Advice for Creon

[Pete12]

Had my Whipple in June this year and all is going to plan so far. The only issue I have is with continuing problems with floating/oily stools. I have been taking Creon for about two months now after finally being seen by the Dietetic's team at the hospital. I lost 12 Kilo's following my surgery but have put most of this back on since taking Creon. I had my second appointment with the dietician 2 weeks ago, and as I have put the weight back on I was "discharged" with no follow-up. my problem is that despite taking 160,000 units with main meals and 80,000 with cereals or snacks my stools are still pale, oily and float. Is this normal? or should I request a further appointment with the dietician. Any advice would be gratefully appreciated.

[Bowie]

Pete, hi, glad you are doing so well. James is different in that he was only diagnosed when he was terminal back in March and has had continued problems on and off with sterroherea, ie what you describe compared with usual diarrheoa, although with chemo he gets that too. He takes twice the the amount of Creon you take and even then sometimes gets it wrong. That is around 8 X 40,000 with a main meal as apparently you can't take too many.

Hope this helps

Fiona X

[Pete12]

Hi Fiona. Hope James is feeling well at the moment. The dietician said that given my weight I could take up to 22 40,000 tablets a day so I assumed that is my upper limit. I'm not taking that amount yet but seems like I will need to increase my intake. I am a bit confused by her statement that 22 40,000 capsules is my upper limit as like you I thought that you couldn't overdose on Creon. Seems like I may need to contact the specialist nurse for some more guidance, as it seems the dieticians couldn't wait to get rid of me!!

[Guest]

Hi Pete,

Hope you have spoken to someone about the creon. I know each creon sounds a big number, but it isn't really. My dad takes 12 40.000 creon with each meal, whatever that meal may be. You can have as many as you need. I wonder if you have a underlying problem with your diarrhoea? Are you taking loperamide and/or codeine as well?

Leila xx

[Jim]

Pete, My mum is in the same boat and its really getting her down (no proper bowel movement since the surgery 3 months ago and diahorreah most days and sometimes several times a day. She has increased to 18x40 Creon capsules a day in an attempt to help it but we are still really at a loss. Do you experience the loud stomach rumblings with it? I suspect your dietician will suggest to increase your dose either of creon or loperimide / imodium.

[dabber66]

Hi Pete, I too had surgery, but mine was the other end - the body and tail of my pancreas -' a distal pancreatectomy,' also lost my spleen and part of my tummy. I struggled with creons, being very bloated amongst other things. I was changed to Nutryzym 22, and have never looked back, but I do not take very large doses, but I don't eat much fat, no processed food etc. It was trial and error - been two years now - and I manage it very well. If you are able to see your dietician, that would be good, I got a lot of help from Jenny, one of the specialist team at the time, I would certainly seek some more help and advice. Some patients do take large quantities of these enzymes, but it does take time to adjust, and I am sure you will eventually find what dose you need. My nutryzm is 22,000 per capsule, I take only two with breakfast, [one egg on one slice of toast that sort of thing] perhaps only two with lunch but if I eat something sweet afterwards, then I take three, but my diet is very simple fresh meat/fish, fresh veg. and fruit - organic mostly, I make my own bread, I then know exactly how much sugar/salt/fat is in it -I also add some oats or oat bran [i use olive oil, small amount, 1 teas. sugar and 1 teas. salt - it is easy with a bread machine! - it is just getting into the routine, I have to do it, so, I get on with it! I learnt many years ago, just what is in so many products, and bread can be very high in things you don't need. I was lactose intolerant many years ago, so had to read so many food labels, it has become routine to do this. Hope the above helps a little. Carole.

[Pete12]

Thank you all for your valuable advice. Sorry I've not responded sooner due to Xmas and also not been feeling too well. I did manage to speak to the specialist nurse at the hospital, and she was very helpful. She advised me to take more creon with main meals, she also said that given my weight I can take up to 24 40.000 capsules a day with no problems. The main problem I have at the moment is I'm feeling quite nauseous and light-headed a lot of the time. I am taking Cyclazine but it doesn't seem to be helping much, so I went to see the G.P. last week to see if he could prescribe something stronger but he just prescribed Lansoprazole which is an acid reducer which hasn't helped at all. I also had a fasting blood test last week and the practice nurse said that my blood count was 14. She also said that my liver function came back as abnormal, which they expected? she didn't elaborate, and to be honest I didn't ask for an explanation at the time, I am due to see her again on Monday so will ask for an explanation then.

Once again, thanks for the advice and support. This site really is a lifeline.

Happy new year to you all.

Pete

[J_T]

Hi Pete, hope you are soon feeling better and the extra Creon helps. Hoping also you have a good meeting with your GP.

HNY to you too.

Julia x

[sandraW]

Hi Pete, Happy New Year to you too, I hope you get your problems sorted soon, take care sandrax

[PCUK Nurse Jeni]

Hi Pete,

Can you give us a call and we can discuss the issues with creon.

Have you tried opening them up?

Our number is 0808 801 0707.

Kind regards,

Jeni.