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Hm high fat's linked to bile too.

I just tried psyllium husks yesterday and it seems to eliminate my problem with sugar. Was able to eat a handful of chocolate chips without bloating, gas, diarrhea or bile in stool.

Idk if you can use the stuff on an ileostomy though. It fuctions similar to cholestyramine if you've ever been prescribed that by a doctor.
 
Isn't cholestyramine used to slow diarrhoea though? I have the opposite problem, I need to speed my digestive system up to feel less bloated. I only empty my bag once or twice a day which is very low output.
 
Diarrhea can be caused by the same thing that causes slowed digestion. Poor bile 're absorption rates in the ileum which is common with Crohn's patients if there's a backup of bile it takes longer for new foods to move up, and slow digestion of existing food due to the bile salts being the wrong type. I had both slow digestion and diarrhea as a result
 
I didn't, sugar would cause immediate release of bile in stool then slowed digestion the rest of the day. Increased fullness, cramps and pain. I read PubMed studies about how sugar and Crohn's independently effect bile, connected the dots then found things that solve the problem. The studies and details are in my log.

Cholestyramine was what pointed me in the right direction so I found a natural analog, not the exact same method. Taurine and cholestyramine or psyllium husks are the only things I found so far that directly effect the bile problems Crohn's has
 
I never try and self-diagnose anymore, my medical problems are too unique for research papers. Don't you find yourself seeing patterns that aren't there? I used to do that a lot with my diet. I got so much better when I stopped trying to analyse everything I ate. With this fullness problem, I think it's just delayed stomach emptying and some ileostomy version of constipation. It's just hard to keep eating enough on the days I'm really bloated and my weight has stopped going up the last week or two because I've had too many days where I just gave up and didn't eat so much.
 
I had problems following anecdotes for advice and supplements but since I'm now studying things that are borderline universal Crohn's pathogenisis I've had much better results. The intermittent fasting diet and psyllium husks are the result and the best response I've had to home treatment.
I've never seen patterns that aren't there because I've never seen patterns or useful advice previously, just failed herbal remedies and foods I can't eat.
On intermittent fasting I have more energy and feel better than I have in about 8 months
 
But with patterns, I mean seeing connections between certain foods and symptoms. You don't try and see connections between your symptoms and what you eat? Or I'd read an article and apply its finding to my illness then later realise it didn't apply at all. Now I only pay attention to the really obvious, and don't worry so much about eating the wrong thing. I looked at the posts you mentioned in your log though, and I think you're using more complicated science than I ever did. But I have had much more success since I stopped trying to control my illness with diet. I definitely feel much better since I stopped worrying about it.
 
Nope the patterns I have are very obvious, but I don't understand what's causing my skin lesions. It seems dietary but they take so long to form and are so sporadic I can't find a pattern.

My reactions to foods are sudden and extreme. There's no doubt about gluten, canola, nuts, or high fructose corn syrup. The reaction happens within minutes and lasts days.
I have experienced false leads but only because I had a new unexplained response and had to know why and to what.

I'm starting to think salicylate is one of them. Not using products that contain it has helped my skin but that may be a coincidence involving other ingredients. Ingesting them hasn't shown noticeable reactions, the only dots it connects is skin problems and why I can have instant coffee but not ground

I'm moving away from the bacteria theories because either I can't home treat it, or it's not effective. I'm starting to believe bacteria may be the egg not the chicken
 
But from your log it looks like you've been trying to find the foods that cause you problems for a while (years) but you're still unsure about a lot of them. And also that you've often changed your mind and decided that foods you thought were good for you actually aren't, i.e. you saw patterns (correlations) between your diet and symptoms that weren't actually there. And the salicylate idea would be trying to apply something you read to your illness. I used to do that a lot too, then I'd find it wasn't working and move on to the next thing. I guess I just see your attempts to fix your illness through diet as similar to what I used to do, and for me it really didn't help, I just got neurotic about my diet and tried to acheive a level of wellness that it just wasn't possible for me to do. But maybe I'm wrong and you'll do much better, but I felt I should at least warn you, so it may be easier for you to recognise the problem should you experience the same.
 
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InstantCoffee, the way I look at it, you still have inflammatory foods in your diet. Dairy, eggs, and oats from what I recall reading in your own thread. While you may think you tolerate them my theory is that all this creates a viscous circle where your gut will never properly heal...Which I think contributes to leaky gut and nutrient malabsorption for many struggling with weight gain issues. Just my thoughts, I know that it would be inconvenient to find replacements for dairy and grains since your diet is so minimal already. But if you've been taking a good dose of L-glutamine everyday or other healing supplements and your not making any progress, then there must still be something in your diet causing an inflammatory response.

While I don't have weight gain issues myself, I'm to the point where I'm going to try an auto-immune type diet to heal leaky gut to fix my huge list of non-digestive symptoms. Removing all common inflammatory food groups while supplementing with L-glutamine, gelatin, and bone broth for a good say...6 months. That means: no legumes (soy too), grains, dairy, chocolate, eggs, nightshades, refined sugar, alcohol, seeds, nuts, dried fruit, etc. Maybe I'm wrong, maybe some of you have tried such a minimalist healing diet and got nowhere, but it seems to be as far as we can take a dietary approach. Over the past 5 years trying to get remission I've always cheated with wheat, rice, nightshades, dairy, chocolate, eggs, beans, nuts, alcohol, basically everything. I've never really dedicated a good half year to completely avoiding all these potentially inflammatory foods. I feel like I only have my self to blame for not believing in the protocol and going in circles. I guess only time will tell.

The bacteria side may be a secondary cause of leaky gut that is better treated over the long haul (a few years) with low carb diet and low FODMAP produce choices. Unless you have some rare pathogen that a doctor could help treat somehow. Short of herbal antibiotics that's all you can most likely do yourself. Maybe specific fermented probiotic and prebiotic foods can help restore a good bacteria balance, but that might not be effective until you make progress healing your gut. I have an appointment with my old GI tomorrow to see if I can be tested for SIBO and even I'm still leery of taking antibiotics.
 
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UnXmas:
My problem has been cyclical for years but it's not a mystery to me at all that I can avoid foods and feel significant improvement. The question becomes is the food I have to now avoid that I was previously eating safely an antagonist in the diet, or simply a product of something else causing worsening of symptoms?

If it's something else, I need to be sure I eliminate that before it gets worse. The most reasonable way to know if something is causing a progressive deterioration of symptoms is to understand what causes the inflammation / symptoms which is why I've been looking for causes of Crohn's.

The bacteria cause was highly supported by the fact my symptoms have always linked back to grains and sugars, so I threw all my effort at that as my focus. I used probiotics, sugar restriction, natural anti-bacterial agents etc. but nothing produced positive results on that front. I believe maybe the first time carb restriction worked it is possible I had SIBO or candida, but it's not working like it did before, and I can't have rice anymore like I could then so something is different.

I had swollen / infected lymph nodes at the time and the diet saved me from those where doctors failed to help. My approach has produced amazing results on numerous occasions, it just takes a lot of misses before I find the target.

Right now I'm feeling very good. I've even started weightlifting again. I have energy all day, I do a fairly physical job and I don't need to stop and take breaks all the time anymore. What I've found right now has definitely been worth all the missed steps and research.



WingedVictory:
My concerns would be
-How high is your calorie intake going to be
-How diverse will your micro nutrient intake be, will you be getting all your vitamins and minerals naturally?
-How high will your cholesterol intake be via animal fats

The last time I got what was lasting 'remission' I suppose, I cut dairy and sugar and only had rice as a grain, fruits / vegetables, meat and eggs as food.

I did this for about 2 months strictly while supplementing undecylenic acid for candida (not sure if this helped or not) and high doses of vitamin C. During this time I had no symptoms and I was able to re-introduce spicy and high fiber foods I hadn't been able to eat in years.

I have concerns about blanket elimination diets though like what if you're nuking your natural probiotics, then you have to rebuild those from scratch. If you do it wrong you may just be plowing the fields for bad bacteria, and we don't know enough about proper bacterial balance.


Just thought I'd add, I'm also trying DMSO right now but I don't want to go too much into it, it's not something I'm 100% convinced of the safety of to advocate for others.
 
InstantCoffee - that's ok, as long as it's helping you. I tend to feel I have a responsibility to say so when I think others may be having problems they haven't realised, but I only have your posts to go by, so I'm sorry if I reached the wrong conclusions. But since I do feel the need to point out problems, I would also add that candida and leaky gut are not proven in the way that you and WingedVictory are using the terms. I know there is such a thing as intestinal permeability, but its role in health and how to treat it are unclear. I've described my experiences with candida in this thread: http://www.crohnsforum.com/showthread.php?t=67910&highlight=candida

Ok, I've said my bit now. :)

At my pre-op assessment this morning my weight was 38kg (in clothes). Up from 29kg last Summer, and from 33kg after my surgery last Autumn. I did this by eating more than I'm comfortable with a lot of the time, and supplementing my diet with biscuits and chocolate and drinking Coke (the rest of my diet is healthy).
 
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Just thought I'd add, I'm also trying DMSO right now but I don't want to go too much into it, it's not something I'm 100% convinced of the safety of to advocate for others
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That's a new one on me. What does it do?
 
No doubt leaky gut is poorly understood, as is prevalence of candida.

For now leaky gut is the closest theory we have to an explanation to crohn's induced food sensitivities, so I choose to pursue it from that angle until.

DMSO is a topically applied solvent that's treated as a pancea, if you will. It's a powerful anti-oxidant, anti-inflammatory and pain reliever. It's been used successfully to treat a handful of medical conditions but it's currently only FDA approved for interstitial cystitis.

It's believed to be safe and only has 1 death attributed to an allergic reaction.

The risk is that it's a powerful solvent and can transport chemicals across the skin into the blood so careful control of contaminants when applying it must be exercised.

We have posts by multiple people on the forums saying it's worked to end flares or even bring remission.

It also doesn't have immune suppressing effects like a biologic.
 
I had nutritionists and other alternative medical practitioners treat me for leaky gut amongst other things. I only got sicker, it was disappointment after disappointment, I wasted time and money and effort eating a diet that isolated me socially. People who promote unproven medical conditions and treatments do a lot of damage and cause a lot of pain.

Leaky gut is not a recognised medical condition, and no diets, supplements or anything else have been proven as leaky gut treatments.
 
Alt medicine is likely 90% quacks, and the other problem is they likely treat with blanket treatments like "Hey, garlic helps digestion, give them garlic!" Garlic messes me up.

You'd have to find a good one that is able to actually look at you on an individual level instead of just taking the most common diagnoses as their immediate approach. It's one reason I don't care to invest in one. I'll be really pissed if I go to one and they are way off base and when I try to explain what I know they put down my ideas because they're an expert. I will be livid, cause I have had doctors do that and be wrong in the past.

As far as leaky gut it's not 100% bunk. From wiki:
http://en.wikipedia.org/wiki/Intestinal_permeability

A proposed medical condition called leaky gut syndrome has been popularized which theorizes that restoring normal functioning of the gut wall can cure many systemic health conditions, but there is little evidence to support this theory, and no evidence that so-called 'treatments' for 'leaky gut syndrome', such as nutritional supplements and a gluten-free diet, have any beneficial effect for most of the conditions they are claimed to help.[7]
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Increased intestinal permeability is a known thing, but leaky gut syndrome and its cause / effects are not scientifically validated.

If you look up Peyer's Patches though you'll see their implicated in the pathogenesis of Crohn's.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004000/
 
I am happy you are having success without worrying as much. I think there comes a time when every patient should reach that point. Unfortunately, for people like instantcoffee and I are not at that point yet. For instance, I have spent too many years not worrying about what went in my system, and overtime, I became intolerant to more things. It took me a while to realize that I had to control what I ate. So I am on the other extreme end, but I feel great about - partly because I know that at some point I will find some middle ground.
 
I did say in my post above:
I know there is such a thing as intestinal permeability, but its role in health and how to treat it are unclear.
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So we can agree that it at least exists.
 
Today I finally got back the results of my gastric emptying study, so now I've had it confirmed I have gastroparesis. It doesn't mean anything more can be done to stop me feeling so full but it's nice to have some objective confirmation.
 
Please keep this discussion focussed on supporting people who are trying to gain weight! That's what this thread is for. :)
 
UnXmas said:
Today I finally got back the results of my gastric emptying study, so now I've had it confirmed I have gastroparesis. It doesn't mean anything more can be done to stop me feeling so full but it's nice to have some objective confirmation.
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Does having gastroparesis relate to not being able to absorb nutrients and gain weight?

It makes me wonder if prokinetic agents like low dose naltrexone would help with that.
 
Does having gastroparesis relate to not being able to absorb nutrients and gain weight?
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Not directly, but it can lead to bacteria overgrowth due to undigested food, and the bacteria overgrowth can cause malabsorption. Mostly gastroparesis just makes it hard to eat enough due to fullness and other symptoms.
 
UnXmas said:
Please keep this discussion focussed on supporting people who are trying to gain weight! That's what this thread is for. :)
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I have removed the posts that were obviously off track pending starting another thread for that discussion.

As UnXmas has said - please keep things on track here as this is a support group to GAIN WEIGHT - not discuss side topics.
 
Words can't express how nice it is to slip up and eat something I shouldn't and not lose sleep or get diarrhea, just some bloating and very minor nausea.

I tried some really natural chocolate with caocao nibs in it last night. Didn't sit well but something like that normally would put me out all day the next day with diarrhea.

Current protocol is working good. I just added MSM to the mix and got a shipment of pure taurine powder.

Salicylates don't appear to be my problem, turns out I had a false positive. When I cut salicylate skin topicals i also cut sulfates which were the real reason for my acne, but now i know to buy sulfate free soap and shampoo.
 
I'm taking a break from gaining weight, now that doctors have stopped threatening me with hospital. My digestive system and my mind need a break from the stress. I'm still going to pay attention to what I'm eating so I don't lose much. I'm still more than 15kg underweight so I can't afford to lose much.
 
My nutritionist says I need fat to gain weight; she suggested coconut oil and Udo's oil blend:3-6-9. Oil or fat cause me stomach pain. Anyone have any idea why?
 
What kind of pain is it? Some fatty foods can cause heartburn. If it's heartburn there are many treatment options, and some types of fatty food will give more problems than others.

Besides heartburn, I know rich or greasy foods can be hard to digest, I'm not sure why. Are you able to eat small amounts of fat without pain? Do you have a problem with all fats and in all forms? E.g. is it oils that mostly cause you pain or would you get the same pain if you added cheese or butter to meals? What about smooth nut butters? There are many fat options so you may find something you're ok with.

Fat is very helpful to gain weight, and some is necessary for your health, but if it's really problematic for you you could probably gain weight on a diet that isn't high in fat, though you'd need to eat more as carbohydrate and protein foods are lower in calories than fats.
 
I used to get pain from canola oil. Maybe corn oil too, I remember corn oil gave me issues but I don't recall if it was the same response as canola.

If I ate it my small intestines would flood with bile, motility would stop and I would get knife-like pain in my stomach.

It was from the small intestines overflowing with bile and other fluids and backing up the digestive process. I can tell because my stomach felt empty but if I forced myself to vomit, I could feel it spilling back into my stomach, then I would get relief after thoroughly emptying everything out.

The pain was so bad I couldn't stand upright because my abdominal muscles would put pressure on my gut which already felt ready to burst. Because of all the pressure it often felt like I had diarrhea or a big BM but I couldn't go, then when I threw it up that pressure / urge would go as well.

Is it anything like that, or a different kind of pain?

How are you with home made chicken / beef broths? Many people with CD have problems with vegetable oils. Coconut and extra virgin olive oil are the only ones ( to my knowledge ) I can safely tolerate.
 
I am fine with broths, but I always take all the fat out of homemade broth. Should I keep it? Good to know others have problem with veggie oil. Coconut oil bothers me. Udo's oil, a combination of veggie oils, is ok in very small amounts, like 1 tsp in a bowl of rice.
I just bought light olive oil and hope I can ingest more of it. I salute with olive oil and it seems fine. At least I am not losing weight, but I wear size 0 and used to wear size 8, 2 years ago. Size 0 is very hard to find; I did find a GapKids jeans that fit great.
 
Gail Jothen said:
I am fine with broths, but I always take all the fat out of homemade broth. Should I keep it? Good to know others have problem with veggie oil. Coconut oil bothers me. Udo's oil, a combination of veggie oils, is ok in very small amounts, like 1 tsp in a bowl of rice.
I just bought light olive oil and hope I can ingest more of it. I salute with olive oil and it seems fine. At least I am not losing weight, but I wear size 0 and used to wear size 8, 2 years ago. Size 0 is very hard to find; I did find a GapKids jeans that fit great.
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You should keep it in if it doesn't make you sick.

I was more curious if you notice a difference between non-fried animal fats and vegetable fats.

Fats are easy to absorb calories and may be an important part to a diet for someone in recovery stages of Crohn's.

It may be possible for you to reintroduce coconut / olive oil in the future, but I can't make any guarantees. I've had intolerance to them both in the past but it's since gone. They both can be a good part of a diet when tolerated, but you shouldn't try to eat things if they make you sick, even in small amounts they could be triggering a bad response in the gut.
 
i've always used fractionated coconut oil for cooking, or anywhere oil is required. I've never had issues with it, but even if I had intolerance, it was so long ago I've forgotten.

I've recently discovered the same company who produce the oil have margarine so I started to use it. That opened a whole new world as I have never been able to eat regular butter. Perhaps you can see if a margarine spread is available? It may be that the margarine format is easier to tolerate? Again, just use sparingly at first to get used to it.

Coconut oil requires gradual introduction as it is a medium chain fat, so the absorption method is different than olive oil. That might be what is causing some difficulty.

Have you tried cottage cheese for weight gain? You can get the low fat version which is packed with protein. I am addicted to it.

Greek yoghurt is also great, the low fat version with a sprinkle of cinnamon powder and honey if you can tolerate. It is full of protein and such a treat :)

If you need more info on the brand I use its here http://www.ceres-mct.com/ sorry the page is only available in german or italian right now, but google it for resellers
 
Aren't cottage cheese and low fat yoghurt too low calorie for weight gain? I get that fatty foods aren't going to help you gain weight if you can't digest them well enough, but don't you have to eat an awful lot of low fat cottage cheese to get a significant number of calories from it?
 
UnXmas said:
Aren't cottage cheese and low fat yoghurt too low calorie for weight gain? I get that fatty foods aren't going to help you gain weight if you can't digest them well enough, but don't you have to eat an awful lot of low fat cottage cheese to get a significant number of calories from it?
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It's also high in protein which can have satiating effects.

In general
Fats = medium satiation, highest caloric density
Carbs = Low satiation, medium-high caloric density
Protein = high satiation, medium caloric density.

There are exceptions, like high fiber carbs are high satiation, low calorie. High fat proteins are higher calorie, but that's because of fats not proteins.

That's not to say someone should live off fats and carbs to gain weight - this is why a balanced diet is ideal.
 
I guess yoghurt may not be as satiating as some protein foods as it's almost liquid (and cottage cheese can be semi-liquid) as liquids leave the stomach faster than solids.
 
Exactly! You have to balance it and check what has been substituted in favour of "low fat".
Again, its individual and for me it has to be low fat and certain types of fat, as well as high protein.
Gaining weight is not as easy as the so-called-normal people believe it is :D
 
thanks for the discussion. Very helpful and informative. Kikig, I am dairy intolerant. Regular milk, cheese, ice cream, cream cheese all cause pain. Inst. Coffee, I can eat a little butter on non gluten waffle, for some strange reason. But I ate some Lactose free Yoghurt yesterday and it caused pain. Strange. I drink LF milk with no problem. I will try coconut oil gradually. So I don't know whether my body can take no veggie oil better than veggie oil, but it is something to explore. It is so tiresome to always be focused on what I can or can't eat! After having Crohns for 5 years I keep thinking I should know everything about what I can eat...and should be gaining weight, but the reality is different. Again thanks for your help.
 
Gail Jothen said:
thanks for the discussion. Very helpful and informative. Kikig, I am dairy intolerant. Regular milk, cheese, ice cream, cream cheese all cause pain. Inst. Coffee, I can eat a little butter on non gluten waffle, for some strange reason. But I ate some Lactose free Yoghurt yesterday and it caused pain. Strange. I drink LF milk with no problem. I will try coconut oil gradually. So I don't know whether my body can take no veggie oil better than veggie oil, but it is something to explore. It is so tiresome to always be focused on what I can or can't eat! After having Crohns for 5 years I keep thinking I should know everything about what I can eat...and should be gaining weight, but the reality is different. Again thanks for your help.
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Knowing what you can eat and why is a complex process to fully understand.

I cannot have any kind of yogurt I've tried, but I can have almost limitless milk or cheese.

If you want a deeper understanding of the chemistry and bacterial factors behind crohn's dieting you can check out my log:
http://www.crohnsforum.com/showthread.php?t=72046&page=2

There's a lot of open discussion going on, I post a lot of articles, not everything is set in stone, but it gives you some ideas behind what is a good / bad idea for making a Crohn's diet, if you want more info / help feel free to PM me.
 
Have you tried avocados ? High in fat and nutritionally dense .
Nut butters as well either added to things or on your favorite type of bread ( gluten free if needed ) or add to smoothies ( pumpkin purée /nut butters /milk ( almond - cashew etc) plus ice and honey )
6 smaller meals - normal lunch plus cereal two hours later - so you don't have to process too much at once
Coconut or almond or cashew ice cream
 
I'm not sure if any of this has been touched on here yet, but I figured I'd contribute what I've found successful regarding weight management. My story/ diet experiences and experiments etc. can be found in a couple other places around the forum or my blog so I'm not going to bother here.

I did see information that I found very intriguing regarding the mental connection to eating and weight gain or loss while researching smoothies and juicing. Most think of smoothies, but especially juicing, as methods to encourage weight loss but I don't think this is accurate. They can be great sources for the micro-nutrients many of us may be deficient in.

What you choose to put into the juice or smoothie aside, the info I read essentially mentioned the effect liquid "meals" had on one's desire to eat. There are different types of hunger (Habit hunger · Mind hunger · Taste hunger · Stomach hunger · Body hunger) and illness, etc. effects one's hunger responses differently. For example, we may shut down/ block mind hunger due to pain (food aversion). While liquid meals can provide nutrition or calories a liquid meal does not satisfy the primal urge to eat (a potential issue for those trying to lose weight, as this can lead to over-consumption for that group). I think this could be turned around to be beneficial for those of us trying to gain. I gave up long ago trying to figure it all out and I don't have it all broken down, it's just a thought.

I wonder if it can be used to help rehabilitate and establish healthier eating habits and desire as I know I've developed some unhealthy, even obsessive approaches regarding eating let alone the concept of diet in the past.

Usually, I don't feel any desire to eat. But I tend to notice a desire and decrease in aversion after I've had 8-10 oz. of a smoothie regardless of how calorie dense I try to make it. I make sure I hit my consumption goals by setting alarm reminders for meals/ snacks and enlisting help on my especially crummy days when I may be experiencing less then my average "low" energy levels.

Dietary, I work to add fats to foods that are generally lacking in anything (1 tbsp. coconut oil in coffee or tea is my go to. The texture in tea did take some getting used to, but it's almost like creamer in coffee - bonus that it generally leads to me raiding the cupboards for a snack within 45 mins. without needing to be prompted by timers). Coconut oil has some interesting attributes regarding digestion and the digestive tract. I don't understand it so much, but it seems to help. At the very least, its extra calories I appear to tolerate well and despite being a fat I don't notice signs of fat-malformation in my bms.

Despite flaring terribly the past 2 years, showing new signs/ manifestations of disease, and struggling to hold/ prevent weight loss my mineral/ vitamin levels apart from B vitamins have consistently returned in the normal range 90% of the time.

I don't know why these things are, in the past my levels have been really low. I've been pretty disciplined with including a smoothie a day for the past year and utilizing coconut oil for 2 years. I feel these two aspects of my diet have been instilled as a long enough and consistent enough addition to attribute it to the weight management I've achieved and bouncing back from persistent infections (following the courses of appropriate treatment) keeping out of the hospital.

When not experiencing infections I have experienced steady weight gain of about 1 lb. every 2 weeks if I can maintain my macro-nutritional needs hitting 3000 calories/ day - I often fall short because this simply requires such a large amount of tolerated foods I find I struggle to keep up with the constant eating, preparation, and cooking (7-8 "meals" per day) unless it's my only focus day in and day out which isn't realistic or I think a smart pursuit.
 
UnXmas,

I like to google for ideas and came up with these two links for things to eat to gain weight.

http://www.webmd.com/diet/how-to-gain-weight


http://www.activebeat.com/diet-nutrition/11-foods-that-will-make-you-gain-weight/11/

You'll have to cut and paste into browser. I don't know why they didn't copy as links to click on.

I hope you can find something that will appeal to your appetite. I think the nut butters might be good if you can't eat insoluble fiber during a flare.

Cream cheese with honey makes a tasty dip for apple slices is you could eat them without the peels.

Good luck. Even if you're not hungry, try eating small amounts of things you like somewhat. Think of it as taking your medicine and see it as making you stronger and healthier. Good luck.
 
Thank you, jayann. The trouble is I need more than a few mouthfuls, when I was in hospital and they were monitoring all my food I could eat 3000 calories a day and still lose some of the time.

The links work fine for me, I'm going to have a look now.
 
If anyone is looking at protein shakes, I just found "True Athlete" Natural, it comes in chocolate, vanilla and unflavored and I really like the ingredients list.

Unflavored:
Whey protein concentrate, soy lecithin, Bacillus coagulans, lactase digestive enzyme, papain, bromelain

100 calories 20g protein per serving, 24 servings, costs about $24 so $1/serving.

Chocolate:
Whey protein concentrate, cocoa powder(processed with alkali), natural flavors, inulin, xanthan gum, soy lecithin, salt, stevia extract, LactoSpore® L.sporogenes, lactase digestive enzyme, papain, bromelain.

A lot of companies are now offering 'natural' lines of protein including Isopure, Optimum Nutrition, and Pursuit Rx to name a few. Most of these appear to have crohn's-safe ingredients.

I would advise against Muscle Milk brand as it has a bad reputation for heavy metals.
 
Optimum Nutrition is my brand of choice actually, and I supplement with separate probiotics.

The vanilla flavour is pretty good, not too sweet. The banana flavour is alright too, although at times I find it a bit too "mediciney" flavour (I remember it was a trend for all liquid medicines to be banana flavoured at some point :) )
 
Regular ON except double rich chocolate and vanilla have sucralose which makes me sick and I'm not a big fan of the health implications of.

Most not naturally flavored proteins contain sucralose actually. A big problem for me.

The featured review also concluded that sucralose destroys gut bacteria. (In fact, animal research8 published in 2008 found it could kill as much as 50 percent of your microbiome.)

This is very important, as anytime you destroy healthy intestinal bacteria, you open yourself up to unfriendly micro-organisms that can cause health problems. Your immune system, which is imperative for general health, is dependent on healthy gut flora, so the idea that this artificial sweetener may destroy up to half of all your healthy gut bacteria is disconcerting to say the least.

Worse yet, sucralose appears to target beneficial microorganisms to a greater extent than pathogenic and other more detrimental bacteria. And remarkably, according to one study, these adverse effects on gut microbiota remained even after a three-month long recovery period...

Early studies, upon which its approval was based, claimed that sucralose would simply pass unchanged through the human gastrointestinal tract, but more recent investigations show that it is indeed metabolized in your gut. And, as reported in the featured review, "the identity and safety profile of these putative sucralose metabolites are not known at this time."
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http://articles.mercola.com/sites/articles/archive/2013/12/18/sucralose-side-effects.aspx
 
Fair enough @instantcoffee and I am very fortunate not to have issues with sucralose.

I do prefer vanilla at any rate :D

I use ON casein in the evening, vanilla flavour too so I don't wake up at 3am starving and looking for poached eggs and toast :D
 
The problem with nut butters is they're high in omega 6 fats (most of us are deficienct in omega 3s to balance them out), and they're also high in copper (depletes us of zinc), and the phytic acid debate.
 
drewpalermo said:
The problem with nut butters is they're high in omega 6 fats (most of us are deficienct in omega 3s to balance them out), and they're also high in copper (depletes us of zinc), and the phytic acid debate.
Click to expand...

When you're trying to gain weight, especially if high-fibre foods give you trouble, some of the "bad" fats in nut butter are probably worth it for the calories. And nut butters are much healthier than many high calorie foods.
 
I lost some weight, a kilo since my doctor last weighed me in May. I've been gaining since I left hospital last September/October so she's letting me try and gain it back on my own first.
 
And I can't take anything with milk or milk products such as whey. And yes, sucralose is a no no for me also. So I think I am gaining a little weight, maybe 2 pounds in 2 months which is great. My dr thinks I will only gain 5 or 10 pounds overall; I will never weigh what I really like to.
 
Hello!

I have a question... I've been taking a Weight Gain Suplement for the last three months... I didn't read the Warnings in the package until now, and I found out it says
"Do not take this product if you have or are at risk for any medical condition or disease incluiding but not limited to diabetes [...] or are suffering from any inflammatory disease"
Do you guys know what could be the possible side effects? It has really helped me to gain some weight, I've been training for the last year, but three month after I started it got really hard for me to gain weight... I tried with a protein supplement but it didn't work, then I tried this weight gainer (Gain Fast, made by Universal Nutrition) and started gaining weight inmediatly (1kg per month aprox)

What do you think? Should I stop taking it?
 
tincho_lavie said:
Hello!

I have a question... I've been taking a Weight Gain Suplement for the last three months... I didn't read the Warnings in the package until now, and I found out it says
"Do not take this product if you have or are at risk for any medical condition or disease incluiding but not limited to diabetes [...] or are suffering from any inflammatory disease"
Do you guys know what could be the possible side effects? It has really helped me to gain some weight, I've been training for the last year, but three month after I started it got really hard for me to gain weight... I tried with a protein supplement but it didn't work, then I tried this weight gainer (Gain Fast, made by Universal Nutrition) and started gaining weight inmediatly (1kg per month aprox)

What do you think? Should I stop taking it?
Click to expand...

Looking at the ingredients list for Gain Fast gainer the only reason I can think it'd have such a disclaimer on it is due to the herbal additives which aren't generally FDA regulated/ studied and that gainers usually are high calorie/ high sugar which can be detrimental for some as it'd spike levels. Just a guess, but the reason for warning diabetes/ inflammatory diseased individuals could be due to med. interactions where spiked blood sugar could be a huge concern such as while taking high doses of prednisone or struggling with non-medicine induced diabetes. The warnings that many products come labeled with highly depends on the state in which it's sold. For example, the same product probably carries a birth defect warning label in Cali or New York due to stricter guidelines. I'd run it past your doc. see what their thoughts are (if any) just to be on the safe side.
 
Remicade

segue
to Remicade please: I am on my 4th infusion which only worked 3 weeks and was suppose to last 8 weeks. I do well a couple days then a couple days of severe pain. I still take Budesonide. I have not gained ANY weight, maybe lost (I don't have a scale). Anyone else find Remicade not work? What options did the dr have or do? I live in fear every time I eat. Yes, I eat mostly very mild food: I base my diet on FODMAP but even limit much that is on it.
 
Last edited:
Gail Jothen said:
segue
to Remicade please: I am on my 4th infusion which only worked 3 weeks and was suppose to last 8 weeks. I do well a couple days then a couple days of severe pain. I still take Budesonide. I have not gained ANY weight, maybe lost (I don't have a scale). Anyone else find Remicade not work? What options did the dr have or do? I live in fear every time I eat. Yes, I eat mostly very mild food: I base my diet on FODMAP but even limit much that is on it.
Click to expand...

I'm not familiar with Budenoside, but if it's a corticosteroid like Prednisone Corticosteroid's can effect the body's total body protein metabolism. Muscle loss/ atrophy can occur regardless of exercise, balanced diet, etc. Regardless of how my disease may improved on heavy hitters, if there's a moderate to high dose of corticosteroid's I won't gain weight. But that's not really what you asked..

It's always been my understanding the Remi is most likely to benefit a patient and for a patient to show longer response if it's paired with a maintenance med. to slow development of antibodies and losing response. Ask your GI about the possibilities of that. My GI has used azathoriprine, Methotrexate, 6-MP at various times in conjunction with biologics and steroids. Remi can also be infused as often as every 4 weeks and dose can be upped from the standard infusion dose if showing limited response and administering is tolerated. Similar to remicade but different in administration method and compounds are the biologics Humira and Cimzia.

Outside of biologics ask your doc. about Entyvio if it hasn't already been discussed. It works SLOW. Like 9 months+ to really kick in and seems the longer people are on it, if they show response, the better it gets including weight gain. There's also some cool stuff happening in the stem cell realm regarding Crohn's, I believe it's in trial's currently in the US, but there may still be some trials open and getting going.

There's a support thread for Remicade patients here on the forum. Check it out, might find others who have been in a similar position and found a solution.
 
duh panda, thank you so much for all this information which is all new to me. My dr has not mentioned any of this. I will print this out and show it to him. I am pretty desperate.
 
Sometimes Remi takes longer to work
Higher dose and shorter window between doses
Ds took 7.5 mg/kg every 6 weeks to get there
8 weeks at 5 mg/kg never happened since he got bad so fast .
When he started to get bad again while in humira /mtx
Gi added partial en crohns exclusive diet .
This has helped tremendously
Easier than een but as effective as Pred in refractory or hard to treat crohns
He also started to gain weight again.
Stalled weight gain is not a good thing for an 11.

Paper on the diet
http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/


Thread on the diet


http://www.crohnsforum.com/showthread.php?t=71686

Goes through the do's and don't s

Good luck
 
my little penguin, thanks for the info. I can do nothing until I see my dr which is in 10 days and I am really suffering today, i can hardly stand it the pain is so bad. Ice packs no help. I am hardly eating anything. Diet sounds interesting....I am 70 years old, wonder if it helps older people.
 
Ask about a tens unit
Attaches and can help abdominal pain
Electric heating pad is my kids best friend
Warm buddies makes microwaveable blankets etc that help some
Formula only ( ensure boost peptamen etc..) without food can also help
Can you call your Gi Tuesday ?
Maybe they can get you something earlier
 
thanks, my little penguin. had not thought of a tens unit for my pain. I can't take any supplement with dairy which most have. Yes, I will phone my GI on Tuesday but I am even thinking of calling him tomorrow and tell him I am going to the emergency as I cannot endure this pain behind my belly button.
 
They could direct admit from ER to get you some relief
The mini hit packs they use for skiing also work well
It wasn't until Ds got on the diet that we saw relief though
This was after 6 months - 4 ER trips 2 inpatient stays a scope and mre plus multiple stool tests .

ER is always an option
You could call on call Gi tonight and see if they have suggestions
 
my GI is a solo practice and I really hate to call him on Sat. nite so will wait until tomorrow and see how I feel and if I feel as I do today I will tell him I'm going to the ER. I can't wait until my app. in 10 days. My GI did talk to me last week and said he needed to talk to me in person about the side effects of any med he would give me..and told me to wait until my app on Sept. 15...but now I feel I just can't wait that long. Thanks for your comforting response. I am not familiar with een diet, just use FODMAP, but obviously it is not enough.
 
EEN is formula only
No food
So you drink all ensure or boost etc
It's as effective as Pred in inducing remission in kids
Not sure on adults
The hard part no food
Since once you introduce food again the symypoms come back
Ds did een for 9 at dx ( age 7)
Just did two weeks of een this time around before adding the crohns exclusive diet

Good luck
 
thanks my little penguin. I did go to the ER yesterday and they gave me demerol which stopped my pain, and 10 pills to take home until I see my dr on Friday for Remicade, I guess, I'm not sure what my dr will do. I am eating only liquid food, regular stuff that I liquify in my blender. I feel strange from the demerol but my tummy was fine today. I"l let you know what happens Friday! Thanks so much.
 
my little penguin, I looked at the website but could not figure out which one talks about een. Can you give me the title, please? Thank you!
 
EEN & NUTRITION RELATED ARTICLES:


*Nutrition in Paediatric IBD - Paper
http://www.medicine.virginia.edu/cli...ril 2012.pdf

*Use of Enteral Nutrition for the Control of Intestinal Inflammation in Pediatric Crohn Disease
http://www.naspghan.org/user-assets/....29[1].pdf

*Enteral Nutrition in Paediatric Crohn's Disease - Slide Show
http://www.ibdcme.tv/library/ppts/EnteralNutrition.pdf

*Nutrition in Pediatric Inflammatory Bowel Disease
http://mobileservices.texterity.com/...icle_id=166918

*Effect Of EEN On Gut Microflora Function In Children With Crohn's Disease
http://www.ncbi.nlm.nih.gov/pubmed/23016828

*Treatment Of Active Crohn's Disease In Children Using Partial Enteral Nutrition With Liquid Formula: A Randomised Controlled Trial
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856067/

*Effectiveness Of Concomitant Enteral Nutrition Therapy And Infliximab For Maintenance Treatment Of Crohn's Disease In Adults.
http://www.crohnsforum.com/showthread.php?t=55580

*Physician Attitudes And Practices Of Enteral Nutrition As Primary Treatment Of Paediatric Crohn Disease In North America
http://journals.lww.com/jpgn/Fulltex...Enteral.9.aspx

*Enteral Nutrition: The Neglected Primary Therapy of Active Crohn's Disease
http://journals.lww.com/jpgn/Fulltex...Therapy.3.aspx

*Enteral Nutrition and Corticosteroids in the Treatment of Acute Crohn's Disease in Children
http://journals.lww.com/jpgn/Fulltex..._in_the.5.aspx

*Definitions Of Different Types Of Enteral Formulas
http://www.thriverx.net/PDFs/Adult%2...20Formulas.pdf

*A Retrospective Study Showing Maintenance Treatment Options For Paediatric CD In The First Year Following Diagnosis After Induction Of remission With EEN: Supplemental Enteral Nutrition Is Better Than Nothing!
http://www.biomedcentral.com/1471-230X/14/50/abstract

*Enteral Nutrition in Crohn’s Disease: An Underused Therapy
http://www.hindawi.com/journals/grp/2013/482108/

*Enteral Nutrition as First-line Therapy in Treating Children and Adolescents with Crohn’s Disease
http://www.naspghan.org/files/docume...ewsltr_WEB.pdf
 
InstantCoffee said:
If anyone is looking at protein shakes, I just found "True Athlete" Natural, it comes in chocolate, vanilla and unflavored and I really like the ingredients list.

Unflavored:
Whey protein concentrate, soy lecithin, Bacillus coagulans, lactase digestive enzyme, papain, bromelain

100 calories 20g protein per serving, 24 servings, costs about $24 so $1/serving.

Chocolate:
Whey protein concentrate, cocoa powder(processed with alkali), natural flavors, inulin, xanthan gum, soy lecithin, salt, stevia extract, LactoSpore® L.sporogenes, lactase digestive enzyme, papain, bromelain.

A lot of companies are now offering 'natural' lines of protein including Isopure, Optimum Nutrition, and Pursuit Rx to name a few. Most of these appear to have crohn's-safe ingredients.

I would advise against Muscle Milk brand as it has a bad reputation for heavy metals.
Click to expand...

I am also trying to find a "natural" protein shake. I found one called Orgain Organic Protein Powder. Have you tried this one? In another group there was an issue with inulin causing a lot of gas. Thanks!
 
You can't tolerate lactose or are you milk allergic?
Boost and ensure are extremely low lactose
Peptamen is lactose intolerant friendly and insurance tends to cover through durable medical supplies but not good for milk allergy - semi elemental ( more broken down easier to digest better quality fatty chains etc..)
Neocate /elecare /Eo 28 splash are elemental ( amino acid based - no allergens very little intestine needed to absorb it)

OTC orgain vegan has no milk or soy in it
But it is not complete nutrition
Just fruit/veggies and protein.
 
Gail Jothen said:
JeffBee: is there any protein shake that does not have milk in it? I can't tolerate dairy.
Thanks,
Click to expand...

Gail, I bought this Orgain Organic Protein Powder today and there is no dairy. Ingredients look very good, but the stevia has such a sweet after taste that I may return it. They said I could get full credit if I used up to half the product. Tomorrow I will be cutting it with hemp powder to see if that helps on the sweetness. But look it up, it's ingredients are very good and it has a higher protein content than hemp powder.
 
wow, Helen, you must be doing well to not have to be on Remicade or Humira. I am on Entocrot and Remicade and still not doing well. I, too, am about 30 pounds underweight and seem to keep losing, not gaining. I make Smoothies: 1 scoop Jarrow's Brown Rice Protein, 8 0z water, 1/2 banana, and you can add coconut oil or almond butter. It tastes pretty good. I am on the Low FODMAP diet.
 
I wish I was doing better! Remicade stopped working for me after I had my 2nd child and I had to come off Humira due to a horrific allergic reaction that put me in the hospital for 2 weeks. I was on Entocort for maintenance, but I have spent half my life on steroids and I just wanted to get away from that course of treatment.
I'm frustrated with doctors, nutritionists and feeling like a guinea pig. Have you had positive results with the FODMAP diet?
 
Yes, FODMAP has given me the best parameters on what to eat and what not to eat. I have, of course, customized it for myself, as intended by the creators of it. I don't eat nuts and some other things. I think Crohns is a very complicated disease and everyone who has it requires a different treatment and diet. It surely is not a scientific model as viral and bacteria diseases are. We are guinea pigs. It is a very difficult idea to accept about oneself. I feel quite cheated by my condition since my life is controlled by it. I am constantly looking for God in my suffering.
 
My faith in God and knowing that He has a bigger plan for me is what gets me through the day sometimes. I am working on tailoring a diet that works for me, it's hard to put myself first sometimes when I have little ones depending on me...I'm worthless when I'm sick and tired though. It's a tough balance, not that I need to tell you that!
 
This is a great support group. I couldn't find the subscribe button so am replying to join in the discussion. Again, I can't express how meaningful this forum has been in providing me support. I was just in the hospital for 17 days and my weight has dropped to its lowest at 95 lbs. While in the hospital, I was started on 90mg IV prednisone and was discharged on a dose of 60 mg. As a result, my appetite is raging and I am finally starting to put on some weight. It is nice to have an appetite again!
Maggie
 
It's been a long struggle but after tossing remicade into the equation with prednisone and mtx seeing consistent gains (about 1lb a month) and holding my lowest acceptable weight for first time in over 2 years. So nice to not be feeling like a complete stick figure right now or have everything so sore that gentle hugs were unbearable. Hope this weeks finding you all well and seeing progression on the diet/ weight front!
 
Hi, I was wondering if anyone knew easy ways to gain weight, I've been struggling ever since I was diagnosed with crohns, I'm a 16 year old male and way under 86 pounds, and it's slowly been dropping, I'm lactose intolerant so I can't have any dairy, or else I get major cramps and diarrhea. I'm a pretty picky eater all I have all day is, really just crackers and cereal (with lactose free milk) plus with low iron it's hard to go anywhere, I've been out of school for over a year and I need to get back to my normal self so if anyone knows any diets to make me gain weight, it would be very helpful thanks!

-Andrew
 
ColossalBD said:
Hi, I was wondering if anyone knew easy ways to gain weight, I've been struggling ever since I was diagnosed with crohns, I'm a 16 year old male and way under 86 pounds, and it's slowly been dropping, I'm lactose intolerant so I can't have any dairy, or else I get major cramps and diarrhea. I'm a pretty picky eater all I have all day is, really just crackers and cereal (with lactose free milk) plus with low iron it's hard to go anywhere, I've been out of school for over a year and I need to get back to my normal self so if anyone knows any diets to make me gain weight, it would be very helpful thanks!

-Andrew
Click to expand...

Reduce intake of sugar / sweets and buy a fiber supplement and your diarrhea will most likely clear up.

I use this
http://www.renewlife.com/fiber-supp...zFmxyY3p6-AQjZsGjQDgNvVv3DFoYx4bEIxoCFnPw_wcB

You can also try psyllium.

Add safflower and coconut oil into your diet.

Crohn's dieting is highly subjective but I believe this should help based on the most common cause of crohn's diarrhea.
 
Ds is 11
Was dx at age 7
Peptamen jr is ok for lactose intolerance
They have an adult version peptamen
Your GI can write a script
It semi elemental so only takes a few inches of healthy intestine to digest it .


He drinks them in addition to food
Helped him gain close to 47 lbs in 4 years.
He was 50 lbs at dx after not gaining for 2 years
He is now 97 lbs .

Good luck
 
I am lactose intolerant and peptamen caused me pain ( I am 70 years old). I make my own smoothies from spinach, rice bran powder, water, a little oil, and 1/2 banana. But I have not stablized with this disease and most of the time almost ALL food bothers me. Obviously I am unable to put weight on and am really, really skinny. And no energy to buy new clothes....but I still have more clothes than most of the world, I'm sure.
 
JeffBee said:
Gail, I bought this Orgain Organic Protein Powder today and there is no dairy. Ingredients look very good, but the stevia has such a sweet after taste that I may return it. They said I could get full credit if I used up to half the product. Tomorrow I will be cutting it with hemp powder to see if that helps on the sweetness. But look it up, it's ingredients are very good and it has a higher protein content than hemp powder.
Click to expand...

Inulin is a prebiotic fiber, it's likely to cause gas because of this. It may go away in time or it may not, hard to say, but I'd suggest experimenting with something cheaper that contains inulin first. Some Stevia does.

Oddly I bought true athlete unflavored and it was fine, but when I bought natural chocolate flavored I had issues with it.

The ON chocolate and vanilla seem okay. I haven't tried their natural flavors yet.
 
InstantCoffee: my organic store carries Orgain organic nutritional shake which has milk, but also carries Orgain veggie shake which is diary free, but they were out of this when I went there yesterday. Just have to wait. meanwhile, I drink my smoothies made with rice bran powder, but I always appreciate ready made! Yes, inulin is off the FODMAP diet....bananas have it so I can eat only 1/2 a banana. Thanks for the info. I haven't gained weight but haven't lost any either. I start Entyvio in 20 days....
 
Ok guys, since I last posted in this thread (July 2015), I've been able to gain 20 pounds or so. Now I'm at a normal BMI, and I really have to give credit to the ox bile and pancreatin supplements I include with almost every meal to help break down the fat, carbs, and protein.

They're digestive supplements (animal derived), and I didn't have to eat any processed crap to get there. I cooked the majority of my meals, with a little bit of almond butter every other day usually, some animal protein, and LOTS of cooked vegetables. I also don't shy away from a tablespoon (give or take) of duck fat/ grass fed butter etc.
 
Thanks for the update Drew. I need to add another 15 or 20 lbs as well. My small intestine has been shortened quite a bit after 2 surgeries and the older I get the less I absorb through my small intestine. Do you have your full length of intestine? Are there any particular brands of enzymes that you have found that work better than others?
Thanks, Jeff
 
JeffBee said:
Thanks for the update Drew. I need to add another 15 or 20 lbs as well. My small intestine has been shortened quite a bit after 2 surgeries and the older I get the less I absorb through my small intestine. Do you have your full length of intestine? Are there any particular brands of enzymes that you have found that work better than others?
Thanks, Jeff
Click to expand...

Hi Jeff, hope you're doing well. Luckily I have not had any part of my intestine removed. The two brands I use are Source Naturals and Nutricology. I took a picture of them on my blog here: ...

I almost always take about half of a pancreatin capsule and half of an ox bile capsule with each meal, especially if I'm eating animal protein. I don't remember the last time I had a painful stomach ache.

Drew
 
Last edited by a moderator:
Thanks for this thread I'm going to have a good Reed though, I'm so sick of being underweight, thanks to my latest flair I've dropped a few stones, legs have gone back to being really skinny.
Good luck to everyone 😁
 
Hello Everyone, I noticed there haven't been any posts for awhile, I'm hoping I can get some feedback and advice. I have had Crohn's since 1989 I have been on EVERY medicine there is. After my recent flare I have started Entyvio I go for my 3rd infusion on 3/9 I dropped to 85 lbs in Dec. and was hospitalized for 5 days. An NG Enteral feeding tube was inserted and I was sent home with it for 6 weeks (removed 2/9) I did great and gained 20 lbs. I have been maintaining at 102 lbs. Well this morning I get on the scale and dropped to 99 lbs.:( I eat the best I can and have several boosts a day but as you all know who wants to eat when it causes pain and diarrhea.
My question to anyone is for advice for nutritional help with gaining weight, shakes, smoothies whatever has worked for anyone else. I CAN'T have CORN (in any form) non gmo only please. I can't digest fruits & veggies that's why I say smoothies & shakes. Thanks in advance Donna
 
Has anyone tried a gluten free high protein diet, diet dude placed me on it when I was recently in the hospital for 14 days. Been gaining weight like crazy..
 
I lost weight quickly, 37 pounds (more than 16 kg) in 2 months. I was sent to a psychiatric hospital to learn to think positive! I also had lots of pain. I tried various helps (naturopath, acupuncture etc.) but after 4 years of losing more weight and being depressed, I had a pill cam and the (new) doctor found 9 ulcers in my upper intestine which can be found only by a pill cam. Other tests do not see or go to that area. I am still on anti anxiety medicine from the psychiatric hospital and would love to get off them as I think they dry out my body too much, including my stomach, which is not healthy for digestion.
I guess this is why doctors "practice" medicine.
 

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