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06-14-2012, 01:44 PM   #1
acemagic
 
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This is how I'm going to put my Crohn's into remission

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
[email protected]
06-14-2012, 02:13 PM   #2
nikimazur
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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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Crohn's, Traumatic Brain Injury, Autoimmune Hepatitis (May 2014)


Current meds:Bactrim DS, Azathioprine, Entyvio, levbid
Past meds: Pentasa, Lialda, Prednisone, Entocort, Asacol HD, Prilosec, Lomotil, Lotronex, Nexium, Myfortic, Humira




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06-14-2012, 02:25 PM   #3
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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
06-14-2012, 04:03 PM   #4
EthanPSU
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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.
06-14-2012, 04:20 PM   #5
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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
06-14-2012, 04:44 PM   #6
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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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Diagnosed crohns disease 6 yrs/candida
Temorary illeostomy, 70+cm bowel recsection, ulcerated bowel...currently stricturing.
Meds: failed Infliximab, azathiroprine
Currently on long term prednisone,6mp,humira, nizoral, and vit supplements,b12 shots.

Love the forum
06-14-2012, 04:58 PM   #7
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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!
__________________
-april 2012-diagnosed crohns- only after surgery (resection terminal ileum,ileocecal valve,appendix & cecum)

for me crohns is not cool
06-14-2012, 04:59 PM   #8
fromthegut
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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 !!
06-14-2012, 05:13 PM   #9
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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/...s-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/ar...fractures.aspx

Hope that helps you!!

-Adam
06-14-2012, 05:14 PM   #10
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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?
06-14-2012, 05:25 PM   #11
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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
06-14-2012, 05:30 PM   #12
acemagic
 
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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
06-14-2012, 05:42 PM   #13
Mia E
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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?
06-14-2012, 06:12 PM   #14
acemagic
 
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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
06-14-2012, 06:56 PM   #15
Irene3
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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
06-14-2012, 09:37 PM   #16
kiny
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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=vCVt7...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.

Last edited by kiny; 06-14-2012 at 10:02 PM.
06-14-2012, 09:56 PM   #17
Trysha
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Hello Acemagic,
You reports are most interesting.
Thank you for sharing
Hugs and best wishes
Trysha
06-15-2012, 12:41 AM   #18
Jennifer
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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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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-15-2012, 12:59 AM   #19
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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.
06-15-2012, 12:14 PM   #20
acemagic
 
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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=vCVt7...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
06-15-2012, 03:30 PM   #21
David
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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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06-15-2012, 04:41 PM   #22
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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
06-15-2012, 04:44 PM   #23
David
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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
06-15-2012, 05:11 PM   #24
Irene3
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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.
06-15-2012, 05:22 PM   #25
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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.
06-15-2012, 05:23 PM   #26
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I buy from them and have had nothing but positive results.
06-15-2012, 05:29 PM   #27
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Great
Thanks.
06-15-2012, 06:50 PM   #28
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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
06-15-2012, 07:08 PM   #29
Irene3
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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.
06-15-2012, 07:59 PM   #30
killcolitis
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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.
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