Message Boards for the CF Trust

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pebble

Posts: 9
Registered: 11-Nov-2006

Nutrition
Posted: 11-Nov-2006 14:19

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I know I should probably have asked this <I>before</I> I wrote my CF Diets piece for the Independent (and I did interview a few people, I swear), but what sort of calorie requirements do people find they have day-to-day? I'm lucky, I can get away with a pretty much normal diet, but I'd be interested to hear if anyone's got particularly vast needs - I know some people do, but I've never managed to co-relate it to any other aspects of CF. Is it when your lungs are getting worse? Or if you're prone to liver problems? Or CFRD? Or is there no logic to it at all?

Princess_sam

Posts: 22
From: sutton surrey
Registered: 06-Nov-2006

Re: Nutrition
Posted: 11-Nov-2006 14:32

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When I was 12/13 i had a gastrostomy fitted and i had it until i was 15 when it was taken out, alot of people have them fitted and don't get them taken out in my case i didnt really need it, it was just to ensure i went through the normal growth ie puberty that a teenager goes thru as in some cfs puberty can be delayed. I have a chocolate scandishake now and again but i drink a pint of gold topped milk every other day.

pinkgirl

Posts: 77
From: Ireland
Registered: 06-Nov-2006

Re: Nutrition
Posted: 11-Nov-2006 23:44

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I had a peg tube placed when I was two years old. I am only getting it out next year because I am so well following my transplant. I will be 19 when it comes out, so that's 17years on a feed every night! I used to think all cfers had this

_Nicola_

Posts: 54
From: Paisley
Registered: 06-Nov-2006

Re: Nutrition
Posted: 12-Nov-2006 00:25

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I've had a PEG tube since I was 13,I'm 23 now and don't see me getting rid of it anytime soon as my weight is still pretty rubbish.

I thought 10 years with a PEG was a long time,but I think your winning pinkgirl

Anders

Posts: 47
From: Glasgow
Registered: 05-Jun-2004

Re: Nutrition
Posted: 12-Nov-2006 00:50

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I've been passing a nasal gastric tube since the age of 10, i'm now 28 and so that's 18 years of overnight feeds. Overnight feeds consist of 1000mls -1500mls of Nutrison(high calorific milky type liquid)being fed to me on a nightly basis. Each ml of every feed has 1.5 calories, so you can work out the calories from that.

I have tried various other food supplements, these have included build-ups and calshake. Although both these drink supplements are very different in their content, the purpose of both is to get more calories into your body. The aim when i was young was to get in twice as many calories a day as someone else my own age. At the moment i aim to get 3000 -3500 calories in a day, a 'normal'(non-pwcf) aims to get 2500 calories a day -so you can see a clear difference.

I'm not 100% sure on this, but i believe gene mutation can be a determining factor when it comes to the efficiency of the pancreas. There has also been recent research in Dundee which has led to the following discovery -

http://news.bbc.co.uk/1/hi/scotland/tayside_and_central/5211162.stm

So i think there are few things that can affect weight gain in pwcf
1 - the ability for the pancreas to secret enzymes
2 - the fat controller gene (article attached)
3 - diabetes
4 - infection (more likely to lose weight, need food to fight bugs)

There are probably more things, but there is a start.

Just out of curiosity, what was the article for the Independent about? Nutritional problems are an intergral problem to most people with CF and i would have thought that any article about CF would mention the dietary problems. Historically pwcf would die due to malnutrition and many were (including myself) partly diagnosed due to failure to thrive.

Just out of curiousity, do you take creon? Did you consult a dietician prior to your article? Are they printing your CF article? If so, when is the article out?

Check this out too.

http://news.bbc.co.uk/1/hi/health/medical_notes/3104335.stm

pebble

Posts: 9
Registered: 11-Nov-2006

Re: Nutrition
Posted: 12-Nov-2006 02:53

Reply

Hey Anders, and thanks for all the info - I've never been able to handle NG tubes myself so I'm always impressed by anyone who manages to feed that way. I was on a litre of Nutrison daily when I was on dialysis (along with millions of creon), but was so unable to cope with the tubes that I ended up having to drink it. Which is NOT something I'd recommend.

The Independent article was explicitly about the CF Diet, but more a what-it's-like-to-live-with-it piece than a straight-out educational one, so based on my experience coping with dieticians rather than interviews with them. It was in on Tuesday last week I think, but has been syndicated in a slightly tweaked form by the Daily Mail, so should be in that some time this coming week. (It's in the Indy's web-archive, too, but you have to pay to get access to that - and, shockingly, I don't get a penny of it!)

I'm currently hunting out more explicit details about people's calorie requirements (which I know are usually 100%-200% of the standard diet; I just don't know how many people are at which end of the scale), because a TV production company has got in touch about doing a documentary on the subject. I kinda feel I need a broader range of experience than simply my own before I phone them, especially since I'm going to have to start by backpedalling furiously from the misleading "Matt Kimpton needs 5000 calories a day just to stay alive!" claims the Indy plastered over the top of the article.

(Not that they were intentionally misleading, I hasten to add - I was talking about the big scary CF diet being 5000 calories a day, and failed utterly to explain I'm not actually on that much myself. See, I've learned a lesson about journalistic integrity!)