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[OverrideYourGenetics]

My surgery is in two weeks and I want to get on a diet to maximize bone and tissue healing.

Anything special, vs. the general diets recommended for fractures? The most interesting article I found on that is

https://www.betterbones.com/fractures-and-healing/speed-healing/

Some things that stood out:

While a normally active adult may require 2,500 calories a day, a bedridden, injured patient with multiple fractures may need 6,000 calories per day! If this demand is not met, the healing process is compromised.

(The above is a bit surprising!)

Protein malnutrition or under-nutrition leads to a “rubbery” callus, compared to the rigid calluses of those with adequate or high protein intake. Numerous studies document the acceleration of fracture healing with even a modest 10- to 20-gram increase in protein intake.

Specific amino acids of special importance include lysine, arginine, proline, glycine, cystine, and glutamine. Lysine, for example, is known to enhance calcium absorption, increase the amount of calcium absorbed into the bone matrix, and aid in the regeneration of tissue.


Other resources are https://draxe.com/heal-broken-bones/ and https://www.webmd.com/osteoporosis/osteo-fracture-diet. They recommend the usual suspects: protein, calcium, Vitamin D, zinc, Vitamin C, iron, potassium, magnesium, omega-3 fats. Of course, avoid alcohol, coffee, salt and sugar.

An interesting bit from Dr. Axe,

Vibration therapy can accelerate healing of broken bones.  Stand on a vibrational platform for 5-20 minutes 2x daily to improve osteoclast formation.

Other tips?

[myloginacct]

You should make an appointment with a nutritionist. The links there provide a lot of information, so you two could probably work the ideal protein and vitamin intake.

And in hindsight, it looks like Jexus' doctor was right about the calories, after all, if that betterbones website is to be trusted.

[OverrideYourGenetics]

You should make an appointment with a nutritionist.

Perhaps, but outside of individual allergies, I think the topic "Best diet for CLL" is common enough in this forum that we should have good answers for it sourced from nutritionists and personal experience. FWIW I've asked Paley & team - the advice was along the lines of "Just eat a healthy diet with http://bonehealthnow.com/ supplementation and keep in mind that most patients lose weight because of extra training and post-op discomfort."

[Purushrottam]

Correct. You need about 2000 calories extra per bone break (So for LL, it would be 4000 extra calories.. 8000 for quadrilateral). You need to have lots of Protein, Calcium, and Vitamin D.

[OverrideYourGenetics]

Correct. You need about 2000 calories extra per bone break (So for LL, it would be 4000 extra calories.. 8000 for quadrilateral). You need to have lots of Protein, Calcium, and Vitamin D.

Holy moly, 8000 calories. Makes sense though. Puru, curious what the source of this information is. Thanks!

[Purushrottam]

Holy moly, 8000 calories. Makes sense though. Puru, curious what the source of this information is. Thanks!

I didn't ask Paley for specific numbers (he just said lots of calories). However there was another Quadrilateral patient there. He said that Paley/Robbins said the number was about 2k calories per break, so 8k calories for him.

[myloginacct]

So how many pills of vitamin D3 would a CLL patient need per day? About 3 for bilateral? (Logic being one for normal intake, then one pill for each bone break.)

[Purushrottam]

It depends on the patient. I was deficient in Vitamin D (which impacts consolidation). I was taking 15000 IU per day (3 pills), as per prescription.

That being said, my consolidation was good .

[OverrideYourGenetics]

I didn't ask Paley for specific numbers (he just said lots of calories). However there was another Quadrilateral patient there. He said that Paley/Robbins said the number was about 2k calories per break, so 8k calories for him.

Interesting. So two Paley/Robbins patients (Puru and myself; I've also asked specifically) weren't told any specifics about calories, but another patient was told 2000 calories per bone break.

Goes to show that you need to fend for yourself even with the best doctors.

Remember - you are the one single person on Earth most invested in your CLL success. Don't just "let the doctors do their job". While you may be "in safe hands", if you're serious about what you're doing, take matters into your own hands.

[Purushrottam]

I think you are misinterpreting. I didn't ask for specific calories. Now that I think about it, they may have told me 2k calories per break as well. I just don't remember too well as it was in September.

[KiloKAHN]

I lost over 40 lbs eating a couple times of day in India during distraction, so the 2000 calories per bone break seems about right.

[OverrideYourGenetics]

I think you are misinterpreting. I didn't ask for specific calories.

I emailed them about diet and have the replies in writing. There was nothing specific about calories in the replies.
Oh well, now I know, thanks to this forum and my research online (which is my point - do your own research even when doctors give you an answer).

Now that I think about it, they may have told me 2k calories per break as well. I just don't remember too well as it was in September.

How well did you manage to eat that much?

[LAGrowin]

which is my point - do your own research even when doctors give you an answer

I agree 100%.  My doctor has been great,  but I have also researched and asked beyond what he might normally discuss or suggest in a follow appointment.

I've lost about 25 lbs thus far.  This level of caloric intake makes perfect sense.

Thank you Puru and fivefive for the info and input.

[Android]

This will be a challenge for me; my average daily intake is under 2000 calories, and that's paired with gym four times per week.

Here's a nice guide by Hospital for Special Surgery (HSS), where Dr. Rozbruch is located: HTML and PDF version.

[myloginacct]

This will be a challenge for me; my average daily intake is under 2000 calories, and that's paired with gym four times per week.

Here's a nice guide by Hospital for Special Surgery (HSS), where Dr. Rozbruch is located: HTML and PDF version.

That's a great link.

[short2tall]

I agree that eating a lot of extra calories is going to be important. I worked out religiously 5x per week before LL. I have always been worried about muscle atrophy during the process. All you can do is eat as much quality food as possible during your distraction/consolidation phases. I am trying to eat my normal diet as well as drinking a lot of "weight gainer" shakes, and still drink protein shakes. Your doctor will prescribe vitamin D and calcium supplements. It also helps if your caretaker is a good cook.

[fivetenneeded2016]

is doing a keto diet pre-ll(to lose a bit of weight) a good option in case you are doing externals, so you can bear weight more effectively?

[Bron]

I’m not a big believer of counting just the number of calories when it comes to either losing/gaining weight or even with bone healing, you should always look at the macro and micro nutrients of the food you’re taking, you should take note that Carbohydrates and Proteins has 4 calories per gram while Lipids or Fats has 9 calories per gram, You should also monitor the quality of carbs,proteins and fats that you’re taking because not all of them are made equal, sure you can attain that 8,000 calories but if they are mostly compose of Saturated and Trans Fat together with bad carbs then it won’t help you, you should also watch for bad stuff such as sodium, glucose etc. that’s bad for bone healing because they inhibit calcium absorption, reduce bone mineral density etc., honestly I suggest don’t count the calories that you’re taking instead try to reach the macro and micro nutrients that you need each day together with your supplements I think you’ll be fine, a lot of good doctors and nutritionist will agree with me on this, but then again that’s just me and you can always do your own research, Goodluck and safe LL journey!

[myloginacct]

Knowing this about the calories, though, I wonder how many LLs went worse than expected due to sub-optimal calorie intake? Many LLers depended totally on the food available to them at where they were staying.

[OverrideYourGenetics]

Knowing this about the calories, though, I wonder how many LLs went worse than expected due to sub-optimal calorie intake? Many LLers depended totally on the food available to them at where they were staying.

With my gf staying with me during the recovery, I had the option of eating 6,000 or even 8,000 calories a day, but that turned out to be just impossible. Even after getting off painkillers (except for one per day before PT), my appetite has plummeted. I'm lucky if I score 2,000 calories a day, and that includes a protein shake and Gatorade powder added to water for extra carbs. My body is just reluctant to eat, and some food smells have become obnoxious. Anything remotely fatty (like sausages, which I'd routinely eat 4 of for lunch) is borderline disgusting. I can still eat fruit, ice cream and candy as I used to.

Anyway, even if you manage to eat 6,000 calories per day, I highly doubt much of that will go into maintaining muscle mass. Without consistent usage, muscle atrophies very fast. It's been 3 weeks since my femurs surgery and I've lost so much of my glutes that I no longer have the "nice butt" that my gf liked, and sitting has become painful because my sit bones dig almost straight into the skin.

[myloginacct]

With my gf staying with me during the recovery, I had the option of eating 6,000 or even 8,000 calories a day, but that turned out to be just impossible. Even after getting off painkillers (except for one per day before PT), my appetite has plummeted. I'm lucky if I score 2,000 calories a day, and that includes a protein shake and Gatorade powder added to water for extra carbs. My body is just reluctant to eat, and some food smells have become obnoxious. Anything remotely fatty (like sausages, which I'd routinely eat 4 of for lunch) is borderline disgusting. I can still eat fruit, ice cream and candy as I used to.

Anyway, even if you manage to eat 6,000 calories per day, I highly doubt much of that will go into maintaining muscle mass. Without consistent usage, muscle atrophies very fast. It's been 3 weeks since my femurs surgery and I've lost so much of my glutes that I no longer have the "nice butt" that my gf liked, and sitting has become painful because my sit bones dig almost straight into the skin.

Sorry to hear all that.

Do you think things would be different if you weren't doing quadrilaterals?

[Jim_dabarber]

Personally i lost about 30 pounds during my whole lengthening process which took about 60 days. 20 of those days i was in the hospital and i can tell you guys thats when i lost the most weight mainly because i wasnt getting enough food high in calories while at the hospital. Calorie intake is very important especially when your body is trying to heal broken bones. OYG is right, youll still have muscle atrophy due to not using your muscles as much. I wish i wouldve known this before starting my journey. Im sure that if i wouldve prepared myself a little better like bring protein shakes and had somebody cooking for me while at the hospital my bone growth wouldve been better. While at home i was getting about 2500 calories per day and i was still losing weight slowly but as much as i tried to eat more i was just in so much pain that i literally had no appetite and i was forcing myself to eat most of the time. At the hospital i was getting about 1500 calories if that so you can see why i had the most weightloss there. 

[OverrideYourGenetics]

Sorry to hear all that.

Do you think things would be different if you weren't doing quadrilaterals?

Not really. I still would'be been on the same medication, and I still would've been unable to walk, so biochemically and mentally probably in the same situation.

I can't tell what had caused the drop in appetite, but good news - a few days ago, 4-5 weeks after the femurs surgery, my normal appetite came back. No obvious connection with anything. I stopped lengthening tibias afterwards, on Fri May 11. No changes in medication prior to the appetite coming back, though starting May 11, I dropped Neurontin from 900+600+900mg / day to 3x600mg/day. It's as if the return of the appetite anticipated me stopping tibias. So no idea what caused it.

Unfortunately my gf is back in California, so my dietary options are more limited :-/