Really need help with my diet. Please.

[Dereksmagic]

I feel like I always put these really long posts up, so this time I decided that I would just film myself talking a bit and upload it to youtube.

Please take a moment and watch my video, I could really use some advice.

http://youtu.be/qic1de43qTM

Thanks!



PS. Side question, Can someone post me a link where I can find a support group in my area? I live in Orange County, CA

 

[CrohnsChicago]

with regards to support groups, check out the Crohn's Colitis Foundation of America and see if they have one near you www.ccfa.org

or you can try meetup.com and see if someone in your area happened to create a special interest group for crohn's or ibd.

You can also check your local hospitals and ibd clinics and see if they offer support groups or have access to resources.

I'm at work so I can't watch your video yet but I thought I would at least give you some sites to look into.

Good luck getting advice on your diet!

 

[Beach]

Diet information can be confusing, no doubt.

There are the main diets that many try - SCD, GAPS, Paleo. The three are all fairly similar, with some small differences between them. Not to go far into details on those differences, but the main food that these three diets avoid are grains - wheat, rice, corn, oats, etc. The paleo diet suggests avoiding dairy, while the other two say some aged, probiotic rich, dairy is good. It is up to what the individual can tolerate.

Also, the GAPs diet is an updated version of the SCD diet.

Since you are looking for hands on help, a support group you might contact is one of the GAPs. I personally have not been in contact with a GAPs groups myself, so can not vouch for what they do, but have read there is a developed network for this diet. You can see a listing of the different California support groups here (you'll need to scroll down a little to reach California.) ~

http://gaps.me/preview/?page_id=496

The SCD group might have a support network also. If they do I have not read about them, but it would not surprise me if there were some.

All three diets agree with the idea of juicing.

I guess to add, on a personal note I tend to follow paleo ideas. None of the diets strictly work for me, but through trial and error have been able to figure out some additional trigger foods that seem to aggravates my condition. As you mention though, I wasn't able to figure out these triggers till my gut healed enough. Now that this has happened, I've begun a food journal, recording what I eat, and how I feel. Chances are, while in a flare a food journal will not be terribly helpful as nearly anything can upset the gut (to much exercise, over eating, to much fiber, stress, etc).

Hope that helps. Best of luck!

 

[Trevor]

The diet thing drove me crazy for the better part of the last two years but I finally came to what I feel is somewhat of a truth.

Paleo and GAPs are the most scientifically correct dogmas but as previously mentioned even they have holes and aren't Crohn's ready straight out of the box. For instance, most paleo people do dark chocolate which is an almost immediate death sentence for me at this point.

If you're flaring the GAPs protocol is the best place to start, imho. Basically just water and bone broth and slowly work up to stewed meat and veggies as your gut heals.

What you do eat is as important as what you don't. Super nutritious stuff like liver, eggs and salmon are awesome.

My favourite Paleo resource is Robb Wolf. His podcasts will answer any question pretty much ever regarding diet. The one with Matt Lalonde on Paleo for autoimmunity is great. The GAPs people have a good website and the book is easy to find.

 

[Ya noy]

I watched your video and, wow. Your flare has to be fairly severe and causing extreme pain for your doctor to prescribe both fentanyl patches and Percocet. To give you a basis for comparison, fentanyl is an opiate, about 80-100 times as potent and powerful as morphine. It's one of the heaviest duty pain killer that exists and rarely used even in terminal stages of cancer. Combining oxycodone and Tylenol, Percocet is also a powerful opium based narcotic, and taken with fentanyl, it's bound make you feel tired and listless.

Everyone is different and different things work for different people. So there's no way anyone here could possibly know what could work best for you, but when in a full blown flare, a low residue diet (little to no fiber) is usually indicated, at least until there's some improvement. You may just need a little more time on the Humira for your flare to subside.

Eating hot dogs, pizza, and other types of junk/preprocessed food probably isn't good for your digestive system. They may not have been the cause, and I can't prove that they're harmful, but they're certainly not providing your already weakened immune system with any of the beneficial nutritrition it needs to regain strength and power, so it can assist in your body's natural healing process.

The Balasalazide you've been taking is an antibiotic, which fights infections by killing harmful bacterias, but unfortunately, kills the beneficial bacterias (probiotics) as well.

To help recolonize your intestines, you may benefit from supplimenting with probiotics, such as VS#3 or Primal Defense. If you can tolerate dairy products, eating (plain, organic) yogurt, or better (in my personal opinion) drinking kefir, which is available now in most supermarkets. (my husband suffered from severe chronic colitis, but hasn't had a single flare, or any digestive issues since he started drinking a glass of kefir, every day. We now make our own, and he's virtually addicted to it).

Antibiotics can negate probiotics, so they shouldn't be taken at the same time. For example, if you take antibiotics in the morning, give them a couple hours to work their way through your system and take probiotics at noon.

If you decide to go on the GAPS or SCD diet, homemade yogurt or other fermented dairy (such as kefir) is recommended for those who can tolerate dairy. The fermentation process removes roughly 99% of the lactose, but some can't tolerate other milk proteins.

To help strengthen your immune system, you may benefit from juicing--using a juicing machine that removes all the fiber from the juice, and deposits it in a separate container.

A juicer spares your intestines from having to do the work of separating out the fiber in order to extract the nutrients from fruits and veggies, so it is gentler in your digestive system. It also enables your body to digest, and absorb nutrients directly into the bloodstream, far faster and more effectively--retaining nutrients which would otherwise pass right through.

The GAPS, SCD and paleo diets all stress avoiding preprocessed foods and cooking from scratch as much as possible.

If you can't really get much exercise at this time, it would probably help to at least do a little, even if it's just to take a daily walk around the block.

You may want to start a diet/ exercise journey on this forum, as others have done, so we can follow your progress and provide feedback.

Hope this helps, all my best!

 

[xX_LittleMissValentine_Xx]

Some good advice up above!
It is hard because as I'm sure you have noticed there are many different things to try and sometimes they conflict each other.
My advice would be to choose a diet plan, low res, SCD, or whatever. And stick to it as best as you can and see what happens. Give it a few weeks to let your gut adjust and as time goes on you could try adding foods in you want to try one at a time to see how it goes.
As you flare does sound severe, maybe you should try talking to a health professional about trying something like LOFFLEX. This is where you go on a liquid diet to first calm down your gut and then slowly start introducing foods to see what might trigger pain. This way you kinda get to start again. Here is a link for some info on that. http://crohns.org.uk/crohns_disease/nutritional_therapy/the-lofflex-diet
Hope this helps

 

[Dereksmagic]

Thank you so much for the replies. I really appreciate it. I do want to start working on starting a diet plan, and trying to figure out what my triggers are.

I find it difficult to put my finger on what I can tolerate. Because, Like I said in the video, I seem to always be in pain :/

I'll continue to research a diet, and start it and really try and pay attention to notice if things are getting better or not, I really want to try juicing as well. Maybe the added nutrients will help my energy levels, because working out is almost out of the question, I feel like im going to feint just trying to walk to my mailbox. Like the other night, literally, I took a cloth and wiped down my two front leather seats of my car, and just doing that i was soaked in sweat after 3 min, and after I felt like I wanted to throw up.

Ill update my meds in my signature as well so you can see what I have been taking.

I think im going to start a weekly video diary. And make a running thread

Again, Thank you for the support everyone

 

[Moms love]

Lets try to make some chicken soup...

 

[Dereksmagic]

Lets try to make some chicken soup...

Hi Mom! Love ya!

 

[Amy2]

I'm so sorry that you're in pain.

My daughter was diagnosed with Crohn's in 05' at age 24. I think she suffered about a year before first being given Prednisone, which gave her a thankfully, temporary moon face, acne AND put her into remission. She then went on the SCD and has been pain-free and drug free ever since (7 years). She lives a normal, happy life, travels and eats mostly what she wants to now, in moderation - lots of salads and fresh fruit, very little bread. She's an RN who sees the ins and out of the medical world and has opted not to be tested or followed closely by a GI. Her philosophy is, it she feels good, she isn't going to investigate. She's had no scopes or xrays since diagnosis. Yet, the prep for a scope can cause a flare...and xrays aren't good for you, so I can't tell her she's wrong. She's 32 and has to make these decisions for herself. Whatever happens in the long run though, she is happy and feeling good, now. No drug side effects to worry about, at least...

My 16 year old son was recently diagnosed and we are going to try the same diet with him, with one difference, he will do it as a vegetarian. We have quite a mixture of hope that it will work for him, too and fear that it won't. My son was given steroids for only 3 days and did not get the moon face or pimples (he's 16 and has perfect skin, it would have been awful!) Then he went on an all liquid diet of Peptamen only, no food. 6 weeks will be up on May 6 and then we start the SCD. He is soooo looking forward to eating homemade yogurt, eggs and applesauce, I can't tell you!

That's what we're going to try..I wish you and us luck!

 

[Ya noy]

Lets try to make some chicken soup...

I feel homemade chicken soup (a/k/a "bone broth" in paleo terminology) is one of the most beneficial forms of nourishment you can consume.

During a severe flare, to eliminate as much fiber from your system as possible, you may want to try straining and drinking only the broth, and limit flavoring of the chicken and bones to milder veggies: carrots, onion, celery and perhaps a little garlic, as long as you strain the broth, and don't eat the fiber.

This is suggested just to avoid using any veggies that could produce painful gas, such as cabbage, broccoli, beans, peas, etc. If you're having problems with gas, you may also wish to avoid sorbitol fruits such as: apples, pears, prunes, and gas producing carbs, which include wheat, oats, potatoes and corn. Rice seems to be the be the sole exception, for some, not all.

We make large pots of chicken broth (organic, grass fed chickens) which we boil way down and freeze, so we always have lots of broth and soup base stock.

You don't need an entire carcass to make soup. A couple chicken legs will do. For really quick beef broth, we just fry up some hamburger, add water and boil down for a half hour or so, and strain.

It's not like we became natural health fanatics by choice. If prescription meds had worked to resolve our health issues with a few pills, that would have been great! But that didn't happen, and we've achieved far greater improvement health wise through diet and exercise.

 

[Dereksmagic]

To be honest, I am kinda happy/excited to start eating healthy anyway. Maybe this forced lifestyle change is what I needed. Iv always been into bulk-eating and working out.. now its the other side of the coin, healthy low-cal foods is where im headed, I don't have a problem with weight loss / or gaining weight I should say.

I am having gas issues right now, (Mixed with constipation from a mixture of the iron and painkillers) I think it might be from the soysauce im using on the rice.. Iv been using regular sauce instead of the gluten free stuff, I need to pick up some more. So that's probably not helping.

I also really like seafood, I just picked up some frozen tilapia, salmon, shrimp, and scallops. - I hear these are easy to digest.

My one downfall is sushi. I'm not sure if its actually bad for me though. Im mainly sticking to nigiri / sashimi - no rolls, and no veggies, and Ill just start bringing my own soysauce with me. But I dont seem to hurt after eating, unless i over-eat.

So, what I THINK i'm going to try doing starting next week is make a lot of broth, and try and keep my diet as liquid as possible for a week or so, and really see what that does for my stomach. and then each week Ill add in a different seafood that I have in the freezer right now, and ill cook it plain to start, no spices and stuff, and see how that affects me. - Then if all is good. Ill go do some sushi - What about other meats? Im sick of chicken, Before I got sick, chicken was a staple food for my diet, and I am so SICK OF EATING IT. so what about steaks, liver, pork chops, etc.. What other meats should I consider trying? I only really use to eat ground beef and chicken, so im not sure about pork or other types of meat.

I know for sure that I will no longer be eating crap foods like beef jerky, Pizza, Cookies, cereal bars etc...

I really do need to figure out what I can snack on though. That seems to be hard to find something that's going to be gut-safe, stays good long enough to leave laying around to snack on, and is going to be semi-satisfying to eat. - Like Applesauce? Sugar-free Jello?, There has to be something to snack on that has a bit more "Substance" to it so its more filling.

 

[Ya noy]

Applesauce is ok on the SCD diet, as long as it is organic with no additives, but not on a low residue diet because it contains fiber. Only clear apple juice would be permitted on the low residue fiber.

Unfortunately, if your problem right now is gas, well apples are a particularly gaseous because of the sorbitol in them. You might do better with herb tea, sweetened with honey, at least for the time being.

Diet jello? Only permitted on SCD if it is made with saccharine not nutrasweet, which is very bad for your system. The paleo diet prohibits all artificial sweetner. On SCD and paleo, only sweetener allowed is honey and fresh fruits.

Rice is not legal on the SCD diet because of the complex carbohydrates. SCD=Single Carbohydrate Diet, meaning one one molecule carbs such as fructose and sucrose are "legal". Rice contains sarch, which is a complex carb, illegal on SCD.

However, rice is permitted on low residue because it does not cause gas and most of the fiber (and nutritional value) is removed during processing, so it is permitted on the low-residue diet.

It's best to make a decision on one diet, and adhere to ALL the principles of that one diet for at least a month and see how you do, before introducing other foods to isolate what you can or can't tolerate.

If you try mixing things up, you won't have any way of knowing what dietary principles your body responds best to, and/or foods you system can or can't tolerate best. My husband recently had to follow ALL principles of 4 different diets for allergy testing purposes of various doctors. All he was able to eat for a month was rice, white bread, chicken and bananas, but some end up restricted to liquid diets, or even intravenuous tubes, so yes, diet can difficult to adhere to, but there are worse alternatives.

Oh, soy sauce? Kikkoman's is a fermented soy sauce that has at least some nutritional value, unlike most other commercial brands.

 

[hugh]

Please take a moment and watch my video, I could really use some advice.

Thanks!

PS. Side question, Can someone post me a link where I can find a support group in my area? I live in Orange County, CA

OK so I watched, so much to talk about.......

As far as diet, somewhere in the paleo/SCD range is your best starting point.
Some GI doctors say that diet doesn't matter but they are taught that and haven't the will or brains to question for themselves.[1]
Some Gastroenterologists have started questioning the dominant paradigm and fully endorse and promote paleo [2].....
Watch this one

If you are in pain it makes sense to eat a low residue diet as the passage of food through an ulcerated inflamed intestine can cause pain (one possible cause of pain)
So as far as diet, i'd recommend a low residue paleo diet with the expectation that you can add other foods as any improvements occur..

Start with well cooked veggies (but carrots not brassicas) and meats (broiled or stewed), bone broths, and bananas.
SCD intro..... http://pecanbread.com/f/how/introdiet.html
Must read.... http://eugenia.queru.com/2012/12/08/the-gut-and-paleo-scd-gaps-fodmaps/

My experience and research makes me believe that most if not all of the problem is due to leaky gut and dysbiosis (caused by antinutrients) and if these are addressed then you should see a huge improvement in symptoms and medications.[3]

Foods all contains nutrients and antinutrients.
The key is to avoid all possible antinutrients .
“Any food which is low in toxins can be included in our diet. Low toxicity is the key, because a missing nutrient can be obtained from other foods – or from a multivitamin or supplement. But there are usually no antidotes to a toxic food.” “Paul Jamminet”

There is plenty of research showing the negative effects of wheat on the intestine (both leaky gut and dysbiosis)
The proteins in wheat are the most researched but all grains contain similar proteins that may be problematic.
Wheat has been demonstrated to promote intestinal permeability and the transport of other molecules through the gut lining (which spells immune problems)
The carbohydrates in wheat lead to disbiosis and abnormal microvilli [4]
Legumes contain saponins and some of these cause similar problems to grains.
Sugar and carbohydrates will affect gut bacteria and are inflammatory.
Vegetable oil is inflammatory and should be avoided [5]
Any processed foods should be avoided (gluten, soy, additives, toxins, veg oils etc etc)

Rice is the only grain I eat because I only introduced it after a year or so of no grains with no adverse reactions so I believe it to be safe [6] (so I DON'T include it as **** food – unlike wheat, which is **** food)

Ensure is ****, you are getting nutrition from it but you are getting more antinutrients than it is worth (my opinion)
Juice is good, high nutrient, low residue, but only you will know what juice gives a bad reaction.
Water kefir is a good probiotic, start slowly an build up.

Since you are constantly in pain you cannot tell what is a 'safe' food or not.
Some pain is due to ulcerated lesions( from what you ate weeks/months ago), some due to lumps passing along an ulcerated inflamed intestine, some is fool/stool passing through restrictions, some is gas from bacteria, some from reactions to foods that would not happen without the leaky gut)

“If we prioritize these in terms of damage caused, then ulcerative colitis is an infectious and autoimmune disease, since these two factors do the most severe damage. It is generally unclear which is doing the most damage. Food toxins and malnutrition continue to be secondary sources of damage.
On the other hand, if we prioritize chronologically in terms of the original causes, the disease is originally caused by food toxins and malnutrition and sometimes antibiotics, which cause intestinal damage and infections, followed by autoimmunity.”
http://perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/

Then if all is good. Ill go do some sushi - What about other meats? Im sick of chicken, Before I got sick, chicken was a staple food for my diet, and I am so SICK OF EATING IT. so what about steaks, liver, pork chops, etc.. What other meats should I consider trying? I only really use to eat ground beef and chicken, so im not sure about pork or other types of meat.

any animal, try them all

lamb, (oily) fish, rabbit, offal, -to begin with less fried, more stewed or broiled –
-some people have issues with beef

I am having gas issues right now, (Mixed with constipation from a mixture of the iron and painkillers) I think it might be from the soysauce im using on the rice.. Iv been using regular sauce instead of the gluten free stuff, I need to pick up some more. So that's probably not helping.
My one downfall is sushi. I'm not sure if its actually bad for me though. Im mainly sticking to nigiri / sashimi - no rolls, and no veggies, and Ill just start bringing my own soysauce with me. But I dont seem to hurt after eating, unless i over-eat.

try wheat free tamari instead of soy sause and if it is still a problem then discontinue for a month and retest.
I make sushi with lemon juice and honey rather than sugar and vinegar.

I really do need to figure out what I can snack on though. That seems to be hard to find something that's going to be gut-safe, stays good long enough to leave laying around to snack on, and is going to be semi-satisfying to eat. - Like Applesauce? Sugar-free Jello?, There has to be something to snack on that has a bit more "Substance" to it so its more filling.

I mix almond flour with apple sauce (my son has cocoa and honey with it). This adds substance if you can tolerate the nuts

Leftovers are great, cook extra meat!

paleo friendly food and restaurants in OC
http://www.primalpalate.com/forum/paleo-by-city/north-orange-county-ca/
grain meat (cheaper in bulk) -http://paleohacks.com/questions/52400/orange-county-los-angeles-county-need-a-meat-share#axzz2Ro6556rd
paleo doctors
http://authoritynutrition.com/17-low-carb-paleo-doctors-with-blogs/
http://paleohacks.com/questions/292...ioner-in-the-orange-county-area#axzz2Ro6556rd


[1] 10 hours in 4 years?
-In 2004, the authors surveyed all 126 US medical schools on this topic and 106 of them (84%) responded, making it the most comprehensive survey of its kind.
The findings? In 17 of the medical schools, students were getting less than 10 hours of nutrition education during their entire four years and in over half of the schools, they were receiving no more than 20 hours.
http://www.sarahbesthealth.com/think-doctors-know-about-nutrition/
[2] (for example - Dr. Joseph Brasco of the Huntsville Center for Colon and Digestive Disease – not a cure but one of the most important tools to manage the disease)
http://www.crohnsforum.com/showthread.php?t=48559
or
http://www.youtube.com/watch?v=C8xLkEHZxDg

[3] This is an excellent series of articles from a paleo based diet website..Please read all 4
http://perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/

[4] can't find the links but google it or get back to me if you want specifics.

[5]just one of many, don't take anything I say as gospel, do your own research.
http://www.eat-real-food-paleodietitian.com/paleo-diet-and-vegetable-oils.html
good fats...
http://paleodietlifestyle.com/paleo-fats/

[6]while I eat rice I still believe that carb intake should be appropriate to energy needs.
I eat rice a couple of times a week as it makes the paleo meatballs and chicken curry 'special'. http://perfecthealthdiet.com/2011/06/is-shou-ching-to-blame-for-our-rice-habit/

 

[Dereksmagic]

WOW Hugh! Thank you for all the information and answering some of my questions specifically. You provided a very good amount of reading and research for me with the links. Slowly but surely I am starting to feel a little less confused with the more I read.

I also contacted my local support group that meets up once a month. I will be attending the next meeting

My mom just dropped off some "bone broth?" maybe not, She boiled some chicken in broth and threw in some potatoes. No seasonings, and nothing else. Its tastes great, and seems very lite.. I just ate some, so Ill see how my stomach does with it.

All the replies and advice are getting me excited to start trying everything out and have the potential to lower my pain and live a healthier lifestyle

Thanks again to everyone.

 

[hugh]

glad to help,
i never did well with potatoes but other tubers were fine,
At some stage most foods need to be tested (not eaten for a period of time, and then reintroduced), but get a grip on a basic paleo/SCD diet and then see where to tweek.

 

[UnXmas]

Hey, I just watched your video, though I haven’t read all the responses to this thread yet, so apologies for any repetition.

I have the same problem as you – I have symptoms all the time, but my symptoms also vary irrespective of what I’m eating, so it was extremely confusing to me when I was trying to work out if specific foods caused me to react. Eventually, with trial and error, I concluded that I don’t have any particular “bad” foods, but I do do better on a low fibre/low residue diet (like you were recommended at the hospital) than on a diet with large amounts of fibre. I don’t have to be super strict about it though – I can manage some fibre, so I don’t bother counting out how many grams I have per day or anything like that, I just generally opt for low fibre options (white rice and white bread rather than brown, cornflakes for breakfast rather than bran or museli, no big helpings of veg, etc.).

I expect a lot of people will advise you to eat organic, avoid anything processed, avoid sugar, try juicing, etc. While these are often healthy things to try, I personally don’t benefit from them. There’s no dietary rules which apply to all of us. I do just fine with sugar (in moderation of course). There’s no need to give up foods needlessly, as it can mean your diet quickly becomes very restricted and limit your ability to join in family meals, eat out, etc. If you try something for a while – a couple of weeks or months, say – and it doesn’t help you, don’t be afraid to give it up. When I was first trying to work out what to eat, I became very phobic of eating practically anything, because everything gets labelled as bad by someone.

I think the key point is that nothing works for everyone, so you really do just have to experiment to work out what suits you. You also have to take into account other factors in your individual situation – do you have a stricture? Are you over or underweight?, etc. etc. However, there are some things that seem to affect a lot of people, which can be good suggestions of what to try. For example, I think dairy poses problems for a lot of people, although it doesn’t for me. Fibre is also difficult for many people with Crohn’s.

I don’t think your GI is a “quack” necessarily, I think he’s just looking at it from a medical point of view. Diet can’t actually put you into or out of remission. It hasn’t been proven to affect Crohn’s inflammation as measured by scopes and blood tests in the way that medications can. Doctors seem to be interested in test results far more than actual symptoms, so that might be why he dismisses diet even though for a lot of us it affects our day to day symptoms.

The piece of advice that I wish I’d had when I first started looking at diet as it relates to my illness is to relax about it! Personally I don’t think very restrictive or “alternative” diets are a good idea. I think it’s also important that you realise you can’t really control this illness. It’s not your fault if you can’t get into remission or reduce your symptoms – it’s not always a result of diet or lifestyle and there are limits to what we can do.

 

[xX_LittleMissValentine_Xx]

I just wanted to add: You say its hard to know what hurts because you always hurt. It could literally just be that right now you are so sore on the inside that that is just the case, anything passing through will hurt you.
When you start getting a bit better it might be easier to try and work out what hurts more specifically.
Sorry if anyone else has already said this, I kinda skimmed through.

 

[monmon218]

Dereksmagic

Coming from a Asian background.. I'm not japanese but chinese.. I was told to avoid shrimps. In our chinese background.. shrimp was considered to be one of the most poison"ist" thing to eat when our immune system is compromised. My grandma once said that if we eat shrimps while we have a rash or something.. the rash will become a bigger rash. It was the "cold" poison - there are different types of poisoning in the chinese background i think..


I have never been a fan of seafood ever since young - always hated the smell of it. However as I was diagnosed with CD, I fell in love with sushi. I was told that the raw stuff and shrimps are good though - so here's my chinese advice.

 

[PopcornFiend]

By the way, did you go to the support group? There's one in your area at Saddleback Memorial Medical Center in Laguna Hills. It's through CCFA. They meet 2nd Thurs of every month from 7 to 9 pm.

24451 Health Center Drive
Laguna Hills, CA 92637

Saddleback Women’s Hospital
at Saddleback Memorial Medical Center
Conference Room 2 & 3