
compared with healthy controls. It is difficult to interpret
these data in any other way than with the hypothesis that
patients who suffer from Crohn’s disease have an impaired
acute immunity.""_ 

Studies show that crohn patients have an immune deficiency.

Genes show crohn patients have an immune deficiency.

People with Crohn have increased chance to get C. Difficile.

Animals with genetic NOD2 disorder have increased chance of bacterial infection.

http://www.youtube.com/watch?v=vCVt7eZNqhk&feature=relmfu

Our body didn't just decide one day to attack our own intestine for no reason whatsoever, the idea is stupid, there is no proof whatsoever that that is happening, the inflammation is being caused by excess TNF-Alpha, that's why every medicine, herb, and vitamin that reduces inflammatory cytokine is helping crohn, and why every one of them is targeting TNF-Alpha.

Doctors who still say crohn is autoimmune where our own body attacks harmless bacteria, just suddenly, one day, for no reason whatsoever, without any proof to back it up, should be charged for malpractice, cause the only doctors who still believe that are doctors who haven't opened a book in 60 years.


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## Trysha

Hello Acemagic,
You reports are most interesting.
Thank you for sharing
Hugs and best wishes
Trysha


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## Jennifer

acemagic said:


> Crohn's varies so much from person to person, and you're quite right, the most important thing is listening to your body.


You're right, it does vary from person to person. 

Once you have one resection your likelihood of having another one increases. Some of us are more fortunate than others though. I've also been in remission for 13 years but I treat it with medication only. No exercise, poor diet and most certainly not stress free (no can do since I'm a caregiver for my grandpa, although I guess that could count as exercise as well). 

It'd be great if everyone could go med free but the reality is that we all must do what works for us since we're all different. There is no cure for Crohn's as its in our DNA. Once its activated it can only go into remission but will always be there. 

The main thing we have to do is seek treatment, whatever that may be and continue to see our doctors so we can have regular tests done to make sure that our choice of treatment is still working. This is the best way to stay in remission.


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## Robert747

I instinctively knew that my Crohn's came back because of a change of diet - despite what the doctors said. I am now on Azathioprine and have discussed with my doctors about moving away from medication in favour of diet. They look at me as though I am mad!

Since being on Aza I have suffered from shingles (a direct result) and have to stay out of the sun plus the concerns about increased cancer risks. Is this going to be my life from now on....er....no!

Truth is adopting a new diet is really, really hard. I have started off with the best intentions but very slowly I have relaxed my 'regime'. I think I will end at a compromise situation - 80% good diet / 20% enjoy life diet.


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## acemagic

kiny said:


> Doctors who still believe in that need to start reading more, that theory has been debunked over and over and over and over and over and over ad nauseam.
> 
> 
> http://www.youtube.com/watch?v=vCVt7eZNqhk&feature=relmfu
> 
> Our body didn't just decide one day to attack our own intestine for no reason whatsoever, the idea is stupid, there is no proof whatsoever that that is happening, the inflammation is being caused by excess TNF-Alpha, that's why every medicine, herb, and vitamin that reduces inflammatory cytokine is helping crohn, and why every one of them is targeting TNF-Alpha.
> 
> Doctors who still say crohn is autoimmune where our own body attacks harmless bacteria, just suddenly, one day, for no reason whatsoever, without any proof to back it up, should be charged for malpractice, cause the only doctors who still believe that are doctors who haven't opened a book in 60 years.


I couldn't agree more Kiny! Doctors need to keep informed. I watched a few of the videos so far. Very interesting stuff. It's interesting to note that MAP appears to originate in the body through the intake of milk and milk products because the bacteria doesn't get killed during the pasteurization process. Yet another reason to avoid dairy. 

Is there anyone on the forum who has participated in any of these studies? Are there any currently available medications that target MAP specifically?

-Adam


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## David

Hi Adam,

Thanks for sharing your ideas!  As you're going to try paleo, I want to throw two thoughts your way:

All meat is not the same.

Research the difference between factory farmed meat and naturally raised meat such as grass fed beef.

In addition, I'm of the opinion that our society moving away from eating nutrient dense organ meats such as liver, kidneys, heart, etc leads to problems as well.  There's a reason people of the past thought these had magical properties.  Just something for you to research a little 

Best of luck to you!


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## acemagic

David said:


> Hi Adam,
> 
> Thanks for sharing your ideas!  As you're going to try paleo, I want to throw two thoughts your way:
> 
> All meat is not the same.
> 
> Research the difference between factory farmed meat and naturally raised meat such as grass fed beef.
> 
> In addition, I'm of the opinion that our society moving away from eating nutrient dense organ meats such as liver, kidneys, heart, etc leads to problems as well.  There's a reason people of the past thought these had magical properties.  Just something for you to research a little
> 
> Best of luck to you!


Hey David,

Thank you for that! You're absolutely right about the meats. Unfortunately I'm ridiculously squeamish when it comes to the organ meats. I'm going to stay more on the chicken & fish side of things, (while keeping beef to a minimum), but I don't think I'll ever get the guts to ingest liver ever again. It was traumatic as a child having to eat that stuff.....let alone a heart. 

For those who are wondering, I'm on day 4 of the Paleo diet and I'm feeling exhausted. Like....really really tired, as if I've just got out of surgery all over again. I went for a 40 minute slow walk to the store, and I feel like I just ran a marathon. I don't know if it's because I'm still post-op (but it's been 3 weeks) or because I'm vastly changing my diet, but I've read that going Paleo can make you tired for a couple of weeks. This morning I downloaded an app onto my phone called MyFitnessPal, which helps at tracking what your goals are and whatever you're eating and calculates your program. Unfortunately it doesn't take 3 resections into account, but it's a good start. It's actually really handy. So now I'll know if I'm missing my required intake of carbs on the Paleo Diet. I highly recommend it to anyone who has Android (I don't know if it's available for IPhone or not)

-Adam

-Adam


----------



## David

I know the feeling, I'm the same way.  Problem somewhat solved: http://www.grasslandbeef.com/Detail.bok?no=821  This stuff is delicious.  It's not as good as pure organ meats, but it's certainly the next best thing in my opinion.

And the same statement I made above stands for poultry.  They're not meant to be fed massive amounts of corn like the factory farms feed them.  For example, give this a read: http://www.drhoffman.com/page.cfm/892


----------



## Irene3

Glad to hear your doing well at staying on the diet Adam. Hope your feeling a bit better soon.

Robert...I felt horrid on aza. HATED it!!! Couldn't go outside without feeling I was burning within 5 min. My gi put me on 6mp instead. When I mention diet to him, his the same. Thinks it's a very bad idea to try to get well without medication, and diet alone. I went against his advice mid last year, and ended up in hospital on cortisone. So now I'm staying on the humira and 6mp, and if things improve, then I'll see if it states that way without 6mp, Nizoral, and leave the humira until I'm in complete remission. IF diet improves things THAT much. Best wishes with beginning a diet.

I'd love to be able to afford organic food, grass fed beef, all the free range and best, but it's just not possible.


----------



## ctrl z

David said:


> http://www.grasslandbeef.com


I was on that site the other day. I've been interested in cooking with beef tallow for its CLA content and was curious if this was a reputable company.


----------



## David

I buy from them and have had nothing but positive results.


----------



## ctrl z

Great 
Thanks.


----------



## acemagic

Irene3 said:


> Glad to hear your doing well at staying on the diet Adam. Hope your feeling a bit better soon.
> 
> Robert...I felt horrid on aza. HATED it!!! Couldn't go outside without feeling I was burning within 5 min. My gi put me on 6mp instead. When I mention diet to him, his the same. Thinks it's a very bad idea to try to get well without medication, and diet alone. I went against his advice mid last year, and ended up in hospital on cortisone. So now I'm staying on the humira and 6mp, and if things improve, then I'll see if it states that way without 6mp, Nizoral, and leave the humira until I'm in complete remission. IF diet improves things THAT much. Best wishes with beginning a diet.
> 
> I'd love to be able to afford organic food, grass fed beef, all the free range and best, but it's just not possible.



Hey Irene,

What diet were you trying when you had your relapse?

-Adam


----------



## Irene3

Candida, lots of green tea, couldn't stomach barely any food because my inflammation markers were over 120. 5 is normal. Kept thinking it will be fine after a while, because candida die off symptoms drain you, but then in hospital, when told I needed cortisone, I said to the doc, I had gone without meds for ages, and she basically said, you can either go on cortisone, or die from the inflammation. I didn't even have full on crohns pain. Hadn't taken pain meds in a while. 2 days into the cortisone I was back on morph, back in agony, eating lots, so bowels cramping. And back on low residue. Felt like I started the candida diet for nothing. Had to defer Uni as well, so I promised myself to follow what my gi says from then on, to a t. Except the aza. That I honestly couldn't keep taking, but thankfully he put me on 6mp instead.


----------



## killcolitis

I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.


----------



## Beach

Yeah, it can take awhile to get used to eating fewer cards and probably more so not eating grains.  In particular, many people go through wheat withdrawals.     

Dr. Eades had some nice articles on overcoming the run down feeling when eating fewer carbs.  Basically you'll want to eat more fats.  Even though it isn't paleo, I'll eat some aged cheese from time to time, and that seems to help.  I'm actually nibbling on some  cheddar as I write this.  Coconut oil doesn't cause me problems either, and seems to give good energy.  (Many have gut issues with the medium chain fats in coconut oil.)      

"Tips & tricks for starting (or restarting) low-carb Pt I"

http://www.proteinpower.com/drmike/...cks-for-starting-or-restarting-low-carb-pt-i/

&

"Tips & tricks for starting (or restarting) low-carb Pt II"

http://www.proteinpower.com/drmike/...ks-for-starting-or-restarting-low-carb-pt-ii/

And on wheat withdrawals:

"Wheat withdrawal: How common?"

http://blog.trackyourplaque.com/2008/10/wheat-withdrawal-how-common.html


----------



## Irene3

killcolitis said:


> I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.


This is exactly what I worry about. That without immune suppressants I'll flare. That's why I want to try to very slowly go on a good diet, and if things improve, slowly go off meds, and reintroduce foods, but at the sign of the slightest flare (if I ever go into remission on the diet), I'd be quick to ask my gi for immune sup again. Thing that worries me, is 6mp takes 6 months to work, humira 3, plus time to be approved, so if I did go off meds, the short time solution my gi and gp favor are pred. The only alternative to that, is entacort. Which is costly, but I'd much prefer it then pred. Worst case is cortisone 3_4 needles per day, then high dose pred. Which is what happens everytime I flare and go to hosp. :/


----------



## acemagic

killcolitis said:


> I think paleo is a great idea and it's worth a try but I will say we did try it for my young daughter with UC. And it was NO carbs, eggs, dairy at ALL. It was low carb veg and certain meat. At first it seemed to be a miraculous turn around but then it suddenly stopped working (before she reached remission) and it turned into a total disaster, huge flare. Good luck to you though.


Hey killcolitis,

The diet you mentioned above doesn't quite sound like a Paleo diet. Paleo isn't about low or no carbs. Matter of fact, it's recommended you DO get as many carbs as possible on the diet... just not from grains. It's essentially a no "processed food" diet. Which includes grains (wheat, rice and corn) and dairy and refined sugars.

But you are supposed to have loads of meat and vegetables and fruits. And eggs is especially one of the necessary items on the diet. They recommend a few a day!

-Adam


----------



## acemagic

Hey guys,

End of day 6 on the Paleo diet!

My energy level is still WAY down. I have trouble even walking around, which is awful because I'm back to work tomorrow! I weighed myself this morning and I have dropped 1 pound, down to 119. I'm still going to give the diet a fair shot though. Especially during the process where my intestines start to heal. Probably 30 days or so, at the minimum. Apparently it takes a good 2 weeks to get over the tired feeling, which is essentially my body going through withdrawals, much like a cigarette addiction or alcoholism (thanks to Beach for those links providing that information!!)Today I even went out to eat at a restaurant! Chicken and ribs with some veggies! It was delicious (except for when the veggies turned out to be string beans, which aren't Paleo legal)

...Also, the sauce on the ribs were probably not Paleo legal, but it was very very minuscule. Other than that, I've been doing really good with sticking to things. 24 days (at least) to go!

I also found a site called www.Paleohacks.com which is essentially another forum with Q&A about the Paleo diet. I asked a question about weight gain and got 2 answers within an hour, so that's good. There are some people that advocate that potatoes and/or rice could be legal on the Paleo diet and that the diet is more about minimizing processed foods than anything. If I need to gain weight, then it's OK to change things up a bit.

So if the downward trend continues, I'll start with some potatoes to hopefully reverse it.
I'll keep you posted!

-Adam


----------



## Jennifer

Might want to look at this then: http://www.crohnsforum.com/showthread.php?t=37567 It's not just about fried potatoes but potatoes in general as well.

Also for ribs a dry rub would be best unless you make the sauce yourself.


----------



## DougUte

I would much prefer beef raised on the free range for two reasons. 1. Raised on grass means that the meat is more natural, not filled with growth hormone etc like you will see in factory farm raised beef. 2. The range is much more humane to the cattle.My father was raised on a cattle ranch. My Uncle continued to run that ranch when I was a kid.I spent time on that ranch and learned a few things about raising beef.Quality feed, meaning good range, raised the best quality beef.


----------



## VapeKing

I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects. I don't know if its because we are genetically wired for this to happen or if there is an enzyme or dna problem going on but I have little doubt it stems from this. Secondary to the cause is our diet which has already been talked about at length...it just adds the fuel that starts this disease rolling. Autoimmune disease? Nope. The op has it right....you can go in to remission simply by changing diet....but further this disease can nearly be cured by changing how we think, how we handle stress and how we feel about ourselves in our own skin. Some have said they do it with prayer or meditation and thats great....whatever works for you. Some may need help from anti anxiety meds in combination with meditation. Some find help in forums such as this. Whatever makes you feel better about yourself or relieves stress in your life that is the route to go as well as changing that diet.  The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.


----------



## Jennifer

VapeKing said:


> I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects. I don't know if its because we are genetically wired for this to happen or if there is an enzyme or dna problem going on but I have little doubt it stems from this. Secondary to the cause is our diet which has already been talked about at length...it just adds the fuel that starts this disease rolling. Autoimmune disease? Nope. The op has it right....you can go in to remission simply by changing diet....but further this disease can nearly be cured by changing how we think, how we handle stress and how we feel about ourselves in our own skin. Some have said they do it with prayer or meditation and thats great....whatever works for you. Some may need help from anti anxiety meds in combination with meditation. Some find help in forums such as this. Whatever makes you feel better about yourself or relieves stress in your life that is the route to go as well as changing that diet.  The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.


I've been in remission for 13 years on 6MP an immune suppressant. Its not being uninformed, its fact. There is no cure for Crohn's.

Edit: And yes Crohn's is an autoimmune disease.


----------



## David

VapeKing said:


> I am 51 and have had CD since I was 9. Ive felt for a very very long time that the first and foremost this disease is caused by our mental makeup and it is exacerbated by our diet. Ive never met a CD or IBD patient that did not have an underlying nervous disorder lurking. We worry, we stress and then we worry some more. Sure every human has these issues but people with CD are the ones who it effects.


Stress no doubt plays a role in IBD.  How much, I don't know, it's probably different for everyone.  Most people, IBD or not have an underlying nervous issue, it's the nature of the world we now live in.  Those who then have an IBD phenotype have their disease worsened by stress.

Diet is no doubt one of the changes that people with IBD need to make.  Lifestyle changes such as stress reduction and developing tools to properly deal with it are of utmost importance as well.  No argument with you there.  

And I do believe some people are able to control their IBD with those two facets alone, but due to the world we live in, they're in a minority.  For example, you said it sometimes it comes to the point where some need anti-anxiety medications?  Why is that?  Why can't they just deal with their stress?  Because it is really hard on a good day and impossible on a bad.  And that's where this comes in:



VapeKing said:


> The doctors that advocate crazy drugs that wipe out your immune system are uninformed imho.


No, they're not.  Do you know why enteral nutrition which is shown to induce remission on par with prednisone isn't prescribed as a sole mode of treatment very often in adults?  Non compliance.  People can't stick to it.

The world we've created for ourselves makes sticking to a strict diet and living stress free EXTREMELY difficult.  As such, and for other reasons, flareups happen.  And the problem there is the more flareups you have and the longer you have chronic inflammation, the more scar tissue you begin to develop.  And sooner or later that scar tissue narrows your intestines enough that you develop a stricture.  And from there, terrible complications begin to develop.  And this is of course just one example of the many ways this disease can cause terrible complications.

Whether people are unable to stick to a proper diet (if they're even able to figure out what is proper for them) and low stress lifestyle or simply choose not to, the inflammation needs to be kept in check.  If it's not, sooner or later this disease will catch up to you in a very bad way.  For some, that's sooner, for some, that's later.  

I'm all for diet.  I'm all for lifestyle changes.  I'm all for alternative treatments.  But we must also realize that sometimes you have to call in the big guns.  And there's nothing wrong with that and people shouldn't be made to feel guilty for taking such medications when they get to that point.  They should be supported.  And as we're a support forum first and foremost, that's where we come in.  We educate (in a supportive manner) about all the possible choices out there.  We help people learn as much as they can about this disease so they can advocate for themselves.  And then when they make a decision about what path for treatment they decide to take, we support them.

Welcome to the forum by the way


----------



## VapeKing

As I said...this is just my opinion from nearly 40 years of research and study on this issue. Ive seen the doctors who claim one thing then they claim another. Ive seen their thoughts on this issue go full circle. I have yet to meet a gastro doc who has crohns who fully understands. Ive seen the drugs come and go. Ive talked to many many many people thru out the decades who have this disease. The two constants are the 2 things I have mentioned. Yes the body attacks itself but what makes the body attack itself? There is a reason. You zero in on that reason you fix this disease or control it.


----------



## David

Nobody fully understands Crohn's.

I definitely understand where you're coming from but you're simplifying an extremely complicated disease.  Yes, diet and lifestyle changes can absolutely help people with IBD.  But you can't zero in on what makes the body attack itself (if it is indeed even attacking itself) because THAT is not a THAT.  THAT is a mind exploding number of possible variables from microbial to environmental to dietary to genetic to lifestyle and everything in between.  And very likely different from person to person and a combination of god knows how many variables, some possibly dynamic in nature.

For example, over 20 genes have thus far been implicated in IBD and some genes have multiple possible mutations.  And then those mutations can affect a wide variety of pathways from the mucosal lining to extraintestinal manifestations to microbial sensing to lysosomal targeting to antimicrobial functions to regulation of the inflammatory response, and many more.  Take 100 IBD patients and each will have a different phenotype, different symptoms, different pathogenetical processes, and respond differently to like treatments.

You can't zero in on something that is all over the map.  But you can take a big step back and nuke it from orbit by trying to find the dietary changes best for you, reducing stress, exercising appropriately, utilizing alternative treatments, and a whole host of other lifestyle changes.  All the while utilizing western medicine to monitor your disease state and to provide that additional treatment regimen when needed, which unfortunately, is quite often.


----------



## acemagic

Interesting discussion. You both have very valid points.

Vapeking, I personally agree with you that there is a specific reason the body attacks itself. As far as "curable" diseases go, there always seems to be one source. Target the source, and you remove the disease. We just haven't found the source yet, so as David says, we try to Nuke the disease from orbit.

But I have to disagree on the "doctors" topic. Yes, no one knows everything about the disease, but those medications can help some people. I had a terrible flare about 8 years ago, took 1 dose of Remicade, and I was fine for a year. No, it didn't solve the problem of the disease being present, but it certainly masked the symptoms enough that I was able to function again. If a "cure" is found, then hopefully it will be shared with everyone and we'll move forward, but in the meantime, because we have no known cure, they can only do their best, which is resolve the symptoms. As Crabby mentioned, he's been in remission for 13 years, and that's no small feat, and nothing to sneeze at. But yes, if you get a bad doctor, who tells you that diet and stress aren't a factor and that you should just take steroids...well, then you've got a bad doctor.


PS, Thanks for re-posting that link on potatoes Crabby. I think I'll continue to stay away from them.

-Adam


----------



## acemagic

Hey guys,

Day 8, 121 pounds.

So far, so good. My energy levels are starting to come back, which is great! I'm actually back at work (just a computer job), but am definitely spending a great deal of time in the bathroom. Im missing my terminal ileum now, so I'm getting plenty of D, gas, cramping and bloating, possibly from all the fruit/vegetable fibre or from the steady stream of antibiotics I've just been on. Now that they're done, I'm restarting my Probitics, so hopefully that will help things along.

I have an appointment with my surgeon this afternoon. He mentioned that he is interested on putting me on Cholestyramine, which would be responsible for reducing the D, but it can also cause blockages if there is an overdose, and can reduce your absorbtion of Vitamins A, D, E and K. Has anyone been on this? Have you had any success with it?

I've also made an appointment with a Naturopath (who has a dietician in house) Next Saturday (the 30th). I'll talk to her about Paleo to see if it's something she supports.

The crappy news is that I got an email from my mother begging me to stop the diet because when she saw me the other day (at 119lbs) she said I looked like I was about to die. She's pretty frantic about me gaining weight. But I'm too far in to stop now, so I had to tell my mother that I wasn't going to stop unless I continued losing weight. So that was fun. but hopefully as long as I gain weight, she'll be ok with things.

That's about it! I'm actually not having a lot of trouble sticking to things. I might still try to re-introduce rice, if I get ballsy enough. We'll see! I'll keep you posted!

-Adam


----------



## JMC

David said:


> Nobody fully understands Crohn's.
> 
> I definitely understand where you're coming from but you're simplifying an extremely complicated disease.  Yes, diet and lifestyle changes can absolutely help people with IBD.  But you can't zero in on what makes the body attack itself (if it is indeed even attacking itself) because THAT is not a THAT.  THAT is a mind exploding number of possible variables from microbial to environmental to dietary to genetic to lifestyle and everything in between.  And very likely different from person to person and a combination of god knows how many variables, some possibly dynamic in nature.
> 
> For example, over 20 genes have thus far been implicated in IBD and some genes have multiple possible mutations.  And then those mutations can affect a wide variety of pathways from the mucosal lining to extraintestinal manifestations to microbial sensing to lysosomal targeting to antimicrobial functions to regulation of the inflammatory response, and many more.  Take 100 IBD patients and each will have a different phenotype, different symptoms, different pathogenetical processes, and respond differently to like treatments.


It is a complicated disease or a lot of simpler diseases.  Given the range of symptoms (stricturing, fistulating, inflamation) and locations it appears (ileum, cecum, ascending colon, sigmoid colon, etc.) it is surprising it is considered a single disease.


----------



## JMC

Since having a resection and ileostomy I have become acutely aware of the importance of diet, vitamins and minerals and hydration.  Whether diet can prevent Crohns is debatable, but what I am 100% sure about is that for me to feel the best I can (within the constraints of having this illness) I need to get my diet, vitamins and minerals and hydration exactly right.  It can make the difference between a miserable life and a really good one, so it is worth spending time and effort on finding what works for you.


----------



## mnsun

Yeah, the latest Consumer Reports had an article on prevention as being the best way to get the most out of doctor visits.  It went on to explain that they sent a survey to medical schools around the country, asking whether their curricula required 25+ hours of nutrition education, and only something like 25-30% actually did. (too lazy to look it up, sorry).


----------



## acemagic

JMC said:


> Since having a resection and ileostomy I have become acutely aware of the importance of diet, vitamins and minerals and hydration.  Whether diet can prevent Crohns is debatable, but what I am 100% sure about is that for me to feel the best I can (within the constraints of having this illness) I need to get my diet, vitamins and minerals and hydration exactly right.  It can make the difference between a miserable life and a really good one, so it is worth spending time and effort on finding what works for you.


Hey JMC,

Mind if I ask what your diet is? What vitamins you take, how much water you get per day? What foods do you try to avoid? How long have you been feeling "good" for? And are you on any medication? Thanks!

-Adam


----------



## JDTM

Adam, thought I'd chime in briefly regarding your terminal ileum resection, D, and potentially using cholestyramine.  A bunch of people on the forum have had great luck using psyllium husks -- definitely do a search and check it out if that's something you're interested in, as it seems to act in a similar way by absorbing the bile salts that your terminal ileum used to take care of (which ends up being an irritant to your colon and causes D).  Not sure if psyllium husks are "Paleo legal," but I thought I'd make a mention of it.  Best of luck and keep us updated on how you're doing!


----------



## JMC

acemagic said:


> Hey JMC,
> 
> Mind if I ask what your diet is? What vitamins you take, how much water you get per day? What foods do you try to avoid? How long have you been feeling "good" for? And are you on any medication? Thanks!
> 
> -Adam


Vitamins: B12 and D daily, Calcium occasionally
Medication: 150mg Azathioprine

I eat a fairly standard low fibre diet.  It maybe isn't that varied, luckily I like chicken and rice!  I also eat at least one banana (for potassium) each day.

Breakfast: banana, rice crispies with milk, bottle of Lucozade
Morning snack: latte + pastry
Lunch: Chicken and rice (Chicken Katsu Bento, Sweet and Sour Chicken and rice)
Afternoon snack: salted crisps
Dinner: White pasta + sauce (carbonara, tomato), fish + potatoes

Drinks: 2L made up of 1L lucozade (low sugar) and 1L water.  Occasionally I drink Ribena with a large pinch of salt if I am bored of Lucozade.  I tend to drink one small coffee (latte) per day and several cups of tea.

Generally I avoid:
Nuts
Anything with a tough skin
Salad
Green vegetables
Red meat, with the exception of bacon (once per week), and the occasional burger (ground red meat is easier to digest)


----------



## acemagic

JDTM said:


> Adam, thought I'd chime in briefly regarding your terminal ileum resection, D, and potentially using cholestyramine.  A bunch of people on the forum have had great luck using psyllium husks -- definitely do a search and check it out if that's something you're interested in, as it seems to act in a similar way by absorbing the bile salts that your terminal ileum used to take care of (which ends up being an irritant to your colon and causes D).  Not sure if psyllium husks are "Paleo legal," but I thought I'd make a mention of it.  Best of luck and keep us updated on how you're doing!



Hey JDTM! Thanks for the advice! Unfortunately Psyllium husks aren't legal on Paleo, and they can be irritating to the gut. Glad to hear that some of us are having success with it though! I've been on the Cholestramine for 2 days now and haven't noticed much of a huge change. My doc said it could take up to a week to see results though.

-Adam


----------



## acemagic

Day 10: 123 lbs!

I'm very happy I'm actually putting on weight. I would have had to have dropped the diet if I wasn't. Energy levels are pretty normal now, but because I'm eating so much (2380 calories minimum/day, and on a Paleo diet, that's not easy), I'm feeling pretty bloaty. Also, the more I read about the SCD diet and the Paleo diet, the more I hear about the initial first few days where you eat broth and SCD friendly yogurt (SCD Diet) or cooked veggies (Paleo diet) and how important that is to reset your bowels... Something I didn't really do. My last blood test also showed a growing number of Candida in my gut, and apparently those little buggers feast on fruit.

So I'm starting to think my gut is in a bad place right now. A 2 week dose of IV antibiotics, followed up by 1 week of oral antibiotics, plus with my candida result, I imagine my intestine is in no shape to be doing the work it's doing (hence the bloating/gas)

Does anyone have any experience with a Candida cleanse or re-populating  good bacteria? I'm lazy and won't take the time to make SCD yogurt, but I have been taking the 50 billion critical care probiotic from Renew life for the last 3 days. How long doesit take to get your gut back to normal? How long does a Candida cleanse take and what does it entail? Would I starve to death, knowing what I can eat right now is limited?

PS, The diet isn't very hard at all so far. Meat and veggies and fruits and for snacks: nuts, raisins and beef jerky. Eggs and Bacon every morning. I can't complain!

Thanks for reading!

-Adam

-Adam


----------



## acemagic

Hey all,

Day 14 on the Paleo diet. I was a bit concerned because over the weekend, I had dropped down to 121, but my sister (who is trying to lose weight) says that fluctuations are normal when trying to lose or gain weight, and to just keep at it. Sure enough, I was back to 124 this morning!

So...pain wise, I'm doing fine. Nothing to report there. Matter of fact, the only time I *might* have a cramp is when having a BM (which have been SOLID for the 1st time in years thanks to the Cholestyramine). I can't decide whether I like that or not. I feel a little bloaty more often, but no contstant bathroom trips!!

Diet wise, I think I'm inadvertantly cheating here and there(sorry!!!). For example, I went to Nando's chicken for the last 2 nights, and got a half grilled chicken, with a salad (oil and vinegar dressing) and some coleslaw. Well the coleslaw, had a slightly creamy sauce, and when I asked about it, they said that it contains a bit of mayonnaise. Mayonnaise isn't Paleo legal, because I believe it contains corn starch, but it's in SUCH minute amounts! I'm trying to be rigorous about sticking strictly to the diet, but sometimes I just never know. It's mostly sauces I have trouble with.

Bacon is the other one. bacon is a meat, but MOST bacon contains Nitrates. I've been eating 5 slices of bacon from A&W every morning to get my calories up, and just now discovered that the nitrates that they most likely have makes it illegal on the Paleo diet. Naturally, 5 slices of bacon each morning is a big factor in assisting with weight gain. not sure what I can replace them with, or if I should even bother. Thoughts? Do you think this is killing my whole experiment?

Other than those 2 mishaps, I've been very rigorous.

Also, I've noticed that yesterday and today, both my BM's and my gas have been extra smelly. I was always that way before my operation, but I thought it was caused by the disease. Could smelly gas be caused by Candida? I'm going to talk to my naturopath about a cleanse this Saturday when Is ee her. We'll see what she recommends.

But all in all, feeling great! My scar from my surgery has healed very well and my energy level is back to normal. I'm also back on L-glutamine (for leaky gut), probiotics, and fish oil.

Talk soon!

-Adam


----------



## hugh

there will be a 'die-off' after a week or two and you will feel like hell, 
there will also be the addiction withdrawals after a week.

I can't say this loud enough-
*
CARBS (from paleo sources) ARE FINE ON PALEO,* -
*Where the carbs come from is what matters*.
All meat, veg, nuts , eggs, etc contain carbs ,
*Paleo is called a low carb diet because there is a reduction in the amount of carbs eaten by excluding sugar and grain*, but pumpkin, carrot, tubers (sweet potato, yams) etc are OK.

If you don't get enough carbs you will feel like shit.
The amount of fat (animal, olive oil, avocado,nuts) eaten increases and you derive more energy from them.

Vegetable oils MUST be avoided

It's all about repairing intestinal integrity (reducing intestinal permiability- leaky gut),
so reducing stress, avoiding antibiotics, NSAIDs, grain, legumes 

A 'Paleo' diet can be unhealthy if it is unbalanced

Paleo can be specifically tailored to Autoimmune diseases.
These links discuss the Paleo for Autoimmune Diet
I've posted these before but i'll do it again.
. 
http://paleodietlifestyle.com/dealing-with-autoimmune-diseases-and-digestive-problems/
"Let me reitterate that it’s really important that you stick to this stricker version of the diet 100% because only one little intruder will tend to mess everything."
http://paleodietnews.com/2494/cooling-inflammation-with-the-paleo-diet/
http://www.eat-real-food-paleodietitian.com/support-files/sibo-gut-healing-protocol.pdf


----------



## ZM1019

I've never done Paleo since I can't eat any form of starch without feeling like I ate glass for 3-4 days.  My GIs haven't ever told me not to watch my diet since it definitely is the culprit of the pain, inflammation and shut down of my colon.  (As a matter of fact the first one told me no more starch ever and my newest one told me that sounds logical to me so don't eat it.  Now she didn't say that's all I should do though.)  I had to learn so much more about food and enzymes than I ever wanted to know.  I learned a lot though.  There's a difference between amylose and amylpectin forms of starch and different enzymes break them down into glucose.  I have what I need for amylpectin and no Amylase to break down Amylose.  Nuts are processed differently so I can tolerate most nuts but cashews and peanuts are too much.  I could never figure out why I could tolerate beans better than other starches when they are full of starch.  Turns out they have antiamylase and your body ferments them through the system so they are known as resistant starches.  Hence, Amylase has no effect on them.  Green bananas always killed me and I didn't like bananas unless they were super ripe.  Turns out bananas are full of starch and turn to sugar as they ripen.  I can eat them now if the skin is black and I can NEVER touch a banana from a regular grocery store.  Why?  Because they gas them when they are not ripe so they look ripe.  This is true of all vegetables and fruits in stores so do yourself a favor and only buy from a farmer's market or vegetable stand.

Starch is in almost all curing, preservatives, thickeners, etc so I have to know the name of every form of it and read every ingredient on every label every time.  Foods change their ingredients constantly and if I slack off, I'm in agony for days.

Starch is used as a binder and filler so it's in all pill and capsule forms of drugs/vitamins and most liquid forms.  For me that means if it's not compounded, I'm not taking it.  No exceptions.  If I don't know, I refuse it.  No exceptions.

Starch is also used in things like commercial yogurts, ice cream, chocolates, salad dressings, etc.  When this first started, I threw out all food, meds, vitamins, dressings and seasonings.  All of it.  And at that time no one said you have Crohn's.  I took one look at my endoscopy/colonoscopy reports and thought about how my father and niece died of stomach cancer.  It all went.  When I'm tempted, I take out those pictures and look at them and it turns my stomach.  I can't even tell you how many times I've refused to eat because I'm not sure.  I am just not doing it.

Anyway, I learned more about this stuff than I ever cared to know.  Most recently I found out my body makes Amylase so it's not releasing it right which means my digestive system doesn't send the signal to say I've eaten starch.  No wonder it feels like I've eaten glass for days.  Without Amylase, my body cannot digest any starch with Amylose.  It's that simple.  I don't need a doctor to tell me that - all the research is online.  For Amylase deficiency that I have every symptom but one.

No other foods bother me at all and in two years, my erosion of the esophagus and two ulcers healed.  No matter what else I do, I'm going to continue to avoid the starch.  It's hard and it's basically ruined my life, but I refuse to feel that kind of pain and watch my right side look like I have a tumor.

I hope this helps you.  Listen to your body.  If you look at what bothers you and really research the chemical composition, I have a feeling you are going to be very surprised when you find a pattern.

Give up your meds?  Not sure about that, but diet certainly can't hurt.


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## Ihurt

I was looking into doing the paleo diet for some time now. I have not yet been dx with crohns disease, I am still doing the whole song and dance with my GI doc. He says IBS. I am not so sure. I have not been through any tests yet as my GI doc says there are risks with the tests. He wants me to try a couple different meds first before we do testing. I have been suffering for the last year, more so the last four months though have been the worst. 

I also have other chronic health issues so I have seen many many doctors and specialists over the last 9 years. I will say this, chronic illnesses are not very well understood, especially by western med doctors. They just do not have the knowledge at this point as these diseases are just so complex. 

As far as what causes crohns or any other of these different diseases, I have to say that it could be any number of things from bacteria, to viruses, to parasites, who the heck knows. What ever the reason, it is something that ignites the immune system into going haywire. Our DNA also play a huge factor in how our bodies respond to these different afflictions. 

Interestingly, when my gut issues started this last year I was already on a very bland diet sort of speak due to all my other health issues. My diet consists of the following foods; roasted chicken, salmon, or roasted turkey. Those are the meats I eat. Brown rice, quinoa, or boiled potatoes are my carbs, and for vegis I usually would eat carrots, or very soft cooked green beans.  I only drink water which is 7.5 on the alkaline scale and a cup of chammomile tea every morning, sometimes with a little honey. I have been gluten free for the last five years. So as you can see, my diet has been pretty healthy for the most part , even before all my gut issues started. 

I do have a theory as to why my gut is messed up though. I have IC( interstitial cystitis) which is another chronic disease of the bladder. I also get chronic UTI's.  Because of this I was put on a low dose antibitoic(keflex) daily for the last 4 years. I am certain that the antibitoic is one of the reasons my gut is in the state it is now. I just do not know what to do as havine chronic severe UTI's is not good for you either. I have also read that antibitoics can cause crohns disease. This is worries me. 

Anyhow, I am going to look into the paleo diet as I do believe that diet does play a huge role in our overall health all around, meaning us, people who do have chronic illnesses. Not that eating poorly will cause any person to get a disease like crohns, that is not true. My brother eats horribly and drinks lots and lots of alcohol and he is healthier than me!! So again, I think it just depneds on the person. 

A question about the plaeo diet I have: I am unable to tolerate any type of vegetable unless it is cooked extremely soft. Also, I cannot tolerate eggs or beef, they upset my gut. Nuts are an absolute no for me as well. Just wondering if one starts a diet like this, should it be under the supervision of a nutritionist???


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## hugh

Ihurt said:


> A question about the plaeo diet I have: I am unable to tolerate any type of vegetable unless it is cooked extremely soft. Also, I cannot tolerate eggs or beef, they upset my gut. Nuts are an absolute no for me as well. Just wondering if one starts a diet like this, should it be under the supervision of a nutritionist???


That depends on your health,
I'd definitely find help if i was already 'at deaths door' but if your in a good place at the moment you can try it and go to your GI if you feel you need to.
This is only my opinion and you need to monitor your health

It would be good to line up a nutritionist so you don't have to look when you feel bad.

If you can find a sympathetic 'paleo - friendly' nutritionist then great, but there's no point going to a SAD (standard american diet) nutritionist.

Everybody has their own take on Paleo, generally based on either what works for them or what they want to believe.

Start with a restricted immune friendly version and add from that
I'd stop potatoes - but sweet potatoes are ok
I've found white rice to be a safe cheat FOR ME, maybe for you to, but keep it for a last resort.
Juicing (vegetables - not fruit) is a good way to get high quality nutrition.
Bananas are safe snacks
Check out the limk i posted earlier 
http://www.eat-real-food-paleodietitian.com/support-files/sibo-gut-healing-protocol.pdf

@ Acemagic - stay away from potatoes for now. rice is safe but potatoes are proven to contain high levels of glycoalkaloids - a proven cause of intestinal permeability.
Yes they are paleo 'legal' (although there is lots of debate in paleo world) but they are not a good idea for autoimmune sufferers


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## Ihurt

Thanks for the reply. I am going to give the diet a try. I have a brand new juicer so I will also try the vegi juicing. When you do the juicing, does it cause diareha? How much would you drink in a day and which vegis are considered safe??


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## Beach

That's wonderful about the lack of cramping, other than a bit when on the porcelain god.  That's one of the first items I noticed on the paleo diet, the cramping went away.  I stopped farting.  Well, I rarely fart anymore, and when I do they rarely stink.  I never saw that mentioned as a selling point for why to eat this way, but as an IBD'er it gets a hearty big thumbs up!  :thumleft:

My guess about the smelly gas, it probably came from some of the fast foods eaten.  Maybe the coleslaw.  Hard to say.  

There is bacon sold that is advertised as nitrate free.  What it has though is celery juice in it, which is naturally high in nitrates.  So overall if you are feeling well, and the bacon doesn't seem to be bothering the gut, I'd stick with what you are doing.  Lots of paleo eaters enjoy their bacon from what I read.    

With that said, of all the meats in the paleo community pork has received some concerns.  One writing from the Hunter-Gather web sight on that:  

"The trouble with pork"

http://hunter-gatherer.com/blog/trouble-pork

As for weight gain, I guess if there was any advice I could give it would be to concentrate on being well to the gut.  Once you have the intestines in working order, the weight should come.  It will take time but it will happen.  That is one of the nice items often mentioned about paleo eaters, we tend to grow thin and muscular.  Since I began eating this way, I've put on a little over 30lbs.  I lift weights a few times a week, but have sometimes wondered if the diet isn't playing a bigger part in the gain I've experienced.  Once again, hard to say.  

Arthur de Vanny, is sometimes referred to as the grandfather of paleo eating.  Now in his early 70s, he and his wife are looking great being thin and muscular. If I remember correctly, Arthur has written some about muscle weight gain seen with paleo eating.  

http://www.arthurdevany.com/ 

Good luck!  Hope all continues to go well.


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## hugh

@ Beach -i love bacon but i've always been a bit suspect of the pig, thanks for those links

@Ihurt - those questions i can't answer,
I would take it easy on the juice to begin, you need to do the bland, overcooked, monotonous, safe but totally paleo thing to begin with.

It depends on your stomach (and your juicer, - some have alot of pulp (fibre) so you may want to strain it)
My favourite was carrot and beetroot with spinach/kale/cabbage.

There is a movie out there called "Fat, Sick and Nearly Dead" about a guy with a different AI (chronic Urticaria) who drank nothing but juice for 30 days (one guy went 60 days), but they both had alot of fat to live off.
But it proves that you can live on juice (and fat)

It's *not* a juicing diet, the juice is just a nice way of getting nutrition.

It's about strictly avoiding 'neolithic' foods, basically anything that wouldn't have been available before agriculture.

I believe it's about intestinal permeability and gut flora.

If you feel you need help there are a couple of people who offer it for a very reasonable fee (less than $40 with a one year money back guarantee i think) - i have no affiliation to them and don't subscribe to their service (but i do receive their free emails and read their blog).
 -they will be more help than me so pm me if you want the name as i don't want to advertise a service i haven't used

Remember, my opinion is only my opinion, this is your journey and i wish you well.


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## kiny

Meh, ok, this is what I think.

I don't think diet actually helps that much unless you are completely in remission and then use the diet to stay in remission. A diet will not knock you into remission if you aren't already. I think diets are overrated as a "cure", I think herbs are underrated since many are potent cytokine inhibitors and many are able to kill macrophages. But not trying to alter your diet to accommodate your disease is just as stupid, if we know milk is full of MAP, why are you still drinking milk, if you know something is hard to digest, why try it right, why not avoid it.

The discussion about suppressing the immune system when crohn is likely bacteria. On the one hand it sounds completely idiotic, and I think anyone who says it's idiotic is partly right. What it does do is lower inflammation by lowering TNF-α and it might actually in some weird way fight bacteria because the excess an inflammation in the mucosa is why the bacteria is thriving. Another thing is that E. Coli and MAP exploit TNF-Alpha and macrophages, macrophages are able to engulf MAP but MAP is multiplying inside the macrophage.

On the other hand, it's still stupid because it doesn't target the cause at all, people aren't getting better with suppressing the immune system all, they are at best in remission, and many people (University College London) have asked how wise it is to suppress the immune system when you're dealing with a bacteria, in the long run they believe it might actually worsen crohn.

Antibiotics do affect crohn, which is another reason why the autoimmune theory is complete and utter bullocks, it's a bacteria, TNF increases, you get inflammation, and some drugs suppress the inflammation but they are not going after the cause, the bacteria. And why would they, companies don't give a **** if you get cured or not, the longer they hold a cure off the more money they are making from you. That's why there is so little research interested in herbs, in diets, in antibiotics (most used for crohn are cheap as hell because anyone is allowed to make the ones for TB), because there is little money in it. You have to realise how much money the companies are making on these things that suppress the immune system, billions.

So, I don't think a diet helps that much because it's not that powerful against intracellular bacteria, but a diet combined with the right herbs that lower cytokine and kill macrophages and some probiotics might work much better. I think relying on a diet alone is not going to do much, unless you are for some reason, already in remission, and even then, some diets like the SCD diet are good on the one hand because they lower sugar, but stupid on the other because they exclude short chain fatty acids needed to repair the intestine.


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## Jane

Acemagic -

I LOVE your hypothesis about three types of foods for Chron's disease: 1) those that cause the disease, but don't feel bad when you eat them (e.g., pasta) 2) those that irritate you when you eat them while flaring (vegetables, fruit) and 3) those that are safe.

I agree with your hypothesis and often think along these parameters when I try to decide what to eat.

I greatly appreciate this thread.  This is the type of discussion I would like to have with friends but can't.


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## David

kiny said:


> I don't think diet actually helps that much unless you are completely in remission and then use the diet to stay in remission. A diet will not knock you into remission if you aren't already. I think diets are overrated as a "cure", I think herbs are underrated since many are potent cytokine inhibitors and many are able to kill macrophages.


There is study after study showing the efficacy of enteral nutrition.  It has the same remission induction rates as prednisone when stuck with.  And enteral nutrition is a form of diet.  A form of diet that doesn't (directly) kill bacteria or inhibit TNFa and yet it works.

Diet works.  Not for everyone, but it can most definitely work.


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## Susan2

I've been in remission for 13 years after severe Crohn's for 35 years or so, numerous resections and associated operations and, finally, a proctocolectomy and ileostomy.  I have been on *no* medication since the proctocolectomy.

I am fine with lamb, rabbit, turkey, occasional beef but not pork or chicken; most fish, but not shellfish (except scallops) or crustaceans. Not soy in any form.

I eat limited white bread, usually sourdough and organic, white spelt if I can get it and oats for breakfast (as porridge - I can't cope with uncooked oats). No roughage grains.

Potatoes, sweet potatoes, only leeks (well cooked) in the onion family, no chillies but well-cooked red capsicum, celariac, fennel, eggplant and various other vegetables - all cooked. 

I can't cope with pulses at all. (I spend hours picking through green beans to get tiny ones with the seeds undeveloped.)

Milk and almost all milk products have always been lifesavers with me. There are a few cheeses, like blue cheese, that I can't cope with.

Few fruits - bananas (one a day), apples, if I peel and grate them or chew very thoroughly, stewed plums, watermelon, pureed and sieved berries in small quantities and that's about it.

Sorry that this has been so long, but I find it hard to categorise my positive foods except that - and this is the bit that will bring out the extreme reactions - I follow an adapted (because of avoiding roughage and irritants) Blood Type diet for B+. Before anyone leaps up and shouts "Nonsense", "voodoo" or the like, just remember that I have been in remission for 13 years on no medication.


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## kiny

David said:


> There is study after study showing the efficacy of enteral nutrition.  It has the same remission induction rates as prednisone when stuck with.  And enteral nutrition is a form of diet.  A form of diet that doesn't (directly) kill bacteria or inhibit TNFa and yet it works.
> 
> Diet works.  Not for everyone, but it can most definitely work.


I've seen the study and it showed what you said, think it was you who linked it.

My gripe with diets is this:

*many times I have seen people say, I do diet X, even though diet X has nothing to do with crohn, was not tested for crohn and no one is able to say why it works, they just do it, because it's a "good diet"

*my assumption is that crohn is a bacterial infection (it's one of the main theories right now) and those bacteria are incredibly nasty, it would be akin to someone saying that they can cure tuberculosis with a diet, everyone would tell that person they are out of their mind

*many people who say diet X works are on meds, how can you possibly know it's the diet if you're taking meds

*many people are losing weight on diets because many are excluding fats, sugar and protein, the consequence is rapid weight loss

*SCD diet is a diet many biologists wonder about because it's low on short chain fatty acids, you need those to repair tissue, so how does it make sense to recommend something like that for crohn. On the other hand recommending lower carbs like the SCD does does make sense, but lower SCFA does not, which the SCD diet does.

Those issues bother me when ppl say "diet works", yeah, maybe it does, but I still need to see the first person, not on meds, who is in a flare, who stopped the flare through a diet. Sure diet might work for long term therapy for someone in remission, but for someone in flare who is already not eating much, and they then go on a diet, that's a good way to make your disease far worse, they will lose weight and I bet they will end up being worse than better. Diet when in remission, why not.


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## David

kiny said:


> I've seen the study and it showed what you said, think it was you who linked it.


Studies.  There are a lot of studies that corroborate that enteral nutrition is efficacious.  



kiny said:


> *many times I have seen people say, I do diet X, even though diet X has nothing to do with crohn, was not tested for crohn and no one is able to say why it works, they just do it, because it's a "good diet"


I'd be concerned as well.  If we're going to try to help control our diseases with diet, it needs to come from well-researched information and tracking what you can consume so that you can change the diet to fit your own needs as you get data.



kiny said:


> my assumption is that crohn is a bacterial infection (it's one of the main theories right now) and those bacteria are incredibly nasty, it would be akin to someone saying that they can cure tuberculosis with a diet, everyone would tell that person they are out of their mind


I was going to say, "Nobody is claiming to cure their Crohn's though" and then looked at the thread title   I don't believe diet is going to cure Crohn's, but I believe it can lead to remission.  Or even better, diet along with other treatments can lead to remission and help you stay there.



kiny said:


> many people who say diet X works are on meds, how can you possibly know it's the diet if you're taking meds


How can they possibly know that their meds are working when their diet is potentially the cause for the remission 



kiny said:


> many people are losing weight on diets because many are excluding fats, sugar and protein, the consequence is rapid weight loss


I agree that it is vitally important to make sure that all nutritional needs are being met with any diet.



kiny said:


> SCD diet is a diet many biologists wonder about because it's low on short chain fatty acids, you need those to repair tissue, so how does it make sense to recommend something like that for crohn. On the other hand recommending lower carbs like the SCD does does make sense, but lower SCFA does not, which the SCD diet does.


What we know is we don't know everything.  Who knows why the SCD works for some people but if it does, it does.  Heck, they don't even understand why prednisone works and it is an OLD medication.  But if something works, it works.  A doctor friend of mine has a great saying, "It works in practice but not in theory".



kiny said:


> Those issues bother me when ppl say "diet works", yeah, maybe it does, but I still need to see the first person, not on meds, who is in a flare, who stopped the flare through a diet. Sure diet might work for long term therapy for someone in remission, but for someone in flare who is already not eating much, and they then go on a diet, that's a good way to make your disease far worse, they will lose weight and I bet they will end up being worse than better. Diet when in remission, why not.


Give this book a read.  I think the data found in it might give you a new perspective.


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## ZM1019

David said:


> There is study after study showing the efficacy of enteral nutrition.  It has the same remission induction rates as prednisone when stuck with.  And enteral nutrition is a form of diet.  A form of diet that doesn't (directly) kill bacteria or inhibit TNFa and yet it works.
> 
> Diet works.  Not for everyone, but it can most definitely work.


Thanks for this.  I'm new to this, but it is what I strongly suspect.  I have to look at the fact that when this started two years ago, I suddenly had erosion in the esophagus and colon and two ulcers.  This after no problems at all (not even a stomach ache or diarrhea or gas or acid) in my entire life except when I had the rare flu that everyone else had with the same symptoms.  Onset was immediate when I suddenly moved to a country where starch dominates the foods eaten and that was the one ingredient that I never liked, it never tasted right and it made me gain weight like crazy.  So there was always something not working right there and moving to a place where it was in everything caused my body to react within two months.  (When your right side pops out to the point where you can't wear your clothes within two months, that's pretty extreme.)  I know it wasn't H-pylori or the C bug because they tested for it in biopsies along with everything else.  I might have been in Latin America but they tested me for everything from end to end.  They explained everything to me.  The GI told me to stop eating starch.  

Two years later the erosion in my esophagus and my two ulcers are gone.  And before you say that wasn't Crohn's, we don't know that because Crohn's can be all the way through even in the mouth, it's just not common.  It also isn't common to have it show up in someone who is 52 with no diarrhea, cramps or blood.  So right now it's possible but can't be verified.

Yes, my GI had me on Omeprazole, but that does not cure erosion or ulcers so the only thing left is diet.

I did a few simple things:


Cut starch (because that was my trigger)
Ate organic yogurt because it has the good stuff and no added starch
Took probiotics and digestive enzymes
Ate only lean chicken and fish (cooked in olive oil with no seasoning), spring mix (or other colorful lettuce with only olive oil, no vinegar), colorful veggies and a variety of very, very ripe fruits
Cut acidic juices (goodbye cranberry and pomengranate juice) and only ate the fruit
Took starchless vitamins
Drank Aloe juice with chunks of aloe in it

Nobody told me to do all of this.  I did it because it made sense to me.  Your gut is all about balance and somehow (probably because Naproxen ate holes in me) my body got out of balance.  It perceived starch (which I ate when I took Naproxen) as the enemy and began to attack (inflammation).  The rest was probably just a cascading effect of one problem leading to another.  So it made sense to me to A) get rid of the trigger, since starch is the most useless food ever anyway and easy to replace for nutrients and fiber; B) take enzymes, probiotics and vitamins to get my body back in balance; and C) take something internally cooling to get the inflammation down.

I did about 400 hours of research on the chemical composition of starchy food and how the body breaks it down and what can go wrong with it (that's how I came to understand Amylase and how it breaks down starch into sugar so you can digest it).  I had my brother, who is a researcher, pull all of the research we normal people can't see to find out what else they know.  Then I made a decision and took a shot.  When I told my GI in Costa Rica he was fine with it.  When I told my GI here what I did, she was fine with it.  I didn't go crazy, I just used deduction and common sense.  

Diet is not a one size fits all treatment or cure.  You really need to understand food and your own body in depth.  My diet would not work for the majority of you because you problems and symptoms are different.  You need to understand how it all works together.  If you aren't willing to do the research and you can't be committed to the resulting diet (enough to leave a $50 meal sitting on a table while everyone else eats around you because it's dangerous to you) then you aren't going to be able to have success.  Diet change is an intense commitment that requires a lot of work.  It's hard to do under the best of circumstances and most of us are already so sick and in so much pain that it's hard to think straight let alone read hundreds of hours of research and stick to a diet that is very hard when our lives are already hell.

At the end of the day, each of us must make our own choice and take responsibility for the consequences.  When my GI comes to me with suggested treatment, I'll be responsible to know everything about those drug options, their efficacy and side effects and make the best choice I can.  I'm the only one who will live (or not) with the consequences so it's up to me.  I'm not going to judge anyone on this board because we're all just doing the best we can to feel better and survive.  But I will say approach everything with an open mind because science discovers things all the time that discount or change previous theories.  If we aren't open to at least looking at those, we only hurt ourselves in the end.


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## David

ZM, based upon what you're saying, you may want to get this book or research the Specific Carbohydrate Diet.  It may connect some dots for you and give you other ideas.  The paleo diet discussed in this thread will also likely be interesting for you to learn about.


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## ZM1019

Interesting.  SCD's premise seems exactly like mine and follows exactly what I think happened to me right down to the increase in waste:


When the body receives complex carbohydrates (disaccharides or polysaccharides), these substances must be broken down before they can be absorbed. 
In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish. 
Bacterial overgrowth is accordingly followed by a significant increase in the waste and other irritants they produce. 
Irritation in the lining of the digestive tract results in the overproduction of mucus and injury to the digestive tract, which in turn causes malabsorption and makes it even more difficult to maintain proper digestion.

I do believe I looked at it this way of eating at one point, but I will take another look at it.  Paleo has to be scaled way back for me because alot of things it allows, I can't eat.  SCD is probably closer to what I can do.

Oddly enough, milk doesn't bother me at all and never has.  I count my lucky stars there because when I travel it's all I can have on the plane.  Having nothing for 20 hours is tough.

Thanks for this!


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## kiny

ZM1019 said:


> Interesting.  SCD's premise seems exactly like mine and follows exactly what I think happened to me right down to the increase in waste:
> 
> 
> When the body receives complex carbohydrates (disaccharides or polysaccharides), these substances must be broken down before they can be absorbed.
> In the body of a person who is not able to break these substances down efficiently, an influx of undigested material causes harmful bacteria to flourish.
> Bacterial overgrowth is accordingly followed by a significant increase in the waste and other irritants they produce.
> Irritation in the lining of the digestive tract results in the overproduction of mucus and injury to the digestive tract, which in turn causes malabsorption and makes it even more difficult to maintain proper digestion.


See, some stuff she says in the book makes sense, but here the issues I have with the book beging, what is she writing about, mucous collitis or crohn, or does she believe it's one and the same. She never mentions inflammation through excess tnf-alpha production, she thinks it's mucus overproduction. So what is it...if it's mucus overproduction then how come lowering TNF is stopping inflammation. I mean the stuff she says makes sense, but she says a lot of stuff that has nothing to do with crohn specifically, she uses that theory for multiple diseases.

I think the SCD diet might help, if someone changes it to work for crohn specifically with good research behind it, and the issue of SCFA is solved.
_

what she says:

"a significant increase in the waste and other irritants they produce"_
_


what actually happens in cows with johne's:

"mucosal tissue damage results primarily from severe immune pathology and chronic inflammation.In the late stage of the disease, large numbers of acid-fast bacilli (AFB) are found in lesions (3, 6)."_

what she says makes sense, but I don't think it's that powerful, diet that is, unless you are in remission, and the excess TNF is resolved, then maybe to stay in remission, but I don't think going from flare to remission with a diet is possible.


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## kiny

Another thing is, let's say someone wants to claim that going from a flare into remission is possible with a diet. How come, that there are so many people who stop eating altogether don't go into remission at all.

If it was that simple that you only needed to avoid X and Y, and avoid waste and slow digesting carbs (that's her theory, she has no issues with fast digesting carbs like honey) like the SCD diet, then how come everyon who stops eating, and many do with crohn,  get sicker and the inflammation doesn't go away.

The inflammation and excess TNF are NOT going to go away by changing to a diet, it would take years to starve a bacteria, and even then, they can see bacteria can survive in very harsh conditions, they adapt, deplete them in iron and sugar and they simply adapt and survive. Once you are in remission I believe in it, but a diet that knocks you from a flare straight into remission, I do not believe that, the inflammation will stay for those people and they will just lose weight.


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## David

kiny said:


> Another thing is, let's say someone wants to claim that going from a flare into remission is possible with a diet. How come, that there are so many people who stop eating altogether don't go into remission at all.


Remember your theory (I think it's a theory of yours at least) that Crohn's Disease is an immunodeficiency?  I agree with that.  I think that vitamin, mineral, and other nutrients play a vital role in disease pathogenesis.  Stop consuming any forms of nutrients and the available nutrients become further or completely depleted and the cycle continues.

Inflammation can go away with enteral nutrition.  It can even promote mucosal healing.

And I think you're focusing on TNFa a little too much.  Yes, some of these medications are marketed as TNFa blockers but why then did Enbrel do worse than placebo in trials and it's a TNFa blocker?

Now, I absolutely believe that your bacteria play a role.  But ponder the idea that the bacteria might be taking up more than their fair share of various vitamins and minerals and other nutrients OR not producing them or synthesizing them like they usually do and what might result.  The result can have cascading affects, and those affects would be different in various phenotypes.  Throw enteral nutrition into the fray and the body gets all its nutrients and the bacteria get their nutrients and everyone is happy.  Go on the SCD and don't provide food to a specific type of bacteria that out-compete bacteria that synthesize vitamin B2 which is causing iron deficiency anemia which is causing which is causing which is causing (so many cascading affects)... and once they're no longer an overgrowth and you're getting vitamin B2 again, then homeostasis returns.  This is just one of a million potential reasons why diet can help or hinder.


----------



## ZM1019

I think everyone has to do a lot of research for themselves.  Some things she says are legal, I could never eat because they do contain starch that is an amylose starch.  Some of those foods are low starch, not no starch.  Some she says are illegal are fine with my body which couldn't care less about milk but that would probably do most of you in.  I don't believe any diet, including the diets given by Crohn's specialists, are one size fits all.  I could never be on the diet that most of you have been given.  It would put me in the hospital in three days.

Also, inflammation is a symptom of a problem that is not just different for the different diseases, but different in the different people within those diseases.  If that wasn't true everyone could be on the same medication for the same length of time to get it under control.  So that is why some people won't respond to diet alone.  I don't believe that inflammation can't go away in anyone with diet alone any more than I believe that inflammation will go away for everyone with diet alone.  What I do believe is everyone is different and there are no cookie cutter solutions.

I also believe that the drugs used now are treating symptoms and not the underlying cause and that not a lot is known about those drugs or how they work.  If you read about those drugs, none of them purport to be effective for everyone with Crohn's.  Lowering TNF works in some but not in others and some go into remission for years and others don't.  It's the same thing.  This is a disease in its research infancy.  In 20 years it is very possible they won't use TNF inhibitors at all.  It's very possible that they will be in the exact same place as researchers are with migraines where they keep realizing that they thought they knew the ultimate causal factor but in fact they were only treating a symptom.  Once they treat the symptom successfully, they find out there is something behind that and something behind that and so on.  This is the case with most research for illnesses or abnormal functions.  

I'm more of the opinion of this is what we know right now.  Nothing has been proven beyond a shadow of a doubt.  It is imperfect and not the end of the story.  All we as sufferers can do is find out as much as we can, talk to our doctors as much as we can and make the best decisions for ourselves based on as much as we can.


----------



## ZM1019

David said:


> The result can have cascading affects, and those affects would be different in various phenotypes.



This is something my GI pointed out when I first saw her and one of the reasons I like her.  She gave me a list of tests she was going to do and said more were coming.  Then, she told me that one problem can lead to another and another in a cascading effect.  She said that she needed to uncover all of the problems, assess them and then determine in what order she needed to treat them and what she needed to use.  She said this was important because if she did not treat them in the correct order with the correct things, she could end up causing other problems.  She told me that if I had multiple problems, it was all about the balancing act but that we would figure it out and come up with a plan.  It sounded very logical to me.


----------



## David

I love that your GI sat down with you and explained something like that   If she is on the gulf coast, PM me as I need a new GI


----------



## acemagic

Wow, there's a lot of good discussion here. First and foremost:



David said:


> I was going to say, "Nobody is claiming to cure their Crohn's though" and then looked at the thread title   I don't believe diet is going to cure Crohn's, but I believe it can lead to remission.  Or even better, diet along with other treatments can lead to remission and help you stay there.


Yeah I'm sorry about that. I actually re-thought about that about a week ago. It really should have read "This is how I'm going to put my Crohn's into remission"

To be honest, I don't know for sure if diet is going to make a lick of difference. As you mentioned, everyone is different, and there are no real solutions available. But most of us are also grasping at straws and the general consensus is that diet seems to matter. I just don't personally feel that we should sit back idly and assume that just because it hasn't been proven that diet plays a factor in treatment of the disease, that we shouldn't try to take a look at the broken evidence that does exist and take our best shot at it. As someone mentioned earlier, there's no money in that, so no one is going to do the research. If I come to you and ask you for 5 million dollars to conduct a study on diet, but if it doesn't pan out you're going to lose your 5 million, but if it DOES pan out, you'll help a lot of people, but you're still going to lose 5 million dollars....well...there's not a lot of people who would jump on that opportunity.

From what I've read, SCD has had a good deal of success, but doesn't work for everyone. Paleo seems to have a slightly better rate of success (again, just from what i've read). Does it work 100% of the time? Absolutely not. Do we know why it works? Nope. But there are thousands of people on this diet and the testimonials I have been reading (from Hugh and Beach and others on this forum and other forums) lead me to believe that my best bet for healing is to remove a lot of the junk in my diet.

Also, regarding meds, I'm just not a big fan. I've been med free for years, but I've also had a poor diet. I've tried almost every medication available to us and have always felt that the side effects were worse than the disease. Plus, many of the meds offered to us have long-term side effects (like "Can Cause Cancer") and with our already increased risk at developing bowel cancer, I'm not too interested to go on them. So yes, maybe it's really dumb, but I've been down that road. I ignored diet for 14 years and took all my meds like a good boy. It got me 3 resections within 14 years and my gall bladder and appendix out. I'm a results oriented person, and I wasn't getting the results I wanted. Cause and effect.

As someone mentioned...we know very little about the disease, but everyone wants to get better. Based on the information available to us and from everything I've read and people I've talked to and my personal experiences, this is the path I'm going on (diet and supplements, herbs etc). If it bombs, so be it. Next surgery, I'll try something else, but for the time being, it's my best odds at achieving REMISSION 

-Adam


----------



## David

I think what you're trying is wonderful Adam 

Would you like me to edit the thread title for you?


----------



## hugh

this link sums it up for me........
http://www.swaraj.org/shikshantar/swimology.htm.
less talk, more healing:lol2:


----------



## acemagic

David said:


> I think what you're trying is wonderful Adam
> 
> Would you like me to edit the thread title for you?


Haha,

Naw thats alright. Thanks David! If we change it now, it'll probably just confuse people who have been following it.

-Adam


----------



## acemagic

Hey everyone,

Day 19 on Paleo.

I haven't gained anymore weight unfortunately, I'm still sitting at 124. I saw my Naturopath yesterday (who seems to be very good) and when I mentioned I was on paleo, she wholehartedly agreed that it's a very good place to be, regardless if you have Crohn's or not. 

She said that my gut is still probably leaky and potentially inflamed / still healing from surgery, so the first step is to heal the gut so it can absorb nutrients better, and the weight gain will come after that. So I'm taking L-Glutamine for the leaky gut and strong probiotics. I was tested for Candida before my surgery and there was a slightly higher than normal amount, so we're going to try a mild cleanse in a week's time. She's also been treating me with NAET (which I think is totally hokey and crazy, but I'm willing to try everything and she says she's had good success with it).

Energy levels seem to be a bit down today, and the cramps that I get before a BM are pretty intense. I'm thinking I may have jumped onto "nuts" too quickly. I feel like I'm pooping razor blades. Other than that and occasional copious amounts of gas, I'm pain free. No cramping every few minutes. I think I can safely attribute that to the surgery, however, not necessarily the diet.

I'll be trying out the new juicer tonight too! It arrived yesterday!

-Adam


----------



## CLynn

I love this forum! And my friends on it!  Love how we can discuss and debate, all of it for our own health's sake. And just when my brain goes into overload, in comes Hugh to make me laugh out loud. Thanks everyone!


----------



## hugh

acemagic said:


> Hey everyone,
> 
> Day 19 on Paleo.
> I'm thinking I may have jumped onto "nuts" too quickly. I feel like I'm pooping razor blades.
> 
> -Adam


I'd stay away from nuts for a while longer, they can irritate, 
In a while try nut flour as you get to trial nuts without the abrasiveness of chewed up nuts, also soaking in water overnight might help but you don't need them on paleo
(i'll try to post some paleo nut muffin recipes soon)

I'd be interested in which 'version' of paleo you are flowing (low fat,high fat etc).
A good resource......
Paleo Principles – Blog Posts You Should Read
http://www.paleoplan.com/resources/paleo-principles-blog-posts-you-should-read/

This might be of interest
Paleo Diet Myths http://www.youtube.com/watch?v=UmmUlgckXF4
 - i'd still avoid nightshades (because of glycoalcaloids?)


----------



## LaLaNapa

Hugh - You've really been a help to those of us who are trying to Paleo-ize our diets.  thanks for all the links.  I've read so many different Paleo bloggers - some say yes this, no that; others say no this, yes that.  Then I found this link (through one of your links):

http://chriskresser.com/beyond-paleo-moving-from-a-paleo-diet-to-a-paleo-template

I like the idea of making it a template.  Especially with Crohn's, everyone has their individual triggers and tolerances, so I liked having more generalized guidelines than a list of "do" and "don't" eat.

I've been working on keeping to a Paleo-style diet for a little more than 10 days, and overall have so much more energy.  I was primarily vegetarian before, and I didn't realize how much damage I was doing with raw veg and whole grains (which my brain said were good) and no protein (which I have found my gut really likes).  I think the glutamine in the protein is helping me.  My GI doc even said "you look good" yesterday...but he wasn't so happy to hear that I wasn't taking the meds he tried me on.  When I started trying to talk to him about how I thought my diet changes were helping, he literally stood up and started walking toward the door (!).  Well, he's referring me to another Dr now.  Guess I am too radical!


----------



## mizgarnet

Just to clarify a point- Quinoa is not a grain.  It is actually a seed but it's appearance is grain like.  Quinoa has more Omega 3 than Flax.  Also, the problem with grains is the processing.   Look at wheat in the field and then at bleached flour.  I personally do my best to stay away from grains but if you must eat them, go for the least processed ones.

Adam, I think you are on the right track.  Make sure you get enough healthy oils.  Ease into ab exercises!  Go slow with those.  Learned my lesson on that one.  Stress relief is essential.  I tell people that diet, stress relief, and exercise are the 3 keys to staying in remission.  

Good luck and good health!
Wendy


----------



## ZM1019

Ack Quinoa.  Talk about feeling like you ate razor blades!  

Sorry.  I know most people can eat it but someone talked me into that once I had three days of pain so bad I couldn't sleep or concentrate.  I won't even eat food that has been prepared any where around that because it gets into everything.  Bad memories.


----------



## hugh

Quinoa contains saponins, which can damage the gut lining

@LaLaNapa - yup , i'm heading towards Archivore and Perfect Health diet, almost identical but arrived at from different thinking, I call it paleo based


----------



## Beach

Glad I'm not the only one that has trouble with nuts!  It isn't particularly paleo, but I ate some spicy cashews the other day, seemed like a tasty treat at the time, but last night and this morning .... lets just say I'll be laying off nuts, cashews in particular, for a good long awhile.  That wasn't any fun.  And once that was over I got to workout at the gym!  It was a leg day, which has the pleasant effect of hitting the stomach muscles also.  I'm exhausted.  

I can remember the days where I would anxiously check to see where my weight was.  Any movement upwards was exciting.  And I would wear as many cloths as possible, along with keys, shoes and occasionally a jacket.  Anything to make myself heavier!  I'm glad the paleo or primal diet helped me to put on some weight and muscle.  I'm hoping the same happens for you.  

No fun about the sharp pains when using the toilet.  Along with the operation, I recall earlier in the thread a mention about normal bowel movements after taking a new drug.  If that is the case, maybe a stool softener will be helpful.  If I might suggest, the mineral magnesium has anti inflammatory effects, and softens stools.  Possibly it could be helpful.  Drinking water high in magnesium I guess would even be considered paleo.  When our ancestors obtained drinking water from stream, it was higher in minerals, magnesium in particular.  Along those lines, recall this article:

"Magnesium and you-Part I"

http://blog.trackyourplaque.com/2009/05/magnesium-and-you-part-i.html

snippet from the article:



> If this were 10,000 B.C., you’d get your drinking water from streams, rivers, and lakes, all rich in mineral content. Humans became reliant on obtaining a considerable proportion of daily mineral needs from natural water sources.
> 
> 21st century: We obtain drinking water from a spigot or plastic bottle. Pesticides and other chemicals seep into the water supply. Municipal water purification facilities have intensified water purification in most communities to remove contaminants like lead, pesticide residues, and nitrates. (For a really neat listing of the water quality of various cities, the University of Cincinnati makes this data available.)
> 
> But intensive water treatment also removes minerals like calcium and magnesium.
> 
> Many people have added water filters or purifiers to their homes,, like reverse osmosis and distillation, that are efficient at extracting any remaining minerals, converting “hard” into “soft” water. In fact, manufacturers of such devices boast of their power to yield pure water free of any “contaminant,” minerals like magnesium included. The magnesium content of water after passing through most commercial filters is zero.
> 
> Modern enthusiasm for bottled water has compounded the problem. Americans consumed a lot of bottled water, nearly 8 billion gallons last year. In the U.S., nearly all bottled water has little or no magnesium.
> 
> The result is that we can no longer rely on drinking water to provide magnesium. The Recommended Daily Allowance (RDA)—the amount required to prevent severe deficiency—for magnesium is 420 mg per day for men, 320 mg/day for women....


----------



## acemagic

hugh said:


> I'd stay away from nuts for a while longer, they can irritate,
> In a while try nut flour as you get to trial nuts without the abrasiveness of chewed up nuts, also soaking in water overnight might help but you don't need them on paleo
> (i'll try to post some paleo nut muffin recipes soon)
> 
> I'd be interested in which 'version' of paleo you are flowing (low fat,high fat etc).
> A good resource......
> Paleo Principles – Blog Posts You Should Read
> http://www.paleoplan.com/resources/paleo-principles-blog-posts-you-should-read/
> 
> This might be of interest
> Paleo Diet Myths http://www.youtube.com/watch?v=UmmUlgckXF4
> - i'd still avoid nightshades (because of glycoalcaloids?)


Hugh,

As LaLanapa said, THANK YOU very much for your helpful posts. They're always great. 

Matter of fact, thanks to EVERYONE who is helping me along (Beach, ZM, David & Kiny just to name a few!). This is exactly what I was hoping for.

In answer to your question, I'm not following a particular version that I'm aware of. I'm just sticking to fruits, veggies, nuts (but i'll try and reduce these based on your advice) and meats. No dairy, no grains, no refined sugar.

That being said, I rarely have the time to cook, so my Paleo is based on a lot of eating out. Lots of Vietnamese food (meat and veggies -- no noodles), eggs and bacon for breakfast, and some fruit, and for dinner, I'll usually BBQ a steak or chicken and steam some asparagus or broccoli. If I'm eating out for dinner, I'll usually eat at Nando's Chicken.

There's probably a "cheat" in there (the coleslaw has a mayo style sauce, but very minimal, and I eat the occasional Larabar -- not one with peanuts) and I occasionally have a glass of Moscato wine. Overall though, my diet is significantly better than the fried foods, potatoes and noodles diet I was on before. Matter of fact, its VASTLY different. I think I'm on the right track at the very least, even if I can't go forage for things myself 

-Adam


----------



## acemagic

LaLaNapa said:


> I was primarily vegetarian before, and I didn't realize how much damage I was doing with raw veg and whole grains (which my brain said were good) and no protein (which I have found my gut really likes).


Hey LaLanapa,

What harm did raw veggies do to you? Can you elaborate a bit?

-Adam


----------



## acemagic

Beach said:


> I can remember the days where I would anxiously check to see where my weight was.  Any movement upwards was exciting.  And I would wear as many cloths as possible, along with keys, shoes and occasionally a jacket.  Anything to make myself heavier!  I'm glad the paleo or primal diet helped me to put on some weight and muscle.  I'm hoping the same happens for you.
> 
> No fun about the sharp pains when using the toilet.  Along with the operation, I recall earlier in the thread a mention about normal bowel movements after taking a new drug.  If that is the case, maybe a stool softener will be helpful.  If I might suggest, the mineral magnesium has anti inflammatory effects, and softens stools.  Possibly it could be helpful.  Drinking water high in magnesium I guess would even be considered paleo.  When our ancestors obtained drinking water from stream, it was higher in minerals, magnesium in particular.  Along those lines, recall this article:


Hey Beach,

Haha I can totally relate. I used to weigh myself with all my clothes on and tons of stuff in my pockets too....until my MOTHER found out and guilt tripped me into doing otherwise. Now I have to make sure I weigh myself in the morning with nothing but my boxers on so I can ensure I'm the most depressed possible 

The drug you're referring to is Cholestyramine. It's actually a stool BULKER. Without drugs, I end up going to the bathroom 12+ times a day, and it's always loose/watery. So the doc recommended this as a way to reduce that effect. But it might be working a little too well. Luckily, it's in powder form and the doc told me to experiment with it until I find a happy medium. I'm going to try and reduce the nuts in my diet and see how things are pain-wise. After I determine that, I'll play around with the Cholestyramine a bit more.

And in reference to magnesium, yup! I take 2 Calc/Mags every morning  Along with Vitamin D!

-Adam


----------



## LaLaNapa

Well, nearly every time I ate a salad or Subway Veggie sandwich (both my former faves) it would feel like a weedwacker was going through my gut.  In my rationalization I thought, "well at least it's healthy food doing that, not cookies and donuts".  But I've been doing a lot more research and have found that especially during a flare it's best to have the veggies cooked to break them down a bit before ingesting, so I've been sticking to that.  I recall the the SCD diet started that way too, even pureeing the carrots in soup and not eating them cooked.


----------



## acemagic

Gotcha.

Yeah, in a flare, I would definitely agree that raw foods hurt like a b*tch and should be avoided. But veggies are good for you and if you're not in a flare and can tolerate them, I personally think they're a good idea.


----------



## LaLaNapa

That's all true.  I think I just didn't realize I was in a flare.  I'm coming to believe that I have a low, smoldering kind of inflammation.  As my diet deteriorated I gradually had more and more symptoms.  So now that I've backed off on all of that I can see that indeed the inflammation was (is) active.  

But I am so grateful that you started this thread and wrote about the Paleo Diet.  I was thinking about restarting SCD but it was really difficult, and I didn't agree with everything she had allowed (saccharin?!).   The Paleo seems manageable, but probably because I understand the principles better.  And I love coconut - I've made coconut flour cookies twice.  

You should try some home cooking   Of course, I just like to cook it myself because I like the control over it.  (Control freak.)  I panic now when we will be eating out of the house and don't know how the food is being prepared.  But we used to eat out all of the time so I guess all that money in the dining budget goes in to groceries now.  It's a little more expensive being a carnivore than a vegetarian!


----------



## pb

Hope you don't mind me chiming in...it's late so please bear with me...I'd like to throw a few things out there and try to make as much sense as possible....give some thought (keeping in mind I have not read all the replies in this very interesting post--it's late--) so forgive me if I repeat anything that's already been discussed.

Most of this is according to research so I won't keep repeating it with each "topic/theory" 

Researchers have discovered bacterias that differ between CDers and Ucers that non-IBders don't have and these bacterias even differ some between the CDers and UCers which play a huge role in IBD and how the immune system attacks otherwise harmless bacteria(s).

There are at least 9 different gene clusters that contribute to the development of IBD and define the severity and behaviour of the disease over time.  Some of these genes encode factors involved in recognition and defense against bacteria.  Mutations in immune response genes may adversely affect how the immune system reacts to harmless bacteria and this probably contributes to the development of IBD.  Also why IBD is likely so individualistic because it's coded into your genes as to how it will behave and the severity as well.

Cigarette smoking is one of the strongest known envrionmental risk factors (trigger) for the development of Crohn's disease.  There's even evidence that second-hand smoke may increase the risk of children developing IBD (either UC or CD).  This does not mean that smoking/second-hand smoke is necessarily every CDers trigger either...Birth control pills are also strongly suspected as being an envrionmental trigger for IBD.

Dr. Kathy Siminovich and her team of IBD researchers have identified one of the genes that predispose development of crohn's disease.  The gene is located on chromosome 5 and normally produces a protein that sits on the cell surface and controls movement of specific substances in and out of the cell.  When altered (scratched), the gene produces a protein that functions improperly, allowing toxins increased entry into the cell.  This gene alteration is primarily observed in crohn's disease.

Hormones play a huge role in IBD, often the reason why most women find they have "mini flares" or increased flare symptoms just before/during/just after their menstral cycle.  Also why some women may go into remisson/stay the same/get worse with their disease during pregnancy.

Diet has not been completely ruled out as a "trigger" for IBD....it may not necessarily be the type of food itself, it may be the types of bacterias that are on/in foods that are the issue.

There are 5 subtypes of crohn's disease;

The five types of Crohn's disease with their symptoms are:

-Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon. People who have ileocolitis experience considerable weight loss, diarrhea, and cramping or pain in the middle or lower right part of the abdomen.

-Ileitis: This type of Crohn's disease affects the ileum. Symptoms are the same as those for ileocolitis. In addition, fistulas, or inflammatory abscesses, may form in the lower right section of the abdomen.

-Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum, which is the first part of the small intestine. People with this type of Crohn's disease suffer nausea, weight loss, and loss of appetite. In addition, if the narrow segments of bowel are obstructed, they experience vomiting.

-Jejunoileitis: This form of the disease affects the jejunum, which is the upper half of the small intestine. It causes areas of inflammation. Symptoms include cramps after meals, the formation of fistulas, diarrhea, and abdominal pain that can become intense.

-Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon. Symptoms include skin lesions, joint pains, diarrhea, rectal bleeding, and the formation of ulcers, fistulas, and abscesses around the anus.
There can be overlap between these types of Crohn's disease. Some people have more than one area of the digestive tract affected.

With respect to there being 5 subtypes, this adds to making crohn's very individual, which is likely why what works for some (diet, meds, etc) may not work for all.

MAP is also strongly suspected to play a role in IBD, it's found in beef, water and soil.

That's it for now


----------



## b456

GAPS diet is similar to Paleo but incorporates healing foods such as fermented milk kefir, yogurt, fermented vegetables and such.  I cannot tollerate milk but through the fermentation process, fefir is very easy for me to digest.  I started this diet months ago and thought this diet was going to kill me for two weeks.  I had a die off reaction of bad bacteria but then my crohns symptoms began to subside for the first time I can remember.  Then I felt so good, that I went back to normal eating. (stupid)

Now, I am convinced I must go back to the diet-but the intro diet.  The book that outlines the diet and gives good reason for it is The Gut and Psychology Syndrome.

Definately worth a read.


----------



## b456

Gut & Psychology Syndrome 
by Dr. Campbell-McBride

Take a look--I'm not selling anything, but I really believe there is something to it. 

I believe that I've developed additional health problems from years of Humira.  Time to look at something a little less traditional (with doctor supervision of course).


----------



## Ihurt

I have not been dx yet, but I have alot of other health issues and now am having intestinal/gut issues for the last year.

I do not smoke nor drink alcohol, never did. I was a pretty healthy eater and lived a pretty healthy lifestyle. But I got sick! I got sick 9 years ago with a virus that inflammed why whole throat and upper esophagus. I had extreme burning pain to the point where I was in tears. it lasted for about a year and half. I could not even talk the pain was so bad. No doctor ( not even mayo clinic) could figure out what was wrong. IT was all down hill from there. Coencidentally, I had gotte a flu shot about two weeks before all this happened. Was it a immune system reaction to the flu shot?? There is a good possibility, but I will never know. 

One thing for sure, I really do not think smoking causes crohns disease or other diseases, there are just toooo many people out there who smoke, drink, abuse themselves and they are perfectly healthy! It has alot to do with genetics and how each individuals immune system reacts to different elements that it is exposed to.  I also have interstitial cystitis. What is curious is that with IC(interstitial cystitis), some develop ulcers in the bladder and the bladder is very inflammed. Yet, they do not offer steriods or immunosupressents to treat IC. I think IC, crohns disease, and alot of these orphan diseases are all an overdrive of the inflammatory process going on in the body. Whether it was caused by genetics, a drug, environment, who knows. But it is definitely an individual thing. You cannot really blame it on smoking, or alcohol or living an unhealthy lifestyle, otherwise there would be alot more people running around sick with these various diseases. 

I do believe it may be a bacteria that in certain people, the body just reacts negatively to. For example, you take 20 people that have this bacteria in them. Well 17 of them have no issues at all, their bodies live in harmony with this bacteria, where 3 of these people the body looks at this bacteria as an invader and attacks it with a vengence. As we all know, you cannot kill these bacteria, you can kill some of them, but not all of them so the immune system just keeps attacking relentlessly causing damage. This is of course just a theory, but it makes sense. 

It all depends on the person, their genetic makeup, and their immune system. They have come up with a drug that can stop AIDS now. I was watching a documentary on it. A man who had full blown AIDS was on his death bed. Well they started giving him this trial drug that is not yet on the market and he has been on it for 10 years. He is the picture of health now. The way they were explaining it was that certain people have an extra chromosone in their DNA that will not allow certain diseases to attack them, so they can never get AIDS, crohns, MS, or alot of these issues that some people get. They are trying to make a drug that can replicate this chromosone that some people have sort of speak, like this drug they have people on with AIDS.  Not sure when the drug will become available, but they said it would be out in the not long off future.  I wish I could remember what the documentary was called, I think I seen it on discovery health channel a couple months back. 

Anyhow, these diseases are so complex and I think there are alot of variables to how a person comes down with these diseases. Bottom line is that it sucks for those who are dealing with these debilatating diseases and I hope that the researchers will come up with something that will help us all!


----------



## pb

Ihurt,

Researchers have found a definite link to smoking/second-hand smoke to crohn's disease, that does not mean it's every crohnies trigger.  Part of the genetics is smoking being able to trigger CD for some patients.  For people that smoke and have not gotten CD from it, just means that they are not genetically predisposed to it is all, doesn't mean that it can't be a trigger (known trigger according to researchers) for those that are predisposed to gettin it and smoking/second-hand smoke just happens to be their trigger.

There are many possible triggers that researchers are looking into, smoking just happens to be known one (again, not necessarily for every CDer)...the flip side is smoking for some UCers can be beneficial since they discovered that the carbon monoxide from smoking soothes inflammation in the colon.  Lot's of people that end up with UC often had recently quit smoking, researchers figure that it was the smoking that kept their UC in "hibernation".  Some even go back to smoking and are able to find remission.

There's so much more that needs to be learned, and I agree that I hope they will find something that helps us all get our lives back.


----------



## kiny

Ihurt said:


> One thing for sure, I really do not think smoking causes crohns disease or other diseases, there are just toooo many people out there who smoke, drink, abuse themselves and they are perfectly healthy!


_
"plenty of people fall from stairs and are fine, so falling from stairs does not cause broken bones, fragile bones does"
_
Something doesn't have to be the cause to have an impact on a disease, often you just need a trigger. Many factors influence crohn, and limiting smoking and second-hand smoke is the first thing you can do to help yourself, plenty of studies have shown a relationship, not to mention it's good for your overall health as well.



Ihurt said:


> It has alot to do with genetics and how each individuals immune system reacts to different elements that it is exposed to.


It's another small part of the puzzle together with bacteria you mentioned I think. There are exact twins where one of them has crohn and the other is completely fine, the genetic part is a predisposition, and for some reason, whatever we did, or ate, or were exposed to, triggered it in one twin and not in the other. There's a case I read and the twins were seperated at birth, they both lived miles apart, and both got crohn, but one got it 6 years later than the other, some don't get it at all.

_"Thomson et al traced 144 twin pairs with inflammatory bowel disease from 16 000 members of the National Association for Colitis and Crohn’s Disease.10 Six of 38 monozygotic twins with ulcerative colitis and five of 25 with Crohn’s disease were concordant for the disease. The relative risk for an unaffected identical twin developing inflammatory bowel disease compared with that for a non-identical twin was 3.49 (p=0.03). *Once again, in the majority of cases only one twin had developed overt inflammatory bowel disease*; however, there was no pair of twins with mixed inflammatory bowel disease. These studies and case reports all indicate a higher concordance for inflammatory bowel disease in monozygotic than dizygotic twins suggesting that genetic factors rather than environmental factors play the primary role in disease pathogenesis. "_


----------



## glory_h

Hi there!

I've been following this thread with great interest for some time now. I am not sure that diet causes Crohn's, but I definitely believe that it can have a huge roll in controlling it. Earlier on this forum I was interested in a raw foods diet - but to paraphrase David's doctor, sometimes things work in practice but not in theory - and I think this works vice versa as well, sometimes things might make sense in theory but not in practice. For me, a raw diet was bad news! And I presume for a lot of other Crohn's sufferers. But my gut is happy with meat and cooked veggies, so just by my own food experience, I've already started leaning towards a paleo diet anyway.

I wanted to thank everyone for this thread, and especially Adam for starting it and reporting back faithfully about your experience with this paleo trial. It's so interesting, and informative. And thanks to all who have posted links for further information. 

pb, I had a question about something you just posted:



pb said:


> Birth control pills are also strongly suspected as being an environmental trigger for IBD.


I would love to read up on this, do you have any links or books or anything that I should be looking into? When thinking back on when my Crohn's started acting up again recently, it coincides with starting on birth control. I'd love to learn more about this "coincidence".

Thanks all!


----------



## pb

Hi glory,

Here are some links that you requested....

http://health.usnews.com/health-new...irth-control-pills-hrt-tied-to-digestive-ills

http://www.womens-health.co.uk/pill-ibd.html  (I like this link since it notes that smoking itself is an independant risk factor for the development of crohn's...which someone above was kinda disputing, even though it wasn't my opinion, I was simply sharing what researchers have discovered).


----------



## ZM1019

Interesting article on the effects of artificial sweetners in the news today: http://todayhealth.today.msnbc.msn.com/_news/2012/07/05/12548199-the-strange-reason-diet-soda-makes-you-fat?lite

Please read the entire article for gut flora AND inflammation impacts.  While I'm not going to tell anyone what I think completely causes CD or could cure it, I can read things like this and come to the conclusion for myself that diet definitely can (and probably does for most of us) play a role in it.   I for one have had a very healthy diet for about 25 years, but there are still things like artificial sweetners that are definitely prevalent in my life.  I drink a lot of coffee and diet coke and have for years and years.  You can bet that after reading this, they are not going to be in my future.  My risk factors for all of the medicines used to treat this are very high, so I have to take every other avenue available to get this under control and artificial sweetners happen to be something I can control.

__________________________________________________________________________

I've also been doing something else and wondered if anyone else does this?

There are several different studies in different areas where they are using the plasticity of the brain and behaviorial modification/imaging techniques to retrain the mind when it goes haywire.  Examples of this would be high functioning autism, amputees having phantom pain and PTSD nightmares that cause sleep disruption.  In all of those cases there has been just as much success using those techniques as medications that were non-specific and had a whole host of side effects.

Now that being the case, it stands to reason that if our brains can learn to overreact to certain bacteria and create inflammatory responses then they can learn not to do that.  Given my risks with the medications, I decided what is the harm in trying?  I'm not on medication so there is no confusion as to what is actually helping at this point.  So, I decided to try it.  A week ago I began actively telling my brain that my digestive system was not under attack, in no danger and that it did not need to create inflammation to defend it.  I've seen what my gut looks like, so I visualize it when I do this.  I did this exercise for about 15 min at a time three times a day.  At first the pain and inflammation would go down after about 15 min (I'm lucky in that my inflammation is so bad you can physically see it happen within minutes of my eating anything that triggers it - my doctor confirmed this when she checked me), but it eventually returned.  After the third day, the inflammation went away entirely and it hasn't been back.  This is the first time in 2 years I haven't had pain or inflammation.  Previously it was constant and relentless.

I go back to the doctor tomorrow so we'll see what she can confirm or not.  I'm very interested to see what she says.  I'm taking what I have on those other studies with me for the discussion.  For me, I have to look at alternatives, but I'm wondering - have any of you tried a concerted effort at doing it?


----------



## JohnnyRottenAppleseed

i lost 20lbs over 2 months and was only eating one meal a day, passing blood and puss 10-15 day. After 10 days of Cipro/Flagyl, i am eating whatever i want and have solid bowel movements, no blood, regular in the AM like the old days. It's been a month and i'm still symptom free. I have a full physical later this month with blood work as well as a colonoscopy. I hope the inflammation has gone away along with my symptoms. I've been eating whatever i want but mostly healthy organic non gmo and striving for more plants and less meat.


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## acemagic

Day 25 on paleo:

It's been 6 days since I last reported anything, simply because... there's not much to report! Weight has stayed about the same (I'm 126 now) and pain has still been pretty minimal. It's very tough to ascertain whether or not my relief is due to the surgery or the diet, which is why I think we'd all love to hear from some of your other folks who might be trying out a diet similar to this and seen dramatic change OR has just gone through surgery and seen dramatic change.

The biggest change for me has been bowel movements. I've gone...jeez... I think only twice today, and it's 4:16pm. Pre-op, I would have gone about 7 times by now, with another 4 or 5 by the time I go to bed. Because I've changed 2 variables (diet and surgery), I'm trying to think back to my LAST surgery (in 2006) when my diet DIDN'T change, and whether or not I was still going to the bathroom many times a day right after the operation. I think I was still going a LOT. I'm pretty sure that I've been a consistently frequent pooper for the last 6 years. Anyone else have experience with bowel frequency change after a change in diet or surgery?

And I actually stopped the cholestyramine for the time being. I actually don't feel I need it right now. I was starting to get "too" blocked up. I might re-introduce at a later date. We'll see.

I'm still sticking to as strict of a diet as possible for 6 more days. Even then, I'm not sure if I'm going to deviate, simply out of fear  I'm going away in early August for 2 weeks and will be camping for half of that, so I might have to deviate a bit, out of sheer necessity. I'm pretty sure my girlfriend is sick of eating Nando's and Pho for dinner too.

As far as the sharp pains? They've mostly subsided for the last few days after going off nuts. I caved yesterday, however because I've been craving crunchy/salty like crazy. But no pains today thus far.

Gas....gas has been SMELLLLLY. And yesterday I felt bloaty. It could still have been a gas producing food (cauliflower, cabbage, brocolli, etc), or maybe candida. Or something else altogether. But tomorrow morning I'm starting a mild candida cleanse after I see my naturopath. Hopefully that will help things along in that department.

Funny side story: I was doing computer work for a guy at my company (one of the higher up bosses in a company of 1000+ people) and I had to be on his computer for an hour. He told me he was going for lunch. He left the room and about 10 minutes later I let a terribly smelly fart go, thinking I had a safety net of 50 more minutes. Not even TEN SECONDS later, he walks back into the room and starts chatting with me. I'm sitting there, sweating and just praying his nose lost all feeling in a terrible hiking accident when he was younger, but he left fairly quickly thereafter. I'm pretty sure he knew. So.... that was awesome.



glory_h said:


> Hi there!
> 
> I wanted to thank everyone for this thread, and especially Adam for starting it and reporting back faithfully about your experience with this paleo trial.


You're very very welcome. I've been on this site for years on and off, gleaning bits of information here and there. I'm glad I can finally give something back.

-Adam


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## ZM1019

Glad you are feeling better whatever the reason.


----------



## Beach

:biggrin:  Sounds like the bosses office received the special IT service.  Before I began eating paleo I used to mention to others that, "heaven is a dry fart."  It's an old saying Vietnam veterans had as when serving in Asia diarrhea was a big problem for most of the troops.  When my father returned from Vietnam he weighed around 130lbs, if I remember correctly, down considerably from where he had been the year before.  

No more need to say that phrase.  I'm so glad those awful days are behind me.  

I've lost some weight here of late.  I was surprised to see myself recently weighing 179lbs, down from around 185.  I'm guessing the hot weather is the cause.  Not as much desire to eat of late.


----------



## pb

Hey ace, I just noticed you're in Calgary...I was born and raised there, moved just outside of the city shortly after the boom cuz the traffic was just too much for me to handle...are you also born and raised in Calgary?


----------



## acemagic

ZM1019 said:


> A week ago I began actively telling my brain that my digestive system was not under attack, in no danger and that it did not need to create inflammation to defend it.  I've seen what my gut looks like, so I visualize it when I do this.  I did this exercise for about 15 min at a time three times a day.  At first the pain and inflammation would go down after about 15 min (I'm lucky in that my inflammation is so bad you can physically see it happen within minutes of my eating anything that triggers it - my doctor confirmed this when she checked me), but it eventually returned.  After the third day, the inflammation went away entirely and it hasn't been back.  This is the first time in 2 years I haven't had pain or inflammation.  Previously it was constant and relentless.
> 
> I go back to the doctor tomorrow so we'll see what she can confirm or not.  I'm very interested to see what she says.  I'm taking what I have on those other studies with me for the discussion.  For me, I have to look at alternatives, but I'm wondering - have any of you tried a concerted effort at doing it?



Hey ZM,

I meant to comment on this when you first posted it. Sorry, it slipped my mind. While I don't think that it's quite as simple as saying "I'm fine" to your body and having your crohn's go away, I do definitely think there is a link to certain kinds of relaxation techniques and healing in the body. Yoga, meditation etc, leads to less stress, and less stress certainly would help with your symptoms. Matter of fact, reducing stress via any technique would probably be beneficial for a whole lot of us. Thanks for bringing it up!


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## acemagic

pb said:


> Hey ace, I just noticed you're in Calgary...I was born and raised there, moved just outside of the city shortly after the boom cuz the traffic was just too much for me to handle...are you also born and raised in Calgary?


Hey PB,

Born, no. Raised, yeah. I was about 10 years old when we moved out here from Montreal, so I'd say I'm definitely Calgarian, being 31 years old now  Whereabouts are you now? Airdrie?


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## acemagic

Day 29 on Paleo:

Weight: 125 lbs

Okay, so..... weight gain on Paleo is hard. I've stopped counting my calories, frankly, because I'm lazy, but I think I need to start up again. I'm probably not getting the caloric intake that I should be getting. Regardless, I feel okay (apart from having to hike my pants up every 5 minutes) and I've started a candida cleanse for 2 weeks. Oh, and I had 1 instance of cheating. I told you I was going to be honest, and I'm sticking to that. I went to see a movie and snuck in some rice crisps. I was told that if you're going to cheat, cheat with rice. Not corn or wheat. And you know... I felt absolutely fine afterward. No ill effects whatsoever, even the next day.

This brought me to my next line of thinking....just how strict do we need to be on these diets? I found a source that said that as long as you're following Paleo 80% of the time, you should be fine, whereas there are other schools of thought that say "eat only grass fed beef jerky, because if the beef ate the grain and then you ate the beef, you may as well be eating the grain"....things like that.

I think I'm going to aim for closer to a 90-95% rule after my 31 days are up. The last thing I want to do is re-introduce potentially troublesome foods and have my body break down again slowly, but surely. And yes, I felt guilty for doing what I did. But they were SOOOOO good. What are your thoughts on cheating? Did I totally butcher the whole process by eating some rice?

-Adam


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## pb

I'm in Chestermere...Airdrie's not my favorite set up, still too populated for my liking and I hate travelling on the QE2...Calgary was a much nicer city back when you moved 21 yrs ago, way to populated and congested now.


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## LaLaNapa

Hi Adam:

So good to hear you are doing well on the diet.  I have been trying to follow it, too, as you may recall.  And I have been doing a lot of reading, and looking a lot of Paleo blogs.  Some of these people, besides looking fantastic, do cheat.  I've heard of a glass of wine on the weekends or some dairy here and there for special occasions.  But then I think, these people don't have IBD.  I ended up having a couple glasses of champagne at an anniversary dinner last week, and some really buttery scallops, and paid for it.  Took me a few days to get over the fatigue and fevers and the D came back.  So, like you, I know I need to adhere closer to the true Paleo diet.  

I think after a good solid 30 days of keeping to it, I'd like to introduce some things I absolutely want to have occasionally (love the Cheddar!) and see how I react.  I think the key is keeping track of what you eat and how you feel and finding the connections.  If you did well with your rice crisps, that's good.  Whether you could do that 2 or 3 days in a row is probably not possible.  It's kind of like what James Scala wrote in his book Eating Right for a Bad Gut - eating smaller portions may allow your gut to tolerate a wider range of foods as it doesn't give it too much to deal with it one time.  

As for me, I know the second glass of champagne is a no-no, and rich food was a no-brainer (I just didn't have a brain at the time).  But I'm saving up my cheat for a winery event later this month.  Kind of building a cheat bank 

Keep it going.  How do you feel overall?  I felt great the first week I did Paleo (but I didn't start out too debilitated, nor did I have a sugar or carb heavy diet).  I just fell off the wagon a bit and need to learn how to plan better to eat throughout the day.


----------



## acemagic

Hey Lala!

Really glad to hear you're sticking to it too  Makes me feel like I'm not alone in this. Overall, I feel pretty good. I just overate at dinner tonight and I feel bloaty, but there's no real "pain" associated with it. Just discomfort. Maybe this is what "full" feels like  It's been so long since I've been full of food and not in real pain, so as gross as I feel, it's not the end of the world.

Im glad to hear your first week went well. From what I read, first weeks are the hardest, and I remember feeling very tired during that first week. I barely had the energy to walk anywhere. Mind you, I was still post op, but it felt like I had taken a step backwards in the healing. I like your idea of re-introducing things, but I have this irrational fear that even though I might feel fine after eating rice crisps, maybe internally, it's doing damage. When my crohn's flares, it's not like I suddenly get a major attack and end up needing surgery in 1 shot. I start getting mild pains here and there, they gradually get worse and worse, and over the course of a year, it gets to the point where I will need surgery. If it takes that long, it's reasonable to conclude that it's a gradual process. So you may not even feel it when you eat something "crohn's causing". If I start to re-introduce, I think I'll have like... 1 rice dish every 2 weeks or so. Just to make sure that if it is somehow causing inflammation unbeknownst to me, I will give it ample time to resolve.

I totally agree with your idea of keeping track of what you ate. I need to get back on that bandwagon. No excuses.

I found this website that has a whole bunch of Paleo legal foods you can buy online if you're a non-cooker such as myself. But careful, it gets expensive pretty fast.
http://paleofoodmall.com/

-Adam


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## LaLaNapa

Awesome resource - thanks!  I'm going to spend some time in that meat snack section!! :ytongue:

I know what you mean about the "slow burn" flare.  I am the same way.  I think I have just tried to learn to be super sensitive to my body's messages.  Like I can feel my eyes getting ever so warm and a couple of joints in my fingers ache.  That's my canary in the coal mine.  But then again, I think that I went so long thinking I was going fine and ended up with a stricture anyway.  I still need to deal with that.  So until I do, I remind myself mentally of how my colon looks and tell myself "don't find against your body, work with it and make it work better".  It's quite a mental transition for me to care for my health, so getting myself completely committed to eating this way is going to be a lengthy process.  Especially when I get depressed about even having IBD...oh those carb cravings come on out!

And one Paleo tip I still need to put in to practice (got if from "Make It Paleo") is throw out or give away all the non-Paleo food.  Well those darn crackers and peanut butter Cheerios are still sitting up there calling out to me.  I'm trying to get my non-IBD husband to eat them, but poor thing has a colonoscopy scheduled tomorrow morning so that means my no-no food is still taunting me.  I need a lot of will power not to eat it while he's recovering tomorrow.:shifty:

But I say :thumright: to you for doing the candida cleanse.  It always sounded so strict to me.  My husband has had problems with candida recently, though, so we might look in to it if other remedies don't work.


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## Snoflayk505

Just came on this site to rave to everyone that they can control their Crohn's with the SCD diet without medications and ran accross your post  I am 30 now, Extreme SEVERE case of Crohn's since 19. I basically lived in the hospital over the last 11 years in and out every month to 3 months for weeks at a time. I finally had an illeostomy placed 2 years ago which makes Crohn's WAY easier to deal with btw lol. Anyways, ran accross SCD diet and decided to give it a whirl cuz my Crohn's was back and it was pissed! The reviews on Amazon for the SCD book(dont need book for diet), Breaking the vicious cycle blew my mind. Almost every single review was a success story. I had to try it.

What people don't realize is you need to slowly introduce your body to the diet. Their is a great website from the diet creator with a legal/illegal food list and instructions on how to do it. 


THERE IS A CURE FOR CROHN"S DISEASE!! (Maybe not for all, but definitely for some) I am one of them, I have been on this diet for 2 months am now symtpom free! I fought through a flare with NO MEDS! NO STEROIDS! Life is good  Excpet for when I ate a piece of chocolate cake and flared for a week. That just gave me assurance that the cure is cutting out all those bacteria breeding foods. I make my own yogurt every week and it gives me amazing little soldiers (Bacteria in the yogurt) to fight any bad bacteria coming my way  I cant believe I can eat real food now! Like fruits and veggies and salads and PEANUTS lol It's amazing. There are SOOO many delicious SCD recipe blogs all over the internet, Including mine I started the other day hehe [URL="foreverscd.blogspot.com"]
I understand this might not work for everyone, but dont we all deserve the chance to try and hope we are one of the people is does work for? It makes sense, it really does. If something like stress can affect our disease then why would we think that food isnt a factor.....Ground Zero, Hello 

I hope this helps someone else find a "cure". Just wanted to share my healing experience  
SCD cuts out all Gluten, Grain, Sugar, Lactose (ferment lactose out of homemade yogurt), starches. There are even certain things in your chicken broth you are eating right now if its not addative, starches and gum free. SO WORTH IT TO AT LEAST TRY.


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## Snoflayk505

AND regarding weight gain. There are TONS upon TONS of delicious SCD recipes of cakes and cookies made with Nut flours and such that have plenty of healthy fats and nutrition to help maintain weight! This morning I made coconut flour donuts for breakfast. They tasted delicious! Just like the real thing. hehe I also made sandwich bread today and a pineapple upside down cake last week lol. I live off cookies and cakes now GUILT and PAIN FREE and am staying at a healthy weight now


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## ZM1019

Snoflayk505, very interested in your experience with coconut flour.  I bought some but have to admit, I have never cooked (I don't even use microwaves or make coffee).  Coconut is a great source of fiber and doesn't bother me at all (thank God because even trace amounts of starch set me off on days of pain).  Anyway, I've been curious about cooking with coconut flour.  I heard it is sweeter and breads are more like cake breads (banana bread, etc).  Curious, did you use Baking Powder because it contains starch, or did you use Baking Soda?  

I do have to question them letting you eat peanuts since they are so high in starch (as are cashews).  Did it say the composition is different and breaks down differently?  A lot of things are their legal list I wouldn't dare touch because they are low starch, not no starch.


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## David

Snoflayk,

I'm really glad you're feeling better.  Please be careful about using the word "cure" though.  Your Crohn's Disease isn't cured   It's controlled.  And please be sure to regularly see a GI so that they can monitor you to see if there might be smoldering inflammation that isn't producing symptoms.  Utilizing tests such as ESR, CRP, fecal lactoferrin or calprotectin, the occasional colonoscopy, etc to keep an eye on things is important in my opinion.  I'm super happy that the SCD is working so well for you though!


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## Snoflayk505

Great Coconut Donuts recipe!

http://comfybelly.com/2010/05/coconut-flour-donuts/#.UABbd_WijOw

I use Baking soda. As for starch content and all that i honestly havent had to do much research on things like that or even have knowledge of it because the legal/illegal list I stick to seems to work perfectly. All of the science in the legal foods allowed are all explained and broken down by the founder of the diet in the book and on the website. So whether it is no starch or low starch, I just follow the list and it keeps me in remission


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## acemagic

Day 33 on Paleo, 126 lbs:

Well, it's been a full month! Here's the recap:

I'm feeling pretty good. I haven't had any cramps since I reported them last, which hopefully means my innards are healing up. I'm still significantly underweight, but I'm hoping that clears up too. I know it's a long term goal, so I'm not rushing anything. I'll still continue to report back every once in a while, but I'll stop boring all of you with an update every couple of days.

Paleo hasn't been as hard as I thought it would be. I'm definitely not as strict as some of the people on the diet (I'm sure I've taken in some sugar/corn starches in some sauces), and I had rice crackers on 1 day, but I'd say I've been about 99% faithful to the diet. I love fresh fruit and raw veggies, so eating that is no problem. I'm also juicing them. Eggs and bacon every morning is totally fine by me, and some Vietnamese Pho for lunch or dinner... Well it's just about my favorite food anyways!

Snacks were the hardest. I've finally found a decent rotation of raisins, pistachios, Larabars, fresh fruit (grapes and cherries), Tanka bars, Sun-rype bars, Funky Monkey fruit snacks and beef jerky to satisfy my intense snack cravings between meals.

Supplements in 1 day: 
Candida cleansing pills - 4 of them per day (for 2 weeks)
Calcium/Vitamin D pills
Extra 1000 IU Vitamin D
A tablespoon of Fish Oil
1 probiotic pill (critical care 50 billion count)
15g L-Glutamine powder

I take everything in the morning except the probiotic and glutmaine, which I take in a cup of tea when I get home from work.

On to the bad stuff. Before my surgery, I was prone to having "accidents" while I slept. I would wake up, and my bowels will have basically unloaded. It's pretty awful. Does a lot to a person's psyche, especially now that I'm in a long-term relationship. The doctor said it was caused by the narrowing. Now that I'm post op, it was supposed to go away, but it happened 2 nights ago. It's pretty devastating to know that I'm working towards all this healing, and I still can't control something like that. Also, I'm still getting a lot of gassiness. The gas can still be a Candida thing, although i can't say for sure until the cleanse is totally done. I've also noticed a correlation between my "accidents" and overeating combined with drinking. If I drink and have a big meal, it's likely that it will happen, so that's something I need to watch out for. I only mentioned it to see if anyone else has the same issue and what they do about it?

That's about it! Thank you for everyone who read and/or contributed to this thread! Drop me an email anytime if you have any questions. I'll probably still be on the diet for a long time!

-Adam
Acemagic@shaw.ca


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## hugh

still early days adam, sounds like your heading in the right direction.

my only comment is that your still taking a heap of sugar with all the dried fruit and snack bars.
try carrots, the best snack food invented, and bananas


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## Snoflayk505

Acemagic
I saw in the earlier part of this thread about you not liking organ meats. I didn't realize they are so good for you! I have a great way for you to get them into your diet, its how I make roasted chicken 

Get a whole chicken with the stuff inside. Put it on a roasting pan and season with salt & Pepper, the organ meats on the bottom of the dish. Stuff the chicken with an onion. Roast the chicken for 350 for about an hour an a half depending on the size. (I take it out once the skin on the legs start to show the bone at the foot).  While you let the chicken rest put the juices and the onion you stuffed the bird with in the blender (make sure its not too hot or you will have a blender bath) Blend until smooth and add salt to taste and theres your gravy 
The organs gives the gravy a super rich flavor and I guess its good for you  lol

Hope you like it if you try it


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## my buns are burnin

thank you so much for your post on how you are curing your Crohns.. I am very very new to all this (it hit my like a ton of bricks two months ago) and I still have not worked out what foods make it worse or better. Ohnly ones I know for sure is anything high in fat/fried and carrots seem to throw my stomach into an uproar.. thanks again for your post... it was very informative


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## Carrie

Here is my two cents: I had a strictureplasty last year because of severe narrowing of my small bowel. Previously, I had two other operations where almost four feet of bowel has been removed, including my TI and part of my colon (a right hemicolectomy). I experienced over ten years remission between my second and most recent surgery. In those ten years, I have found one factor to be the main contributor to my Crohn's: stress.

The first mini-flare I had was in 2003 when I transferred from a junior college to a big, four-year university. That was quickly treated with a few rounds of Remicade. The second flare began more subtly. I moved to California upon graduation from university (I am from Wisconsin) with my then boyfriend. Things were great for quite awhile, but then I think the relationship began to stress me out a bit. I first started having raging heartburn around Thanksgiving time in 2006. I also started having constipation. I got the heartburn under control completely, and the constipation mostly under control, and eventually decided end the relationship and to move out on my own in 2008. Things were mostly fine (I would occasionally have terrible gas and the constipation) until December 2008.

I came over to the UK for the first time to celebrate Christmas with my now husband and his family. On the flight, I started having nasty tummy pain which persisted on and off for the duration of our three-week visit. I booked an appointment with the GI upon arrival back to the US, and was put on 6MP. All was fine until I was set to come back to Europe for a vacation in Paris, trip to scope out London neighbourhoods, and train with a colleague in Sweden. The day before I was supposed to leave, I ended up in the hospital.  I was sent home with a prescription for prednisone and told to wean off it by 10mg per week. That was a bit too quick, and I was back in hospital four weeks later--presumably from the stress of preparing for my move to the UK.

Finally, it all ended with a 1.5 year struggle of dealing with all this without a GI's help (the NHS has a fun rule about not allowing immigrants to see a consultant until they've been a resident for a year or have an emergency that requires hospital admission). When I finally got a GI things were quite bad and I ended up in A&E twice (Carrie + vomitting is always a sign of something terribly wrong). Regardless, in those final months leading to my hospitalisation, I still practised for my UK driving test, took the test (and passed without any faults!) and travelled back to America for a friend's wedding and to see my parents. I was so ill that I cut my trip to the US short (I could not bear having my parents see me so ill again; they put up with that when I was young!), emailed by GI before leaving and planned to see him almost immediately upon my arrival back in the UK. I was admitted to hospital the next day because I was incredibly underweight, and could not keep food down at all. (If you're interested in the rest of the story, check my blog link below where you can read about the stay.)

Long story short, it's been over a year since I had my surgery and achieved immediate remission. One thing that strikes me about these specialised diets is that they are very restrictive, and I can't help but think that keeping everything straight must be really stressful at times. To me, all that stress wouldn't be worth it. Plus, I am a glutton for food (I did re-gain an impressive 20kg within six months of my surgery, after all). My basic diet is to eat what I want when I feel hungry, but try to go toward foods that are generally low-fat and "healthy," (i.e. few highly processed foods) and everything else in moderation. If it's something I know will bother me, I stay away from it, otherwise, everything is fair game. This is how I went about things before, too. My diet today is far better than it was when I was a child (too much processed food as a kid), and I feel far better for it. I learned to put up with daily pain then, but today, I will not tolerate it, and I am not willing to sacrifice food for my happiness.

Of course, this is my opinion. So if you have success with SCD and Paleo, go for it.


----------



## stacey82

hey everyone
ive never hurd off this diet, bin lookin for a diet for years... ive had crohns for the past 12 years, after i had my stoma reversed in 2008 ive bin ok not had a flare up on till nov 11, feelin really poorly at the moment but im gonna try this diet... ive had that much bowl took away im on my last chance off having a stoma forever ( which i dont mind but really dont wont yet) xx


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## wildbill_52280

i do believe , if anything, the cure for crohn's disease is likely to be a fecal transplant.

somehow, we have an incomplete bacterial profile that is susceptible to bacterial infections, whether it be damaged by a high sugar low fiber diet, chemicals in the food supply, Antibiotic exposure or a risk passed on from our parent whos flora has been damaged.

i suspect that intestinal flora damage from antibiotics to play a large role in most cases, the fact that incidence rates are much higher in the north, are from lower levels of vitamin d raising the risk of upper respiratory infections, as well as smoking increasing the risk of upper respiratory infections, which would then require more exposure to antibiotics and a higher rate of IBD in these populations.

therefore, no diet will ever be curative as it cannot replace the bacteria you  lost or never had, they must be acquired from another healthy human being.


----------



## kiny

wildbill_52280 said:


> i do believe , if anything, the cure for crohn's disease is likely to be a fecal transplant.
> 
> somehow, we have an incomplete bacterial profile that is susceptible to bacterial infections, whether it be damaged by a high sugar low fiber diet, chemicals in the food supply, Antibiotic exposure or a risk passed on from our parent whos flora has been damaged.
> 
> i suspect that intestinal flora damage from antibiotics to play a large role in most cases, the fact that incidence rates are much higher in the north, are from lower levels of vitamin d raising the risk of upper respiratory infections, as well as smoking increasing the risk of upper respiratory infections, which would then require more exposure to antibiotics and a higher rate of IBD in these populations for crohn, they're not selectively killing specific things, they're lowering exposure to bacteria in general
> 
> therefore, no diet will ever be curative as it cannot replace the bacteria you  lost or never had, they must be acquired from another healthy human being.


http://www.jimmunol.org/content/178/3/1809.long

might interest you

just having bacteria at the place of the collitis in mice makes it worse, mice they "clean" by removing the intestinal gut flora completely get better, clean wound is a happy wound, in the intestine too apparently, this is the idea behind broad spectrum antibiotics for crohn, they limit all contact with bacteria


----------



## JohnnyRottenAppleseed

I cured myself with antibiotics. By cure I mean I don't have any symptoms and can eat whatever I want and my bloodwork is normal.


----------



## bettyboop12

JohnnyO said:


> I cured myself with antibiotics. By cure I mean I don't have any symptoms and can eat whatever I want and my bloodwork is normal.


Hi

Which antibiotics were those?


----------



## JohnnyRottenAppleseed

bettyboop12 said:


> Hi
> 
> Which antibiotics were those?


Cipro and flagyl 500mg x2 per day x 10 days. 3 days later I was 90% better after cralping blood and pus 10 times per day. Then immediately followed up with probiotics or yogurt and 2 bananas a day.


----------



## kiny

hm


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## kiny

why do I keep writing guy instead of guT, I have done this like a gazillion times


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## JohnnyRottenAppleseed

I take nothing now except a few vitamins (I cycle on and off) and medical cannabis. I can fart without shitting my pants and drink a cappuccino without running to the bathroom. Success!


----------



## acemagic

Hello everyone!

It's been quite some time since I posted an update, so I wanted to touch base to give you an idea where I'm at.

I've been sticking with a fairly strict Paleo diet since Mid June. I'm approaching the 4 month mark and I'm still feeling pretty solid. Some things have changed since I adopted a Paleo-lifestyle, and I figured I should post some results.

First finding: If I stick to a very restrictive Paleo regimen, I have less gas, and less BM's on any given day. I'm talking raw fruits and veggies, nuts and seeds, salads, and cooked meats with spices, but without any sauces.

Second finding: As soon as I stray from this regimen, be it with grains, some sugars, or a hot sauce, I start to get immense amounts of gas and end up running to the bathroom noticably more frequently.

I've adopted a 90/10 rule. I stick to the Paleo diet 90% of the time but I'm not ridiculously strict about it. For example, if I go to a restaurant, I will probably get the chicken and veggies, but if there is a creme sauce on the chicken, I'll let it slide. I still go out for wings, love BBQing, and will get the occasional Wendy's hamburger (minus the bun). I've been eating a lot of vietnamese (replacing noodles with bean sprouts) and to be honest, it doesn't feel like I've restricted myself much at all.

I still get the occasional painful cramp that I described in some of my earlier posts. It usually comes right before or during a bowel movement. I haven't found any major correlation to what I've been eating.

This Friday, I'm seeing my GI for the first time since my surgery. I'm going to ask to be put on LDN (Low dose Naltrexone) therapy. I've been through all the other drugs and the side effects have been too much to bear. LDN seems to be my best option, especially considering all the positive reviews in the LDN threads on the forum. Whether he prescribes it to me is anybody's guess, but I'm reasonably hopeful.

So in summation, it appears the diet is working, I've gain a couple of pounds since I last reported things (I'm now 129-130), and I'm definitely still hopeful that this was the right choice. I'll touch base in another couple of months!

-Adam


----------



## Pisces'Mom

I would be interested in an update, acemagic, if you can give us one!  I'm new to the forum, and paleo is something I'd considered for months.


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## acemagic

Hey PM!

Welcome to the forum! I'm still feeling pretty good. I have a colonoscopy slated for April, so we'll have to see how things actually are by then, but I can safely say I've adopted the 90/10 rule when it comes to Paleo. I eat Paleo breakfasts (fruit) and Paleo dinners, but sometimes I have to have some Vietnamese Soup with rice noodles during lunch because my options are often limited. I went away to Mexico in December too, so I couldn't verify any of the foods there. I did find myself going to the bathroom a little more frequently when I was down there. Since I've come back, I've been going through a very stressful time at work, so my tummy has still been on edge a lot of the time, resulting in frequent trips to the bathroom. However, I'm getting almost no pain at all, despite eating raw fruits and veggies (I get the occasional bad cramp if I get a sudden urge to go to the washroom). Stress is a bitch and I can absolutely see how it can cause flare-ups.

I've also started Low dose Naltrexone (LDN) after doing some research in some of the other threads. It was a pain to obtain, and I haven't noticed any significant change yet, but I only started it in mid December and supposedly it takes 3 months to really see some effects. Hopefully by my April colonoscopy. I'll be sure to post those results.

Hope that helps! Let me know if you have any more questions!

-Adam


----------



## Pisces'Mom

Thank you so much!  Good luck with the colonoscopy!!

And FWIW, I think everyone goes to the restroom more frequently when they visit Mexico and aren't used to the food! :ylol2:


----------



## Rockdawg

Ace, can't wait to hear how things look after your colonoscopy.  After being treated in the past with Steroids, Asacol, Remicade, Imuran, Cipro, Flagyl, etc, I am going to start to focus on diet.  Especially now that I have recently been diagnosed with MS as well as Crohn's.  I believe that they are related, since they are both auto-immune disorders.  I am currently on Tysabri, and it is pulling "double duty", as it treats both Crohn's and MS, but the side effects can be fatal.  The side effects from diet, sunlight, and exercise are obviously only positive.  I refuse to be on the Tysabri for more than a year because of some of the potential side effects, but I have to admit it worked very well after my last flare...


----------



## acemagic

Good on you Rockdawg! Don't go off your medication without the OK from your doctor though. But you're absolutely right. improving your exercise and diet are never detrimental. Good luck!!

-Acemagic


----------



## JohnnyRottenAppleseed

Dr will never ok going off meds. No $$$ in doing that!


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## sugacookie

Hi ya, thank you for taking your time to write you post its so interesting.

I ve had crohns for six years and five weeks ago had a sub-total colectomy and formation of a ileostomy, this meant I have a stoma bag for life.

Once I heal I was thinking of going on the gaps diet which cuts out all processed foods and refined suger. My partners been banging on about changing my diet to the caveman diet for years but i ignored him.

The only thing Im concerned about is if I tried the diet you are going to do will it affect my stoma. Who would be best to ask this question do you think?

:sign0085:


----------



## hugh

Rockdawg said:


> I am going to start to focus on diet.  Especially now that I have recently been diagnosed with MS as well as Crohn's.


might want to check this out............
 The Paleo Diet and Multiple Sclerosis
http://www.dailymotion.com/video/x59iwc_the-paleo-diet-and-multiple-scleros_lifestyle#.UQMO5pHgpzA


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## Hobbes650

I am in the camp that says diet is not much of a factor in causing remissions (but will certainly help you feel better).  I had 25+ years of remission by just plain dumb luck- we thought it was UC at 18, had proctocolectomy (which cures UC) at 19 and then diagnosed with Crohns at age 44.  No meds after surgery at 19 up until Crohns diagnosis.  Since you cannot have both, it's now clear I originally had/have Crohns Colitis.  I am enjoying reading this thread though.


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## Beach

Congrats Ace for sticking with the diet over the last few months!  Hope you get excellent result from the doctor come April, with the exam.  Thought to ask, along with the change in foods eaten, did you change what you drink too?  

I mention it as I eat a paleo diet also.  I've had decent results with the diet, but it didn't cure me.  This past week I took the additional step of only drinking spring water, Evian in particular.  I wanted to avoid chlorine, fluoride found often in tap water to see what would happen.  To my surprise my toilet trips dropped greatly.  Before, I probably would go 4 to 5 times a day.  Of late, it has been once or twice.  Additionally, I'm now, well... somewhat regular.  That hasn't happened in a few years, any kind of regularity.  I'm doing two other new actions with the diet, so who knows they might be helping, and I guess too additionally this could be just a fluke, a good week for me.  But I've asked in the diet section about others trying the paleo spring water bit and could not find others that tried.  Seeing your thread I thought to ask out of curiosity.


----------



## vz101

Good luck in your endeavor. I tried a holistic approach a few years ago modifying my diet, began using supplements, and stopped taking my meds. For the first few months as my body detoxed from the meds I did feel better. My energy was good, I was exercising, it was great but it didnt last. During that time we lost control of the disease and a number of strictures developed which resulted in the need for three small bowel resections during a 24 month period. Even now I feel like the disease is out of control. It is much worse now than before the change.

Good luck and my advice is to keep your GI doc in the loop.


----------



## JohnnyRottenAppleseed

Beach said:


> Congrats Ace for sticking with the diet over the last few months!  Hope you get excellent result from the doctor come April, with the exam.  Thought to ask, along with the change in foods eaten, did you change what you drink too?
> 
> I mention it as I eat a paleo diet also.  I've had decent results with the diet, but it didn't cure me.  This past week I took the additional step of only drinking spring water, Evian in particular.  I wanted to avoid chlorine, fluoride found often in tap water to see what would happen.  To my surprise my toilet trips dropped greatly.  Before, I probably would go 4 to 5 times a day.  Of late, it has been once or twice.  Additionally, I'm now, well... somewhat regular.  That hasn't happened in a few years, any kind of regularity.  I'm doing two other new actions with the diet, so who knows they might be helping, and I guess too additionally this could be just a fluke, a good week for me.  But I've asked in the diet section about others trying the paleo spring water bit and could not find others that tried.  Seeing your thread I thought to ask out of curiosity.


This was released today linking pesticides in water to allergies. I only drink arrowhead spring water.
http://healthland.time.com/2012/12/03/study-links-food-allergies-to-pesticides-in-tap-water/


----------



## Jennifer

sugacookie said:


> The only thing Im concerned about is if I tried the diet you are going to do will it affect my stoma. Who would be best to ask this question do you think?


I'd talk to your GI, a nutritionist and I'm hoping Nyx might be able to share some info on diet and a stoma.


----------



## Beach

JohnnyO said:


> This was released today linking pesticides in water to allergies. I only drink arrowhead spring water.
> http://healthland.time.com/2012/12/03/study-links-food-allergies-to-pesticides-in-tap-water/


Thanks for the water and allergy article.  I was well to the gut once again today!  Had good energy too, looking healthier - somethings up.  This morning I added Fiji water to the counter, it was on sale at the store, so have a second apparently safe spring water to choose from.  Overall, don't know if it is the spring water that is helping me, as I'm also trying a few other ideas, but enjoying the being healthier trend.


----------



## JohnnyRottenAppleseed

Figi is awful from what I hear. Try arrowhead or find a list of bottled water online that rates bottled water.


----------



## Beach

Ok, will do!


----------



## acemagic

Hey guys,

Just an update: My colonoscopy has been moved to July  I'll keep you posted on the results!

-Adam


----------



## blazeking

Low sugar/no grains must mean you have to have fat.  But for me coming out of a flare, I still cannot digest fat well so it's out of the question.  I tried it for a few weeks, lost weight and felt miserable toward the end.  Perhaps in remission it can help.


----------



## LaLaNapa

Hi Acemagic!

Well I hope that means you are doing well - otherwise I would think they'd have kept to the April schedule.  How long have you been on LDN?  (Still taking it?)  Have you noticed anything?

-LaLa


----------



## acemagic

Hey Lala,

I've been on LDN for exactly 3 months. I haven't noticed an significant change specifically, but I have noticed that the constant high stress situations that I go through frequently at work seem to have less of an impact on my stomach. Prior to the LDN, if I got into a high stress situation, I would get a "knot" in my stomach and I'd have to go to the bathroom frequently, accompanied by cramps. In recent months, stress levels have been almost manageable. I don't know if it's coincidence or not, but that's what I've noticed.

-Adam


----------



## LaLaNapa

It's interesting you mention that.  I just passed the two month mark and had been waiting for some kind of miraculous transformation I think.  Ha.  But what I have noticed is the subtle change in how I handle anxiety - my trigger.  I had been "ramping" up and then anxiety would build upon anxiety about how I was going to feel - just the mere anticipation of a flare seemed to bring it on.  But I've been able to 'stop the train' so to speak and maintain a positive attitude.  This has made me feel more in control and I think that has been the good effect on the disease.  

But I have to wait until December for a scope or MRI (my choice - yipee) to see the internal affect of LDN.    We'll keep fingers crossed for your results in July!!


----------



## Pisces'Mom

I just wanted to update a bit:  I began testing out Paleo in mid-january on myself first, and learning a few recipes.  Then, on Feb 1, I switched both my daughter and myself to paleo completely.  She is only about 50/50 Paleo, as she doesn't get it at her dad's house, but she *does* prefer and make Paleo choices when given the options.  We are both feeling much, much better.  I have lost 18 lbs without really trying (I need to lose about 40 more to be at a healthy weight for my height) and have regular movements and little to no gas ever.  I have allowed myself a few 'cheat' times, and have regretted *every single one*!!  It's not a very difficult diet to stick to, and I can find something to eat at almost every restaurant (fast food is generally out, although there are a few exceptions), but most importantly, *my little girl is back in remission*, grinning, and growing normally.  She even thanked me a week ago, for putting us on the diet, saying, 'it's just more delicious and I feel soooo much better!'

So, I'm not saying it will work for everyone, but I am saying that it seems to be working well for us right now.  Thank you, acemagic, for this thread, which has helped me make some changes we both needed to make!:thumright:


----------



## acemagic

That is incredibly great to hear PiscesMom. Thanks for posting it, and you're very welcome. I hope everything continues to work well for you guys 

-Adam


----------



## SimonTheHard

Thank you for the Paleo Diet suggestion. I have a good feeling it's the only thing left for me to change in my diet, which is already good, but there are things like bread that I should stop eating. 

Hey, you can look up my thread in Success stories. You're bound to find something helpful. I'm in something like remission, lol. Sometimes I my bowels can get a bit irritated and I have loose stools, but other times (90%) of the time, I'm normal. I also used to have a crap load of ass problems, abscesses, fistulas and fissure, cured all with homeopathy (I didn't believe in that stuff), i.e Silicea. Sometimes I still get abscesses or fistulas, but I've found that they're caused by diarrhea or constipation.

Anyways, thanks again for the suggestion. I want this thing gone, forever, k? I want to join the airforce in 2-3 years anyway. Good luck, people who believe in cures and bust their ass to find them, do get cured. You'll find lots of folk here who doubt the natural path though, the same ones that stick to their doctors and western medicine.


----------



## notochrohn

I am going to undergo my 3rd resection next week. After the surgery I will follow Paleo diet.
Actually I am following the diet since last week and started feeling better (less pain and inflammation). 
Just wanted to say that after 2d resection I tried vegetarian just because it sounded "healthy" and without deep research on the issue. It worsened my condition - that's all.


----------



## acemagic

Good luck notocrohn! Resections are always tough, but you'll pull through and should feel WAY better after you recover.

I weighed myself this morning for the first time in a few months. I was struggling at 127lbs after I got out of my surgery last May for like...6 months. I didn't think I was ever going to be able to put weight back on. I was 135 as of this morning  

I've also started to re-introduce plain white rice. I seem to be able to tolerate it, which could be why I've put on a few pounds. Colonoscopy in 2 months! Woo! (but not really).

-Adam


----------



## brandyrie

Thank you for this information. I am definitely going to look into this diet. I have tried to eat a strict diet containing no grain before and was put almost into an immediate flare. I think it is awesome that you have such a great attitude about this while you are in the hospital, it is very encouraging.


----------



## notochrohn

Hi Adam,

You are almost a year on this diet - how is your general feeling , BM's ?
I don't think that white rice will help you to gain weight. Try coconut milk / oil, nuts butter.


----------



## acemagic

Hey notocrohn,

In general, I feel good. It was very hard to start with. I felt like I was getting sicker when I eliminated sugars, grains and dairy. My body didn't know how to handle things, and I was a wreck for the first week or two.

My BM's are generally still loose, but I find if I stick to 100% Paleo for a day, they become fairly solid (no sugar, grains or dairy at all). If I stray at all, they become loose, but I don't have any pain.

I'll be the first to admit that I'm not 100% Paleo, but I've been conscious about when I cheat and take note of my symptoms. Yesterday, my work was hosting a luncheon, and I caved and ate 2 slices of pizza. By the time I was halfway through the second slice, I felt like someone had kicked me in the stomach. It was extremely apparent that my body was rejecting things, and even today, my stomach is sore. Considering that's the first major cheat I've had in ages, I don't think it's a coincidence that I suddenly was doubling over in pain.

To answer your question, my energy level is up from what it's ever been. My docs attribute it to my recent surgery, and they may be right. My history has shown that I'm usually quite good a year or two after my previous surgery. But my lifestyle changes will hopefully determine whether or not my healing stays in check this time around.

Here's where I'm at now:

1 tablespoon of high potency fish oil daily (morning)
1 high potency probiotic daily (after dinner)
4.5mg Low Dose Naltrexone before bed
Very little complex sugars, grains and dairy products.

Generally, I have fruit for breakfast, with tea (sweetened by stevia), Vietnamese Pho for lunch, or a gluten free soup/salad combo, and chicken or beef with veggies for dinner. For snacks, Larabars, Pistachios, grapes, raisins etc.

If I stray at all with dairy, I usually get extreme amounts of bloating and foul smelling gas. It's apparent that there is a direct correlation between straying from the diet, and my symptoms. As to whether or not it's bringing the crohn's back, we'll have to see in July.

So in summary, the diet seems to keep me on the right track. I feel great and actually haven't had a sick day all year (a huge rarity in my case). I still get loose stools, and have my fair share of issues, but whether it's the diet or the surgery, I am feeling better than I have in the past.

Thanks for the info on the coconut milk. I'm not a big fan of coconuts, but I know it has some great benefits, so maybe I'll give it another try, even if it's just being cooked in something.

Hope that helps!

-Adam


----------



## hugh

blazeking said:


> Low sugar/no grains must mean you have to have fat.  But for me coming out of a flare, I still cannot digest fat well so it's out of the question.  I tried it for a few weeks, lost weight and felt miserable toward the end.  Perhaps in remission it can help.


On paleo you can have sweet potato and other tubers (i avoid potatoes)


----------



## SN8888

Anyone who benefits from a low carb (SCD-like) diet should try saccharomyces boulardii. It eats carbs and can crowd out some of the bad bacteria (or whatever's in there) that causes problems. Look it up on Wikipedia.
I've been taking it for years. As long as I am on it (and sticking to my diet), I have no major problems. Every time I have stopped taking it, I got sick a week later. I didn't even make the connection the first few times because of the delayed effect.


----------



## ***Lisa***

SN8888 said:


> Anyone who benefits from a low carb (SCD-like) diet should try saccharomyces boulardii. It eats carbs and can crowd out some of the bad bacteria (or whatever's in there) that causes problems. Look it up on Wikipedia.
> I've been taking it for years. As long as I am on it (and sticking to my diet), I have no major problems. Every time I have stopped taking it, I got sick a week later. I didn't even make the connection the first few times because of the delayed effect.


I agree. S. Boulardii works wonders along with probiotics, Vitamin D3, Folic Acid, aloe vera liquid and L-Glutamine.


----------



## ForeverCrohns

acemagic said:


> 4- For those unfamiliar with it, the Paleo diet essentially states that processed foods (such as dairy, grains and refined sugars) are relatively new to the human digestive system and humans haven't completely adapted to digest these foods yet. It makes sense from an evolutionary standpoint and is backed up by the fact that our diseases (IBS, Crohn's and colitis) never existed before we began cultivating grains and milking cows. For those who are underweight (such as myself), a Paleo diet seems to help with weight gain, and for those who are overweight, it appears to be very successful with helping weight loss.
> 
> Acemagic@shaw.ca


Hi Adam

I totally agree with non dairy, sugars, grains..etc I will share my experience :

My father has introduced me to a guy who treats using natural meds and diet who claims to have cured my brother's appendicitis without surgery and who put a little girl who has Crohn's and was about to have intestinal resection in remission. So I decided to meet him because my body got so used to Humira that every time I stop it I get a worse flare up. 
He gave me a special diet and some natural things like linseed oil and speriolina and other things. The diet was very simple I followed it for 3 months and those were the best 3 months since I had Crohn's that I almost felt normal!!!


----------



## Ozboz

I really love the diet natural cure path but I have a problem
I cannot tolerate anything like veggies or fruit all I eat at the moment are things like gluten free breads and pasta rice and meats I do tolerate very ripe banana or really slow long cooked carrot or sweet potato I really want to eat more healthy but everytime I try it messes me up for some reason

I forgot to mention I'm dairy free but have a horrible sweet tooth that I'm trying to control but find it hard


----------



## UnXmas

Ozboz said:


> I really love the diet natural cure path but I have a problem
> I cannot tolerate anything like veggies or fruit all I eat at the moment are things like gluten free breads and pasta rice and meats I do tolerate very ripe banana or really slow long cooked carrot or sweet potato I really want to eat more healthy but everytime I try it messes me up for some reason
> 
> I forgot to mention I'm dairy free but have a horrible sweet tooth that I'm trying to control but find it hard


That's one of the problems I had with that type of diet too. Processed food is often far better for me than unprocessed food - I can't have too much high-fibre fruit and veg, whole grains, or nuts and seeds. 

But it's confusing - some of the popular Crohn's diets don't allow grains, but often whole meal grains are viewed as healthy food.

I just assume that the foods that cause me less symptoms are the healthiest for me. That's not too restrictive - I can get all the fruit and veg I need by sticking mostly to the ones that are low-fibre.


----------



## SN8888

For me, there are things that directly irritate (high fiber, dairy, hot spices, etc) and things that don't seem to be a problem initially, but play a role in the fundamental problem (starch, sugar apparently feed the microbes that cause some reaction).
When I'm in a good routine and I'm feeling ok, I can cheat a little. A little carbs between meals aren't too hard to handle (gluten free cookies, chips, even a little candy), but I keep carbs out of my meals.


----------



## UnXmas

SN8888 said:


> For me, there are things that directly irritate (high fiber, dairy, hot spices, etc) and things that don't seem to be a problem initially, but play a role in the fundamental problem (starch, sugar apparently feed the microbes that cause some reaction).
> When I'm in a good routine and I'm feeling ok, I can cheat a little. A little carbs between meals aren't too hard to handle (gluten free cookies, chips, even a little candy), but I keep carbs out of my meals.


How do you know starch and sugar cause you problems if they don't cause an obvious, immediate reaction?


----------



## SN8888

I went without it for a while, started feeling better. After that, if I had a starchy meal a couple days in a row, I started to get a bad kind of gas, abdominal pain, fatigue, etc...eventually feeling bad again. Around that time, I discovered saccharomyces boulardii, which helped me a lot. I may not have been as sick as many of the people here, though.


----------



## acemagic

That's basically what I was eluding to in my first post on this thread. Crohn's "causing" foods versus Crohn's "irritating" foods.

Keep in mind, it's just a theory, but high fibre irritants like veggies, fruits, nuts and seeds probably shouldnt be eaten if you have open sores (active crohns) in your gut. If you're having an active flare, go on juice & chicken broth soup for a few days straight. I had a really bad day last week, where I caved and ate 2 slices of pizza. It hurt like hell, and over the next couple of days I resolved to go back to strict Paleo, so I had a salad. HUGE HUGE mistake. The salad hurt worse than the pizza. So I ate vietnamese soup and drank juice for 2 days, and now I feel a million times better, and can go back to Paleo legal stuff. Maybe I'll stay away from nuts for another couple of days though.

So although the processed food might be easier to swallow , it might be causing issues in the long run. Again, just a theory.

-Adam


----------



## monmon218

Hey acemagic,

It's nice to see that there's a Canadian person posting.  I am from Toronto and was diagnosed with Crohn's a year ago.  

I have decided to go against my docs with any meds (remicade/humira - with all the side effects.. i'm scared) and have decided to find alternate ways to work with my Crohn's.

Being Asian, I went for a Chinese doctor and she has given me meds to drink.  I have had it for a year now but I don't see much difference in my health.  The one thing that she often mentions about her meds were to clear my intestine and let air(gas) go through.  I don't really buy that as I still have occasional loose bowel movements.  One thing that I've been told though was to be cautious to what I eat by the chinese doc.  I used to eat everything and enjoyed a lot of junk food.. but I have eliminated quite a lot.  

I was reading about your thread where you said there were irritating foods and causing foods.. I used to be a big BEEF meat eater but I have stopped eating it since going to the chinese doc.  I believe that helped a lot as I usually get a lot of gas after eating beef - I love viet noodles too but I've almost eliminated my going out eating habits.. 

At the moment my daily diet is this:

Morning: a chinese homemade soup, two pieces of white bread with avocado + some sort of pork/chicken

Lunch: left overs from yesterday's evening - rice and some cooked veges + some pork/chicken/salmon

Dinner: rice and veges, pork/chicken/salmon

I don't know if it's considered to be a diet but like I have mentioned, I have almost eliminated my dinning out habit and have stick with home meals.  I don't know if I am considered to be a severe case of CD (since my specialist told me that I have peri-anal disease and that's considered to be a moderate to severe case of CD) but I don't usually feel any pain at all.  I was first diagnosed with i had bloody stool for a few days and then i went to do colonoscopy.. but I haven't had a bloody stool experience for almost a year now.  I get to occasional sudden pain in my anus at times, and also some occasional pain on the left side of my tummy - but that's almost it ever since I got diagnosed.

I am use to having to use the washroom once right after breakfast in the morning, and usually once in between after lunch and before dinner.  At times I might need an extra washroom time after dinner. 

I am also only taking a Jamison Probiotic and a multi-vitamin supplement - both after dinner.

At the moment I have firm stool most of the time with the occasion of watery stool in the middle of the day - but no blood.  I have only been asked to do blood test every quarter but my specialist often tells me that the results are still high and I'm still having active CD with inflammation.

On a side note, one of the reason why I was scared and went to the doctors first was that I've had bumps in my anus area (which i think now is called abscess).  And not until these few days my other side of my anus has what i think a fistula.. 

Anyways ! that's my story with working with my CD.  Please share your thoughts !


----------



## Ozboz

monmon218 I was like you never had pain and anything like that till about the second or third year I had crohn's and a bad flare that was actually caused by a so called doctor he gave me some shit to drink and that was it had massive flare.

If you can tolerate veggies which I can't cooked or fresh. If I were you try eiminating carbs for a months like bread and rice and just try and eat meat+veg and maybe a fruit here and there

When I could still tolerate veggies and fruit and I cut out the carbs I was on top of the world then had this massive flare and now I can't tolerate anything but processed crap ot bread and I try and eat as much gluten free as I can I noticed that made a huge diffrence also I intoduced supplements which helped alot as did probiotics but some strains are better than others for crohn's but play with your diet and supplements and it will be 100 times better than any meds they give you. I suffered badly with side effects from all the immuno suppressant drugs


----------



## UnXmas

monmon218 said:


> At the moment my daily diet is this:
> 
> Morning: a chinese homemade soup, two pieces of white bread with avocado + some sort of pork/chicken
> 
> Lunch: left overs from yesterday's evening - rice and some cooked veges + some pork/chicken/salmon
> 
> Dinner: rice and veges, pork/chicken/salmon


I often end up asking this when people post their diets: how do you manage to maintain a healthy weight on that? It's just they seem to be mostly low calorie foods. I can't gain the weight I need to, even though I include fat and plenty of sugar in my diet.


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## monmon218

Hey Ozboz.. 

You mentioned that I should try eliminating the Bread and Rice ? Why is that ?  So I should just go with All meat/veg/fruit ? What's the benefit of that ?

I do take supplements: 
morning: manuka honey
evening: probiotic + multi-vitamin (on and off)
* I used to take a fish oil pill every lunch as well

UnXmas,

I have been eating like this mostly throughout my life. But prior to getting diagnosed as CD I have ate beef as well.

To me all of the meals are pretty filling.  I also eat a lot of snacks recently as I think I am not in the flare mode.

Ya I guess I'm a little thin.. but I am Chinese so I was considered thin ever since young.  I'm around 5"6 and prior to my illness I was holding 135lb.. now I'm around 115lb

I am trying to gain weight though.. are there any suggestions ?

I am waiting for the time to call my family doctor today as I found out I had a small hole ish feeling at my right side of my butt.. I really hope that it's nothing but from what I have read I think it's a fistula.. Gosh having Crohn's sucks.  I just hate the fact that the people around me suffers too when I tell them how I'm doing..


----------



## SN8888

UnXmas said:


> I often end up asking this when people post their diets: how do you manage to maintain a healthy weight on that? It's just they seem to be mostly low calorie foods. I can't gain the weight I need to, even though I include fat and plenty of sugar in my diet.


If a diet can lead you to less inflammation and more healing (like I believe it can), then the problems with maintaining weight will improve. Like you said, you can eat high calorie "fattening" food and not gain weight right now.

I think the low carb diet can be worse for maintaining weight, but once you start to feel better, try adding carbs between meals (when they're more likely to be quickly digested and absorbed)...you'll probably have to experiment to see what you can tolerate (chips? gluten-free cookies?) and you probably can't have too much at a time.


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## Ozboz

Bread and rice even noodles breakdown into bad sugars in the gut which feed the patogens that are associated with IBD I have cut out as much bread as I can and now my stools are heaps more formed and less gas


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## UnXmas

SN8888 said:


> If a diet can lead you to less inflammation and more healing (like I believe it can), then the problems with maintaining weight will improve. Like you said, you can eat high calorie "fattening" food and not gain weight right now.
> 
> I think the low carb diet can be worse for maintaining weight, but once you start to feel better, try adding carbs between meals (when they're more likely to be quickly digested and absorbed)...you'll probably have to experiment to see what you can tolerate (chips? gluten-free cookies?) and you probably can't have too much at a time.


I think I am absorbing all my food, I just can't eat enough. I worked out recently that I get around 1500 calories a day, so I'd need to eat more just to maintain a healthy weight, never mind gaining what I need to first. So I think the reason I'm not gaining, even though I'm eating fatty and sugary foods, is that the quantities of them I'm eating are just too small, rather than because my intestines are in bad shape. And I'm not sure that would change even if my inflammation went away, as my stomach doesn't empty properly.

I can and do eat most types of food - I have no problems with dairy, gluten, etc. The only things that really gives me problems are too much fibre, which worsens diarrhoea and discomfort for me, and really stodgy, fatty foods which make me feel full and bloated.


----------



## monmon218

SN8888 - The foods that I eat are what my chinese doctor told me to follow.  But I also eat fatty foods like chips and chocolate, candies and stuff in between meals as well.  I consume quite a lot of those too though.

However SN8888, from my blood test results, I'm still high on CRP and ESR results.  I have low Hemoglobin too.  My specialist kept on saying that I'm still inflamed even when I'm having this diet.  

My CRP was 46.7 (< 8 in normal people ?) ESR was 41 (0-15 for normal people) and my Hemoglobin is at 128 (normal is 135-170).  This was when I sort of have firm stool and stuff.. so I am not sure if the diet is working or not.  But I don't feel any pain - if there is it's very short and seldom. 

UnXmas - I am trying to gain weight as well.. I'm a male 5'6 but only weights 112lb from my doctor visit yesterday.  I initially weight 130 or so.  I don't know what else I can do but like you said, it doesn't seem like I'm absorbing any nutrients.

I have thought of drinking Ensure (those energy milks or something for seniors) and try to gain some weight back.. but now I am not even sure what to do as I found out that I have another fistula..

The disease is so unpredictable.. even though I'm not in pain but I constantly worry about it and it's so depressing.


----------



## UnXmas

monmon218 said:


> SN8888 - The foods that I eat are what my chinese doctor told me to follow.  But I also eat fatty foods like chips and chocolate, candies and stuff in between meals as well.  I consume quite a lot of those too though.
> 
> However SN8888, from my blood test results, I'm still high on CRP and ESR results.  I have low Hemoglobin too.  My specialist kept on saying that I'm still inflamed even when I'm having this diet.
> 
> My CRP was 46.7 (< 8 in normal people ?) ESR was 41 (0-15 for normal people) and my Hemoglobin is at 128 (normal is 135-170).  This was when I sort of have firm stool and stuff.. so I am not sure if the diet is working or not.  But I don't feel any pain - if there is it's very short and seldom.
> 
> UnXmas - I am trying to gain weight as well.. I'm a male 5'6 but only weights 112lb from my doctor visit yesterday.  I initially weight 130 or so.  I don't know what else I can do but like you said, it doesn't seem like I'm absorbing any nutrients.
> 
> I have thought of drinking Ensure (those energy milks or something for seniors) and try to gain some weight back.. but now I am not even sure what to do as I found out that I have another fistula..
> 
> The disease is so unpredictable.. even though I'm not in pain but I constantly worry about it and it's so depressing.


Sounds like you're about where I am with weight. I'm female, 165 cm (about 5'6") and weighed around 37kg (about 80lb) when I was last weighed at a hospital appointment a few weeks ago. I've been stuck at this weight since the end of last year, though I don't think I've lost any more since then. Ensure and similar supplements are something I actually find quite helpful, as when I can't face a meal it's a quick way of getting everything I need, and I don't mind the taste either. For some reason my GP doesn't like me having them, she says I should try and eat as much "real" food as possible.


I do eat a lot of "junk" food, which may be healthy or unhealthy depending on your point of view. I eat sugar, butter, etc., but I think these things are not unhealthy unless you're overweight. My diet isn't all junk though - sometimes the media seems to imply that a normal western diet consists of just McDonald's, but I include home cooked meals, low fibre fruit and veg, etc. 

I tried various diets that were based on the idea that an organic, whole food diet would allow the gut to heal, but they just made me worse. I think that perhaps people should be a healthy weight (and maybe with a bit of extra weight to spare) before trying out different diets. 

Sometimes I wonder why diet doesn't seem to help me more, but looking at it another way, you could say that my normal diet is helping with my symptoms.


----------



## monmon218

UnXmas, I'm curious to know what kind of meds/supplements are you having at the moment.. and how long have you been diagnosed for ?

I just read about Krill Oil and i think I am going to give that a try as I have been consuming Fish oils yet my inflammation levels are still high.  

If the Krill Oil can lower my inflammation levels... I am hoping that my Crohn's wouldn't be as bad (although I don't know what is bad)..

I meet with my specialist twice a year and with the last two visits since my diagnoses, she has only commented that my inflammation levels are still high so that means that my crohn's is still active.  But are there other factors that I can look into/signs that tells me that my disease is getting worse ?


----------



## SN8888

monmon218 said:


> SN8888 - The foods that I eat are what my chinese doctor told me to follow.  But I also eat fatty foods like chips and chocolate, candies and stuff in between meals as well.  I consume quite a lot of those too though.
> 
> However SN8888, from my blood test results, I'm still high on CRP and ESR results.  I have low Hemoglobin too.  My specialist kept on saying that I'm still inflamed even when I'm having this diet.
> 
> My CRP was 46.7 (< 8 in normal people ?) ESR was 41 (0-15 for normal people) and my Hemoglobin is at 128 (normal is 135-170).  This was when I sort of have firm stool and stuff.. so I am not sure if the diet is working or not.  But I don't feel any pain - if there is it's very short and seldom.
> 
> UnXmas - I am trying to gain weight as well.. I'm a male 5'6 but only weights 112lb from my doctor visit yesterday.  I initially weight 130 or so.  I don't know what else I can do but like you said, it doesn't seem like I'm absorbing any nutrients.
> 
> I have thought of drinking Ensure (those energy milks or something for seniors) and try to gain some weight back.. but now I am not even sure what to do as I found out that I have another fistula..
> 
> The disease is so unpredictable.. even though I'm not in pain but I constantly worry about it and it's so depressing.


Forgive me if this sounds argumentative, but it sounds like your current diet isn't helping you. Maybe no diet will(?).... but I believe that a very low carb type of diet (along with saccharomyces bouldardii) has the best chance of helping.


----------



## acemagic

SN8888 said:


> Forgive me if this sounds argumentative, but it sounds like your current diet isn't helping you. Maybe no diet will(?).... but I believe that a very low carb type of diet (along with saccharomyces bouldardii) has the best chance of helping.


I think I have to agree, althought I haven't tested saccharomyces bouldardii myself.

UnXmas and monmon218: You both mentioned you eat a lot of junk food, and it sounds like you're both underweight. I can absolutely sympathize with the notion of a healthy diet causing you pain. My suggestion? Go on a liquid, sugar free diet for a few days at least. Allow your gut to heal, then slowly re-introduce foods that are better for you. If sugars and gluten/yeast are feeding the bad bacteria, you'll feel fine because the foods themselves aren't irritating, but the damage and malabsorption will get worse, resulting in more weight loss.


----------



## acemagic

UPDATE:

Yesterday was a terrible day for me. My worst since my surgery. I had to take two T3's for the pain after I ate a salad. But prior to the salad, I had strayed from my diet again. I ordered chinese food the night before. Ginger beef is no doubt breaded and the sauces contain God knows what.

The pain was incredibly intense.

Combined with the excruciating pain I had last week when I ate 2 slices of pizza, I think the message is pretty clear: My crohn's is in a flare right now - or returning - and I'm doing something wrong (probably cheating on my diet). 

However, I'm looking at this as a good thing: A chance to see if the Paleo diet ACTUALLY does something for me (and others). Clearly the salad aggravated the hell out of it. Things are broken and here's my chance to see if I can fix it. So, here's my planned meals for the next few days:

Breakfast: Fresh squeezed apple/kale/carrot juice from Jugo Juice + Green ginger tea (with L-Glutamine added) + Water

Lunch: Homemade chicken broth + more of the same juice + water

Dinner: Likely more broth + water + tea

Not too exciting right? But it will definitely give my guts a rest, without doing more harm. I'm going to keep this up for probably 2 days, then start to add small bits of chicken into the soup, or maybe switch to butternut squash soup.

Once my bowels have a chance to heal, if I stick to Paleo 100% and things go back to normal, then I'll know it's actually working. I'll keep you posted.

-Adam


----------



## Beach

Ohh, that awful.  Hope you get to feeling better soon.  

As i found out this weekend myself, it takes a good long while for the gut to heal.  I've been well of late on a modified form of the diet.  It has taken a few months for me to get this way.  Overall, it has become rare for me to be ill to the stomach, thankfully.  

So over the weekend thought I'd be somewhat adventurous with the diet.  I ate a good amount of fiber rich sauerkraut.  Ouch, tasted good, but it didn't work out as I hoped.    I wasn't sick as you experienced I imagine, so was thinking my gut has healed some, but I was in a good amount of discomfort.  I'm planning to try again in a few weeks.  Fingers crossed I can handle my fiber better then.


----------



## JohnnyRottenAppleseed

I eat unprocessed Organic NON GMO foods. Unrefined Carbs. I basically cook all my meals for the most part. S Boulardi and probiotics help me too. It takes a while to heal the intestinal lining. Broth soups are good as well as short fasts. Make sure to subscribe to the Vitamin D thread. You won't heal if you are deficient in Vit D and minerals. Heal the whole body and the body will heal the crohn's. You can't heal the body by focusing on the part. Take a holistic approach. Also, 8 hours of sleep and stress and anxiety/ worry management must be addressed. I can make myself sick by indulging in worry or anger.


----------



## monmon218

Hey SN8888 - I am not sure if the diet will ever help me.. but like I said I haven't been sticking to the diet 100%.. sometimes my mother add different sauces to the food so those might affect my stomach ? When you mean Low Carb diet - can you give me some examples ? Also what is saccharomyces bouldardii ?

acemagic - you were talking about liquid, sugar free diet ? What does that mean and how do I know when is the right time to go back to what i do ?

I think my main concern right now is if my crohn's is under control or not.  My main goal for whatever diet is to hope that I can delay whatever surgery or any type of western drugs with many side effects as long as I can..

Just today I've bought myself Jamison Krill Oil (I'm from Toronto/Canada btw).  I was reading on this forum that many people have had good results with it - at least what caught my attention was reducing CRP rates - which is what I'm looking for and hope that it's also something else that I can make my crohn's more calm.

JohnnyO - That was exactly what a lot of those Chinese/holistic doctors say about Crohn's.  If you can heal the body then the body will maintain crohn's.  But how is the main problem.  You are saying that Vit D also helps ? Please explain. Also please share your diets/what your daily meds/supplements are. I am very interested to know.

One of the main problems that I've found after I got CD was stress/anxiety/etc too.  I was always a person that gets easily worried about everything prior to the disease.  Now it makes me more worried when I got it - every little thing scares the crap out of me.  I am just thankful that I have my mother and my girlfriend with me.  It's hard to live with a time bomb..


----------



## JohnnyRottenAppleseed

UnXmas said:


> Sounds like you're about where I am with weight. I'm female, 165 cm (about 5'6") and weighed around 37kg (about 80lb) when I was last weighed at a hospital appointment a few weeks ago. I've been stuck at this weight since the end of last year, though I don't think I've lost any more since then. Ensure and similar supplements are something I actually find quite helpful, as when I can't face a meal it's a quick way of getting everything I need, and I don't mind the taste either. For some reason my GP doesn't like me having them, she says I should try and eat as much "real" food as possible.
> 
> 
> I do eat a lot of "junk" food, which may be healthy or unhealthy depending on your point of view. I eat sugar, butter, etc., but I think these things are not unhealthy unless you're overweight. My diet isn't all junk though - sometimes the media seems to imply that a normal western diet consists of just McDonald's, but I include home cooked meals, low fibre fruit and veg, etc.
> 
> I tried various diets that were based on the idea that an organic, whole food diet would allow the gut to heal, but they just made me worse. I think that perhaps people should be a healthy weight (and maybe with a bit of extra weight to spare) before trying out different diets.
> 
> Sometimes I wonder why diet doesn't seem to help me more, but looking at it another way, you could say that my normal diet is helping with my symptoms.


Sugar and refined Carbs cause inflammation. So does GMO which is 90% of sugar beets so unless you are doing organic sugar then you are getting double dose of inflammatory ingredients. Butter is great if it's grass fed real butter.


----------



## JohnnyRottenAppleseed

monmon218 said:


> Hey SN8888 - I am not sure if the diet will ever help me.. but like I said I haven't been sticking to the diet 100%.. sometimes my mother add different sauces to the food so those might affect my stomach ? When you mean Low Carb diet - can you give me some examples ? Also what is saccharomyces bouldardii ?
> 
> acemagic - you were talking about liquid, sugar free diet ? What does that mean and how do I know when is the right time to go back to what i do ?
> 
> I think my main concern right now is if my crohn's is under control or not.  My main goal for whatever diet is to hope that I can delay whatever surgery or any type of western drugs with many side effects as long as I can..
> 
> Just today I've bought myself Jamison Krill Oil (I'm from Toronto/Canada btw).  I was reading on this forum that many people have had good results with it - at least what caught my attention was reducing CRP rates - which is what I'm looking for and hope that it's also something else that I can make my crohn's more calm.
> 
> JohnnyO - That was exactly what a lot of those Chinese/holistic doctors say about Crohn's.  If you can heal the body then the body will maintain crohn's.  But how is the main problem.  You are saying that Vit D also helps ? Please explain. Also please share your diets/what your daily meds/supplements are. I am very interested to know.
> 
> One of the main problems that I've found after I got CD was stress/anxiety/etc too.  I was always a person that gets easily worried about everything prior to the disease.  Now it makes me more worried when I got it - every little thing scares the crap out of me.  I am just thankful that I have my mother and my girlfriend with me.  It's hard to live with a time bomb..


I have been symptom free since October when I had a mini flare from taking a Zpack antibiotic for sinus. I then took Cipro and Flagyl for ten days and after 3 days was symptom free again. I realized this through trial and error. I have since stopped All Meds. I no longer get bi weekly abscesses from taking imminosuppresants. I no longer take Lialda which is a complete waste if money and has listed as Colitis as a side effect. Sure enough it caused me terrible cramping, abdominal pain, and diarrheah. I am no wondering if the mysterious cocktail that is standard practice keeps us sick. Last time I went untreated and sick for awhile and then the GI doc put me on cipro, flagyl, Lialda,6MP , and Prednisone. I felt better immediately but then started suffering from the side effects of the Lialda, 6MP, and Prednisone. A year or two later I realized by accident that the cipro and flagyl were the only things making me better. 

I have recently been using the D Minder app (check the Vit D thread) to get enough sun to get my Vit D levels in the upper range of healthy. I eat homemade bone broth soups in the winter and homemade fruit smoothies in the summer. Kind of a Taoist/ Chinese eat according to the season thing. I only take suppliers in cycles the way you take antibiotics. The only thing I regularly take is Vit D3 in the winter when I can't get sun, probiotics, S Boulardi, and Vut C and Zinc and Magnesium. I recently started taking Ginseng to see what affect that does. 
At the end of the day, You have to heal You. No one else is going to care enough nor has the time to do it. Diet is a big part but noticeable changes take so long people give up. Mental and spiritual health are key. 8 hours of sleep is key. Your body heals itself when you sleep. Sedentary lifestyle will kill you. None of this stuff will do much if you sit all day. You weren't designed to sit, at all. Gentle exercise and movement is all you need. Time. It took you time to get sick. It didnt happen overnight. It will take time to heal. Trial and error is the only way to figure out what will work for you. Or you can die suffering and waiting for Pfizer to come up with a pill that may make you better or may kill you. Notice the "Fatal Events" disclaimer on the Humira commercial? Good
Luck!


----------



## JohnnyRottenAppleseed

Dude my Mom is a worrier and I got it from her. It is a HUGE component of the disease for ME. I've since stopped worrying. You can find a philosophy, religion, or mental exercise to help you deal with this. See a therapist if you have insurance. Stop worrying. There is mental/spiritual components of disease. You are halfway there. Don't give up! Pray, meditate ask for healing. Practice GRATITUDE daily. It will change your attitude and your mental health. That will flow into your body. Mind Body Spirit. Learn it. Know it. Live it.


----------



## monmon218

JohnnyO ! You're what I'm aiming to be !

Were you diagnosed with CD or Colitis ? Any other complications ie: fistulas, etc etc ?

Have you ever taken Remicade/Humira/other type of those drugs ?

The reason why I'm asking is I don't feel like I have too much complications.. it's just that I had a fistula and recently another one that scare the crap out of me.  What am I to do ?! My family doctor said this "Are you taking any medication ? If not then why are you going to see the specialist ? She will be asking you to take medications as an answer to whatever you ask her."  - this is exactly why I feel that I'm stressed - the doctors often want to put you on something and that's it !

I am curious to know more about how your illness was and see if there are any resemblance with mine.  As I am Asian, I am also quite supportive to herbal and natural stuff.

I know it takes time and trial and error to get things right.  I am trying to eat healthier and be more positive with things.  

Haha - we have the same type of MOM and I am sure I got it from her as well.  I will try to worry less.. my girlfriend has often told me to do this.. but it's especially hard when you aren't feeling any different but all of a sudden your body shows some kind of weird stuff.


----------



## JohnnyRottenAppleseed

Diagnosed with Severe Ulcerative Colitis in dec 2006. Re diagnoses different doc CD in sept 2009. I was on Imuran but took myself off after I started getting severe Boils and abscesses twice a month. Then I went off all meds. Got sick again and waited until I withered down to 178 (I'm 6'1 and currently weigh 210). Then I went on 6mp and prednisone, Lialda, cipro/flagyl) I had what I thought were multiple fistulas in my peri-anal area. The cipro flagyl helped
Close these up. I suffered for years with those opening, draining, healing. They would come back all the time. Haven't come back since I've been off immunosuppresive drugs. I think they are a side effect of immunosupprive drugs.


----------



## acemagic

monmon218 said:


> acemagic - you were talking about liquid, sugar free diet ? What does that mean and how do I know when is the right time to go back to what i do ?


Hey monmon,

What I mean is if you're in pain, you need to do two things:

A) Give your bowels a break by not eating foods that aggravate your gut and
B) Don't eat foods that will "feel" okay, but may be making things worse

So a liquid diet for a couple of days will ensure that your body isn't digesting anything heavy in fibre, or difficult to digest, while also not making your condition any worse.

When I say a liquid diet, I don't mean a milkshake or coffee, or anything like that. Simply, herbal teas, homemade chicken broth, fresh fruit/veggie juices, etc.

In my last post, I talked about what a terrible day I had yesterday. Worst day in a year. Today, I've had nothing but tea, water, chicken broth and freshly squeezed juice. I'm hungry, but I feel like a million bucks, compared to yesterday. Just like a cut on your arm, the more you pick at it, the worse it gets, I'm giving my guts some time to heal up. Its difficult, because the more time you give, the hungrier you get, but a short term fast is supposed to be good for you now and again. After a couple of days, I'll SLOWLY start a re-introduction cycle where I introduce Paleo legal foods back in. I won't jump right to high fibre, like a salad, but I'll have a half a piece of chicken, maybe a soft fruit, etc etc until I'm back on my feet and eating normally (at least, as normal as my diet gets).

-Adam


----------



## SN8888

monmon218 said:


> Hey SN8888 - I am not sure if the diet will ever help me.. but like I said I haven't been sticking to the diet 100%.. sometimes my mother add different sauces to the food so those might affect my stomach ? When you mean Low Carb diet - can you give me some examples ? Also what is saccharomyces bouldardii ?
> 
> [./QUOTE]
> 
> A low carb diet for me (when I'm feeling good):
> 
> Breakfast - hard-boiled eggs
> Lunch - meat (maybe deli meat or some chicken) and a simple salad (a little lettuce and some carefully selected salad dressing)
> Dinner - meat, simple salad and/or well-cooked green vegetables.
> 
> Between meals I "graze" on some carb-containing foods (as long as I am feeling ok). I can tolerate a few Fritos, small gluten-free cookies, a few M+M's, dry Corn Chex cereal.
> 
> Beverages - water, sodium-free club soda, very dilute Kool Aid (sweetened with pure Stevia powder instead of sugar).
> 
> Supplements - B complex, D, calcium (half a pill at a time), Krill oil, protiotic, S. Boulardii, maybe others?


----------



## acemagic

SN8888 said:


> A low carb diet for me (when I'm feeling good):
> 
> Breakfast - hard-boiled eggs
> Lunch - meat (maybe deli meat or some chicken) and a simple salad (a little lettuce and some carefully selected salad dressing)
> Dinner - meat, simple salad and/or well-cooked green vegetables.
> 
> Between meals I "graze" on some carb-containing foods (as long as I am feeling ok). I can tolerate a few Fritos, small gluten-free cookies, a few M+M's, dry Corn Chex cereal.
> 
> Beverages - water, sodium-free club soda, very dilute Kool Aid (sweetened with pure Stevia powder instead of sugar).
> 
> Supplements - B complex, D, calcium (half a pill at a time), Krill oil, protiotic, S. Boulardii, maybe others?



Just a brief warning: Eggs aren't always well tolerated by Crohnies. I can't handle them very well. Also, deli meat tends to have nitrates and nitrites in them: Also a crohn's no-no. Be cautious about those.

-Adam


----------



## monmon218

acemagic said:


> Hey monmon,
> 
> What I mean is if you're in pain, you need to do two things:
> 
> A) Give your bowels a break by not eating foods that aggravate your gut and
> B) Don't eat foods that will "feel" okay, but may be making things worse
> 
> So a liquid diet for a couple of days will ensure that your body isn't digesting anything heavy in fibre, or difficult to digest, while also not making your condition any worse.
> 
> When I say a liquid diet, I don't mean a milkshake or coffee, or anything like that. Simply, herbal teas, homemade chicken broth, fresh fruit/veggie juices, etc.
> 
> In my last post, I talked about what a terrible day I had yesterday. Worst day in a year. Today, I've had nothing but tea, water, chicken broth and freshly squeezed juice. I'm hungry, but I feel like a million bucks, compared to yesterday. Just like a cut on your arm, the more you pick at it, the worse it gets, I'm giving my guts some time to heal up. Its difficult, because the more time you give, the hungrier you get, but a short term fast is supposed to be good for you now and again. After a couple of days, I'll SLOWLY start a re-introduction cycle where I introduce Paleo legal foods back in. I won't jump right to high fibre, like a salad, but I'll have a half a piece of chicken, maybe a soft fruit, etc etc until I'm back on my feet and eating normally (at least, as normal as my diet gets).
> 
> -Adam


Hey Adam,

My pain in my stomach are usually very short and it's usually gone instantly.  I rarely get a punch like feeling at the anus.  I only know or guess that I'm not feeling well when I have D or small blood shown in my bowel movements.  At times I feel that I have itchy eyes as well - but seldom and so I think that's also a indicator of my crohn's.  These are the only "signs" that I've been able to pick up from being diagnosed for a year and a half when I think something is going on.

At the moment I don't know if I'm aggravating my gut or not.. but like I said whatever I consume it seems like it's taking it well.. if not then i'll get to see parts of it (leaves - when i eat vegs) in my stool.  In the past few months I've been mostly getting firm stool or at least they are formed - but i'm still not gaining weight.  So does that mean that I should try a different approach ?


----------



## monmon218

acemagic said:


> Just a brief warning: Eggs aren't always well tolerated by Crohnies. I can't handle them very well. Also, deli meat tends to have nitrates and nitrites in them: Also a crohn's no-no. Be cautious about those.
> 
> -Adam



I second all those that Adam mentioned.

From what I recall, I will have a D if I eat eggs for breakfast (even prior to the diagnoses) - especially scramble eggs.  

Also Deli meat - I love them a lot but I do find that SOME deli meat gives me Ds too so I have been trying to avoid them.  Besides.. they're considered to be "processed" meat too right ?

I am more interested in SN8888's supplement intake though.  As I am only replying on these at the moment, I always have doubts if I have enough of it.  I take a Multivitamin which i think gives me those B D stuff.. I JUST STARTED KRILL OIL - please share how this goes for you if you have compared it with normal fish oil.  I also take a Jamison brand 10 billion probiotic.  The one that you mentioned S. Boulardii - is it 1 of the strains ? I've looked at my 10 billion bottle but it doesn't have this type of probiotic in it.  I saw that Florster - a brand of probiotic - uses this strain only in their pill.  Is it that much better or worth for me to try ?


----------



## monmon218

JohnnyO said:


> Diagnosed with Severe Ulcerative Colitis in dec 2006. Re diagnoses different doc CD in sept 2009. I was on Imuran but took myself off after I started getting severe Boils and abscesses twice a month. Then I went off all meds. Got sick again and waited until I withered down to 178 (I'm 6'1 and currently weigh 210). Then I went on 6mp and prednisone, Lialda, cipro/flagyl) I had what I thought were multiple fistulas in my peri-anal area. The cipro flagyl helped
> Close these up. I suffered for years with those opening, draining, healing. They would come back all the time. Haven't come back since I've been off immunosuppresive drugs. I think they are a side effect of immunosupprive drugs.


Oh JohnnyO.. I feel like I'm walking your shadows...  but I will make sure I take note of what you have experienced.  If ever my fistulas go bad.. I will only go for cipro/flagyl.

And that's one of the reasons why I'm afraid of the immunosuppresive drugs like 6mp/humira/remicade ! It gets you one way or the other !  Most importantly i work with nursing homes and children with disabilities... how can I have no immune system at all !  And my specialist kept on saying oh you'll be fine..:ybatty:


----------



## acemagic

monmon218 said:


> Hey Adam,
> 
> My pain in my stomach are usually very short and it's usually gone instantly.  I rarely get a punch like feeling at the anus.  I only know or guess that I'm not feeling well when I have D or small blood shown in my bowel movements.  At times I feel that I have itchy eyes as well - but seldom and so I think that's also a indicator of my crohn's.  These are the only "signs" that I've been able to pick up from being diagnosed for a year and a half when I think something is going on.
> 
> At the moment I don't know if I'm aggravating my gut or not.. but like I said whatever I consume it seems like it's taking it well.. if not then i'll get to see parts of it (leaves - when i eat vegs) in my stool.  In the past few months I've been mostly getting firm stool or at least they are formed - but i'm still not gaining weight.  So does that mean that I should try a different approach ?


Hey monmon,

I've never gotten any feeling near my anus...especially not a punch...all my pain is around the stomach/lower adbomen area. Throughout my crohn's journey, I've had everything from cramps, to burning, to bloating, etc etc. The pain will likely manifest itself differently person to person. I'm glad to hear your pain doesn't last very long.

The reason you're getting the leaves in your stool (I do too by the way) is because your body isn't digesting it properly. Now, that being said, lettuce is pure fibre and us humans can't digest fibre, so don't worry "too" much about it. It's the same reason people see corn in their stool. The concern is whether or not you're absorbing the nutrients into your body. If you're underweight, low energy, pale, etc etc, these are all indicators that your body isn't getting the nutrients it needs to be healthy. Since all veggies are high in fibre, and we do a worse job of absorbing nutrients than most, that's why I recommend juicing your veggies instead. Juicing them breaks everything down for you, so your body just has to absorb the liquid (which contains all the vitamins anyway).

Truth be told, it sounds like you're in decent shape. You don't have a lot of pain, you have solid stools, I'm willing to bet you've never had surgery (once you do, you start having D a lot more). All I would recommend is try eating healthier. Cut out the junk food, the refined sugars, yeast, gluten, dairy, etc, and try adding juiced Crohn's friendly veggies into your diet. Crohn's aside, removing processed food and adding more vegetables can't be bad for you. And if you throw an apple into the juicer, it actually tastes surprisingly good.

Just a reminder: I was 127 lbs when I got out of the hospital post-op last May, and it took 12 months of pure eating healthy, but I weigh 135 now...that's a huge step for me, so something is working.

-Adam


----------



## Ozboz

The disease is so unpredictable.. even though I'm not in pain but I constantly worry about it and it's so depressing.[/QUOTE said:
			
		

> I find if I don't think or worry about symptoms or crohn's I have less of them or none at all. I'm a big believer in disconnecting from the negative thoughts about crohn's and thinking positively helps as well I know it's hard sometimes but staying positive helps.


----------



## ***Lisa***

Ozboz said:


> I find if I don't think or worry about symptoms or crohn's I have less of them or none at all. I'm a big believer in disconnecting from the negative thoughts about crohn's and thinking positively helps as well I know it's hard sometimes but staying positive helps.


I do think you've got something there as I've noticed when my daughter is busy visiting with friends or involved in a project, her Crohns symptoms subside. Positive thinking and staying busy is a big part of the puzzle, for sure!


----------



## monmon218

acemagic said:


> Hey monmon,
> 
> I've never gotten any feeling near my anus...especially not a punch...all my pain is around the stomach/lower adbomen area. Throughout my crohn's journey, I've had everything from cramps, to burning, to bloating, etc etc. The pain will likely manifest itself differently person to person. I'm glad to hear your pain doesn't last very long.
> 
> The reason you're getting the leaves in your stool (I do too by the way) is because your body isn't digesting it properly. Now, that being said, lettuce is pure fibre and us humans can't digest fibre, so don't worry "too" much about it. It's the same reason people see corn in their stool. The concern is whether or not you're absorbing the nutrients into your body. If you're underweight, low energy, pale, etc etc, these are all indicators that your body isn't getting the nutrients it needs to be healthy. Since all veggies are high in fibre, and we do a worse job of absorbing nutrients than most, that's why I recommend juicing your veggies instead. Juicing them breaks everything down for you, so your body just has to absorb the liquid (which contains all the vitamins anyway).
> 
> Truth be told, it sounds like you're in decent shape. You don't have a lot of pain, you have solid stools, I'm willing to bet you've never had surgery (once you do, you start having D a lot more). All I would recommend is try eating healthier. Cut out the junk food, the refined sugars, yeast, gluten, dairy, etc, and try adding juiced Crohn's friendly veggies into your diet. Crohn's aside, removing processed food and adding more vegetables can't be bad for you. And if you throw an apple into the juicer, it actually tastes surprisingly good.
> 
> Just a reminder: I was 127 lbs when I got out of the hospital post-op last May, and it took 12 months of pure eating healthy, but I weigh 135 now...that's a huge step for me, so something is working.
> 
> -Adam


Hey Adam. Thanks for your response again.  I will make sure i try to juice out the vegs - I eat mostly chinese vegs since I'm chinese.  I also eat raw apples after dinner or a snack before dinner as well at times.

To be honest.. I don't know what state I'm in.  In comparison to a lot of the other members here.. it seems like I'm suffering a lot less pain.  However, I do have 2 fistulas and also have constant discharge (mucus stuff from my bum) which I have to wear an extra pad along with my underwear.  Like you mentioned I haven't had any surgeries done yet and I am hoping that I don't have to any time soon.  I am 28 and I would want my full body for as long as I can.

With regards to solid stool.. I can only say it took me a long time to get there and it's still unstable most of the time.  I get formed stool but it will be watery at times.. and there would be some days for no reason that I have a D.

I'm hoping to gain some weight back as well. It sort of bothers me whenever people see me and ask why am I so skinny.  I wear 28'x30' jeans for male and i still probably have to wear a belt to make sure it doesn't fall off.. I used to be a good solid 29'x30


----------



## monmon218

***Lisa*** said:


> I do think you've got something there as I've noticed when my daughter is busy visiting with friends or involved in a project, her Crohns symptoms subside. Positive thinking and staying busy is a big part of the puzzle, for sure!


Hey Lisa and Ozboz.. 

I find that easier to be said than to be done.. it's hard for everyone and harder for people that are trying to be financially stable or want to start a family on top of trying to be healthy.  I know there are a lot of members here that are in the same position but in my culture and as a male figure, I'm suppose to have a stable income - it would be nice to be a good income.. but for now.. i'm looking to have a stable one.  It's due to my job nature that my income fluctuates a lot and having to deal with different people and contracts will surely affect my mood. 

I can tell you in many points of my diagnoses (only 1 and a half years..) I was deeply depressed though.  I didn't go for any diagnoses for depression or anything but I just wanted to be alone and in meltdown mode.  It didn't matter if I was invited to go to my friends' house or just heading down to dinner with my family, I just wanted to stay away.  That's why I am so astonished to read that some of the members here have to go through extra-depression as a side effect while taking some of their meds - I for sure would not be able to endure that.  I am quite a negative thinker and is too easily worried with anything. 

I am trying to learn how to "let go"/"let it be" though since I have been diagnosed with CD.  It's something that I'm still striving to learn each day.  I am on the computer a lot and I think starting today I will try to be more active on this forum.  It sort of feels pretty good when I can just freely talk about anything with CD here.  I didn't felt that way a year and a half ago.. I just wanted to be away.. maybe that day will return when something significant happens with my CD... who knows :confused2:


----------



## ***Lisa***

Monmon218:

Crohns can make you feel so isolated, I know, but don't let it take the joy out of your life. Just drop a note here anytime as we all need to talk, and we are good listeners, too.  While my daughter was in college, her four dorm roomates had no idea what she was going through - wearing adult diapers in class, running to the barhroom and not always making it in time. She always called me (I was four hours away) when she needed to vent and that is how she got through the difficult times. Those with Crohns as well as those of us who have loved ones with Crohns need to lean on each other, for sure!

Talk to you later!

Lisa


----------



## SN8888

Sorry for recommending something potentially troublesome (eggs, etc).Thanks for pointing that out.
 S. Boulardii has some risks, too. Some have an allergic reaction and, in some rare cases, a dangerous systemic fungal infection.

http://en.wikipedia.org/wiki/Saccharomyces_boulardii


----------



## UnXmas

acemagic said:


> UnXmas and monmon218: You both mentioned you eat a lot of junk food, and it sounds like you're both underweight. I can absolutely sympathize with the notion of a healthy diet causing you pain. My suggestion? Go on a liquid, sugar free diet for a few days at least. Allow your gut to heal, then slowly re-introduce foods that are better for you. If sugars and gluten/yeast are feeding the bad bacteria, you'll feel fine because the foods themselves aren't irritating, but the damage and malabsorption will get worse, resulting in more weight loss.


I eat a lot of junk in terms of variety but not in quantity so I’m not getting enough calories despite eating high calorie food. 

I don’t know whether I’d fast – since I don’t feel hunger, it wouldn’t be hard for me to resist food, but the problem is I’ve been recommended so many different diets, most of which do have a sensible theory behind them and anecdotal evidence that they work, but then they didn’t end up working for me.

I think for me to try something like that again, I’d need more scientific evidence that it would help, because in order to feel comfortable attempting it, I’d need something that made it stand out from the other recommended diets/alternative treatments. Otherwise I could go on trying different diets for ever – the only ways I’d stop experimenting would be firstly if I found a diet that worked (or brought substantial improvements), or secondly, if I just decided it wasn’t worth trying different things any more. I ended up doing the latter, which actually made me much better mentally, as I found the constant worry that I was eating something bad and the disappointment when diet after diet brought no benefits incredibly stressful. Probably I'd have had a better time with diets if I could have felt more relaxed about it. As it is I'd be wary of trying diets again unless I really believed it would work.

But isn't fasting used in mainstream medicine? Or does intravenous nutrition not allow the same kind of healing as the kind of fast you're recommending?

A while back, when I was still trying different diets, I tried an elimination diet a nutritionist who told me I had "leaky gut syndrome" recommended. It worked on similar principles to what you're describing, I think - I'd go weeks only eating very basic foods (e.g. rice), which was supposed to allow my gut to heal before I added things back one at a time to test their reaction. The basic diet really didn't help me at all, and it was sugar free. Do you think a liquid diet would be more likely to help? Or do you think the fact that going sugar free (though still eating solid food) didn't improve things indicates that I'd have no luck with a sugar free diet if it was also all liquid?

Sorry for all the questions. I just find it interesting that diets seem to benefit so many people with Crohn's but doesn't seem to help me.


----------



## UnXmas

acemagic said:


> So a liquid diet for a couple of days will ensure that your body isn't digesting anything heavy in fibre, or difficult to digest, while also not making your condition any worse.
> 
> When I say a liquid diet, I don't mean a milkshake or coffee, or anything like that. Simply, herbal teas, homemade chicken broth, fresh fruit/veggie juices, etc.


I'd starve on a diet like that, even just for a few days, there's no way it would be healthy for me to try that. This was one of the big problems I came up against when I tried to help my illness through diet before - it's not just that health foods are often high in fibre and so make symptoms worse, it's also that health foods are often so low in calories.


----------



## monmon218

SN8888 said:


> Sorry for recommending something potentially troublesome (eggs, etc).Thanks for pointing that out.
> S. Boulardii has some risks, too. Some have an allergic reaction and, in some rare cases, a dangerous systemic fungal infection.
> 
> http://en.wikipedia.org/wiki/Saccharomyces_boulardii


SN8888 - Have you tried other forms of probiotic before S. Boulardii then ?  The reason why I'm asking is - My current goals are to gain some weight.. and to decrease my CRP and ESR scores on blood tests.  I think if I can achieve those 2 things.. I am hoping that I will be in what people called "remission".

I have started Krill Oil last night but didn't have nice bowl movements though.. I'm hoping that it'll start kicking in and I want to get a blood test and see the results within 2 weeks.


----------



## acemagic

UnXmas said:


> I eat a lot of junk in terms of variety but not in quantity so I’m not getting enough calories despite eating high calorie food.
> 
> I don’t know whether I’d fast – since I don’t feel hunger, it wouldn’t be hard for me to resist food, but the problem is I’ve been recommended so many different diets, most of which do have a sensible theory behind them and anecdotal evidence that they work, but then they didn’t end up working for me.
> 
> I think for me to try something like that again, I’d need more scientific evidence that it would help, because in order to feel comfortable attempting it, I’d need something that made it stand out from the other recommended diets/alternative treatments. Otherwise I could go on trying different diets for ever – the only ways I’d stop experimenting would be firstly if I found a diet that worked (or brought substantial improvements), or secondly, if I just decided it wasn’t worth trying different things any more. I ended up doing the latter, which actually made me much better mentally, as I found the constant worry that I was eating something bad and the disappointment when diet after diet brought no benefits incredibly stressful. Probably I'd have had a better time with diets if I could have felt more relaxed about it. As it is I'd be wary of trying diets again unless I really believed it would work.
> 
> But isn't fasting used in mainstream medicine? Or does intravenous nutrition not allow the same kind of healing as the kind of fast you're recommending?
> 
> A while back, when I was still trying different diets, I tried an elimination diet a nutritionist who told me I had "leaky gut syndrome" recommended. It worked on similar principles to what you're describing, I think - I'd go weeks only eating very basic foods (e.g. rice), which was supposed to allow my gut to heal before I added things back one at a time to test their reaction. The basic diet really didn't help me at all, and it was sugar free. Do you think a liquid diet would be more likely to help? Or do you think the fact that going sugar free (though still eating solid food) didn't improve things indicates that I'd have no luck with a sugar free diet if it was also all liquid?
> 
> Sorry for all the questions. I just find it interesting that diets seem to benefit so many people with Crohn's but doesn't seem to help me.





UnXmas said:


> acemagic said:
> So a liquid diet for a couple of days will ensure that your body isn't digesting anything heavy in fibre, or difficult to digest, while also not making your condition any worse.
> 
> When I say a liquid diet, I don't mean a milkshake or coffee, or anything like that. Simply, herbal teas, homemade chicken broth, fresh fruit/veggie juices, etc.
> 
> 
> I'd starve on a diet like that, even just for a few days, there's no way it would be healthy for me to try that. This was one of the big problems I came up against when I tried to help my illness through diet before - it's not just that health foods are often high in fibre and so make symptoms worse, it's also that health foods are often so low in calories.


Hey UnXmas,

Oh wow, I can totally relate to everything you just said. Scientific research was my number 1 priority too, until I realized that there are very little scientific studies funded for the effects of food, because there's no profit in it. Drug companies develop drugs that they can patent and sell if it turns out it's helpful to people with a specific disease. Nobody can patent an apple (for example), so if it turns out that apples cure crohn's disease, no company is going to benefit from that, so why bother investing money in a study to determine if apples cure crohns?

So, unfortunately, when I was doing my research, I had to go by word of mouth, as there were very little studies available. I spoke with a few people on the forum who said they were in remission, and asked what they were doing (list of meds, dietary changes, lifestyle habits, etc), and the biggest common denominator was that they avoided grains, dairy and sugar (mostly). That's when I looked online for a diet for crohn's that eliminated those things, found the Paleo diet, and found quite a few other Crohn's sufferers who are on the diet and are having good results:
http://paleohacks.com/search?q=crohn's#axzz2SiTE8CiJ

I understand your hesitancy to try something new, especially when you mostly feel good. I was in that same boat for years and it took 4 surgeries before I changed my diet. Also, I can't even say for sure if it's doing anything, but I do feel significantly better if I stick to healthier foods and my gut isn't irritated.

As far as going on a liquid diet.... I weigh about 5 pounds more than you do, and at this very moment I've gone about 44 hours now without food, and I'm actually not even hungry because I've been drinking the juices, tea and water. I'm actually quite surprised. I thought I'd be starving right now, but I attribute the lack of hunger to the fact that I'm getting the core nutrients my body needs. The juices contain insane amounts of nutrients, so my body isn't craving anything. I watched an interesting documentary movie on juicing called "Fat, Sick and Nearly Dead" a couple of months ago. People going on juice fasts for months at a time, and their health issues completely vanishing. They lose a lot of weight too, so that is tougher for us skinny people, but I'm not saying go on it for a month. Just try giving it a couple of days if you're feeling rough.

I can't speak to intravenous nutrition because I haven't tried it personally, but from what I've heard, it's one of the most successful ways of settling a crohn's flare. It makes sense to me too. Give the gut a rest and it heals up.

Sorry if I gave you a misconception. I'm not saying going off sugar will help. I think you need to go off grains, sugar and dairy. That's the diet I'm trying to follow. Going off one or the other may not do anything. I was just suggesting that if you go on a juice fast, dont drink sugary drinks because it defeats the purpose!

-Adam


----------



## UnXmas

acemagic said:


> So, unfortunately, when I was doing my research, I had to go by word of mouth, as there were very little studies available. I spoke with a few people on the forum who said they were in remission, and asked what they were doing (list of meds, dietary changes, lifestyle habits, etc), and the biggest common denominator was that they avoided grains, dairy and sugar (mostly). That's when I looked online for a diet for crohn's that eliminated those things, found the Paleo diet, and found quite a few other Crohn's sufferers who are on the diet and are having good results:
> http://paleohacks.com/search?q=crohn's#axzz2SiTE8CiJ


I'd noticed that too, from just general observation online, that grains (especially gluten) and dairy after often identified as problem foods. And sugar too, though that's often regarded as an unhealthy food anyway, even by people without digestive problems.

I actually did give up all of those three things simultaneously, as the elimination diet I followed began with just rice, lean protein (fish, chicken, etc. - no dairy), and various fruit and vegetables. Then when I didn't have any improvements on that, the nutritionist put me on a slightly altered version without the rice - I can't remember now what the other changes were, but I'm pretty sure I wasn't on any grains, definitely not on dairy, and the only sugar I was having was from fruit.

I haven't tried the diets which are popular among people with Crohn's - paleo, scd, etc. - but having tried diets which involved excluding many of the foods that those diets also exclude, I find it hard to imagine I'd benefit much. Whereas I do do well on low fibre/low residue diets, which tend not to be seen as particularly healthy or healing because of their reliance on processed food and lack of fruit and veg. This type of diet calms my symptoms down, but I don't think it's claimed to do much about the disease itself and inflammation. So whereas other Crohn's diets seem to work on the principle that once the body is healed it will be able to tolerate foods that were difficult before, limiting fibre is something that I have to do continually, unless I risk increasing my symptoms.

Good luck with your fast! I hope you'll post the results. The only times I've been on fasts have been in preparation for surgery, which was no fun at all and usually in combination with having to clear the bowel out with laxatives, so no chance of healing the digestive system there!


----------



## monmon218

UnXmas - when you were on the elimination diet - Rice, Lean Protein, fruits and vegets, how did you feel ? what makes you feel like you weren't seeing improvements ? because of bowel movements ? lose stool ?

Cause at the moment I think I have a diet like the one that you describe (I haven't looked up on what elimination diet is) but the food that I eat throughout the day consists of (a piece of bread, avacado, seedless and skin less tomato, chicken, pork, rice, all sorts of vegs, at times apple for snack)

Now I was on that mostly throughout the last a year and a half - like you said i dont' see any improvements as my blood results are still showing inflammation and just the weekend i found another fistula.

EDIT - I have to mention that throughout my last year and a half, I have been travelling (4 to 5 times in that period) and the trips are usually 4-5 or 7 days long.  As soon as I started eating out my stool has became mud like.  But as soon as I got home i get a few firm stool days and then back to my norm (some watery stool but still have the shape and at times random D)

However with that said I believe that we all really don't know how our stomach is even with any kind of diet - we're just relying on how we feel ?  

I personally didn't feel any difference at all.. even though i'm still losing weight very very slowly.

What are you planning to do next ?  I am asking cause I am switching some of my supplements now and I am going to try my best to eliminate all types of artifical sugar/snacks.  I am going to try to have the regular meals and if i'm hungry, i'll take an apple.

I am also forcing myself to do some excercise from now on (just plain walking, twisting and turning my body, short jogs, etc) as I have been inactive in any kinds of sports prior to my diagnoses (from highschool - graduation of university - i was almost sitting everyday).

I really hope that there's something that we can do dietary wise to at least control our crohn's.  I am always nervous as I don't feel anything yet it seems like my disease is progressing - like you said - I don't feel any different - still quite okay with energy wise and I'm still working.


----------



## JohnnyRottenAppleseed

Paleo is the way to go. Sugar and grains cause inflammation.


----------



## monmon218

JohnnyO,

Maybe I should really read up on Paleo Diet ?  I am always confused with the term Sugar as people said white bread and white rice becomes sugar... I am still trying to learn what's not "sugary"

In terms of grains.. I don't eat a lot of grainy stuff i think.  

Do you believe that if we reduce the inflmmation in our body.. it will do less damage to your intestines ?

The reason why i'm saying that is cause I've always been high on inflmmation levels with my blood test.. and now I read that fish oil helps reducing inflmmation - I didn't have much good effect with it but I am going to try Krill oil now.

I just hope that if I can keep my inflammation levels down.. my crohn's can be controlled..


----------



## JohnnyRottenAppleseed

monmon218 said:


> JohnnyO,
> 
> Maybe I should really read up on Paleo Diet ?  I am always confused with the term Sugar as people said white bread and white rice becomes sugar... I am still trying to learn what's not "sugary"
> 
> In terms of grains.. I don't eat a lot of grainy stuff i think.
> 
> Do you believe that if we reduce the inflmmation in our body.. it will do less damage to your intestines ?
> 
> The reason why i'm saying that is cause I've always been high on inflmmation levels with my blood test.. and now I read that fish oil helps reducing inflmmation - I didn't have much good effect with it but I am going to try Krill oil now.
> 
> I just hope that if I can keep my inflammation levels down.. my crohn's can be controlled..


Yes Colitis and Crohn's Disease are Infammatorry Bowel Diseases. Sugar causes insulin spikes and hence inflammation. Refined carbs like bread and pasta cause inflammation. I try to eat on or two bananas a day and an apple. Fruit is anti inflammatory. Try to eat fish, organic wild caught, not farm raised. Wild salmon is best. Do your best to get nutrients from whole food and only use supplements to supplement your diet. Not an every day thing if possible. This requires a lot of time and cooking and shopping. Cannabis also is anti-inflammatory. Check the medical marijuana threads.

Also, once I got better I was and am still able to "cheat". I ate a pint of icecream last night an had a solid stool today. Imagine! I pretty much eat what I want now but avoid junk food, anything with sugar (except occasional cheats). I eat organic and grass fed butter and eggs. Not just cage free but grass fed eggs. They have twice the healthy omega fats of caged and grain fed chickens. I eat beef and lots of fish. I cook almost all of my own meals and am very picky when dining out or takeout. No chain restaurants or fast food. I cut out all soda drinks. I have one once a week maybe. When I was a kid I could drink a liter a day.


----------



## JohnnyRottenAppleseed

Our food supply is not fit for humans. Look up GMO's and avoid like the plague. Drink lots of pure mineral rich water daily. Read the Water Cure book. Water and sleep are the two most important things after breathing. Then food. If you aren't sleeping properly and are dehydrated non of the other stuff will do anything.


----------



## monmon218

Thanks Johnnyo for your comments.

I am not a big fish eater but I started to eat salmon when I was diagnosed.  I mostly rely on my fish oil pill though but I haven't had it for a while - hence now i'm going to start it again with Krill oil.

In terms of fruits my chinese doc told me that I should mainly stick with apples - banana causes gas and it's not good for me when my intestines are trying to heal.  Oranges are also acidic.. from what she told me.  I haven't been good with soda drinks.. I drank daily before diagnoses and I have cut down quite a lot since then.  I'm also a big fan of chips and candies - I can easily finish a bag or 2 within a movie.  Now I'm trying to eliminate all types of drinks but only go for Water - and if i want flavour, I go for chinese borths.  I'm also trying to cut all the chips, candies, chocolate.  It's good that I have my mother that does all the cooking for me for now so I don't have to worry about spending time to cook.

I don't think I lack water as I consume quite a lot throughout the day.  Sleep on the other hand... is something that I have a hard time to deal with. I usually sleep for 5/6 hours and I will be wide awake.  I also work in different nursing homes and centres with special needs children - from highschool till university I almost stopped all my sports.  I am trying to pick that up now so that I could get some "fresh" air or just open up my lungs more.

My whole foods at the moment are chicken and pork.  I don't eat too much of it but other than that I try to eat vegs.  I don't think I'll be taking any marijunna anytime soon.

I am trying to focus on reducing my inflammation and hoping to get back my solid stool soon.. I'm also trying to tell myself not to worry so much daily and finding a way to learn how to cope with all the stress..


----------



## JohnnyRottenAppleseed

5-6 hours of sleep. Boom! There you go. Try to address that and see if yor symptoms improve. There could be underlying anxiety causing insomnia. Your body can't heal without adequate sleep. 5-6 hrs is only healthy for short periods for healthy people not people who are trying to heal. Try meditation, exercise, martial arts, yoga.


----------



## monmon218

Haha JohnnyO,

I feel so much more comfortable after talking to you.  Thank you so much.  I will make sure I get more sleep if possible.  I've never been a big sleeper ever since I was young and I can only sleep in one way so if I turn left or right, I will wake up automatically.  I have to sleep flat down.

I am starting to excercise again (even though I'm not sure if it's considered as excercise).. but I am forcing myself to walk around my neighbourhood first thing after I wake up.. and then walking after each meal.  Going to do 20 mins of that each time and hopefully I can increase and fall in love with it more later..


----------



## LaLaNapa

I second everything you said, Adam!  

I've been Paleo for just about a year.  Whenever I do cheat and sneak in some wheat or corn (darn that popcorn addiction), I can feel the "flaming gut".  And I also notice I get more anxious and depressed which in turn winds me up, and makes me more likely to have an episode of symptoms.  

It was so hard to make the change to the diet, but now it seems the easiest thing and I actually enjoy food for the first time in decades.  This diet, and LDN and supplements prescribed by my ND, have really made a turn around in this disease for me. (My cholesterol levels even improved despite copious bacon eating.)

I'm too lazy to do the juicing, but I have done it before and the documentary you reference is an excellent reference for anyone who wants to try it.  We've been sold the Big Business and Big Government line of "you need grains" for so long that people can be scared to try just vegetables, but a body can survive and thrive!


----------



## UnXmas

monmon218 said:


> UnXmas - when you were on the elimination diet - Rice, Lean Protein, fruits and vegets, how did you feel ? what makes you feel like you weren't seeing improvements ? because of bowel movements ? lose stool ?
> 
> Cause at the moment I think I have a diet like the one that you describe (I haven't looked up on what elimination diet is) but the food that I eat throughout the day consists of (a piece of bread, avacado, seedless and skin less tomato, chicken, pork, rice, all sorts of vegs, at times apple for snack)
> 
> Now I was on that mostly throughout the last a year and a half - like you said i dont' see any improvements as my blood results are still showing inflammation and just the weekend i found another fistula.
> 
> EDIT - I have to mention that throughout my last year and a half, I have been travelling (4 to 5 times in that period) and the trips are usually 4-5 or 7 days long.  As soon as I started eating out my stool has became mud like.  But as soon as I got home i get a few firm stool days and then back to my norm (some watery stool but still have the shape and at times random D)
> 
> However with that said I believe that we all really don't know how our stomach is even with any kind of diet - we're just relying on how we feel ?
> 
> I personally didn't feel any difference at all.. even though i'm still losing weight very very slowly.
> 
> What are you planning to do next ?  I am asking cause I am switching some of my supplements now and I am going to try my best to eliminate all types of artifical sugar/snacks.  I am going to try to have the regular meals and if i'm hungry, i'll take an apple.
> 
> I am also forcing myself to do some excercise from now on (just plain walking, twisting and turning my body, short jogs, etc) as I have been inactive in any kinds of sports prior to my diagnoses (from highschool - graduation of university - i was almost sitting everyday).
> 
> I really hope that there's something that we can do dietary wise to at least control our crohn's.  I am always nervous as I don't feel anything yet it seems like my disease is progressing - like you said - I don't feel any different - still quite okay with energy wise and I'm still working.


I felt worse in the sense that my main symptoms at the time - diarrhoea, general stomach discomfort and feeling overly full on small amounts of food all deteriorated rapidly and kept getting worse the longer I stayed on the diet. I was underweight when I went on the diet but lost weight on it, to the point where it became dangerous.

JohnyO:

Refined foods like sugar do not cause pain or inflammation for me. And eating all organic, whole foods make me worse if they contain fibre. Eating only low fibre versions makes me feel no different from eating a low fibre diet which includes a lot of processed food. But a diet which includes process food is cheaper and tastes nicer, and it allows me to eat socially with family and friends. It is generally cheaper too. And it does not cause me constant worry about what I'm eating or make me feel confused and disappointed when I'm getting sicker. So I am better off not going on a diet that includes only organic and/or whole foods, etc. and instead eating my "normal" diet.

I agree with you about sleep though. Getting enough sleep is so important to me. I slept over ten hours last night though, which might be taking it a bit too far!


----------



## monmon218

Hey UnXmas,

Thanks for sharing your experience with your diet.  To be honest, I don't recall me having worse symptoms when I was eating snacks (candies, coke, ice cream, chips, etc) - but there are so many members here that said that the sugar gives a good living environment for bacterias or something so that it increases inflmmation (correct me if i'm wrong please).  In fact, I recall that I will get some firm bowel movements when I'm enjoying a can of coke and a bag of chips.

In terms of Fullness - Am I the only person that doesn't feel hungry/fullness ?  I can usually eat at anytime.. and very seldomly I will feel bloated.  I think there must be a general idea of how much we should consume in terms of food - if anyone know please share.. cause I can keep on eating and I dont' feel full - and usually I just try to eat until 80%ish (from feeling).

My bowel movements are very weird as well - just last night i had a firm bowel.. but today in the morning as I went to the bathroom, it's watery but stool are formed.  I would think that the morning washroom visit should mostly be firm cause i consume my probiotic after my dinner.. 

I wonder if there's a tutorial in learning how to sleep.. I really need to learn how to as I am always a short sleeper ever since I was young.


----------



## JohnnyRottenAppleseed

Sugar causes inflammation for everyone. Scientific fact. Eat what you want of course.


----------



## UnXmas

monmon218 said:


> Hey UnXmas,
> 
> Thanks for sharing your experience with your diet.  To be honest, I don't recall me having worse symptoms when I was eating snacks (candies, coke, ice cream, chips, etc) - but there are so many members here that said that the sugar gives a good living environment for bacterias or something so that it increases inflmmation (correct me if i'm wrong please).  In fact, I recall that I will get some firm bowel movements when I'm enjoying a can of coke and a bag of chips.
> 
> In terms of Fullness - Am I the only person that doesn't feel hungry/fullness ?  I can usually eat at anytime.. and very seldomly I will feel bloated.  I think there must be a general idea of how much we should consume in terms of food - if anyone know please share.. cause I can keep on eating and I dont' feel full - and usually I just try to eat until 80%ish (from feeling).
> 
> My bowel movements are very weird as well - just last night i had a firm bowel.. but today in the morning as I went to the bathroom, it's watery but stool are formed.  I would think that the morning washroom visit should mostly be firm cause i consume my probiotic after my dinner..
> 
> I wonder if there's a tutorial in learning how to sleep.. I really need to learn how to as I am always a short sleeper ever since I was young.


I never feel hunger either, but I do feel full. I seem to have various degrees of bloating, fullness and discomfort in my stomach.  I didn't even get hunger when taking prednisone. I usually eat by the clock - breakfast when I get up, lunch at midday, dinner in the evening, or whenever someone else is cooking and the meal is ready, and various snacks and high calorie drinks through out the day. 

If you're worried about eating to much perhaps that would help - limiting your meals and snacks to specific times, so you only eat a certain number of things each day? I have this problem too - because I always feel full and so end up losing too much weight. It also helps me to make sure I get the right sized meal by either going by the guidance you often find on packaging (e.g. my breakfast cereal box says 30 grams is one portion), or by asking someone else - friends or family - to dish out my helping for me, if it's a home cooked meal.

I've no idea what sugar does to Crohn's inflammation. I don't think eliminating it from your diet will cause significant changes - I don't think it would result in remission, for example. Whether it affects symptoms, I'm not sure. I know that I felt worse giving up sugar, but I also know everyone's illness is different and responds to foods in different ways. And it wasn't the lack of sugar that made me feel worse - it was the foods I was having instead of sugar and refined foods.

I take medication to help me sleep. I know that some people dislike taking too many meds, but it works wonders for me.

JohnnyO

Hi, I realised when rereading my last post I might have phrased it better - I didn't mean to dismiss your approach to food, sorry if it came off that way.


----------



## Rockdawg

Ace, have you ever tried Quinoa? I know it is a grain but I have heard from people that it doesn't really bother them.  Same with brown rice...


----------



## UnXmas

monmon218 said:


> What are you planning to do next ?  I am asking cause I am switching some of my supplements now and I am going to try my best to eliminate all types of artifical sugar/snacks.  I am going to try to have the regular meals and if i'm hungry, i'll take an apple.


What I'm trying next is chocolate.  I've just bought some multipacks of chocolate bars to try and gain some weight. 

How are you doing with your current diet now? You really deserve to feel better, when you're doing so much to try and get your body healthier. I hope your efforts pay off.


----------



## Little Bear

JohnnyO said:


> Yes Colitis and Crohn's Disease are Infammatorry Bowel Diseases. Sugar causes insulin spikes and hence inflammation. Refined carbs like bread and pasta cause inflammation. I try to eat on or two bananas a day and an apple. Fruit is anti inflammatory. Try to eat fish, organic wild caught, not farm raised. Wild salmon is best. Do your best to get nutrients from whole food and only use supplements to supplement your diet. Not an every day thing if possible. This requires a lot of time and cooking and shopping. Cannabis also is anti-inflammatory. Check the medical marijuana threads.
> 
> What is fructose if not sugar?!! (otherwise a brilliant post)
> Glucose = single
> Fructose = double
> Sucrolose = glucose + Fructose
> Carbohydrate = many sugars


----------



## SN8888

glucose = six-membered ring (pyranose)
fructose = five-membered ring (furanose) with a different arrangement of hydroxy groups, etc
sucrose = glucose+fructose disaccharide
sucralose = artificial sweetner (that's bad for my gut)


----------



## Crohnie1023

Hi I am new to this forum but not to Crohn's disease. I actually came here today because my son looks like he is about to get his dx. I was fascinated by the talk about the Paleo diet. I was dx is 1997 with Crohn's and have had only two major flares. I am on the anti-Crohns diet. Very high fiber, protein, fruit/veggies and complex carbs. I am not Paleo but big on super foods and antioxidants. Everything I put in my mouth I try and think what can this food do for me. Is it an anti- inflammatory super food, organic, non-GMO, no trans fats etc... I even take FIBER supplements everyday amongst others. It has worked great for me. Just had my semi-annual colonoscopy and was clean as a whistle. On pathology activity is noted but nothing visible to the naked eye. I remember when I first introduced high fiber foods...I would throw them up...it took time to train my GI tract but I did it. Maybe it's just luck but my friend has severe Crohn's and her diet is all low residue refined crap. I applaud you guys who are trying to heal yourself.


----------



## JohnnyRottenAppleseed

Little Bear said:


> JohnnyO said:
> 
> 
> 
> Yes Colitis and Crohn's Disease are Infammatorry Bowel Diseases. Sugar causes insulin spikes and hence inflammation. Refined carbs like bread and pasta cause inflammation. I try to eat on or two bananas a day and an apple. Fruit is anti inflammatory. Try to eat fish, organic wild caught, not farm raised. Wild salmon is best. Do your best to get nutrients from whole food and only use supplements to supplement your diet. Not an every day thing if possible. This requires a lot of time and cooking and shopping. Cannabis also is anti-inflammatory. Check the medical marijuana threads.
> 
> What is fructose if not sugar?!! (otherwise a brilliant post)
> Glucose = single
> Fructose = double
> Sucrolose = glucose + Fructose
> Carbohydrate = many sugars
> 
> 
> 
> True but they don't cause blood sugar spikes in the same manner. HFCS causes much greater spikes than sugars found in fruit. Same with cane sugar.
Click to expand...


----------



## Pentasa

I believe diet is a huge factor. I have been doing paleo since january when I was diagnosed. Whenever I deviate from the diet and eat processed, refined or MSG, etc. I will start to see bloody diarrhea and my eczema will flare up.

Recently I've been doing some reading on a whole new approach to diseases and the book states that everything is due to pollutants and parasites. For the past 4  days I have been taking black walnut tincture 5mL twice daily, eating 4 garlic cloves, 30g of ginger and 3 tbsp of turmeric and my bowel movements are becoming frequently solid with noticeably less blood (or none).

for anyone interested in reading the book it's called _The Cure for all Diseases_ by Dr. Hulda Clark


----------



## acemagic

JohnnyO said:


> True but they don't cause blood sugar spikes in the same manner. HFCS causes much greater spikes than sugars found in fruit. Same with cane sugar.


This is definitely true. Fruit sugars are absorbed into the body easily.



			
				JohnnyO said:
			
		

> Ace, have you ever tried Quinoa? I know it is a grain but I have heard from people that it doesn't really bother them. Same with brown rice...


Hey Johnny,

I have tried it, but it was before my Paleo days. Quinoa is unfortunately still a no-no on the Paleo diet.  Here is a quote from Robb Wolf (founder of the Paleo diet) as to why:

"Quinoa is botanically not a grain, but because it has evolved in a similar biological niche, Quinoa has similar properties to grains, including chemical defense systems that irritate the gut. In the case of Quinoa, it contains soap-like molecules called saponins. Unlike gluten, which attaches to a carrier molecule in the intestines, saponins simply punch holes in the membranes of the microvilli cells. Yes, that’s bad. Saponins are so irritating to the immune system that they are used in vaccine research to help the body mount a powerful immune response. "

-Adam


----------



## LovingtheCoast

Hi acemagic -
I'm brand new to this forum (this is my first post), but I have been following this thread closely.  I am going to be starting a paleo diet after completing a 4 week elimination diet (I just started week four and it's been a wild ride), followed by a three day broth fast to give my gut a complete rest before I fully commit to paleo (I'm 90% of the way there already, I just need to give up my organic brown rice breakfast cereal!)  Thanks for sharing and keeping us updated on your progress.  

Are there any paleo websites/blogs that you look to for recipes that you could recommend?  I've poured over Robb Wolf's materials and I think he articulates the paleo diet very well.

Thanks!


----------



## Little Bear

Www.robbwolf.com (and "the paleo solution" book is a must) 
Www.thepaleodiet.com (Loren, wolf's mentor)


----------



## Ozboz

I keep trying fruit and veg but it just hurts gives me bad D and gas Im trying to heal myself naturally but the diet side is holding me back i think i do take herbs and supplements but i know if i had a better diet it would help things a lot more.


----------



## Crohnie1023

Personally I think quino is a great superfood grain...full of protien, fiber and nutrients and so versatile. I also like ezikiel bread. It is the quality of your carbs that counts IMO. I love carbs, I just traded the good ones instead of the bad. But the same could be said for meats too. I will eat organic free range chicken but would not eat bacon. To me there is nothing beneficial in cured,marbled meats full of nitrates. It is all in what you are trying to achieve I guess. I am a nurse and have other health issues ( mild coronary artery disease~inherited ) so I am super conscious about eating an anti-inflammatory diet. But don't think I don't ever cheat. I like dark chocolate and sweets as much as the next person...I just try and pick the best option.


----------



## monmon218

UnXmas said:


> What I'm trying next is chocolate.  I've just bought some multipacks of chocolate bars to try and gain some weight.
> 
> How are you doing with your current diet now? You really deserve to feel better, when you're doing so much to try and get your body healthier. I hope your efforts pay off.


Hey UnXmas,

It's been 1 week that I've stick with vegs, pork, chicken, salmon, apples, broath, limited white rice, white bread only. (crackers to fill my stomach while I drink the chinese med)

I have been having some random aches and loose Ds (maybe because I was having stressful days or taking the chinese herbal medication) - but this morning i finally had some firm stool (little bit of other things).  I am still trying to get my firm stool back.

I have been persistant with my excercise thou - mostly 15-20 mins walk/hand movements after each meal. I believe that helped cause I was able to fall asleep more.. but still only requires about 6-7 hours of sleep and I will be wide awake. 

Oh how much do I wish I could take some chocolates.. I was going to the mall to get some manuka honey yesterday and was trying to avoid some of friends that work there - but the more I hide the more they come - saw them with a nice lunch and their first comment was "OMG - You looked so skinny! What's wrong ?"

I hate to answer that question or even just listening to it all the time. 

I am still trying to find a way to gain weight...


----------



## acemagic

LovingtheCoast said:


> Hi acemagic -
> I'm brand new to this forum (this is my first post), but I have been following this thread closely.  I am going to be starting a paleo diet after completing a 4 week elimination diet (I just started week four and it's been a wild ride), followed by a three day broth fast to give my gut a complete rest before I fully commit to paleo (I'm 90% of the way there already, I just need to give up my organic brown rice breakfast cereal!)  Thanks for sharing and keeping us updated on your progress.
> 
> Are there any paleo websites/blogs that you look to for recipes that you could recommend?  I've poured over Robb Wolf's materials and I think he articulates the paleo diet very well.
> 
> Thanks!



I use www.paleohacks.com very frequently. It's basically a forum (similar to this one), where you can ask a question and have it answer by other Paleo people. Msot of them are there for weight loss, but there is plenty of info on Crohn's.




			
				OzBoz said:
			
		

> I keep trying fruit and veg but it just hurts gives me bad D and gas Im trying to heal myself naturally but the diet side is holding me back i think i do take herbs and supplements but i know if i had a better diet it would help things a lot more.


I can definitely relate to this! I get the exact same way if my guts are in rough shape. Remember my salad story from a couple of weeks ago? I was already hurting from eating pizza, and then ate salad the next day because I wanted to go back onto my diet, and I had to take 2 Tylenol 3's because it was so terrible. I felt bloated, awful and gassy. So I went onto a liquid diet for 2 days, and gradually increased food intake, and now I can eat a salad without issue. I think it's all a matter of bowel rest and healing before your intestines can handle healthy foods once again.

-Adam


----------



## JohnnyRottenAppleseed

To gain weight Try eating grass fed butter (kerygold)and lots of meat and potatoes. Organic polenta/Grits are good too with butter.


----------



## SN8888

My first attempt at using diet to control GI symptoms years ago was to follow the yeast connection candida diet (on advice of a friend). It was a very strict no-carb diet that was hard to follow. It didn't immediately fix my GI tract (which wasn't that bad at the time anyway), but after a week or so I no longer felt like I had the flu all the time (extremely tired, achy, etc) and my GI symptoms started to improve. Not long after that I found that sacchomyces boulardii helped me more than any other probiotic or supplement and that once I've been on it for a while, some cheating on the low-carb part of my diet was tolerable.
I know some people here are very sick and maybe past the point where diet alone is going to help, but for people who aren't too sick or don't have too much damage yet, I think that extreme diets are better than strong drugs, even though it's kind of sad to sit at a table and drink water while your friends have pizza and beer....


----------



## JohnnyRottenAppleseed

I too have noticed benefits from S Boulardii


----------



## monmon218

SN8888 and JohnnyO,

Could you please provide me with which product do you take that contains S Boulardii ?

I would really want to give this a try.

I always thought it would be best to have a variety of strains of probiotic, but if this particular strain helps... I wouldn't mind checking it out.

By benefits do you mean weight gain, less pain, d, etc ?

Please share !


----------



## JohnnyRottenAppleseed

It's actually a beneficial Yeast that can keep bad bacteria at bay. It's called S Boulardii

From Wikipedia:

Saccharomyces boulardii is a tropical strain of yeast first isolated from lychee and mangosteen fruit in 1923 by French scientist Henri Boulard. It is related to, but distinct from, Saccharomyces cerevisiae in several taxonomic, metabolic, and genetic properties.[1]S. boulardii has been shown to maintain and restore[citation needed] the natural flora in the large and small intestine; it is classified as a probiotic. However, in immunocompromised and immunosupressed patients, it can cause disease in the form of a systemic blood infection, fungemia, or localized infection[citation needed].


----------



## monmon218

Hey JohnnyO

So does it come in a probiotic pill form ? or is it something else ?

I can only find a brand called "Florster" that has this "S Boulardii"

Are there other brands that I could try ?  The Florster is off the counter in Toronto but it's quite expensive - I believe it's around $1 for a pill.


----------



## SN8888

Amazon.com (here in the US) sells Jarrow brand S Boulardii cheaper than Florastor.


----------



## monmon218

Hey SN8888,

Jarrow Formula - Saccharomyces Boulardii + MOS - 5 Billion Organisms Per Capsule

Is that the one ?


----------



## SN8888

Yes. I take that one every evening.


----------



## monmon218

Thanks SN8888.  It's too bad that amazon.ca (canada/toronto) does not carry this product. 

I have no idea where I could find it - AND THE US prices are soo much cheaper than the Canadian Market.. 

Do you take other probiotic supplements throughout the day then ?


----------



## SN8888

I take Digestive Advantage Intensive Bowel Support every morning, though I am not sure if I really need to. It's a more typical bacterial probiotic. I've gone a week without it and it didn't seem to change anything. I think it's reccommended more for IBS.


----------



## UnXmas

monmon218 said:


> Hey UnXmas,
> 
> It's been 1 week that I've stick with vegs, pork, chicken, salmon, apples, broath, limited white rice, white bread only. (crackers to fill my stomach while I drink the chinese med)
> 
> I have been having some random aches and loose Ds (maybe because I was having stressful days or taking the chinese herbal medication) - but this morning i finally had some firm stool (little bit of other things).  I am still trying to get my firm stool back.
> 
> I have been persistant with my excercise thou - mostly 15-20 mins walk/hand movements after each meal. I believe that helped cause I was able to fall asleep more.. but still only requires about 6-7 hours of sleep and I will be wide awake.
> 
> Oh how much do I wish I could take some chocolates.. I was going to the mall to get some manuka honey yesterday and was trying to avoid some of friends that work there - but the more I hide the more they come - saw them with a nice lunch and their first comment was "OMG - You looked so skinny! What's wrong ?"
> 
> I hate to answer that question or even just listening to it all the time.
> 
> I am still trying to find a way to gain weight...


It sounds like you're doing great with the exercise, but will you be able to gain weight while limited to those foods? Or is it that you're hoping to settle your symptoms down with the diet first, and add more things later? Sorry, you've probably said this already.

I've had comments like that, but usually from strangers. People on the street shout out "anorexic" - that's happened to me at least three times. I think people who know me are so used to seeing me underweight that they don't expect anything else.

Chocolate is working great for me.  I hadn't eaten it for a very long time, I'm not really sure why, I think I imagined it to be too rich and filling (I hate feeling so overly full all the time). But tasting it again after a long time without made me realise it's good to eat it, even if it does fill me up.  I actually had a chocolate bar for breakfast this morning. I know I'm trying to gain weight, but even I'm not sure that chocolate bars for breakfast is that healthy. 

I hope your improvements continue and that you'll be able to expand your diet soon.


----------



## monmon218

Hey UnXmas,

Thank you for your support.  At the moment gaining weight and settling my symptoms are my priority.  I am trying hard to make sure I eat well - but my D symptoms seems to be reappearing again.  I am not sure what other food I should introduce even when my bowel movements are twice a day now (even with the D).  I am not sure if my gut is irritated or is D part of the schedules.. but I am hoping to eat a larger variety of food soon.  I am not sure if it's rice or bread that's giving me the problems but I have been eating these two types of food ever since I was 5 or so.

In terms of chocolate, I would love to have some too.  I have just been limiting myself to eating any kinds of "Snacks".  At the moment I only have crackers as my snack...

Do you take Dark chocolate or just regular ?  I did read an article somewhere that eating dark chocolate does regular some of your bacterias in your gut or something..


----------



## Ozboz

Monmon I just bought theese cheap and seem to do the job well I also take lactoasilis lgg at night but here's the link to where I get mine from
http://www.evitamins.com/saccharomyces-boulardii-now-60-caps-23869


----------



## UnXmas

monmon218 said:


> Hey UnXmas,
> 
> Thank you for your support.  At the moment gaining weight and settling my symptoms are my priority.  I am trying hard to make sure I eat well - but my D symptoms seems to be reappearing again.  I am not sure what other food I should introduce even when my bowel movements are twice a day now (even with the D).  I am not sure if my gut is irritated or is D part of the schedules.. but I am hoping to eat a larger variety of food soon.  I am not sure if it's rice or bread that's giving me the problems but I have been eating these two types of food ever since I was 5 or so.
> 
> In terms of chocolate, I would love to have some too.  I have just been limiting myself to eating any kinds of "Snacks".  At the moment I only have crackers as my snack...
> 
> Do you take Dark chocolate or just regular ?  I did read an article somewhere that eating dark chocolate does regular some of your bacterias in your gut or something..


I had just ordinary milk chocolate. I've read somewhere that dark chocolate has some health benefits too. Maybe I'll give that a try as well.

As for which food's giving you problems (and again, I'm sorry if you've said this already somewhere further back on the thread), have you been tested for coeliac disease, as that could give you problems with bread if it's bread from wheat. I wouldn't have thought rice would be responsible as it's often cited as a food that's easy to digest, white rice especially. 

Some foods that I find easy to digest:

Avocado - not a huge number of calories, but far more than most fruits and veg, and a low fibre diet makes it hard to find suitable fruit and veg.

Peanut butter - this is one of favourites for putting weight on - it's easy to digest (as long as it's the smooth kind) and full of calories, but the "good" kind of fats.

Are you alright with dairy/lactose? If you are, I find puddings like ice cream and custard are much easier to eat than solid foods, if you're feeling ill and don't feel like eating.

And another thing that's not too hard to digest is low fibre breakfasts cereals, like cornflakes, rice krispies, etc.

Did you say you're trying to eliminate processed food? If so I guess some of these foods aren't helpful, but they're not that unhealthy, so if you need some other foods for a bit while you're gaining weight, they might be useful.


----------



## monmon218

Hey Ozboz - Thank you for sharing that with me ! I will look in to ordering some !

UnXmas - I finally broke my "diet" yesterday and ate some peanut butter ice cream.  It felt great as I was limiting myself to eat a certain few things last week.

I am alright with dairy and lactose items - I have never experienced a problem with it.  

I also ate two pieces of bread with almond butter.

This morning it seems like my stool is formed but still runny.

My gut is so weird. It's hard to predict what's the right or wrong food.


----------



## UnXmas

monmon218 said:


> My gut is so weird. It's hard to predict what's the right or wrong food.


Mine too. It took me forever to work out that too much fibre makes me worse. You'd think it would be easy to tell, but when reactions are delayed and other factors beside diet influence symptoms, it really is a long road of trial and error.

I always tended to assume symptoms were reactions to food when most of the time, for me, they really aren't

I hope you continue to enjoy your food and feel better.


----------



## UnXmas

I looked up the health benefits of dark chocolate. This is from the Cleveland clinic web site: 



> Flavanols are the main type of flavonoid found in cocoa and chocolate. In addition to having antioxidant qualities, research shows that flavanols have other potential influences on vascular health, such as lowering blood pressure, improving blood flow to the brain and heart, and making blood platelets less sticky and able to clot.
> 
> These plant chemicals aren’t only found in chocolate. In fact, a wide variety of foods and beverages are rich in flavonols. These include cranberries, apples, peanuts, onions, tea and red wine.


http://my.clevelandclinic.org/heart/prevention/nutrition/chocolate.aspx

I'm not sure if those benefits are particularly related to Crohn's in any way, but I really feel like having dark chocolate now!


----------



## acemagic

Hey guys,

Be careful when doing all the introductions of new foods, especially junk foods! Dairy, peanut butter, and breakfast cereals are all not paleo friendly and could irritate the gut in the long run. I find I can't do cereal at all any more.

Regarding the weight gain: Weight loss is a matter of malabsorption. Us crohnies can't absorb much because our intestines are in such rough shape. For a NORMAL person, a diet of meat and veggies, high in protein, lots of calories, combined with some light exercise will make them gain weight. But because our guts aren't in good shape, that won't work for us without healing ourselves first.

I guess what I'm saying is... would you rather feed your sick gut junk food to gain weight (like chocolate, chips, dairy, etc) or heal the gut, which will make it absorb things better, and then gain weight by eating chicken, steak, rice and veggies?

Option 1 will only work in the short term. I'm speaking from experience here too. 12 years of crohns. The only time I ever gained weight was when I gobbled down copious amounts of junk food. The result was surgery every 3 years. When I started Paleo a year ago, I was 127 lbs, and I STAYED 127 lbs for about 9 months. I had resolved to just never gain any weight. I weighed myself a couple of weeks ago and Im suddenly 135 lbs. My theory is that my gut is getting significantly better and starting to absorb nutrients again.

-Adam


----------



## UnXmas

acemagic said:


> Hey guys,
> 
> Be careful when doing all the introductions of new foods, especially junk foods! Dairy, peanut butter, and breakfast cereals are all not paleo friendly and could irritate the gut in the long run. I find I can't do cereal at all any more.
> 
> Regarding the weight gain: Weight loss is a matter of malabsorption. Us crohnies can't absorb much because our intestines are in such rough shape. For a NORMAL person, a diet of meat and veggies, high in protein, lots of calories, combined with some light exercise will make them gain weight. But because our guts aren't in good shape, that won't work for us without healing ourselves first.
> 
> I guess what I'm saying is... would you rather feed your sick gut junk food to gain weight (like chocolate, chips, dairy, etc) or heal the gut, which will make it absorb things better, and then gain weight by eating chicken, steak, rice and veggies?
> 
> Option 1 will only work in the short term. I'm speaking from experience here too. 12 years of crohns. The only time I ever gained weight was when I gobbled down copious amounts of junk food. The result was surgery every 3 years. When I started Paleo a year ago, I was 127 lbs, and I STAYED 127 lbs for about 9 months. I had resolved to just never gain any weight. I weighed myself a couple of weeks ago and Im suddenly 135 lbs. My theory is that my gut is getting significantly better and starting to absorb nutrients again.
> 
> -Adam


I do really appreciate what you're saying. But it never worked for me. I didn't follow a specific diet like paleo, but I did spend a long time following nutritionists' advice, eating only organic whole foods, eliminating dairy, gluten, and all junk food, with sugar coming only from fruits. My diet was limited to fruit and veg and lean protein. For a while I ate nuts and seeds as well, but they gave me diarrhoea so bad that I could tell they were not good for me and stopped eating them.

Not only did it not make me feel better or heal my intestine, it made me feel a lot worse. I really couldn't manage to take in enough calories on that diet. I need food to be calorie-dense and palatable, because I have such a poor appetite. I don't object to the taste of most fruit and veg or other healthy foods, but when my digestion is really bad and my stomach hurting, it's so much easier to eat a bowl of ice cream or some plain biscuits than it is to sit down and eat a plate of fish and vegetables.

I tried variations of the healthy diet you describe extensively, and it just never worked. My intestines just didn't heal. My weight drops to the point where I have a bmi of only 12 or 13 sometimes. Even if it _was_ possible to heal my intestine with diet, I just can't take the risk of losing weight on the possibility that later I'll be in a better state and able to eat more.

I've now been eating a conventional normal diet for a few years, and I'm better than I ever was eating super-healthy. I still have a lot of trouble gaining weight, but at least I'm eating food that's easy and tastes nice, so the pressure of knowing I must get in more calories each day is less than it would be if my diet was very restricted.

Eating junk in moderation really is the best type of diet for me, both physically and mentally.


----------



## Susan2

I find that rolled oats porridge is really filling and seems to sooth my gut. I add blackstrap molasses because of all the minerals that it contains - both it and the rolled oats are organic if I can afford it.


----------



## JohnnyRottenAppleseed

My buddy has crohns and je just had his first solid stool in over a year. He has been on SCD for 6 weeks and no gluten or dairy for 8 weeks.


----------



## LovingtheCoast

For those of you who are following a paleo diet, are you eating eggs?  I have been researching paleo vs. autoimmune paleo and eggs seem to be considered a no-go for AI Paleo.  

I am going to be re-introducing eggs later this week after a 4-week elimination diet and I'm hoping they agree with me.  If I can't eat eggs, I have no idea how I'll get through breakfast!


----------



## Little Bear

Hi loving the coast 
I've stopped eggs until its under control and ill reintroduce when I am in remission. Unfortunately I am un diagnosed and in a flare (they know I have IBD) but I'm waiting for them to send me for tests before they'll treat me so paleo is all I have. Every time I eats
Stomach balloons  paleo seems to be working alongside researching anti-inflammatory foods (eg fish oil tablets supplementing) but I am in desperate need of medical help! I've followed paleo strictly for a yr or two on the run up to competitions and it makes
Me feel amazing  of course now this has happened ill be following it forever. I hate this disease: it doesn't like doing any of the things I like doing (eating, eating sugar, eating quickly)


----------



## Ozboz

I tried s.boulardi and I took it very slow with introducing it and it's like it made me constipated very hard too pass stool at keast my stools are firm and heavy again it's just excruciatingly painful passing them and spending ages on toilet.

Does anyone know why this could be


----------



## SN8888

Ozboz said:


> I tried s.boulardi and I took it very slow with introducing it and it's like it made me constipated very hard too pass stool at keast my stools are firm and heavy again it's just excruciatingly painful passing them and spending ages on toilet.
> 
> Does anyone know why this could be


I am not sure why exactly that would happen - hopefully it would be a sign of things getting better (less urgency). I guess the real question is what is the safest, most gentle way to improve the situation (stool softeners?). For me, vitamin supplements containing magnesium can send me to the bathroom presumably due to an osmotic effect (which seems like it should be more gentle than fiber supplements or something like that).


----------



## mccindy

acemagic - I think UnXmas makes an excellent point.  What works for one person doesn't always work for another.  There are many kinds of "good" food versus "junk" food.  I can't do the Paleo diet either because right now I cannot tolerate raw veggies or hard protein like beef and pork.  I tried for months and got worse and worse.  Just because a food is considered "banned" by one diet doesn't make it bad.  Paleo does not allow peanut butter, but it is a good source of healthy fat and protein for those who can tolerate it and need the calories and fat.  White rice doesn't have as much nutritional value as others, and it is a carb, but again it is a decent food source for those who can't find much to eat that is tolerated (like myself).
Believe me, I'd love to eat my big, raw-veggie-piled-up salads again.  I miss the meats I used to eat.  Chicken and rice and fish get pretty boring.  But I know my body, and it's telling me that I cannot eat those things because I have a lot of pain when I try.  Kefir milk is excellent for the gut, easily tolerated, and another good source of calories as well.

I think the lesson here is to find what works for each individual.


----------



## Ozboz

well I gave the probiotics a rest for a few days. Then today was like I took a prep for a colonoscopy Ihaven't seen this much stool come out in ages and all I wanted to do was sleep all day then I was in the toilet for an hour and so much stool reckon I passed a kilo of stool easy what the hell is going on at least was mostly formed and no blood thank goodness


----------



## mccindy

It makes me wonder if probiotics are like some other things -work well as long as you take them, but then if you stop does the "bad" bacteria build up again?  Or maybe they were just helping to move things along for you.  Do you drink kefir milk or eat yogurt?


----------



## Ozboz

No dairy intolerant messes me up badly


----------



## mccindy

To which part of dairy are you intolerant?  Kefir milk is 99% lactose free, and the casein is destroyed in the fermentation process as well.  I am lactose intolerant and casein gives me pain and bloating as well, but I tolerate kefir milk well.  I make my own yogurt with lactose-free milk and tolerate that very well also.  I can't eat cheese or eat even lactose-free dairy products if there is casein present, but those two products (kefir and the homemade yogurt) both do very well for me.  Kefir has the added bonus of giving you the probiotics as well.


----------



## acemagic

LovingtheCoast said:


> For those of you who are following a paleo diet, are you eating eggs?  I have been researching paleo vs. autoimmune paleo and eggs seem to be considered a no-go for AI Paleo.
> 
> I am going to be re-introducing eggs later this week after a 4-week elimination diet and I'm hoping they agree with me.  If I can't eat eggs, I have no idea how I'll get through breakfast!


Hey LtC!

Eggs on AI Paleo is a no-no, unless your body can tolerate it. For me, it's cut and dry...if I eat eggs, I have to go to the bathroom almost immediately afterwards, like clockwork. I try to avoid them, but I still give in once in a while. scrambled seems to be less irritating than other methods of cooking.

For breakfast, I've been having juic, fruits, and the PaleoKrunch cereals from www.stevesoriginal.com

-Adam


----------



## acemagic

mccindy said:


> acemagic - I think UnXmas makes an excellent point.  What works for one person doesn't always work for another.  There are many kinds of "good" food versus "junk" food.  I can't do the Paleo diet either because right now I cannot tolerate raw veggies or hard protein like beef and pork.  I tried for months and got worse and worse.  Just because a food is considered "banned" by one diet doesn't make it bad.  Paleo does not allow peanut butter, but it is a good source of healthy fat and protein for those who can tolerate it and need the calories and fat.  White rice doesn't have as much nutritional value as others, and it is a carb, but again it is a decent food source for those who can't find much to eat that is tolerated (like myself).
> Believe me, I'd love to eat my big, raw-veggie-piled-up salads again.  I miss the meats I used to eat.  Chicken and rice and fish get pretty boring.  But I know my body, and it's telling me that I cannot eat those things because I have a lot of pain when I try.  Kefir milk is excellent for the gut, easily tolerated, and another good source of calories as well.
> 
> I think the lesson here is to find what works for each individual.


Hey mccindy!

I couldn't agree more. I'm simply advising caution. Although things might feel well tolerated in the short term, they may be doing damage in the long term. An extreme, but somewhat relevant example is smoking. I've heard that crohn's sufferers who smoke actually get some benefit from it, because it relaxes them, but obviously, in the long term, it could be doing some damage, even though you don't feel it in the short term.

If you're following a diet like paleo or SCD and you start re-introducing new foods, but still feel okay, it doesn't necessarily mean that it's good for you, or your gut. It could be doing long term damage.

That being said, I don't really have any sage advice on how to reintroduce new foods safely, besides doing it excruciatingly slowly (introduce 1 new food a month or something), but even that isn't flawless. It'll be a struggle.

-Adam


----------



## steffers

Thanks for your insight, low fibre is of course a great way to control the disease. And you have obviously taken a lot of time to research.

But what you are actually talking about here is 'managing' symptoms...not actually 'curing' the disease.

And unfortunately a lot of us go through terrible re-lapses no matter what we eat.

My longest period of remission:
14-22
High doses of Imuran
Too much alcohol (and the occasional recreational drug i'm ashamed to admit here)
Basic diet (Sara lee chocolate gateau, student food, beans...i can't particularly remember to be honest) 

Latest re-lapse 22-25
Very good balanced diet with little to no fibre. 
Very limited to no alcohol
No drugs. (Not the good ones anyway )

Having said all that, of course I am going to revise my diet post surgery because I don't want to go through it anymore. I do believe I can manage my disease better. But western medicine isn't withholding a cure here, there simply isn't one at present.


----------



## LovingtheCoast

acemagic said:


> Hey LtC!
> 
> Eggs on AI Paleo is a no-no, unless your body can tolerate it. For me, it's cut and dry...if I eat eggs, I have to go to the bathroom almost immediately afterwards, like clockwork. I try to avoid them, but I still give in once in a while. scrambled seems to be less irritating than other methods of cooking.
> 
> For breakfast, I've been having juic, fruits, and the PaleoKrunch cereals from stevesoriginal
> 
> -Adam



Thanks Adam.  I've reintroduced eggs over the last few days and I have pain and bloating all over again.  It's discouraging after being so diligent and dedicated on the 4 week elimination diet, and three-day bone broth fast.  During the fast, all pain vanished (for the first time in years, I felt pain free!) and then BOOM!  pain is back.  Dull, terrible evil crohn's ache.  I guess eggs are out for me  

Is the paleokrunch cereal okay for you?  With ingredients like raw seeds and coconut, I feel like I would be setting myself up for pain-city and a partial blockage (I have a stricture and try and eat generally low fibre/low residue).

Also - how are you doing with paleo these days?  Are you feeling well?


----------



## mccindy

I tolerate scrambled eggs well.  Sometimes I get nauseous eating them though.  The most well-tolerated breakfast I've found is homemade yogurt mixed with skinless canned peaches.  Most other foods seem to upset my stomach in the morning.


----------



## UnXmas

It's always interesting to see how different everyone's bad foods are. Eggs are just fine for me. Breakfast is one of the easiest meals for me, as there are lots of breakfast cereals I can tolerate (no bran or muesli or ones with nuts etc.), and dairy is no problem so I can have ordinary cows milk, or I can easily eat toast from white bread, butter's fine for me too and most jams, spreads, etc. so I have quite a lot of options to choose from.


----------



## LovingtheCoast

Acemagic -
How are things going for you?  I've been Paleo for 6 weeks now and I am feeling discouraged.  My bowel movements are completely abnormal - I will goes days without, and then have one that's loose and not good.  My energy is great at times, but other days I have a food hangover if I've eaten anything that is even slightly non-Paleo (ie. a paleo choc chip cookie - the choc chips having dairy/sugar in them).

Any advice?  Are you doing well?  

Also - I've had three partial obstructions since I started this diet (in about 4 weeks)  This is more than ever, and close together.  I am keeping my diet as low residue as possible b/c of my stricture, but I am starting to feel sort of helpless....


----------



## acemagic

Hello all,

The results are in.

I just got back from my Colonoscopy a few hours ago.

It's been a year long journey of trying my best to stick with a healthier diet, introducing Low Dose Naltrexone, and even some medical marijuana, among other things. One full year of avoiding any "approved drugs".

Before I get to the results, I have to admit to everyone that although I've been trying to stick with a regimen of eating Paleo friendly, I have had my slip ups and my temptations. I still am doing my best, but there have been times where I either had no options or just didn't feel like cooking on a particular night, so I couldn't stay strict.

I've also been on 4.5 mg of Low-dose Naltrexone for the last 9 months.

Okay, so here are the results:

Unfortunately, my crohn's is back. Only one year after surgery. I don't often feel it (very little cramping), but I have terrible gas some days, depending on what I eat. I think going back to the drawing board is in order. I think 9.5 months of LDN is enough to prove to me that it isn't doing anything, (sorry LDN friends!), so I think I will discontinue.

I'm going to continue striving forward with the dieting, and really trying to be a little more strict on myself. If nothing else, it has boosted my energy levels here and there.

I'm going to try and find a natural "reset switch" for myself. Maybe a cleanse or something. I feel like my body is out of whack. Along with Crohn's I've been developing these tonsil stones and my tongue has a white coating and a coppery taste. I feel like my body is trying to tell me something, but I'm not smart enough to know what it is. I've got an appointment with a naturopath on Friday, so hopefully I come back with something.

I'm also going to try and introduce more digestive enzymes & more probiotics.

But I also now need to listen to my doctor and probably try Humira, which scares the crap out of me, due to it's cancer causing side effects. But I think I'm out of options.

So there you have it! Energy wise, I feel fine, but my body is starting to crap out again. I'm sure that's not the result that a lot of you wanted to hear (neither did I), but I promised to stay honest with all of you throughout this journey. I hope that those of you who are having success on Paleo continue to stick to it and report back with any news you find. Thanks to everyone who has followed this thread along, and I'll continue to post information as I find out more.

Cheers!

-Adam C


----------



## ***Lisa***

Hi Ace:

The white coating on your tongue is most likely trush (candida) due to an imbalance of yeast in your body. My daughter goes to a osteopathic doctor and she recommended anti-candida tablets, probiotics, L-Glutimine & S. Boulardii. She has continued to take vitamin D3 & folic acid for the past six months, which stopped the bleeding she was experiencing. She recently stopped taking the D3 & folic acid for two days and the bleeding started up again, so she will not stop her D3 supplements ever again. As with you, her GI has recommended Humira, but she continues to refuse to take it. She still has runny stools many times a day, but is hoping that between her diet & supplements, she will eventually get that under control.

Please continue to post your experiences as I, and I am certain many others, have gained many insights as a result of your posts.

Wishing you all the best!

Lisa


----------



## DougUte

Ace, I am so sorry to hear this. I had the same concerns about Humira that you do, but I have been on it for two years and the Crohns is in remission. I had surgery in 2010, and was put on Humira after the surgery.

Please let us know how things go for you.


----------



## Ozboz

Acemagic if you want an natural anti-candida supplement I'm using this stuff called pau d'arco for a detox please google it it may help I have a link about pau d'arco but can't find it. It's meant to be a very good herb for crohn's


----------



## Rockdawg

Hey man, sorry to hear about this, I was really pulling for you. I will say that I was on Remicade for 5 years, and those were 5 of the healthiest years of my life, I could literally function as a normal person, with the exception of going to get the infusions every 8 weeks. But, like many others, side effects (for me, Multile Scleorsis or perhaps something similar that looks like MS) forced me off of it I know it was working because a couple of months after I was off of it, I went downhill pretty fast. Like you, I am trying to go the path of diet, but I am also now on Tysabri ( grrrrrrrr.) because it treats Crohn's and MS, and I must admit, I feel great once again.

These meds are like an oxymoron. They are so wonderful, unless they kill you with cancer or something like that (hopefully people are not too scared by that comment, I have a very dry sense of humor). And to be completely honest, if I had to do the Remicade all over again, i actually might, because that is how good it made me feel....I know it doesn't work for everyone, but for me, I had forgotten how great it was to have energy and not spend days holed up in bed with fevers and the D.

Now, I am just waiting for Vedolizumab to be approved (it is like Tysabri but "allegedly" a lot safer)

Sometimes I wonder if having Crohn's is like having a broken leg. What I mean by that is, there may be 10 different people with broken legs, all of which broke their leg in a different way.  I am starting to be convinced that there are MANY different factors that can lead to Crohn's, and that is why so many people have so many different responses to so many different things (Paleo, imuran, biologics, LDN, SCD, etc.)

Right now, I am doing Vegan plus fish, and I have to admit, I feel great (except when people around me are eating delicious things like bacon, etc.) I supplement with vitamin D (we should ALL be doing that), S. Boulardi, exercise, and cannabis. Next step, meditation, as I have been researching this a lot lately.

Wow, long post, sorry for the book.


----------



## acemagic

Rockdawg,

Your post inspires me. You mentioned you're on a very restrictive diet and feeling great. So I guess my question is: why bother with meds if you're responding to dietary changes?

-Adam


----------



## Rockdawg

Ace,
It went down like this. I was on the Remicade and doing great. Then, my right eye started to hurt and I started to lose the ability to see color out of it. I had to have an MRI, which revealed some lesions on my brain (this is how they diagnose MS). They immediately took me off the Remicade, and told me I needed another MRI in 6 months. The 2nd MRI showed more lesions, at which point the diagnosis of MS was made. During this time, I started getting sicker and sicker...running really high fevers and feeling Crohnsy. Missing a lot of work and ended up in the emergency room because of the fever. At that point, I went on the Tysabri, because it treats both MS and Crohn's.  I also started a vegan diet plus fish, as I read a lot about it in relation to Western disease (see the China Study, etc.)

Don't know if it is diet or Tysabri, but I am doing great now...hope that helps.


----------



## Rockdawg

The crux is this...I refuse to be on the Tysabri for more than a year, because of the potentially fatal side effects.  Well, in December, that will be a year, so I am not really sure how this will play out, but for now I feel great.


----------



## AaronMSB

Rockdawg said:


> These meds are like an oxymoron. They are so wonderful, unless they kill you with cancer or something like that (hopefully people are not too scared by that comment, I have a very dry sense of humor)


I developed Hodgkin's Lymphoma while on 6mp and Remicade. Not trying to scare anyone either, but the side effects are very real.  That said, it didn't kill me and I lived to fight Crohn's another day.  This time with Methotrexate.

Thanks for investigating the paleo diet for us, Adam.


----------



## TwanXP

Hello All, 

Spent the last hour or so reading through this thread and registered specifically to comment. My journey is fairly similar to Adam's and I wanted to share a parallel experience.

I was diagnosed with CD in 2009 and shortly thereafter I developed an abscess that I thought was a hemmorhoid for the better part of 3 years. When I told my GI he didn't even bother to look he just prescribed me a suppository. Glad I don't go to him anymore. Anyways, my CD was fairly manageable after the initial diagnosis and I made the mistake of not taking it very seriously. Last August I moved to Boston where my new GI immediately told me the hemorrhoid was a fistula and scheduled surgery. It was after this that I decided to take matters into my own hands. 

I didn't want to start on Remicade or Humira because of the scary side effects so I started on a very strict SCD in November of 2012. I had immediate success. I was having one BM a day and it was typically solid. I sang the praises of SCD wherever I went as I had never felt better in my life. In my 7 months of remission, I never cheated once as this is key to the diet working. 

In May 2013, while in remission, I decided to try acupuncture. That very night I had D for the first time since starting the diet. I immediately made tweaks thinking I could get things under control. I soon found out I couldn't. My symptoms became worse than they were even before my diagnosis. Blood in my stools, insane cramping, and just a general miserable existence. No doctor could offer an explanation of why acupuncture might have triggered this, most just guessed it was a timing thing. 

After 3 weeks of suffering, I contacted my GI who started me on Entocort. Slight improvements, but far from normal. 2 weeks later he switched me to Prednisone. Again, slight improvements but the side effects are hell. I can't sleep and the bloating and gas pains have returned. To make matters worse, SCD had helped me drop from a chubby 205 to a healthy 165 and now that I am flaring, I am down to 147 and cant do anything to stop it. I have resorted to spooning coconut oil and avocado to try to keep weight on.

My GI is now pushing for Remicade. I am obviously disheartened because I just fought a war for 8 months to avoid just that. My last alternative has been turning to some integrative doctors who are looking more at the root cause rather than treating my symptoms. I spoke with a Dr. for over an hour today who flat out told me "SCD/PALEO/GAPS do not work." She claims that these diets allow way too many carbs in the form of fruits and honey that essentially just break down into sugar. Why it worked for me for so long and then suddenly failed, I have no idea. She is working up a new diet for me that will further restrict things, taking out fruits and high sugar veggies such as beets and carrots. This was already a trying 8 months so I am pretty bummed about restricting my diet further. We also discussed the possibility of fecal transplant and some other stuff as well. All in all, I don't know what to think. I am trying to get an appointment with an integrative Dr. in NY almost 4 hours away who has had great success treating patients with digestive enzymes, fatty acids and a bunch of stuff I don't understand. 

I am hoping for one more shot at remission before caving in to the Remicade and risking lymphoma and all the other terrible side effects. I'll try to come back and update this thread to let people know what I learned after I meet with this doc. But yea, just my story so far...


----------



## acemagic

Twan,

Wow. Thanks for sharing this. Certainly disheartening. Hopefully it's not that the Paleo/GAPS/SCD don't work, I've heard WAY too many comments that speaks to the contrary online.... but they might just not work for some people (namely, us). I've been on STRICT SCD for the last 5 days and no changes. Still getting gas & bloating, still getting D. Mind you, I've had 4 resections and my gall bladder out and a colonoscopy a couple of weeks ago that shows that my crohns is back. I might just get D for the rest of my life. Who knows.

Im grasping at straws, but defintiely not giving up yet. I'm on Cod oil, L-Glutamine, LDN, SCD/Paleo, digestive enzymes, probiotics, a candida cleanse and I just did a stool test for my Naturopath. I'm really really trying to be the guinea pig for this stuff, but if things don't pick up soon, I might have to go the humira route. I'll keep you posted and I think I speak for everyone when I say we appreciate you posting, and look forward to hearing more about your progress. I'm hopeful that if we all share these kinds of experiences, we'll be that much closer to finding something that works!

-Adam


----------



## Beach

Years ago a co-worker swore to me a number of times that acupuncture was the best cure for aches and pains.  I should go.  So, I thought what the heck, I'll give it a try, go where she does and see if helps a little.  Figured it couldn't hurt.  

Rather odd place to say the least.  I would have run out after the chanting music was turned on and the guy began making strange statements.  My only problem is he first placed many needles into the bottom of my feet!  I didn't feel the needles when they went in, but certainly could see them and figured I'd feel it if I got up and tried to leave quickly!  :lol:

Good luck with the new diet your doctor is working up.  Hope it helps.    

Another diet idea you could take a look at is Dr. Hunters.  He's been published a few times about using diet ideas, liquid and then elimination diets, to obtain remission in Crohn's patients.  Ran across a Daily Mail article about his work, with a claim of around 90% success rate in patients.    

His sight:

http://crohns.org.uk/ 

&

"How to tackle Crohn's Disease without the help of drugs"

http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html


----------



## TwanXP

Adam, I agree and I found it infuriating that she would just say that they "don't work" especially when it clearly did work for the better part of a year. She should have been a bit more sensitive and positioned it as "it might not work long term if you allow too many carbs and sugars as part of the diet." This is certainly not an opinion I haven't heard before, as I have read some experiences of people simply ingesting too much of one thing and having a setback. When the diet was working, I was having a fruit smoothie almost every night because they are delicious. It retrospect, that was probably just way too much sugar even though it was all coming from fruit. The problem with the diet for me is once you cut those things out, what is left? The past few days I have been experimenting with simply cutting down on those high carbs fruits and veggies. I did some research online about high carb fruits and found raisins to have an absurd amount of carbs. I wish I had known because I was also having a box of raisins with lunch every day and snacking on them at night. I am hoping that if I can stick to the diet while removing fruit, and high sugar veggies like beets and carrots, I might see some results. That would at least give me some hope that I can turn this around without the drugs. 

Losing honey is going to be tough for me though, we use honey in so many SCD recipes to make nice little sweets and things of that nature that really make the diet tolerable. I guess I'll just wait to see what kind of diet she has drawn up for me. 

For the rest of us, I think it's important that we don't focus on the possibility that the diet doesn't work, but think about it as, maybe we need a diet tailored specifically for US. We all know Crohn's comes in many shapes and colors and while some of us might tolerate unlimited fruits or red meat, some may not. We just have to figure out what works for US. Thanks again for sharing, your experiences inspire me to not give up this fight and to keep looking for answers. Maybe sharing information will get us closer to that "normal" life we are all striving for


----------



## ***Lisa***

Welcome TwanXP - Thank you for sharing your story & please continue to post updates. My 20 year old daughter took Remicade for just under three years but has been med-free since October 2012, just trying to control her symptoms with diet & supplements. It been rough, and her GI is pushing Humira, but she refuses to take any more meds and she has my full support. It's odd because just today she received a fedex package in the mail telling her, "Congratulations! You have been approved to receive a year of Remicade FREE for one whole year!" Ah, no thanks. We are not going down that road again. You can keep your meds, even if they are "free."

Take care.

Lisa


----------



## rmickam

Hi, My Mom has been suffering with this desease for many years. i AM determined not to loose her to this. I will watch your post and I am also going to find the Paleo diet and get her started. Thanks 





acemagic said:


> Hey guys,
> 
> I've taken about an hour to write the following information out to you. I want it to be super concise, but easy to read. I hope you can get through it all because  I think it will be important for everyone on this site. Over the last 3 weeks, I have read almost every posting on this website, in every category. I've read books on Crohn's disease, diets, and looked at all the different medications available to us. I've literally spent about 40 hours, simply reading everything I can and taking down key information. I've done this because I've been laid up in hospital for the last 3 weeks, having undergone my third and hopefully final resection of bowel. And I want to share what I've discovered with you. I know there is a TON of information out there, half of which contradicts the other half, and it's nearly impossible to weed through it all (unless you have 3 weeks with nothing else to do). So here goes:
> 
> 1- Diet IS a factor in treating your disease. I'll talk about why I'm so certain of this a little later in this post. Many western doctors feel that this is not the case, but I have been listening to my Western doctor for 14 years, have gone on every medication available to us from Prednisone to Remicade, and still have had 3 resections. Once I accepted that *maybe* the western docs don't know everything there is to know about the disease, I was able to look further into the role of diet. And here is what I've found:
> 
> 2- First and foremost, I found Robert747. He is an active user on this forum who has been in remission for about 13 years (no small feat). From age 40 to age 50, he was in a complete remission and from ages 50 to 53, his Crohn's has slowly crept back into his life. I asked him to provide me with a list of his general food intake from ages 40-50 and his intake from ages 50-53 to see if anything has changed in the last 3 years. Here is what he sent me:
> 
> 40 to 50
> 
> Dairy Average to high
> Grains Low
> Meats Average
> Raw vegetables / Fruit High (juicing)
> Sugar Average to low
> 
> 50 to 53
> 
> Dairy Average to high
> Grains High
> Meats Average
> Raw vegetables / Fruit Low to medium
> Sugar Average to low
> 
> Based on this list, I started looking into grains as a potential cause of Crohn's disease, since that was the biggest change in his diet. And what I found out was pretty astonishing.
> 
> 3- The SCD diet, The Paleo diet, the LOFFLEX diet...they all in some way remove grains and/or fibre and/or dairy from the diet, and they all seem to have some degree of success. The most success lies within the strictest diet: The Paleo diet. I literally can't find anyone on this forum that has said the Paleo diet did not work for them. Every person who I've spoken to and read about on this forum seem to be in a complete remission (with no medication or very little medication)  if they can stick to a strict Paleo diet. There is a moderate degree of successes and failures with the SCD Diet, but it allows a significant amount of dairy in the diet, whereas Paleo does not. If you have SERIOUSLY tried the Paleo diet for 30 days and it didn't work for you, then please feel free to comment, but even a google search of "Paleo doesn't work" didn't come up with any IBS related results, just weight loss ones.
> 
> 4- For those unfamiliar with it, the Paleo diet essentially states that processed foods (such as dairy, grains and refined sugars) are relatively new to the human digestive system and humans haven't completely adapted to digest these foods yet. It makes sense from an evolutionary standpoint and is backed up by the fact that our diseases (IBS, Crohn's and colitis) never existed before we began cultivating grains and milking cows. For those who are underweight (such as myself), a Paleo diet seems to help with weight gain, and for those who are overweight, it appears to be very successful with helping weight loss.
> 
> 5- My best educated guess is that there are 3 types of foods: Crohn's CAUSING, Crohn's IRRITATING and SAFE foods. Crohn's CAUSING foods are foods that will bring back the disease no matter what stage of health you are in. These foods include Grains (not just gluten, but wheat, corn, rice, etc), dairy and processed sugars. However, these foods don't actively HURT us when they're being digested, which is why a "low residue" diet prescribed by doctors (lots of noodles, rice, and white bread) feels just fine when we're on it, but does nothing to remove the disease itself. Crohn's IRRITATING foods are high fibre foods such as raw fruits and vegetables, seeds, nuts. This is why when a person has ACTIVE disease (aka, a flare-up), we can't seem to stand raw fruits and vegetables. It's because the high fibre content of these foods irritates the active crohn's in our digestive tracts. Since my surgery a few weeks ago, I am Crohn's free (for all intents and purposes), so I have vastly increased the intake of my fruits and vegetables (raw) and I'm finding very very little ill effects. I have gotten the occasional cramp just before a bowel movement, but that's it. The 3rd type of food is crohn's SAFE, which from what I've gathered, seems to include chicken, fish, and most fruits/vegetable juices (watch out for acidic juices such as pineapple or tomato or juices containing pulp!). This will neither irritate active crohn's, nor will it make the disease any worse. This also supports the juice diets that we know can be successful at bringing ourselves back to health from a flare-up.
> 
> 6- Finally, stress seems to be a major factor in contributing to the disease. I haven't really determined its exact role, but definitely try to do some moderate exercise, yoga or meditation. I HATE exercise with a passion (I'm a computer geek!), but I'm going to do my damnedest to try and go for a 20 minute walk every day for starters and move to some weight bearing exercises over time.
> 
> Now guys, I'm not a doctor. But my personal doctor is world renowned at being a leading expert in Crohn's (he was the guy who brought Remicade onto the market and conducted the clinical trials), and not even HE knows what causes the disease. I'm sick of letting this disease rule my life and I absolutely refuse to put my family and friends through the weeks of hospital visits and suffering that we both endure every time I have to go back. I've already lost 3 feet of intestine and am vowing to do everything in my power to not lose any more. I'm going to do my best to fully commit to the Paleo diet and I will come back to all of you with HONEST results. If I'm totally and completely wrong, I will let you know and I will commit to reporting back every few days or weeks with progress. If you want to join me, I'd certainly appreciate the support. If you're currently in a flare, my advice is to buy a good juicer and juice fast for at least a few days (and maybe have some SCD legal chicken soup - no noodles!) to get your gut healed. Report back with any results (good or bad!). I hope we can tackle this thing and get some people disease free.
> 
> I also want to say thank you to Robert747 for his awesome communication and support. I'll be in touch, and feel free to email me or PM me at any time.
> 
> Sincerely,
> 
> Adam C
> Acemagic@shaw.ca


----------



## 723crossroads

TwanXP said:


> Hello All,
> 
> Spent the last hour or so reading through this thread and registered specifically to comment. My journey is fairly similar to Adam's and I wanted to share a parallel experience.
> 
> I was diagnosed with CD in 2009 and shortly thereafter I developed an abscess that I thought was a hemmorhoid for the better part of 3 years. When I told my GI he didn't even bother to look he just prescribed me a suppository. Glad I don't go to him anymore. Anyways, my CD was fairly manageable after the initial diagnosis and I made the mistake of not taking it very seriously. Last August I moved to Boston where my new GI immediately told me the hemorrhoid was a fistula and scheduled surgery. It was after this that I decided to take matters into my own hands.
> 
> I didn't want to start on Remicade or Humira because of the scary side effects so I started on a very strict SCD in November of 2012. I had immediate success. I was having one BM a day and it was typically solid. I sang the praises of SCD wherever I went as I had never felt better in my life. In my 7 months of remission, I never cheated once as this is key to the diet working.
> 
> In May 2013, while in remission, I decided to try acupuncture. That very night I had D for the first time since starting the diet. I immediately made tweaks thinking I could get things under control. I soon found out I couldn't. My symptoms became worse than they were even before my diagnosis. Blood in my stools, insane cramping, and just a general miserable existence. No doctor could offer an explanation of why acupuncture might have triggered this, most just guessed it was a timing thing.
> 
> After 3 weeks of suffering, I contacted my GI who started me on Entocort. Slight improvements, but far from normal. 2 weeks later he switched me to Prednisone. Again, slight improvements but the side effects are hell. I can't sleep and the bloating and gas pains have returned. To make matters worse, SCD had helped me drop from a chubby 205 to a healthy 165 and now that I am flaring, I am down to 147 and cant do anything to stop it. I have resorted to spooning coconut oil and avocado to try to keep weight on.
> 
> My GI is now pushing for Remicade. I am obviously disheartened because I just fought a war for 8 months to avoid just that. My last alternative has been turning to some integrative doctors who are looking more at the root cause rather than treating my symptoms. I spoke with a Dr. for over an hour today who flat out told me "SCD/PALEO/GAPS do not work." She claims that these diets allow way too many carbs in the form of fruits and honey that essentially just break down into sugar. Why it worked for me for so long and then suddenly failed, I have no idea. She is working up a new diet for me that will further restrict things, taking out fruits and high sugar veggies such as beets and carrots. This was already a trying 8 months so I am pretty bummed about restricting my diet further. We also discussed the possibility of fecal transplant and some other stuff as well. All in all, I don't know what to think. I am trying to get an appointment with an integrative Dr. in NY almost 4 hours away who has had great success treating patients with digestive enzymes, fatty acids and a bunch of stuff I don't understand.
> 
> I am hoping for one more shot at remission before caving in to the Remicade and risking lymphoma and all the other terrible side effects. I'll try to come back and update this thread to let people know what I learned after I meet with this doc. But yea, just my story so far...


They have great success with fecal transplants. I would do that if I were you. Some are instantly better! Go for it!


----------



## 723crossroads

rmickam said:


> Hi, My Mom has been suffering with this desease for many years. i AM determined not to loose her to this. I will watch your post and I am also going to find the Paleo diet and get her started. Thanks


Even back in Bible days their main staple was bread. But, it was unleavened bread, no yeast!! Yeast is the problem in carbs! Rice never hurt anyone and it is a carb. This is obvious to me. Too many fruits can be bad, but if you juice and take out the fiber part, it is good for you. Just not too much.Veggies too.


----------



## 723crossroads

Beach said:


> Years ago a co-worker swore to me a number of times that acupuncture was the best cure for aches and pains.  I should go.  So, I thought what the heck, I'll give it a try, go where she does and see if helps a little.  Figured it couldn't hurt.
> 
> Rather odd place to say the least.  I would have run out after the chanting music was turned on and the guy began making strange statements.  My only problem is he first placed many needles into the bottom of my feet!  I didn't feel the needles when they went in, but certainly could see them and figured I'd feel it if I got up and tried to leave quickly!  :lol:
> 
> Good luck with the new diet your doctor is working up.  Hope it helps.
> 
> Another diet idea you could take a look at is Dr. Hunters.  He's been published a few times about using diet ideas, liquid and then elimination diets, to obtain remission in Crohn's patients.  Ran across a Daily Mail article about his work, with a claim of around 90% success rate in patients.
> 
> His sight:
> 
> http://crohns.org.uk/
> 
> &
> 
> "How to tackle Crohn's Disease without the help of drugs"
> 
> http://www.dailymail.co.uk/health/article-1076594/How-tackle-Crohns-Disease-help-drugs.html


I am leary of acupuncture due to it's origin of ancient gods and spirits. I won't do it because of that!


----------



## crohnsbegone

Very informative and will be on top of this...


----------



## SN8888

Rice is bad for me - anything starchy can be trouble (though it can take a few days to see the effect).
My best results were from a strict no starch, low sugar diet (along with Saccharomyces boulardii).


----------



## acemagic

I'm not sure if I agree with what you've posted 723... The SCD diet and Paleo diet both take out any bread, unleavened or not. Although Paleo allows for *some* rice, it's more of a once a month treat... not to be taken all the time.

I was actually in the same boat as you with acupuncture, but I watched a full blown documentary on www.documentaryheaven.com about acupuncture, and they actually found that it does physically do things to you! They measured brain activity and noticed a visible change between people who got acupuncture and those who didn't. It was actually really interesting to watch. They showed a Chinese woman going through open heart surgery, while AWAKE. Her only pain relief was acupuncture. Pretty intense stuff.

Small update on myself: I decided to stick to the SCD diet for 4 day (the "intro" diet, where I had nothing but soup and homemade beef patties and homemade gelatin for 4 days. Also, after reading this article published 2 months ago about Marijuana and Corhns, I also started taking some of that.
http://digitaljournal.com/article/350495

The results? I'm about a week in, and yesterday I only had 1 bowel movement, and it was mostly solid!!!!! That's a first in a very long time. Today I only had 1 bowel movement too, but it was more liquidy. But still... I might be seeing improvement!!

-Adam


----------



## Jennifer

acemagic said:


> Mind you, I've had 4 resections and my gall bladder out and a colonoscopy a couple of weeks ago that shows that my crohns is back. I might just get D for the rest of my life. Who knows.


I'm sorry but for one Crohn's isn't just a battle with "diarrhea." You've had four resections and your major concern is diarrhea? Not colon cancer (assuming you still have your colon), short bowel syndrome, malnutrition, more surgery or death even? 

I'm glad that you may entertain the idea of trying Humira in the future but I'm really curious as to how much bowel you're willing to risk loosing not to mention endangering your own life before trying a medication that may help get you into remission. Yes all medications come with side effects yet that doesn't mean you'll get all of them or any for that matter. Often times leaving the disease untreated will cause much more harm than the possible side effects from medication.

I wish you good health in the future and hope that you continue testing to keep track of how you're doing inside.


----------



## acemagic

Hey Jennifer,

My 4 resections have occurred despite being on every medication available, besides Humira. The last year of my life I have come to the realization that I'm not getting better, despite the medications. I've listened to my doctors for 14 years and have still had 4 resections. That's why I started looking closer at the role of diet. A quick search of the Specific Carbohydrate diet online will come up with hundreds of testimonials from Crohn's patients who have had incredible success with it. I'm not saying medication isn't the appropriate way to go for some people, but it's likely not the appropriate way to go for me, and I wanted to offer up an alternative solution to others who find themselves in my same boat.

Of course I worry about colon cancer, malnutrition and death. I never meant to give the impression that my primary concern is diarrhea. My primary concern is getting my body back in check, whether it's through meds or diet. But looking back at my experience, meds haven't worked great for me.

To answer your direct question, my answer is 0 or 1. If I can't control my symptoms through diet alone, or if I have to get another resection because the disease is prevalent despite sticking to a dietary regime, then I will certainly try Humira. But no, I can't justify putting another chemical into my body, when may of the other meds have ravaged it. 6MP paralyzed me from the waist down. Prednisone took all the calcium away from my bones, and I now have osteoperosis at age 32. I wasn't made aware of either of those risks before my doctors put me on these meds. I sometimes just think that doctors are too quick to prescribe the medications that can affect peoples lives negatively, even if they do help with the Crohn's. I think everyone needs to be aware of that.

-Adam


----------



## Jennifer

acemagic said:


> I wasn't made aware of either of those risks before my doctors put me on these meds. I sometimes just think that doctors are too quick to prescribe the medications that can affect peoples lives negatively, even if they do help with the Crohn's. I think everyone needs to be aware of that.


Definitely. Knowledge is power. The more we know about the medications that doctors offer the better decision we can make for ourselves. Whether or not to try it, whether or not we should try a lower dose, to try and suggest an alternative be it another medication, diet change etc, and be able to monitor our own health better by knowing which meds require monitoring through blood work or which meds shouldn't be taken long term (such as steroids). Yet knowing this we can't simply blame the doctors. Although, all this information wasn't so easy to find in the past or wasn't even known until more recently. Yet we're able to advocate for ourselves a lot better now than we were in the past. 

I'm having a little trouble following your story. When did you have your 4th resection? You went from 3 resections to 4 in this thread. You said your last one was in May 2012. Is it 3 or 4?

From your first post:
"I've done this because I've been laid up in hospital for the last 3 weeks, having undergone my third and hopefully final resection of bowel."

Recent post:
"I've had 4 resections..." http://www.crohnsforum.com/showpost.php?p=679719&postcount=287

You also said that you've dealt with Crohn's for 12 years:
"I'm speaking from experience here too. 12 years of crohns." http://www.crohnsforum.com/showpost.php?p=651853&postcount=257

Then:
"I've listened to my doctors for 14 years and have still had 4 resections." http://www.crohnsforum.com/showpost.php?p=681828&postcount=299

Is it 12 or 14 years?

It sounds like you did extremely well with Remicade. Do you think that if you had stuck with it then you might have avoided another resection? It can take three months or longer for some people for Remicade to fully kick in yet others notice immediate benefits as you did. 
"I had a terrible flare about 8 years ago, took 1 dose of Remicade, and I was fine for a year. No, it didn't solve the problem of the disease being present, but it certainly masked the symptoms enough that I was able to function again." http://www.crohnsforum.com/showpost.php?p=463067&postcount=42

The only meds I've seen you mention in this thread that you've actually taken are Remicade (which you did well on), LDN (you didn't notice any change so stopped it), 6MP (only mentioned just recently that it caused some major damage) and Prednisone (again mentioned recently and also caused damage). There have been many times where you mentioned trying every med out there but you've only mentioned four (that you've actually tried). Have you actually been on any other meds or did I miss that in one of your posts?


----------



## acemagic

Hey Jennifer,

Wow... really picking my story apart huh? lol I feel like I'm under the microscope.

I'm not blaming the doctors. I know they're sharing what they've learned. But i've also read time and time again that the role of diet doesn't get taught very heavily in medical school. It doesn't hurt to listen to all schools of thought and try to find out what works.

Regarding your questions, I should clarify because you're right. I sometimes make guesstimates and generalize about my past. Here are the exact answers:

Your first comment: I've had 4 SURGERIES> 3 resections, 1 ostomy reversal surgery.

Your second comment: I'm 32 now. When I'm writing quickly, I just think back to the approximate age I was, when I was diagnosed (which was around 20- for easy math). In reality I was 17 or 18... Can't remember which exactly. Hence the difference.

You're third comment: I have been on more than 4 meds, but I can't remember all the names. I could go to my doctor and ask for a full list, but I've just spoken about the specific ones I can recall. However, in recent discussions with my doctor, he had told me that I've been on everything available except Humira. Some other names I can recall off the top of my head are Methotrexate and Infliximab. If you're interested and if memory serves me correctly, I was constantly nauseous on Methotrexate and Infliximab gave me the same symptoms as the 6MP did.... I think. It's honestly difficult to recall why i was pulled off.

And your final comment: My doctor had to pull me off Remicade because by intestines were too narrow. Any more Remicade and there was a chance that they would fuse together.

Hope that helps clear things up!

-Adam


----------



## Jennifer

Thank you for clearing that up acemagic.  I pick posts apart to try and make sure that everything is legit honestly. I've always been protective of the members on the forum even well before I became the administrator. 

Infliximab is the same as Remicade. Have you been on Cimzia (a biologic) or Azathioprine/Imuran (supposed to be more mild than 6MP). Also were you ever put on Entocort (a steroid that's more mild than Prednisone but only works in certain areas of the intestine and as a steroid is meant to be temporary) or Mesalamine meds such as Asacol, then there's also sulfa drugs like Azulfidine. Have you talked to your GI about trying Enteral Nutrition? I'm also curious as to what dose of 6MP you took and how long in order for it to cause so much damage (did you have blood work at least once a month while on it?).

Maybe listing the meds like I did above may help you remember which ones you've taken. After 22 years I remember all the meds I've been on but the doses can be harder for me to recall so I understand how things can be forgotten over time.


----------



## acemagic

Okay that's my bad... I haven't been on infliximab. I've been on Imuran. I imagine my doctor didn't put me on Infliximab for the same concern of intestinal narrowing. Imuran also paralyzed me. It happened pretty quickly. It wasn't a listed side effect but I got massive bruising on my legs within a couple of days and then suddenly they were non functional. Scariest moment of my life. That was 6MP. When I started the Imuran I immediately started noticing bruising, so I quit it right away. I unfortunately couldnt tell you the dose. It was way too long ago.

Cimzia doesn't ring a bell. Maybe it's not available up in Canada? Entocort doesn't ring  bell either, but Asacol does. I believe I was on that in my earlier years. It's honestly hard to keep track after this long. I've had so many hospital visits that they all blend together. Enternal nutrition is something I would definitely consider if it came down to it. But right now I can eat and still feel okay, so I dont think I'm at that point yet. Im also considering a fecal transplant if it comes down to it, but Im not 100% yet.

-Adam


----------



## acemagic

Hey guys,

It's been exactly 4 months since I last posted, and I wanted to give a solid unbiased update on my condition, as it might help some of you along the way, and I'm hoping to grab some suggestions!

First and foremost, I went strict strict strict diet over the last month or so. I think I've had 2 days total where I cheated, but only because I was out of town. Other than that, I've been rock solid. Meats, fruits, veggies, nuts + seeds. I had some SCD legal cheese a couple of times too. The reason I went so strict is because I got some bad news:

I started feeling a "hardness" in my left butt cheek about 6 weeks ago. I had never had a hemorrhoid before, so I kind of assumed it was that. The hardness wasn't a lump, but more of a "wall". It extended from the inside of my left butt cheek, around the top of my crack (these are technical terms, by the way) and over to my right butt cheek. By the time I noticed it on my right butt cheek a couple of weeks later, I figured I should see a doctor. Also, it burned SOOOO bad sometimes when i went to the bathroom. Also it hurt to sit.. really badly.

Anyways, the doctor says: It's an abscess and I need to go into the hospital to get it removed. Day surgery. no big deal. I took the next day off work, waited for 8 hours in the hospital, only to be told that i'm being put on antibiotics and I should see my GI and come back into the hospital if it gets worse.

Well, it turns out my GI couldn't see me for like 3 weeks, and after 3 days it felt like it was getting worse, so I went back to the hospital. This time, they did a CT scan and gave me the news: Perianal crohns. It wasn't an abscess at all, there was no collection of fluid. But essentially, my crohns has spread to my ass (again, "ass" is the technical term).

Naturally, I was pretty devastated. Not only was my crohn's back, but it was progressing. They gave me another 2 weeks of antibiotics and told me this: *The antibiotics won't help get rid of the crohn's, but it's preventative, just in case an abscess forms*. That part is important.

So, I start taking even more antibiotics. Cipro and flagyl, 2x daily. I also go strict strict SCD + paleo. Really only eating foods that are approved on BOTH lists. I'm also on 100 million probiotics to counteract the antibiotics.

Day 8 or so after starting the antibiotics and day 4 of being strict paleo: I go through my usual withdrawals. Cravings, exhaustion and those kinds of things. 

Day 10 of antibiotics and day 6 of paleo: All of a sudden, my bump on my RIGHT side feels like it's shrinking. Is it the antibiotics? That seems weird considering what the doctor said, plus, why would it take 10 days to start working? I stick with both.. the antibiotics and the diet and I finally get my GI appointment.

My GI says a few things: 
1- I'm the poster boy for what NOT to do when I have crohns. I didn't go on any medication and I tried to treat it through diet.
2- I need to go on Humira.
3- The CT scan wasn't the best indicator of what is happening down there, so he wants me to go for an MRI.

Now, I actually genuinely like my doctor, but I left that room feeling like garbage. I don't regret trying to fix myself through diet, I think it was a worthwhile venture, but in the end, I feel like he's right and I need to finally go on drugs.

Flash forward to 4 days ago. I feel umm a bit "wet" in my butt. I go to the washroom, and I'm leaking. I'm leaking a clear fluid through the inside of my butt cheek. The lumps that had appeared all those weeks ago are draining like a popped zit (sorry for the gross detail!).

I haven't stopped "leaking". I'm going to the bathroom every hour or so, just to drain this thing, but here's the kicker: there are no more bumps. There is no more wall of hardness. The draining has effectively drained all the gross clear fluid out of me, and I sit back, thinking about my tummy itself, and I realize... I haven't had a stomach ache, crohn's symptoms or ANY foul smelling gas in months. I've been so focused on my anal problems that I hadn't really thought about my intestines. But I'm actually totally fine. My bowel movements are still loose, but that could be the byproduct of 5 surgeries.

So I contact my doctor via email. I ask him: What is happening with the leakage? Is it a fistula? Or healing, like a zit?

His response is that it was obviously an abscess, and has now formed a fistula and is draining.

Here's my problem with that answer: While I don't deny that it's probably a draining abscess NOW, The CT SCAN said it wasn't an abscess. The CT scan there was no fluid at all. I was also told that the antibiotics wouldn't help the situation, but would prevent an abscess from forming. Yet here I sit, with an abscess, that is spontaneously draining and potentially healing itself. Any why are my guts feeling fantastic?

So the question is: Is the diet actually working? Or are the antibiotics shrinking an abscess that actually was there the whole time? If so, why did they take so long to kick in? I thought antibiotics take only a few days to work. Maybe things were THAT bad??

So here I sit. Scheduled to go on Humira for a disease that I'm not even sure is present anymore. I have an MRI scheduled for December 31st too to determine what is in my butt, but by the time Dec 31st rolls around, I can't fathom ANYTHING being there. I don't think I can go back to my doc and refuse the Humira again without feeling like a total idiot or him disowning me. I'd actually like to request a colonoscopy, but I'm sure he would scoff at that too, since I just had one around February, which showed active disease.

Whether I go on humira or not (I think I "have to", just to appease my loved ones and tackle this from both sides), what KILLS me is that I don't think I'm ever going to "know" I'm definitely going to stick to the Paleo/SCD stuff because my guts are showing the results, but I'm not sure what to do at this juncture.

What do you guys think? Request a colonoscopy? Start on the drugs even though they may not be necessary? Looking forward to your responses! Thanks so much!

-Adam


----------



## JohnnyRottenAppleseed

Dude, I was where you are a few years ago. I have been off all crhons meds for two years, and no antibiotics for over a year. Those things will come and go and drain until they disappear. They could get worse, I'm not a fortune teller. Just realize that Humira is a nuclear bomb. If you are symptom free, why take the risks? "Fatal Events"? Really? I would choose wisely. My doctor was angry I refused Humira. I was also put into remission with cipro and flagyl and cooking whole organic foods and probiotics. Make sure you take S Bhoulardii and a probiotic with bifidus and acidophilus. You can also eat organic yogurt for probiotics but definitely use the S Bhoulardii.


----------



## Ozboz

I'm on falgyl now and I'm in horrible pain


----------



## JohnnyRottenAppleseed

Paleo is the way to go. Google "American Gut". They are finding that paleo diet favors a gut flora that is anti inflammatory.


----------



## kiny

Don't know what to tell you but please take care of yourself. 

I personally would never put my life into the hands of a diet to treat a serious disease. 

I know some don't agree, but there is not one single shred of evidence that diets like paleo or SCD help for crohn's disease.

Listen to your doc please, or find a doc you feel comfortable with. 

Don't become one of those people who loses their intestine because they thought they could do it on their own, every single one would have listened to their doc if they could go back in time.

I feel diets like SCD and Paleo cause much more harm to this community than good. There are people who use those diets while under supervision and treatment of their doctor, which is fine, and there are people who use those diets because they think it's going to help them treat their disease on their own.

Don't be like those people, because you will regret it. And the reason doctors aren't advising people to go on those diets is because they have also seen those people, and those people end up losing their intestine. Doctors are there to help you, listen to them please.

If you don't like a doc, then find one you do like, but don't throw all of their advice overboard, this isn't a disease you can just treat on your own.


----------



## LovingtheCoast

Adam,

Good to hear your update.

I am scheduled to start Humira tomorrow.  The nurse comes by tomorrow afternoon to help me with my loading doses, then, I theoretically will be taking Humira until it stops working.  This has been a long time coming...

It has taken me 9 months to finally be at peace with this decision.  I dedicated myself to every alternative approach, working very closely with my ND whom I adore.  Working with her has changed my life: I feel better than ever!  I sleep like a baby, have "semi" regular eliminations, have more energy, a much happier disposition, and even things like my nails are long and strong.

That said, my Crohn's is still beyond my control.  Despite my best efforts, and a very careful strict diet, I still have set-backs that keep me home from work for days, cancelling social plans, curled up in terrible pain and sometimes nausea/vomiting, D and C.  I feel like I hit the reset button each time and it really hurts physically, mentally, and emotionally.

As such, I am going to keep working with my ND, and eating mostly paleo.  But I am also going to start Humira.  I didn't want to start it until I was finally at peace with the decision - remember, what you think matters.  If you are not comfortable with it, don't start it until you are. The right mindset is key. Healthcare is totally patient-driven, so if you would like another colonoscopy, ask for it, nevermind what your GI says!!  

Take your time with the decision - don't rush it and don't do it to appease others.  It's a major commitment, so think it through carefully.  It's your life, your health and your body.  I admire how hard you've worked through it all.  You must have tremendous grit, strength and support!!

Believe me, I WISH I could heal myself without any meds, but I have come to grips with the fact that I need some additional assistance.  Hopefully, not forever.  

Good luck, and keep up posted.
Steph


----------



## hugh

acemagic said:


> HFirst and foremost, I went strict strict strict diet over the last month or so. I think I've had 2 days total where I cheated, but only because I was out of town. Other than that, I've been rock solid. Meats, fruits, veggies, nuts + seeds. I had some SCD legal cheese a couple of times too. The reason I went so strict is because I got some bad news:


Adam, Glad you went 100%, 
90/10 might be fine for most people but not us.....



acemagic said:


> My GI says a few things:
> 1- I'm the poster boy for what NOT to do when I have crohns. I didn't go on any medication and I tried to treat it through diet.
> 2- I need to go on Humira.
> 3- The CT scan wasn't the best indicator of what is happening down there, so he wants me to go for an MRI.
> 
> Yet here I sit, with an abscess, that is spontaneously draining and potentially healing itself. Any why are my guts feeling fantastic?
> 
> So here I sit. Scheduled to go on Humira for a disease that I'm not even sure is present anymore. I have an MRI scheduled for December 31st too to determine what is in my butt, but by the time Dec 31st rolls around, I can't fathom ANYTHING being there. I don't think I can go back to my doc and refuse the Humira again without feeling like a total idiot or him disowning me. I'd actually like to request a colonoscopy, but I'm sure he would scoff at that too, since I just had one around February, which showed active disease.


Now, first and foremost, my opinion isn't worth a damb, but if you are feeling 'fantastic' then Dec 31 isn't a long way away..... Your call.

It's your arse (literally) so demand a colonoscopy and tell him that you will take humira if you need to based on the results of the scope?????

But remember 90/10 =fail

I'd agree with your doc (sort of) – trying to treat it with diet is ineffective -unless you commit 100%, but I think you get that now...

Paleo isn't as low carb as Wolff/Cordain ect. recommend. Paleo carbs are ok if tollerated.



acemagic said:


> Whether I go on humira or not (I think I "have to", just to appease my loved ones and tackle this from both sides), what KILLS me is that I don't think I'm ever going to "know" I'm definitely going to stick to the Paleo/SCD stuff because my guts are showing the results, but I'm not sure what to do at this juncture.
> What do you guys think? Request a colonoscopy? Start on the drugs even though they may not be necessary? Looking forward to your responses! Thanks so much!
> 
> -Adam


Once again, I don't know squat, and it's you decision, but don't do it because you think other people think you are stupid.

Good Luck


----------



## JohnnyRottenAppleseed

acemagic said:


> Hey guys,
> 
> It's been exactly 4 months since I last posted, and I wanted to give a solid unbiased update on my condition, as it might help some of you along the way, and I'm hoping to grab some suggestions!
> 
> First and foremost, I went strict strict strict diet over the last month or so. I think I've had 2 days total where I cheated, but only because I was out of town. Other than that, I've been rock solid. Meats, fruits, veggies, nuts + seeds. I had some SCD legal cheese a couple of times too. The reason I went so strict is because I got some bad news:
> 
> I started feeling a "hardness" in my left butt cheek about 6 weeks ago. I had never had a hemorrhoid before, so I kind of assumed it was that. The hardness wasn't a lump, but more of a "wall". It extended from the inside of my left butt cheek, around the top of my crack (these are technical terms, by the way) and over to my right butt cheek. By the time I noticed it on my right butt cheek a couple of weeks later, I figured I should see a doctor. Also, it burned SOOOO bad sometimes when i went to the bathroom. Also it hurt to sit.. really badly.
> 
> Anyways, the doctor says: It's an abscess and I need to go into the hospital to get it removed. Day surgery. no big deal. I took the next day off work, waited for 8 hours in the hospital, only to be told that i'm being put on antibiotics and I should see my GI and come back into the hospital if it gets worse.
> 
> Well, it turns out my GI couldn't see me for like 3 weeks, and after 3 days it felt like it was getting worse, so I went back to the hospital. This time, they did a CT scan and gave me the news: Perianal crohns. It wasn't an abscess at all, there was no collection of fluid. But essentially, my crohns has spread to my ass (again, "ass" is the technical term).
> 
> Naturally, I was pretty devastated. Not only was my crohn's back, but it was progressing. They gave me another 2 weeks of antibiotics and told me this: *The antibiotics won't help get rid of the crohn's, but it's preventative, just in case an abscess forms*. That part is important.
> 
> So, I start taking even more antibiotics. Cipro and flagyl, 2x daily. I also go strict strict SCD + paleo. Really only eating foods that are approved on BOTH lists. I'm also on 100 million probiotics to counteract the antibiotics.
> 
> Day 8 or so after starting the antibiotics and day 4 of being strict paleo: I go through my usual withdrawals. Cravings, exhaustion and those kinds of things.
> 
> Day 10 of antibiotics and day 6 of paleo: All of a sudden, my bump on my RIGHT side feels like it's shrinking. Is it the antibiotics? That seems weird considering what the doctor said, plus, why would it take 10 days to start working? I stick with both.. the antibiotics and the diet and I finally get my GI appointment.
> 
> My GI says a few things:
> 1- I'm the poster boy for what NOT to do when I have crohns. I didn't go on any medication and I tried to treat it through diet.
> 2- I need to go on Humira.
> 3- The CT scan wasn't the best indicator of what is happening down there, so he wants me to go for an MRI.
> 
> Now, I actually genuinely like my doctor, but I left that room feeling like garbage. I don't regret trying to fix myself through diet, I think it was a worthwhile venture, but in the end, I feel like he's right and I need to finally go on drugs.
> 
> Flash forward to 4 days ago. I feel umm a bit "wet" in my butt. I go to the washroom, and I'm leaking. I'm leaking a clear fluid through the inside of my butt cheek. The lumps that had appeared all those weeks ago are draining like a popped zit (sorry for the gross detail!).
> 
> I haven't stopped "leaking". I'm going to the bathroom every hour or so, just to drain this thing, but here's the kicker: there are no more bumps. There is no more wall of hardness. The draining has effectively drained all the gross clear fluid out of me, and I sit back, thinking about my tummy itself, and I realize... I haven't had a stomach ache, crohn's symptoms or ANY foul smelling gas in months. I've been so focused on my anal problems that I hadn't really thought about my intestines. But I'm actually totally fine. My bowel movements are still loose, but that could be the byproduct of 5 surgeries.
> 
> So I contact my doctor via email. I ask him: What is happening with the leakage? Is it a fistula? Or healing, like a zit?
> 
> His response is that it was obviously an abscess, and has now formed a fistula and is draining.
> 
> Here's my problem with that answer: While I don't deny that it's probably a draining abscess NOW, The CT SCAN said it wasn't an abscess. The CT scan there was no fluid at all. I was also told that the antibiotics wouldn't help the situation, but would prevent an abscess from forming. Yet here I sit, with an abscess, that is spontaneously draining and potentially healing itself. Any why are my guts feeling fantastic?
> 
> So the question is: Is the diet actually working? Or are the antibiotics shrinking an abscess that actually was there the whole time? If so, why did they take so long to kick in? I thought antibiotics take only a few days to work. Maybe things were THAT bad??
> 
> So here I sit. Scheduled to go on Humira for a disease that I'm not even sure is present anymore. I have an MRI scheduled for December 31st too to determine what is in my butt, but by the time Dec 31st rolls around, I can't fathom ANYTHING being there. I don't think I can go back to my doc and refuse the Humira again without feeling like a total idiot or him disowning me. I'd actually like to request a colonoscopy, but I'm sure he would scoff at that too, since I just had one around February, which showed active disease.
> 
> Whether I go on humira or not (I think I "have to", just to appease my loved ones and tackle this from both sides), what KILLS me is that I don't think I'm ever going to "know" I'm definitely going to stick to the Paleo/SCD stuff because my guts are showing the results, but I'm not sure what to do at this juncture.
> 
> What do you guys think? Request a colonoscopy? Start on the drugs even though they may not be necessary? Looking forward to your responses! Thanks so much!
> 
> -Adam


If you are symptom free then hold off on Humira. Get a colonoscopy and a 2nd opinion. Why take a drug that can kill or maim you if you aren't sick anymore? Think about it.


----------



## acemagic

You guys are so amazing. THANK YOU so much for the responses. It's abundantly clear that there are varying views on the subject.

JohnnyO: The Humira is supposedly going to fix the abscess/fistula that I have, says the doc. I hear where you're coming from about the risks though - hence the post. I'm petrified too. I did ask my doc what the odds were and he told me that the increased risk of cancer is actually half of what it is to die on the operating table. So I actually have twice as much chance dying during my next operation than I do taking the Humira. He also said that out of 500 patients he has treated, not a single one has had a "severe" reaction in any form, and that includes, any cancers, sepsis, or bad infections.

LovingTheCoast: You have no idea what a relief it was to read your post. You're exactly in the same boat as I am. As much as I hate that you're going through it too, it's so good to know that someone else has tried the ND approach and is still going the Humira route. Thank you sooo much for posting!

I have no doubt that the Paleo solution is doing some good, but Kiny may be right. It might be naive of me to just put all my eggs in one basket for the sake of "knowing" that the diet did or did not work for me. If I take a guess and I'm wrong, I could lose my whole intestine, which I'd like to save for a little while longer. Doctors are in it to help patients. If more patients died on these drugs that it helped, we wouldn't be taking them.....right? lol

-Adam


----------



## wildbill_52280

since you are so ambitious, how bout trying a fecal transplant?
glad you are going on meds tho, i have been doing the med free approach since day 1, which is 4 years now. nothing is more dangerous then that, i wish i had utilized the available meds, but i have done ok this way too. i will be doing a fecal transplant soon.

http://www.crohnsforum.com/showthread.php?t=52400


----------



## mccindy

I think what you really need to consider is this: Crohn's doesn't "go away". It flares up, and gets better, and can go into remission.  It sounds like your dietary changes caused the Crohn's in your gut to go into remission, which is good, and a likely indication that you are doing the right thing with your diet.  The new flare of Crohn's in your anal region shows that it has continued to spread, and eventually caused the abscess and fistula you are experiencing now.  This would indicate that the dietary changes haven't completely put all your Crohn's into remission, and this would be why your GI wants you to start the Humira.  There are times when you need to accept the inevitable, and you will probably discover that it's the combination of medication and diet control that gives you the relief you've been hoping for. 
It sounds like you have a GI who is on your side and understanding, so be grateful for that and keep working with him to get yourself as under control as possible.


----------



## LaLaNapa

Hi Adam:

Just wanted to send support your way.  Unfortunately, I understand what you are going through.  I've been Paleo (98% at least!) for year and a half and on LDN since Spring 2013.  And my one year follow up colonoscopy just last week shows progressive disease: inflammation active again in my colon and my TI narrowing further from ongoing inflammation.  It's just so frustrating as I feel fine.  I know my MD wants me to step up to Entocort followed by 6MP.  But my ND wants to put me back on the protocol I was on last year (before my prior colonoscopy which had showed improvement - inactive disease in the colon at least).  I wish I hadn't stopped that, even if it was a ton of supplements every day.  But I am seriously thinking about Entocort.  (And please...any "pro-med guerrillas" hold off on comments.)  But I already battle depression and anxiety and even she thinks it will be risky for me due to side affects of...yeah, depression and anxiety.

So anyway, I guess we at least learned to fight for our health and our wishes.  There is such as a thing as a patient's right of self-determination.  Health should be in our control...sadly with the state of the human race, it seems it's not really in anyone's control: doctors or patients.

Best wishes to you!


----------



## JohnnyRottenAppleseed

I don't see why doctors or patients think an abscess and a flare are the same thing. Are you taking any immunsuppressants? My abscesses finally went away after I went off 6mp. Most people and Doctors will tell you to take Humira or the  next great pharmaceutical drug. Just ask yourself why you have to sign all of those legal documents to limit the doctors liability when taking this toxic drug?  Just remember, it is YOUR decision and YOU have to live and die with your choices. I decided I would live and die without that drug. I would rather die of natural causes than from a life threatening infection. Of course your dr will sing the praises of Humira! It costs $30,000 a year!!!! $$$$$$$$$$$$


----------



## JohnnyRottenAppleseed

acemagic said:


> You guys are so amazing. THANK YOU so much for the responses. It's abundantly clear that there are varying views on the subject.
> 
> JohnnyO: The Humira is supposedly going to fix the abscess/fistula that I have, says the doc. I hear where you're coming from about the risks though - hence the post. I'm petrified too. I did ask my doc what the odds were and he told me that the increased risk of cancer is actually half of what it is to die on the operating table. So I actually have twice as much chance dying during my next operation than I do taking the Humira. He also said that out of 500 patients he has treated, not a single one has had a "severe" reaction in any form, and that includes, any cancers, sepsis, or bad infections.
> 
> LovingTheCoast: You have no idea what a relief it was to read your post. You're exactly in the same boat as I am. As much as I hate that you're going through it too, it's so good to know that someone else has tried the ND approach and is still going the Humira route. Thank you sooo much for posting!
> 
> I have no doubt that the Paleo solution is doing some good, but Kiny may be right. It might be naive of me to just put all my eggs in one basket for the sake of "knowing" that the diet did or did not work for me. If I take a guess and I'm wrong, I could lose my whole intestine, which I'd like to save for a little while longer. Doctors are in it to help patients. If more patients died on these drugs that it helped, we wouldn't be taking them.....right? lol
> 
> -Adam


You assume the FDA and  Big Pharma care about you instead of profits. Ask the 35,000+ people who were killed by properly prescribed and FDA approved  VIOXX.


----------



## acemagic

JohnnyO said:


> You assume the FDA and  Big Pharma care about you instead of profits. Ask the 35,000+ people who were killed by properly prescribed and FDA approved  VIOXX.


Hey Johnny,

Oh, no no. I definitely don't have any illusions about that. I know for a fact that they're in it for the profits. What I mean to say is that Humira has been around for 10 years now and if it didn't work at all, or killed more patients than it helped, we would have heard about it by now, either through the media or through the forums or Internet. 

Yes I have heard PLENTY about the terrible side effects and they need to list those side effects or risk getting sued and losing everything, but if it actually wasn't helping people at all, we would have heard first hand accounts of people suffering on it. For those that are on it that have posted here, I've heard mostly good stuff.

-Adam


----------



## JohnnyRottenAppleseed

I would only take it if I was facing imminent Surgury or death. My GI wanted to put me on it in 2010. I'm med free 3 years later. Of course that could change. He was just very insistent I start right away. He was wrong and I was right. My body. My choice. Choose wisely is all I'm saying. And as far as Doctors go, I had a surgeon tell me one of his patients almost died  from complications. By the sound of it he probably wishes he did. Several operations and months in hospital he survived. He told me that if it was dealing with draining abscesses or Humira he would suffer with the abscesses. I did and they went away after a year of going on and off cipro and flagyl. Just my experience. I'm not giving you medical advice just my experiences.


----------



## JohnnyRottenAppleseed

Also you are in canada. Have you tried medical cannabis? It works in disease and symptoms.


----------



## JohnnyRottenAppleseed

You dr, like mine, is full of crap. You are not supposed to take Humira if you have infections. I changed my mind at the 11th hour when the Humira was already shipped. I know I would be dead if I took that crap as I was getting terrible abscesses while on 6mp. I've been off 6mp for two years and guess what? No more abscesses! The commercial even says tell your doctor of you suffer from infections. It is contraindicated!


----------



## mccindy

JohnnyO, I have to say that, although I am not a "pro-med guerilla", I am a bit put off by your adamant anti-pharmaceutical rants.  While it is true that some people do well without medications, it is also true that medications often provide relief for many others.  To advise someone to absolutely refuse medications against the advice of his doctor is offensive.  There are many different medications available, and sometimes it takes a few different meds to find the right ones for certain people.  Other people can get by with dietary changes.  Unless you are a medical expert and very familiar with each individual's diagnosis and conditions, you should never advise to extremes.  And telling people they will die or wish they were dead if they use the medications prescribed by their doctors is also something you should think very hard about, and then only say to yourself, not to them. This forum is not about scaremongering and hard lines, it's about support and advice.


----------



## acemagic

JohnnyO said:


> I would only take it if I was facing imminent Surgury or death. My GI wanted to put me on it in 2010. I'm med free 3 years later. Of course that could change. He was just very insistent I start right away. He was wrong and I was right. My body. My choice. Choose wisely is all I'm saying. And as far as Doctors go, I had a surgeon tell me one of his patients almost died from complications. By the sound of it he probably wishes he did. Several operations and months in hospital he survived. He told me that if it was dealing with draining abscesses or Humira he would suffer with the abscesses. I did and they went away after a year of going on and off cipro and flagyl. Just my experience. I'm not giving you medical advice just my experiences.
> 
> Also you are in canada. Have you tried medical cannabis? It works in disease and symptoms.
> 
> You dr, like mine, is full of crap. You are not supposed to take Humira if you have infections. I changed my mind at the 11th hour when the Humira was already shipped. I know I would be dead if I took that crap as I was getting terrible abscesses while on 6mp. I've been off 6mp for two years and guess what? No more abscesses! The commercial even says tell your doctor of you suffer from infections. It is contraindicated!


The thing is, I don't want to wait until I'm close to death to start. I've been through 5 surgeries in the last 15 years. My crohn's is fairly "aggressive" even though I don't feel any pain. The fact is that if this is perianal crohn's, then the disease has progressed despite being on a fairly strict dietary regime. I totally agree with you. Go the dietary route. Heck, this entire thread is based around that concept. But considering that the disease appears to be progressing despite my best efforts, I think it probably makes sense to attack it from every angle. I'm still hesitant though - don't get me wrong and I will still stay true to the diet, even when on the Humira.

As far as medical marijuana goes, I do take the Rick Simpson oil about once every two weeks. I don't like the high feeling I get, and the marijuana that doesnt get you high, but has a high level of "healing" properties is impossible to get up here. It's a particular strain that I can't seem to find. So the oil is the next best thing. I was taking small amounts every day for a while there, but still not getting restful sleep because I kept getting high. I can try reintroducing it now though, in even smaller doses.

6mp was a nightmare for me too. I lasted 4 days on it and it paralyzed my legs with bruises. However, Remicade did wonders for me. 1 dose and I was completely in remission for a full year, with no pains at all. Humira is closer to remicade in composition than it is to 6MP. It might actually work for me.


----------



## Ozboz

Yeah getting the right strain of MMJ is very important for it too work on lowering inflamation
I'm using cannatonic at the moment which is to be a strain that's really good for crohn's but still not seeing the results I want but I do have fairly aggressive crohn's and an infection so maybe when the infection goes the MMJ will work better


----------



## JohnnyRottenAppleseed

I didn't realize you had operations already. It sounds like you know what you are doing. I wish you the best either way! I know what it's like desperately trying everything to cure yourself while the specialists practically mock you for trying anything besides their mainstream suggestions.


----------



## Crohnie1023

Perinatal disease is difficult to treat period. As a nurse it sounds to me that you indeed had an abscess and when put on antibiotics it created a fistula in order to drain. Fistula do not usually just go away even with biologics...most require that your crohns be under control and then surgically they r repaired. Have u tried steroid enemas ? You need to treat it locally also. To know the extent of your perinatal/ Crohn's disease u need an MRI enterography at a major medical center who knows how to read and interpret them. Many local hospitals can't even recognize fistula on MRI...you need expertly trained radiologists. When peri anal disease becomes extensive...the recommendation is usually a temporary or permanent ileostomy depending on what has been removed prior. A friend of mine has 6 perinatal fistulas and this has been the recommendation of Cleavland clinic, the university of Chicago and the university of michigan. I don't say this to scare you...I say that it is time you got aggressive and dealt with experts only within your surrounding community. Biologics ( although I don't take them myself ) may give you your life back along with continuing your diet.


----------



## JohnnyRottenAppleseed

Mine went away without biologics or surgery. Also biologics are contraindicated if you have an infection. Abscesses are infections.


----------



## acemagic

I have an MRI scheduled for December 31st. In the meantime, I'm still taking antibiotics and the fistula hasn't stopped draining. It's pretty gross. I'm going back to the bathroom every half hour to absorb the fluid. I'm hoping like crazy that it will resolve on it's own and by the time Dec 31st rolls around, there's nothing to see, but from what I've read, it's more likely that I'll need the Anti-TNF to do it. My GI says that the Humira will likely help with the closing of the fistula, so Crohnie123: you and my GI disagree there. 

Crohnie: No I haven't tried steroid enemas. You're saying I should be doing those to assist with the healing?

JohnnyO: You're right about that too. Abscessed are infections and I shouldnt start the Humira if I have one. I'll email my doctor about that, since I think the Humira folks are lining me up for my first dose in a couple of weeks. 

I'll keep you guys posted. Thanks again!

-Adam


----------



## mccindy

While biologics can increase the risk of infection due to their immunosuppressive tendencies, they are not contraindicated in the presence of infection. Often the primary condition they are administered for is of higher priority than an infection, which can be treated independently.
  Once an abscess starts to drain, it often will resolve on its own, without requiring the use of an antibiotic, but sometimes they are necessary.  
  Each person's body is different and reacts to medications, diets and infections differently. What works for one person might not work for someone else.


----------



## michelle222

Hi AceMagic,

I hope that the diet goes well. I am currently going off of 6MP and instead of doing Remicade, which my doctor recomends, I am trying to control my disease through diet. I meet with an MD and clinical nutritionist at Columbia the first week in January to see how to adjust my diet to control this disease. He has had Crohn's since he was 19 and, after spending his life trying to figure out how to control his Crohns through diet, has developed a diet and probiotic formula that has kept him in remission and flare free for something like 50 years. A friend of mine with UC has also done this diet and has been in remission since (albeit only 3 years). So anyway, I completely understand where you're coming from. 

That being said, I am continuing to stick with my GI doctor as well and monitor my Crohn's along the way with blood tests and colonoscopies every 6-12 months. While my doctor doesn't agree with my decision, we compromised that I would try the diet for 6 months and if I am not doing better (and continuing to do better into the future) I will discuss Remicade again. I think it's really important if you are going this route to make sure you are getting checked out frequently by doctors. 

Anyway, I hope things go well and please keep us updated.


----------



## serrickson

My son, 10 years old, has been on Paleo for 6 months.  Zero doctor support, but for medication.  The result?  Well, his calprotectin dropped 1200 points in a month (to normal).  He GAINED 15lbs.  Iron etc., now normal.  THEN the calprotectin dropped again to BELOW 20, as of two weeks ago.  He's on Azathioprine and MTX, diagnosed over 3 years ago when he was 6, while suffering perianal disease.  Two years ago his calprotectin was 3000 (while on AZA and steriods).  YES--3000!!!!  His doctor is utterly shocked, although he doesn't know our son is 100% Paleo, but does know I toy with his diet.  Even if I told him he won't believe me, he insists diet has nothing to do with Crohn's.  Paleo is HARD, a nightmare for me as a stay at home dad to prepare and research, even worse for a 4th grader to follow.  But it works, at least for the past 6 months.  I'm convinced MILK and GLUTEN are the root of all evils, at least for our son.  Nevertheless, the diet has been worth it!!  But one HAS to be 100%!


----------



## VeganOstomy

JohnnyO said:


> Paleo is the way to go. Google "American Gut". They are finding that paleo diet favors a gut flora that is anti inflammatory.


That's not what the current scientific research says.  Not only do paleo diets increase inflammation (with average crp levels being more than double of that vs a vegetarian) but high meat diets do not favor or gut bacteria. 

Ever wonder why almost all the paleo gurus out there sell lots of supplements, take laxatives and drink a lot of coffee?


----------



## acemagic

VeganOstomy said:


> That's not what the current scientific research says.  Not only do paleo diets increase inflammation (with average crp levels being more than double of that vs a vegetarian) but high meat diets do not favor or gut bacteria.
> 
> Ever wonder why almost all the paleo gurus out there sell lots of supplements, take laxatives and drink a lot of coffee?


Do you have a source for that? That's the very first I've heard that.

-Adam


----------



## VeganOstomy

acemagic said:


> Do you have a source for that? That's the very first I've heard that.
> 
> -Adam


I have several years worth of research on the subject.  It would take some time to gather my sources, but you may find some quick data be searching "vegan gut flora" or something like that. You'll find studies which show the composition of the gut bacteria, but I find it more valuable to look at research that shows the byproduct of those bacteria.  We know that certain bacteria can offer immune boosting benefits through the byproducts they produce, while other bacteria produce far more damaging byproducts. 

For the high inflammation levels in paleo dieters, I found data from studies published by several "paleo gurus" then compared their results with studies on vegans or vegetarians. There was a lot of work involved in cross checking the data, but it was quite clear: even the research that was suppose to support lower inflammation in paleo followers produced poor results when compared with plant based diets.  

There's a lot of misinformation on the paleo websites. I've challenged them many times only to be banned and blocked from their site. You'll also find that many of the studies those sites mention in favor of high animal product diets are actually funded by groups such as the Cattlemen Board or the Egg board...


----------



## SoIhaveUC

I have tried extreme low carb diets and spent a lot of money on various natural programs. When doing the diet my stomach felt better and my weight at the time seemed to balance, it also helped with joint pain; but saying that, my disease in located in the rectum, and the diet did nothing for that. I have always had bleeding there, and it has not gone away even with the diet. I used to rave about the diets, but now I realise that it is so individual, and I have met some people who say they are in complete remission. However, I have realised it does not work for everyone and now I am at a stage in my UC life where I have to say, "you got to find out what works for you." I have to say my rectum does not like me whatever I do. Nikimazur, I am in the same position as you are where I am now starting to include grains, and I am really not sure if I want to, but it might be the best thing for me. I had my first baked potato the other night in 3 years. No kidding


----------



## DGH

EthanPSU said:


> Great read. I saw that you might think Grains are a part of what inflames it.
> 
> This might be a dumb question, but is spaghetti a grain? I've been eating a ton of spaghetti the past week due to trying to gain weight and working out, and thus far my crohns has been seeming to be getting better. I haven't added any new meds (yet). Ill let you know if I continue eating a lot of grains if anything changes.


As a person with crohns for almost 20 years now with 2 re-sect surgeries, but now having daily symptoms almost completely gone for several years with no medications, specifically wheat [spaghetti}, and wheat products, are extremely inflammatory. Not just for people with crohns, but people in general. For actual clinical studies, check out pubmed .com   This site is extremely supported by the medical profession and is more educational than anything else you will be exposed to in my opinion. I do most of my research there and devised my own aproach from what I learned there to almost eliminate daily symptoms..Good luck to you....DGH


----------



## hugh

SoIhaveUC said:


> I have tried extreme low carb diets and spent a lot of money on various natural programs. When doing the diet my stomach felt better and my weight at the time seemed to balance, it also helped with joint pain; but saying that, my disease in located in the rectum, and the diet did nothing for that. I have always had bleeding there, and it has not gone away even with the diet. I used to rave about the diets, but now I realise that it is so individual, and I have met some people who say they are in complete remission. However, I have realised it does not work for everyone and now I am at a stage in my UC life where I have to say, "you got to find out what works for you." I have to say my rectum does not like me whatever I do. Nikimazur, I am in the same position as you are where I am now starting to include grains, and I am really not sure if I want to, but it might be the best thing for me. I had my first baked potato the other night in 3 years. No kidding


Paleo doesn't have to be low carb, and it definitely doesn't have to be very low carb.
I know most peoples intro to paleo (mine included - SCD) is very low carb, but 'paleo dogma' has softened alot in the last 30 years with people coming to realise that our evolution from forest dwelling apes (food -mainly plant but with a large helping of insects) to human grassland dwellers we would have relied on starchy tubers to survive.
Paleo ranges from full on carnivore to raw vegan, and if you can find your own 'sweet spot', the point that works for you physically and ethically then that's great.
We are all different, and do better on different diets, but this range can be accommodated within paleo. 

There is no place for shitloads of sugar, vegetable oil, gluten (especially as we have it today), and chemical crap in a healthy diet.

It's unfortunate that some people try to pretend that the debate is between vegetarian and meat eaters when it isn't.
One can have a healthy vegetarian diet or an unhealthy vegetarian diet.
One can have a healthy omnivorous diet or an unhealthy one
One can even have an unhealthy paleo diet.

Bring back the carbs but try paleo carbs first and see if that's enough.
Try a strict medium carb paleo and see if the bleeding stops?
I'm a great believer in pro-biotic foods, i eat dairy if i want to and make great cakes with almond flour, coconut flour and tapioca (casava) flour.
Since becoming aware of Paul Jaminet's work, i've even added in white rice.

So enjoy the potato, it's paleo (but not SCD), and enjoy carbs,

It would be nice if the vegan liberation army put up a bit of science and a bit less waffle.
Googling wheat and gut flora would be more illuminating,



VeganOstomy said:


> There's a lot of misinformation on the paleo websites. I've challenged them many times only to be banned and blocked from their site. You'll also find that many of the studies those sites mention in favor of high animal product diets are actually funded by groups such as the Cattlemen Board or the Egg board...


Yeah, and the vegans are funded by monsanto (who's growing all that tofu?).
We can all throw accusations and misinformation around, but it's not helpful


----------



## VeganOstomy

hugh said:


> Yeah, and the vegans are funded by monsanto (who's growing all that tofu?).
> We can all throw accusations and misinformation around, but it's not helpful


That's an ignorant statement, considering most gmo's are grown for livestock and tofu isn't a requirement for living off a plant-based diet.


----------



## nogutsnoglory

Hugh, that really is uncalled for. Unlike the meat industry which is heavily involved in lobbying and flawed research to promote their products the vegan community doesn't have a major manufacturer on its side. Sure soy manufacturers will tout the benefits of soy but the animal industry is unified and powerful. Most vegans likely care not only about animal welfare but also the health of their bodies and the environment and I'm sure many are consciously trying to avoid GMO's.


----------



## mccindy

Personally, I thought it was a little funny - as tofu is made, not grown.    There are always going to be industries who want to push through their own agenda, and it's up to us as the consumers to decide what we want to put into our bodies.  Vegan or omnivore, we all have the right to decide what we're going to eat, and others shouldn't try to push their own agenda.  Just give some info, and let people decide for themselves.


GMOs affect meat and plant food alike.


----------



## hugh

VeganOstomy said:


> That's an ignorant statement, considering most gmo's are grown for livestock and tofu isn't a requirement for living off a plant-based diet.


Soy, wheat, sugar, corn,
- industrial agriculture is as damaging (if not moreso) than industrial meat production, Growing grain on the vast destructive scale makes Caged Animal Feeding Operations possible, not the other way around.
It's the grain industry that is profiting from CAFO's as much as the meat industry, and they are on the same side.



nogutsnoglory said:


> Hugh, that really is uncalled for. Unlike the meat industry which is heavily involved in lobbying and flawed research to promote their products the vegan community doesn't have a major manufacturer on its side.


I'm against CAFO's and the meat industry.
It's a nasty poisonous and inhumane way to produce meat, and produces an inferior product
Likewise i'm against commercial agriculture,
It's a nasty poisonous and inhumane way to produce vegetable based foods, and produces an inferior product.
Likewise i'm against commercial food production,
It's a nasty poisonous and inhumane way to produce 'food-like products', and produces an inferior product.

The paleo community also doesn't have a major manufacturer on their side, but both have large industries that will align themselves to self promote as much as is profitable, and both sides will use whatever 'science' available to promote their own cause.



mccindy said:


> Personally, I thought it was a little funny - as tofu is made, not grown.    There are always going to be industries who want to push through their own agenda, and it's up to us as the consumers to decide what we want to put into our bodies.  Vegan or omnivore, we all have the right to decide what we're going to eat, and others shouldn't try to push their own agenda.  Just give some info, and let people decide for themselves.
> 
> GMOs affect meat and plant food alike.


I'm glad someone did .

It's getting a bit off topic but that's where we wandered.....
…....great debate, covers nutrition and ethics, 1hour 44min.
Don't Eat Anything With A Face
http://intelligencesquaredus.org/iq2-tv/item/1022-dont-eat-anything-with-a-face
I haven't got to the end yet, but both sides are against CAFO and concerned with animal welfare and food quality



michelle222 said:


> Hi AceMagic,
> 
> I hope that the diet goes well. I........
> ….....Anyway, I hope things go well and please keep us updated.


+1,   hope you are travelling well.....


----------



## VeganOstomy

hugh said:


> Soy, wheat, sugar, corn,
> - industrial agriculture is as damaging (if not moreso) than industrial meat production


While i agree that our current farming methods are not ideal,  can you explain what those foods or how they are grown hasto do with the statement that "vegans are funded by monsanto"?  I had no idea that eating corn or wheat automatically makes you vegan. 

Soy - most is grown for livestock. 
Wheat - what about it? Vegan exclusive? 
Sugar - vegan exclusive? 
Corn - most is grown for livestock. 

Your attack on people who simply want to end unnecessary violence is baseless.

My comment was an observation that the paleo world - especially the gurus like Sisson or Wolf, base their knowledge (and attacks on plant-based diets) on misinformation, myth and meat-industy sponsored studies.   Those studies are often ripped apart for having poor methodology or simply skewing the results to form a favorable conclusion.


----------



## hugh

VeganOstomy said:


> While i agree that our current farming methods are not ideal,  can you explain what those foods or how they are grown hasto do with the statement that "vegans are funded by monsanto"?  I had no idea that eating corn or wheat automatically makes you vegan.


Hmmmmmmm, my comment was......
“Yeah, and the vegans are funded by monsanto (who's growing all that tofu?).
We can all throw accusations and misinformation around, but it's not helpful “

The second line acknowledges it to be 'accusation and misinformation' , perhaps a bit subtle but I thought most people would pick up on it.
Obviously not....
….but to clarify, it was a poke at your cheap shot. Sorry if it confused you.



VeganOstomy said:


> Soy - most is grown for livestock.
> Wheat - what about it? Vegan exclusive?
> Sugar - vegan exclusive?
> Corn - most is grown for livestock.


I've never tried to say eating corn, soy, wheat or sugar makes you a vegan, that would be silly, and trying to imply that I did is a bit purile.
I'm simple trying to bring the discussion back to reality, and away from the misdirection that you employ.
In this case, foods that help or hinder health of people with intestinal issues, and corn, wheat, sugar, and GMO,s are top of the list
I'm not spouting an ideology, i'm suggesting that people try a healthy diet and  see if it suits them.
You seem to have the strange (but very common) idea that 'science' you agree with is correct and 'science' you disagree with is conspiracy.



VeganOstomy said:


> My comment was an observation that the paleo world - especially the gurus like Sisson or Wolf, base their knowledge (and attacks on plant-based diets) on misinformation, myth and meat-industy sponsored studies.   Those studies are often ripped apart for having poor methodology or simply skewing the results to form a favorable conclusion.


That's hilarious, I was just thinking about how much vegan/vegetarian based 'science that i've seen demolished by people that I find to be believable, but then I can admit that my belief does not automatically make me right.

A diet that is all plants is not a plant-based diet, it is a plant diet.

I'm happy to disagree with you and I think we've taken enough space on this post, Perhaps start 
another post for those who are interested?


----------



## VeganOstomy

hugh said:


> I'm happy to disagree with you and I think we've taken enough space on this post, Perhaps start
> another post for those who are interested?


No thanks, I see where this is going and I'm not interested in continuing.  

These disagreements are never settled on forums - I'll let the researchers and scientists sort it out, not the supplement salesmen or the Cattlemen Beef Board.


----------



## Bent128919

Hi! I'm lex. New to this forum. I'm 20 years and for The past month I have been having some major issues with constipation. My stomach feels horrible enemas barely work and more problems keep arising. I noticed a bump in the back of my throat, right above my uvula . It's is red and so is my uvula. My throat is sore as well. It looks as though it could be an ulcer. I'm not sure if it is an ulcer or something more/less serious, as I know ulcers can be a result of Crohn's disease. I'm not sure if the two are linked or not. But I am really concerned about my throat and the fact that I have been having bowel issues for The past month. I do have some blood when I wipe, but I didn't know if that was from straining or not. I've also noticed mucus in the stool. Here is a picture of mouth , do u ever get these sores with your Crohn's? ( ignore all my fillings , sorry! Haha) does any of this sound familiar at All? I heard constipation was not common with Crohn's

IMG_1923.jpeg


----------



## mccindy

Bent128919, You should probably have that looked at - a large red sore bump like that could be the beginning of an infection and should be treated.  My niece had one (she has no GI issues) and ended up with an enormous abscess in her throat that had to be drained and removed.  
As far as constipation, I know several people who have been diagnosed with Crohn's who have constipation as a symptom.  I myself have been diagnosed with Crohn's, and then had that diagnosis taken away, and been told it's IBS, but I've always had constipation as a symptom.  The blood and mucus are not normal.  You should get the throat checked out right away, and then get a referral to see a GI about the blood/mucus.


----------



## mccindy

hugh said:


> I'm happy to disagree with you and I think we've taken enough space on this post, Perhaps start
> another post for those who are interested?


IF you do decide to start another post, I'd be happy to attend.  I find it interesting to have such discussions, even when opinions differ.  I like to hear everyone's side of the argument and see where things end up.


----------



## Bent128919

Mccindy, thanks a lot! I'm going to post the same thread to the general forum so I can get more opinions too. I'm stuck at school in the snow so cant get to a doctor just yet


----------



## Togashi Deckard

For years I could eat all grains with seemingly no problem, though I was never in complete remission... My stool and bowel movements never became completely normal.

However, since my flare-up in November, I've discovered wheat gives me way more mucous and makes me bleed. Extremely disappointing, since wheat is the main ingredient in most of my favorite foods.

The Maker's Diet seems to agree with your original post... There are healthier forms of grains, but according to the author basically non-paleo things (and dairy in a lot of forms, I believe) are more dangerous for sufferers.

(He claims to have put his Crohn's into remission with the diet.)


----------



## Ozboz

I got told by several GI's that diet doesn't affect crohn's or it's symptoms but how can diet in a digestive disorder not affect it I have removed several items from my diet and feel better in a few days doctors huh who do ya trust


----------



## Togashi Deckard

Doctors have no motivation to encourage people to seek solutions unless those solutions are prescribed or surgical. Those are the things that get doctors paid. (Doctors get treated to all kinds of trips and stuff by pharmaceutical companies... Doctors know who butters their bread.)


----------



## mindiemonster

My doctor told me that diet is important, but what works (diet-wise) for one person won't work for another and that you have to figure it out yourself. That said, what works best for me is a whole foods diet that doesn't have any milk or wheat or corn. I don't know if that diet has a fancy, sellable name, but it's pretty simple. When I'm feeling well I'm not eating anything that's processed - but I still keep my diet balanced. I still have carbs, but they're not from white rice or white potatoes or white flour. I have desert - but I make it myself from whole grains and raw sugar. My energy is up, when I'm eating right, my bowel movements are as low as they've ever gotten (about six to eight a day - largely due to the large amount of scar tissue).


----------



## serrickson

All I know is that Paleo gave our 10 year old son his life back after 4 years of hell.  

Four years of trying all sorts of diets and medications.  

Four years of watching my kid lose a part of his childhood.  

He STOOD the entire first half of first grade due to fistula.  All day, standing, because of perianal disease hell.  Just the tip of the iceberg.

He was to be admitted last year after losing 15% of his body weight in a few weeks because the doctor hadn't a clue as to what was wrong with him.  This was the straw that made us try Paleo.

Research?  I got research.  We're on year two now of Paleo.  Still growing, 3/4" as of yesterday as compared to a few months ago.  Still on MTX and AZA, but his labs have had that new car smell of perfection for over a year now.  

He can run.

He can actually get up in the morning.

He can eat when normal people should eat.

He can laugh.

He can socialize, have sleepovers, participate.

He can smile just for the hell of it.  Before Paleo, he use to cry for the hell of it.

Maybe it lasts another week, a month, or a year?  All I know is that Paleo, when done right, like we try to do, gives way more than it takes away.  So I'm an advocate for it, I don't care what other people do, but people need to know it's an option that works in many instances.  Ask my son, he'll tell you.  But then again, ask yourself: what 9 year old eats like this, for as long as this?  One who feels great, that's who.

I guess to me it means a lot because everything is multiplied 1000x with a kid.  If I was diagnosed with Crohn's today, especially after all this with our son, it would be no big thing.  I've already had the gift of childhood.  To see a kid change like this, it's all the research I need.


----------



## DaisyB

How long is it taking people to notice a change in health after moving to a Paleo diet? I've been Paleo for about five weeks now and just been stuck on another course of Pred. I'm worried the new diet isn't working but not sure how long it should take to see results?


----------



## hugh

DaisyB said:


> How long is it taking people to notice a change in health after moving to a Paleo diet? I've been Paleo for about five weeks now and just been stuck on another course of Pred. I'm worried the new diet isn't working but not sure how long it should take to see results?


That will depend on what you are eating and how sick you are,
Paleo covers alot of food and many may be ones you don't tolerate well.

Some people just 'go paleo' and it seems to work for them and others have more going on (intolerances, allergies, disbiosis, abscesses, etc) and would probably be better served by a more structured introduction.

SCD,GAPS and Paleo A/I protocol all have an introductory phase that restricts foods to a bare minimum (bone broth, boiled chicken, pureed carrots, etc) and reintroduces 'allowed/legal' foods slowly to see if they are tolerated and builds up to a varied diet of tolerated 'allowed' foods.

If you just start a 'paleo diet' you may be eating foods that you react badly to (eggs are a VERY common trigger)

This is the paleo diet i would recommend you try,
the period of limiting food is about 30 days(?) and hopefully by then you know which paleo foods you should avoid.
_ Paleo A/I protocol...
"The first dietary recommendation for those with autoimmune disease is to adhere to a strict paleo diet with no cheating. To be clear, this means: no grains, no legumes, no dairy, no refined sugars, no modern vegetable oils, no processed food chemicals. While other people may be able to enjoy the occasional bowl of rice or corn chips or even ice cream, if you suffer from an autoimmune condition you are not one of these people. Gluten should be banned for life. Grains and legumes should never be consumed. Dairy of any kind (even grass-fed ghee which can still have trace lactose and dairy proteins!) should be avoided initially. This may be true for the rest of your life but some people may be able to reintroduce many foods after their diseases are in remission."_
http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

SCD and GAPS intro diets could be used instead as there are more websites giving step by step instructions.....

Just to be very clear, the intro diets are
1/ to allow some healing to occur (simple easy to digest foods)
2/ staggered introduction of foods to identify problem foods

The SCD Intro Diet
http://pecanbread.com/f/how/introdiet.html
The Stages of SCD
http://pecanbread.com/p/how/stages.html


----------



## DaisyB

hugh said:


> That will depend on what you are eating and how sick you are,
> Paleo covers alot of food and many may be ones you don't tolerate well.
> 
> Some people just 'go paleo' and it seems to work for them and others have more going on (intolerances, allergies, disbiosis, abscesses, etc) and would probably be better served by a more structured introduction.
> 
> SCD,GAPS and Paleo A/I protocol all have an introductory phase that restricts foods to a bare minimum (bone broth, boiled chicken, pureed carrots, etc) and reintroduces 'allowed/legal' foods slowly to see if they are tolerated and builds up to a varied diet of tolerated 'allowed' foods.
> 
> If you just start a 'paleo diet' you may be eating foods that you react badly to (eggs are a VERY common trigger)
> 
> This is the paleo diet i would recommend you try,
> the period of limiting food is about 30 days(?) and hopefully by then you know which paleo foods you should avoid.
> _ Paleo A/I protocol...
> "The first dietary recommendation for those with autoimmune disease is to adhere to a strict paleo diet with no cheating. To be clear, this means: no grains, no legumes, no dairy, no refined sugars, no modern vegetable oils, no processed food chemicals. While other people may be able to enjoy the occasional bowl of rice or corn chips or even ice cream, if you suffer from an autoimmune condition you are not one of these people. Gluten should be banned for life. Grains and legumes should never be consumed. Dairy of any kind (even grass-fed ghee which can still have trace lactose and dairy proteins!) should be avoided initially. This may be true for the rest of your life but some people may be able to reintroduce many foods after their diseases are in remission."_
> http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol
> 
> SCD and GAPS intro diets could be used instead as there are more websites giving step by step instructions.....
> 
> Just to be very clear, the intro diets are
> 1/ to allow some healing to occur (simple easy to digest foods)
> 2/ staggered introduction of foods to identify problem foods
> 
> The SCD Intro Diet
> http://pecanbread.com/f/how/introdiet.html
> The Stages of SCD
> http://pecanbread.com/p/how/stages.html


Thanks so much for this Hugh, it's really helpful. I've had a brief look through the links but I will have a more detailed look when I have some more time. 

For the past five weeks I've been eating meat, fish, fruit and veg (and eggs). Guess I may have to scale back further. It's difficult too being on meds because that makes it harder to see what impact the diet is having, IMO. I find that when I've started out on any meds I'll have an improvement for a few weeks/months and then gradually start to get worse again. Not too sure what that means... I'm still new to all this and it's quite overwhelming.


----------



## lenny

I am doing the SCD for my son, but we have never been able to pinpoint any specific trouble foods and although he was technically in remission for a year, he has always been slightly symptomatic and now has an FCP of 500, so not in remission anymore.

He suffers from mild (by this board's standards) constipation, occasionally has pain while going or is super tired afterwards.  He's also very underweight.

The diet worked perfectly for a close relative, so I had hope, but I am discouraged at this point.  He has been eating all organic, grass fed, wild caught, homemade everything and his dr thinks he'd be worse off if he hadn't been on the diet, but how do we know that?


----------



## hugh

lenny said:


> The diet worked perfectly for a close relative, so I had hope, but I am discouraged at this point.  He has been eating all organic, grass fed, wild caught, homemade everything and his dr thinks he'd be worse off if he hadn't been on the diet, but how do we know that?


i can understand how frustrating that would be, i had improvements from SCD but switched to paleo because it made more sense and, thankfully, it worked better for me.
One option is to go back to the intro and see if you can identify any foods causing problems,
Another is to try tweaking, adding probiotics, removing potential trouble foods,
And while doing either, looking at other issues (sleep, meds, stress, etc).

The first thing to check is whether there is something in his current diet that shouldn't be there (some 'natural additive, might be eggs, could be too much dried fruit, maybe nuts...), and secondly, how closely he is following the diet.
Check how he went through the intro to work out which of the allowed foods they shouldn't be eating.
Cheating once a month (according to some SCD sites) is all it takes to keep you sick.....

Just because there are SCD treats and nut breads doesn't mean that someone on the SCD diet can eat them.........
Just because Eggs and Nuts are paleo doesn't mean someone on the paleo diet should be eating them.

I cannot overstate the importance of probiotic foods, 
I am wary of yoghurt because even the SCD yoghurt gave me diarrhoea, but there are many dairy free probiotic foods.
Water kefir is amazing, and with a secondary fermentation it tastes sooooo good.
Sauerkraut is easy, cabbage and salt underwater

Eat food that is alive, there is so much linking gut bacteria to this disease
NOTE: introduce probiotics slowly, there can be reactions and unpleasantness


----------



## lenny

Thank you for responding. 

I make all of his food and he has NEVER cheated.  Fear of surgery is the motivator.

He's a bit picky.  Eats a lot of yogurt, at least a lg bowl every day with honey sweetened cooked fruit.  Also has a fruit smoothie everyday.  His nuts are always blended into the smoothie.  He tries to stay away from raw veggies because he thinks they cause trouble, so no lettuce, cabbage or sauerkraut etc.  He mostly eats salmon, chicken, chicken soup, meat patties, cheese and a variety of blended, vegetable soups.  He seems to feel the same, no matter what he eats, which is not terrible, but it isn't good.


----------



## hugh

I know this won't be popular but that's alot of sugar (dried fruit and honey) .
If this disease is a result of or related to disbiosis then reducing sugar for a while might be important. Nuts and dairy may not be a good idea. Veggies are nutritious but should be well cooked. Replacing normal foods with Scd imitations is not enough. As one website said "if you haven't done the intro you haven't done Scd".

Just my opinion and I only have two small posts to go on but *sugar*. Food in not supposed to be sweet. We just get addicted to it

One site (of quite a few) dealing with what to do when SCD isn't working.....
_
Here’s the breakdown of each of the four horsemen listed in order of most problematic:

    Dairy: The protein Casein (Don’t worry – replace yogurt with dairy free probiotics like these)
    Egg: The protein Albumin (Egg and dairy free SCD is possible – even for breakfast, find out how here)
    Nuts: Nut and nut flour proteins (Find other recipes here)
    Excessive fruit/honey: Way too much sugar feeds bacteria (Read about fructose malabsorption here)_
Links are on original website
http://scdlifestyle.com/2011/03/what-to-do-when-the-scd-diet-isnt-working/


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## Poppysocks

I've done strict paleo. 

I've eaten nothing but lean meats, and cooked/canned veggies. I didn't even eat fruit. I ate no grains, rice, or dairy. Nor did I eat nuts. I actually still pretty much eat like this.

And although improvements were seen. I DID end up getting sick again and having to go back on medication (Remicade). I've been on Remicade for probably around 14 years. Up to around December of last year I was getting remicades at 4x the maximum doseage every 4 weeks. I broke out in Shingles at the end of the year. This kind of gives you an indication of the severity of my disease. Ever since then I've changed my diet trying to get off remicade. But I just can't get off it completely it seems. With the change in diet though, I've been able to spread my Remicades out twice as long as before. It doesn't make me 100% though. I don't even know what 100% feels like. It pretty much just keeps the pain away. The last one I ended up going 11 weeks, but I was in pretty bad shape towards the end (blood, pain in rectum, unformed stools, weight loss, etc).

I think you're definitely right that diet can attenuate the symptoms of this disease, and possibly for some people with mild cases, they can even get off all medications. But thats not the case for me.


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## hugh

lenny said:


> He's a bit picky.  Eats a lot of yogurt, at least a lg bowl every day with honey sweetened cooked fruit.  Also has a fruit smoothie everyday.  His nuts are always blended into the smoothie.


this podcast @14:30 covers the 4 main problems (eggs, nuts, dairy, fruit/carbs) with SCD/paleo foods.
Might be worth a look to help tweak the diet......
http://blog.paleohacks.com/jordan-reasoner-gut-health/


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