Cystic Fibrosis and Nutrition Help

[ernie9]

Hi all,

First time poster

Well ill get straight into my dilemma and about a bit myself.....

ok well im a 23 year old male weighing 64kg at 166cm and I suffer from Cystic Fibrosis. Not going to bad, my FEV is sits anywhere between 63 – 70% and has been like that for about 4 years.

I had a little bit of a bad period when I dropped down to 55% about 2 weeks ago but managed to get it back up. J

So I have come to my senses and realised that I need to get fit…

This is what I have recently started……

Running (Cardio is great for CF and also I am really wanting to run the Adelaide City Bay Fun Run)

And

Mark Rippetoes “Starting Strength”


So now my question to all you forum members, as some of you know CF affects the appetite.

So what I would like is for someone to help me create a diet that would suffice my calorie intake and help my keep (gain) my weight.

(im allergic to all Nuts and Tuna)
and if you need any other info please just ask

Thanks

Kyle

 

[dave]

Go check out tablesalts log, he has CF and an FEV of 23.

 

[ernie9]

Yeah i checkde that out the yesterday...i must say im fair impressed with how he is goin and still being able to do so much with a lung function so low.

I wish my other friends who suffer from CF would do the same. I would have to say that i am one of the healthy ones now. Most are in their low 20-30's% and being assessed for a lung transplant.

 

[tablesalt]

I just spent 45mins typing out a big reply, and my browser crashed as I was finishing it.
I'll keep this one short since I can't eat and type.

I can relate to the appetite issues, I can go all day without eating and won't feel hungry at all. So it's pretty much force feeding everyday.

What foods do you like?
You want foods that you can eat day in day out. You want something you can be consistent with, don't try and stick to some fancy meal plan from the start.

The best thing I found was the blender, and blending up oats, protein and milk. Since I can't stand pretty much any foods, I base every day off 3 shakes and just add in food around them. Pretty much the opposite of what most people do I found.
Don't suddenly increase your calories instantly either, slowly add every week until your stomach can get used to it.


I got up to 75kg a few years ago, all I ate was chicken + rice in-between the 3 shakes. Each day was 6000 calories once I got to 70kg.
Maxolon tablets are great for preventing throwing up btw.

I just wish I was consistent and disciplined in the gym like I was with my eating.
I found this video last night, I can relate to every bit about the eating, even the "cheat day", instead of pigging out, I used saturdays as a day where I wouldn't force myself to eat, Id just force down the shakes:
YouTube - EliteFTS.com - Matt Rhodes Interview Part 2

I'll might redo the post later today when I get back home. I'm running out of time here and rambling on.

 

[ernie9]

haha thanks tablesalt.

yeah would be great to hear some more information from you.

I will pretty much eat anything that gets put in front of me its just forcing it down thats the problem. I really only eat small meals. I have been trying to drink alot of milk as that dont effect my mucus at all. but even thats hard

So this is what i have been doing at the moment.


Brekki:
Crumpets
about 400mls of choccy milk
400mls full cream milk with mix (protein shake)

Snacks:
Pretty much shit food here like chips/chocolate
muesli bars

Lunch:
Whole meal Sandwich with either ham/roast beef/chicken/lamb
tomatos/lettuce/nion/capsicum/cheese/butter
maybe a yoghurt

Snack:
Same as morning snack

Tea:
one of these -
chicken breast
chops
cassorole
pasta
rice
stirfry

not a huge desert fan

been having another protein shake before i go to bed.

I also include glutamine in my shakes.

So yeah give me as much advice as possible

 

[tablesalt]

haha thanks tablesalt.

yeah would be great to hear some more information from you.

I will pretty much eat anything that gets put in front of me its just forcing it down thats the problem. I really only eat small meals. I have been trying to drink alot of milk as that dont effect my mucus at all. but even thats hard

As long as you start increasing the food slowly, you should get somewhat used to it, just don't suddenly increase it overnight, ease into it. Like the video above, I found a lot of the time forcing it down to being a mental thing. It might sound stupid but I did all sorts of random little things to get myself eating whatever was in front of me. I use to cut my chicken into pieces and count them off 1 by 1 as I ate lol. The less I prolonged it the easier the next meal would be, etc etc. Avoiding eating at the computer was good, so I wouldn't drop the knife and fork and start typing or clicking lol.

So this is what i have been doing at the moment.


Brekki:
Crumpets
about 400mls of choccy milk
400mls full cream milk with mix (protein shake)

Snacks:
Pretty much shit food here like chips/chocolate
muesli bars

Lunch:
Whole meal Sandwich with either ham/roast beef/chicken/lamb
tomatos/lettuce/nion/capsicum/cheese/butter
maybe a yoghurt

Snack:
Same as morning snack

Tea:
one of these -
chicken breast
chops
cassorole
pasta
rice
stirfry

not a huge desert fan

been having another protein shake before i go to bed.

I also include glutamine in my shakes.

So yeah give me as much advice as possible

Yoghurt's good, I take some sort of probiotic tablets too, I can't remember the name at the moment though.

One thing that really helped me was stopping all the chocolate and other shit like doritos, chips etc that the doctors and dieticians had told me I needed to eat eat eat. After switching it all out my stomach felt much better. I just slowly replaced everything with either oats+milk, or chicken+rice or tuna+oil.

I'd replace the snacks with milk, you want protein in every meal.

For your dinner, try and get at least some sort of meat everytime, vegies too. Chicken + rice was the easiest for me to cook ahead of time and keep in the fridge.
You want energy overnight too since your body is constantly fighting off injection.

Since you're allergic to nuts, whole eggs and some sort of oil is good, I use extra virgin olive oil, most times I just fill a small glass and shot it after my food. Just be careful not having too much in one go and don't forget the creon tabs or the oil with go straight through you.

As long as you consistently get the food down and make progress in the gym you should start gaining weight. You might have to experiment with the creon too as you change the food around. I was taking 48 tablets of the creon25,000's back then throughout the day, any less and the food would go right through me. Now they have the 40,000's in Aus which is nice.

 

[ernie9]

Thanks heaps for your replys .

I will let you know how i go with everything