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

ZM1019 · Jul 5, 2012

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 · Jul 5, 2012

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.

acemagic · Jul 5, 2012

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

ZM1019 · Jul 5, 2012

Glad you are feeling better whatever the reason.

Beach · Jul 6, 2012

: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 · Jul 8, 2012

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 · Jul 9, 2012

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!

acemagic · Jul 9, 2012

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?

acemagic · Jul 9, 2012

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

pb · Jul 9, 2012

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.

LaLaNapa · Jul 9, 2012

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 · Jul 9, 2012

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

LaLaNapa · Jul 10, 2012

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.

Snoflayk505 · Jul 10, 2012

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.

Snoflayk505 · Jul 10, 2012

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

ZM1019 · Jul 10, 2012

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.

David · Jul 10, 2012

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!

Snoflayk505 · Jul 13, 2012

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

acemagic · Jul 13, 2012

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

hugh · Jul 13, 2012

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

Snoflayk505 · Jul 14, 2012

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

my buns are burnin · Sep 7, 2012

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

Carrie · Sep 7, 2012

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 · Sep 7, 2012

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

wildbill_52280 · Sep 7, 2012

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 · Sep 7, 2012

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 · Sep 8, 2012

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 · Sep 8, 2012

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 · Sep 8, 2012

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 · Sep 8, 2012

kiny · Sep 8, 2012

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

JohnnyRottenAppleseed · Sep 8, 2012

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 · Oct 9, 2012

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 · Jan 9, 2013

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.

acemagic · Jan 9, 2013

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 · Jan 9, 2013

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 · Jan 25, 2013

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 · Jan 25, 2013

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 · Jan 25, 2013

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

sugacookie · Jan 25, 2013

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 · Jan 25, 2013

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

Hobbes650 · Jan 25, 2013

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.

Beach · Jan 25, 2013

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 · Jan 26, 2013

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 · Jan 26, 2013

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 · Jan 26, 2013

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 · Jan 26, 2013

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 · Jan 26, 2013

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

Beach · Jan 26, 2013

Ok, will do!

acemagic · Mar 29, 2013

Hey guys,

Just an update: My colonoscopy has been moved to July

I'll keep you posted on the results!

-Adam

blazeking · Mar 29, 2013

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 · Mar 29, 2013

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 · Mar 29, 2013

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 · Mar 29, 2013

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 · Mar 30, 2013

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 · Mar 31, 2013

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 · Apr 1, 2013

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 · Apr 30, 2013

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 · Apr 30, 2013

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 · Apr 30, 2013

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 · May 1, 2013

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 · May 1, 2013

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 · May 1, 2013

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 · May 2, 2013

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*** · May 2, 2013

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 · May 2, 2013

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 · May 4, 2013

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 · May 4, 2013

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 · May 4, 2013

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 · May 4, 2013

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 · May 4, 2013

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 · May 4, 2013

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 · May 5, 2013

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 · May 5, 2013

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 · May 6, 2013

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.

monmon218 · May 6, 2013

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 · May 6, 2013

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.

Ozboz · May 6, 2013

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

UnXmas · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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 · May 7, 2013

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

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

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