Trouble dosing creon help!

[Marcusukcf]

Hi everyone, im new to any cf forums but i need some advice on dosing my creon.

About 2 years ago i started going to the gym and increased the amount of food i eat to try put on some weight which i have done. But around a year into it my stools started going very pale and with tiny pieces of undigested food in. Iv tried increasing tablets decreasing them nothing helps. I havent passed a normal stool the whole time. My diet is fairly low fat but when i do have a high fat meal etc and increase creon this doesnt have any effect. The stools are not greasy, to be honest it looks like baby poo ( sorry ) lol.
My cf nurse has no idea what it is so im at a dead end, any one had this before or have any suggestions for me? Would be greatly appreciated! Thanks alot

 

[Aboveallislove]

One thing that heled with our son was breaking meals up so highest dose he was allowed could handle the fat. Can you post the dosing you are on and amount of typical fat you take with that dosing? I'll see if I can find what I used to get a gauge on how much the enzyme could process in fat etc. might nt be until Monday but maybe someone else can help too. And to confirm it only started when you started eating more? Any floating stools? Any gi pain?

 

[Marcusukcf]

See thats the problem, obviously having cf we need more calories than the average person and im 94kg 6'3 so my calories are roughly 5000 per day to gain weight. So i cant really eat small meals else id be none stop eating.
Meals are usually pretty low fat
200g chicken 400g sweet potato and broccoli so id say less than 5g fat per meal for which id take 1 creon. Breakfast is the only high fat meal as i have peanut butter, eggs, oats and mill in a shake which has 45ish grams of fat so id take 9 with that. I go for roughly 1 creon 10k to 5g fat. No floating stools or pain. But alot of distension.

 

[enniob]

You should try to play around with fiber content of each meal. High fiber allows longer digestion (food passes through you slower) and low fiber allows for faster digestion (food passes through you faster). By regulating fiber in your meals you are able to regulate the digestion efficiency. Only down side to high fiber is that it fills you up and you will be less hungry. So to get 5000 cals you would need to supplement between higher fiber meals (for better absorption) with low fiber / high energy meals. Let us know how it goes!

- Chris

 

[scrapper1264]

My son started having issues with his enzymes and started taking Prevacid. It helped tremendously. Doctor said people with CF have more acid in their gut so the enzymes weren't that effective because of the excess acid.

 

[Printer]

You need to understand that the enzyme that is normally produced by the pancreas is there to help in the digesting of ALL food, not just fats. Therefore the CREON is a substitute for that enzyme and is needed in the digesting of ALL food.

As to the proper dose, we are all different in that your pancreas likely still produces some natural enzyme. Therefore it is a trial and error approach to determining the proper dose. It took me about one year, with the help of a CF Gastro Dr, to achieve the proper dose. Those of us with CF tend to eat slowly. I have found it to be beneficial to take HALF of the pills at the beginning of the meal and the balance upon completion.

Good luck,
Bill

 

[peter]

Did you go to Creon.com? It has a help link on home page but you have to fill out their verification form. They may have someone to advise you of that. Also there may be some well qualified dietitians at cf centers (possibly even yours) to give advice.

 

[Marcusukcf]

see my dietician has told me that i dont need to take any creon if the meal has no fat content, this may be where I'm going wrong then.
but it still leaves the issue that there is no fat in the stool when i do have a high fat meal and up the creon dose. so surely the amount I'm taking is correct?
yes i split the dose up half way through then half at the end.
never had this problem before i increased my food intake.
also i recently had facial impact and was given klean prep which actually resolved the problem for a few weeks, then i started to up the food intake again and that was it, the problem came back.
22 years and i still can't get my head round it all tbh

 

[Marcusukcf]

iv had a look on creon.com but as far as i can find it only tells maximum dose for my weight.
in all honesty my dietician isn't very good, her help goes as far as " aww that doesn't sound right try taking 1 extra creon "

 

[enniob]

As I mentioned above, I do not think it can hurt to try and experiment with varying amounts of fiber in your meals. More fibre can have a positive effect on food absorption and enzyme efficiency. I think very little if any literature can be found on this topic for CF, but its common amongst dieters and people with digestive issues. Ask your dietician...would be interested to see what her reply is.

 

[Marcusukcf]

As I mentioned above, I do not think it can hurt to try and experiment with varying amounts of fiber in your meals. More fibre can have a positive effect on food absorption and creon efficiency. I think very little if any literature can be found on this topic for CF, but its common amongst dieters and people with digestive issues. Ask your dietician...would be interested to see what her reply is.

okay il give that a go and see if it has any effect, i eat a fair amount of fiber in the morning but hardly any throughout the day really.
iv actually asked for a fiber supplement from her before but she told me there isn't one. this is the reason iv came to a cf forum as I'm not really getting the help i need from my dietician.

 

[Printer]

I like to say that the world is full of Doctors who can't spell CF, much less diagnose or treat it. It is my personal experience that Dieticians, even those working in CF Clinics, only have a limited knowledge of CF enzymes.

Bill

 

[enniob]

okay il give that a go and see if it has any effect, i eat a fair amount of fiber in the morning but hardly any throughout the day really.
iv actually asked for a fiber supplement from her before but she told me there isn't one. this is the reason iv came to a cf forum as I'm not really getting the help i need from my dietician.

There are a ton of fiber supplements selling online. Most are good. Fiber is Fiber...can't go wrong. Just look at what else they put in there. Shop at a bodybuilding store...they are usually pretty savvy about their supplements. With a supplement, you can more easily adjust your fiber intake. If you get it in pill form, it maybe easier to count and dose...But you can also just add green vegies to your diet....that will do the trick. Fiber is one of the most under rated items in any diet, there's a reason why mothers always tell you to eat your veggies!

 

[Printer]

Marcus:

Good luck if you think that fiber will assist in digesting food.

Bill