Wondering if anyone can relate to these symptoms

[Nomojo56]

After an appointment with a dietician I was tested for suspected EPI and my level was very low - 53. I have been prescribed Creon 25000 and taking those for about 4 weeks.I have had M.E/CFS and fibromyalgia for over 25 years and two years ago was diagnosed with prostate cancer. I had radiotherapy and was prescribed hormone therapy tablets. My PSA levels have fallen and my progress seems ok.

Re. EPI - my haemoglobin and red blood cell count has slowly, slowly dropped over past few years until slightly below lowest ref level but GP said not low enough for concern. I have had digestion issues (IBS) for over 20 years and over last few years very bad constipation - so not those associated with EPI. My weight has not fallen and I don't really seem to have any of the symptoms of EPI - though the faeceal elastene test proves I do have EPI. I may be constipated as side effects of hormone therapy but doubtful. I don't have pain in my back or feel nauseous.

Apologies for long post but just wondering if anyone else been diagnosed with EPI without any of the classic symptoms? Incidentally, since taking Creon, I do seem to have slightly more energy but no improvement to digestion/bowels.

Thanks for any support or advice

[madonbrew Pioneer]

Yea me! My EPI was15 (I've had CP for 26 years now&my pancreas is shot) I am more likely to get constipated than anything. I'm really rubbish at taking creon because I don't have steathorrea (however you spell it). I also haven't lost any weight....in fact, I'm currently at my heaviest....BMI 25.5.. but I prefer to be down at the lower end BMI 20.

Sorry you have so much to deal with.

[Nomojo56 in reply to madonbrew]

Hi, thanks for getting back. Sorry you have so much to deal with too. Do you think your constipation may be related to other drugs you are taking ? Just wondering how much help or advice you have had from dieticians. I due for a follow up appointment with one on a few weeks and really confused about the best things to eat - low fat or not etc etc. I'm mainly veggie and gluten intolerant (not coeliac) but last year or two have a lot of problems with beans, pulses, tofu or other hi fibre grains and fruit. Not sure what to eat for the best any more. The Creon does not seem to have helped with this and since moving from 10000 to 25000 I have more cramping than before. Thanks for your advice

[simpleguy999]

I don't have any classic symptoms of EPI either. I take Creon 360,000. I've been on it for just a week. My digestion was pretty good before starting Creon. I don't notice much difference in a week's time. It would be more helpful if I post after having been on Creon for a while. Just thought I'd check in with you.

[Epiguy]

curious, what are your symptoms? I’ve switched from Creon to Zenpep which is a bit cheaper and seems to be a bit better than Creon for me. Apart from bloating and some gas I feel pretty good.

[Jackie1947]

I don't have any symptoms of lack of EPI. Just as well as I'm intolerant to pork as that's what the enzymes contain . I just have to get on with it.