Howimportant

[Howimportant]

Just an add on from previous post the 2500 creon per 2kg of your weight the British professor suggested in his paper he also said to adjust accordingly. As you can see I was taking double the 2500 per 2kg recommended, I done this for 3 months but that is what worked for me and as from today my phone has reminded me to start to reduce my creon monthly and if all goes well I should be down to the 2500 per 2kg recommended for fatty meals and less for snacks etc. But it’s definitely trial and error and the twice 2500 dosage worked for me and it will be different for everyone. Start at 2500 creon to 2kg of weight for fatty meals and don’t be scared to take double if needed. I’ve also read a lot about creon there’s really nothing in it to harm you after all it’s just pigs pancreas. When I began taking the 2500 per 2kg I thought the professor was wrong I was not improving but then I remembered in his paper to adjust accordingly which I did, I did not think this would work, well nothing else had but after 2 years of being so so sick you try anything. I’m not going to the toilet 15 to 20 times a day actually it is now once a day maybe twice and a lot more solid (what a thing to be writing about), but this is our life now, I’m not vomiting up to 3 times a day on a daily basis, I’m not spending sometimes a week at a time in bed trying to survive on water only, a packet of my pain medication is now lasting months not weeks I feel as though I’m controlling the chronic Pancreatitis and not it controlling me. Don’t get me wrong I still have bad days or should I say really bad nights because for some reason, maybe because I’m still breaking down food at night, nights can be tough. Music is my friend because not sleeping night after night and rolling around in pain it was the music that got me through many a night. Another heads up constipation is definitely my worst enemy so I do take movicol daily and it’s harmless. It’s a tough journey but there can be a light at the end of the tunnel at least in my case. I play lawn bowls and haven’t missed a game for 3 months whereas 12 months ago I was pulling out of games fortnightly and when I did play I didn’t enjoy it because I was feeling terrible but I had to try and get out of the house. Now I’m feeling much better (my mum died of mnd) there is no way she could get out and bowl and she was bedridden for the last 6 years of her life so chronic Pancreatitis is a terrible terrible disease but now I have it somewhat under control there are diseases that are a lot worse. Trust me I’ve been to hell and back with chronic Pancreatitis and don’t forget if your symptoms are like mine were don’t ask your doctor you are going to try more creon tell him you are and tell him about the 2500 per 2kg because my specialist didn’t know that was the correct dosage. Good luck all.

[Dipsacus]

This is really interesting BUT I seem to have missed the original post from the British Professor. Correct dosage is a very tricky matter and I am keen to understand the way this works. I am 68 kg I lost a lot weight when EPI started and never recovered back to my previous 73kg. It was only by upping my dose far more than the recommended that it started to rise from the low 6os. Sorry about all your pain and glad that you have some relief now, hope improvement continues.

[Howimportant in reply to Dipsacus]

The paper I read by the British professor suggested 2500 creon per 2kg of weight but it was adjustable it wasn’t working for me so I doubled the dose for 6 months which has just ended and this has worked a treat I went down to 45kg I’m now back to 63kg I’m now going to try to get back to dose professor suggested if I start to get ill again I will adjust creon back up but at my weight should be around 80000 creon for fatty meal and less for healthier. I reckon I will be ok

[Howimportant in reply to Dipsacus]

Sorry the British professor was online not on forum I really wish I wrote down his name but nothing had worked before so I also thought this wouldn’t work