Anyone else have Cystic Fibrosis here?

Hello!

I've often mentioned CF in my posts in the weight gain forums ect, but have so far not come accross any other Cfers in the forums. I guess it's because most people come on here for weight loss/maintenance rather than gain, but I thought it would be worth asking anyway!

Basically I'm okay, just struggling with putting weight on after an awful year with my lungs. I'm maintaining okay in 4000kcals but I can't help feeling I'm topping out at this much each day, I already have at least 1500 cals a day through overnight feeds/supplements and I feel like I have to put sooo much energy in to food and eating just to keep myself at bmi 17. I know that's not as underweight as alot of the people here but given how much calories I have it's just getting to me. When I used to have ON feeds, I piled on the weight easily but at  the moment it feels like I'll be on them forever.

ANYONE in a similar boat? Thanks for reading x

my cousin sufferers from this disease, she eats roughly the same amount, maybe some days 5000. i would suggest more supplements and top up the calories, my cousin is also very underweight, but its not an issue, what is though is taking 70 pills in one day for the raise of her life. so i  wouldn't worry about being underweight cause its not your fault, anyway hang in their and if you really wanna go for it then maybe you should top up your calories to 2000kals more = 6000. that number should be a where you can make a solid gain.

i hope this helps

:)

Thanks for your reply, Skunk45 :-)

I can relate to the 70 pills a day lol, that's about right for me too! I know it's not my fault, and my problem is that I just can't see where I can add in even more calories as many days I have no appetite at all! On good days I reach nearer 5000, due to overnight feeding and high cal meals.

I get a bit anxious about getting all the veggies and fruits I need to, do you think, given that I'll need high cals my whole life, not just for a gaining period, that it's better to just focus on pure calories and high fat, or that it's better to get all my fruit and veg portions too?

It may be a silly question.... idk. But I'm never sure! My dieticien once told me - just eat what you like and plenty of it, and don't worry too much about being healthy! But this was when I was much much thinner!

x

i think you should eat what you want and plenty of it like your dietitian said. and add in some fruits and veg, it really doesn't matter what you eat, as long as you meet your calorie target. you can easily eat healthy high calorie foods as well as foods that aren't so healthy and meet your target.

:)

Thanks again - yeah I think you're probably right. I guess it's less healthy to be really skinny than it is to sometimes not get your five a day lol! xx

Since fruits & vegetables take up so much stomach space, how about having 1-2 portions of fresh fruit/vegetables day (instead of 5), and having the rest as dried fruit, fruit juice, or vegetable juice? That way you'll get the vitamins, but have more room to get more calories in. 

It's probably also less important for you to have the full 5/day than people who are eating less, since 4000 calories has twice as many nutrients as 2000 calories, so it's okay if the foods themselves are a little less nutrient dense.

Since you will always need a higher level of cals, for the rest of your life and not a short period of time to increase weight, you need to look at long term health. Fruit and veges have alot of good minerals and vitamins that a "sick" body needs. I dont mean any offence by that, but i imagine that you get sick easily, that you are sicker longer etc. 

If you were to focus on high fat foods to increase weight for the rest of your life, that would probably have a negative impact on you body.

Could you try focusing on fruits, veges, lean proteins, ww carbs etc for you meals, and use supplements to top up your cals for weight gain. Say using ensure as snacks during the day and overnight feeds. Obviously you wont wont to be on the ON feeds forever, but maybe ue them to get your weight up and then when its in a good/safe range, taper off them and keep using ensure during the day to keep you weight up.

Is it possible to see a D that specialises in CF or chronic illness. Maybe a D could draw up a meal plan that will focus on your specific medical needs.

Thanks Apple and Kayeanne for your suggestions. I have recently taken a liking to dried fruit so maybe that will help!

I do see a CF dieticien every clinic but obvs she would exactly prescribe a set meal plan, just gives the supplements ect. She is very very helpful but I think as an adult it does have to come from me and be my responsibility!

Yep, I have tried the healthy foods, and supplements to top up but it wasn't enough apparently lol... I already have 5 bottles of ensure equivalent and 1 calshake a day so I think the rest of my cals need to come from foods.

I'll definately focus on the low bulk though, and eat just enough of the healthy stuff to feel comfortable. x

Smash, stick to higher-cal veg and fruit. I know dried fruits have already been mentioned - but maybe try choosing starchy veggies like sweet potatoes (or any potato really) corn, sweet peas, even plantains and avocado would be great. And make sure never to eat anything plain. Sweet P + hummus or almond butter = yum! You can also make high cal mashed 'tatties by adding in a packet of instant breakfast powder. I used to add that stuff to everything, milk shakes, oatmeal, bowls of cereal, etc. Also, adding even just one tablespoon of olive oil to say, the veggies you want to eat or even just using that much to toast bread on a frying pan adds and extra 120 calories. That was a huuuge help for me when I was gaining. Also big help: mixing HWC into every serving of yogurt, cheese, and coffee I had.

Thanks so much for that Rebel - will certainly put butter or oil on all of my veg not just when I remember lol... I am so in to your trick of instant break. in your foods! I use a powder called calshake or scandishake and have done choc. oatmeal with it, poured it over weetabix, ect.

Also might be being thick but what does HWC stand for? x

Heavy Whipping Cream. 50 calories/TBS.  I used to cook oatmeal like this:

1/2 c. oats, 1/2c. soy vanilla protein shake mixed with 1/4c. HWC, 1 packet instant breakfast powder. Then I'd add any 3-4 items out of the following: banana, dried figs, raisins, cherry or apple pie filling, PB, chocolate chips, coconut flakes, trail mix, granola, almonds, walnuts.

I also did the same thing (essentially) to my daily yogurt messes. And I also added the HWC into cottage cheese, coffee, tuna casserole and mixed it into creamy salad dressings for veggie dip.

Aah gotcha! Its coz I'm Brittish - we call it double cream or single cream. I quite often put single cream in my breakfasts and into plain milk (thank god I like the taste of cream lol) but hadn't really thought of adding it to cottage cheese! Also had been getting single cream as it mixes easier, but actually I think I'll give the heavy another go. Good one.. you should be a CF dieticien :-)

And I lurve PB. That does actually go in to and on to nearly everything I eat lol!