Thanx for the info even though I'm terminally ill. I've just started taking Creon and its working well (low doses under close doctor's watch). If I'm not careful, I can have manic pain attacks after eating. I have advanced stage Pancreatic cancer (Liver MTS) .
Hello Steve, we're incredibly sorry to hear you have received a terminal diagnosis of pancreatic cancer. However, it is good to hear you have been able to access Creon and that it is working well for you. Have you been in touch with our specialist nurses on our support line? They can offer practical advice and support, to you and your loved ones if needed. Please get in touch for free on 0808 801 0707. Take care. 💜
@PancreaticCancerUK Thank you. I will do. I'm currently undergoing palliative care at a hospice in London, however, as my abdominal and back pain is nearing controllable (after one month), the doctors are hoping to refer me to either a care home or supported accommodation. I'm very mobile, still have a good appetite. I was emergency repatriated by the British Embassy/Home Office after I got trapped in rural Cambodia. I will contact you either by phone or website soon. Much Appreciated.
@@Steveinthailand It's good to hear you aren't having any mobility issues and that you've still got your appetite. Fingers crossed you can soon leave the hospice and move to more suitable accommodation back in the UK. We look forward to hearing from you. Take care, Steve. 💜
Alpha gal protein allergy is a problem w PERT therapy. I wish GalSafe pigs would be developed in Pharm Industry for PERT production...Im surprised this prob not yet addressed..
I have stage 4 pancreatic cancer n I'm taking croon. It doesn't seem to be working. I'm a native American Indian and carrying a Whiteman disease. I was told this is very unusual for me to be carrying this disease
We are sorry to hear you have pancreatic cancer and that your Creon supply does not seem to be helping you. We recommend talking to your GP or getting in touch with our specialists nurses on our support line. They can answer your questions, offer emotional support and provide practical advice. You can call the nurses for free on 0808 801 0707, email nurse@pancreaticcancer.org.uk or visit: bit.ly/3v4PFZk to find out more. Take care. 💜
Sorry to hear you're suffering at present! Our specialist nurses will be able to help you with any PERT-related questions. Please give them a call on 0808 801 0707 or email nurse@pancreaticcancer.org.uk, and they'll be able to best advise you. Thanks.
I have been taking 7-9 25k creon for a year now. No matter what I eat or how much, I get mainly formed but constantly greasy and sticky stools. I've tried 10-11 pills to see if it makes a difference but it doesn't. Not had a non sticky movement since my Diagnosis so it is very disheartening. Tried ppis and slow release bicarb of soda tablets with no noticeable improvement. I hear that some people have better luck on a different brand but there's only creon in my country. It's so frustrating 😟
Hi Richie. Sorry to hear that you've been having trouble with this. Have you spoken to our specialist nurses at all? They're free to call and chat to about your diagnosis, treatments, side effects etc and provide valuable support and guidance to many people on Creon. Their number is 0808 801 0707, or you can email them at nurse@pancreaticcancer.org.uk 💜 Take care - Ruth at PCUK.
@@siiwok Sorry to hear that! Have you spoken to our specialist pancreatic cancer nurses? They're free to call on 0808 801 0707 or you can email them on nurse@pancreaticcancer.org.uk
I was diagnosed with pancreatic insufficiency about 5 years since and prescribed Creon 25000 capsules but never got the correct dosage so carried on struggling with bad symptoms all the usual symptoms as I’m also type 1 diabetic and have gastroparesis and had quadruple heart bypass surgery So I’ve a lot going on I’ve recently been really poorly with high blood pressure problems and my tablets have been strengthened But I have found that the more pancreatic enzymes I take seem to help my symptoms and didn’t realise that you can’t really take too many Is it possible that I’ve been on the wrong dose for a good few years
Hi Dennis, thank you for your question. Have you spoken to our specialist nurses at all? They're free to call and chat to about your diagnosis, treatments, side effects etc and provide valuable support and guidance to many people on Creon. Their number is 0808 801 0707, or you can email them at nurse@pancreaticcancer.org.uk 💜 Take care - Ruth at PCUK.
I just started enzymes. Having severe upper stomach pain & vomiting a few hrs later that lasts most of the night. Is this normal in getting used to the enzymes
Sorry to hear you're having these symptoms Kathryn. Our specialist nurses will be able to talk through these symptoms and your PERT use with you, please contact them on (freephone) 0808 801 0707 or nurse@pancreaticcancer.org.uk. Take care.
i have a fecal elastase of 28 so im very low.i was told to take 1 with snacks and 2 with a main meal but m still suffering . my specialist told me to double up now but i still feel that will be to low as my enzymes are realy low . can anyone advise me how many to take please
Hello, thank you for your comment. Please get in touch with our Specialist Nurses on (freephone) 0808 801 0707 who would be happy to help you with your enzyme dosages. Thank you.
Ive got pancreatitis. And im all out of creon to help break food down in my tummy. Do i gain a lot of weight if i stop using creon because its happening
Thanx for the info even though I'm terminally ill. I've just started taking Creon and its working well (low doses under close doctor's watch). If I'm not careful, I can have manic pain attacks after eating. I have advanced stage Pancreatic cancer (Liver MTS) .
Hello Steve, we're incredibly sorry to hear you have received a terminal diagnosis of pancreatic cancer. However, it is good to hear you have been able to access Creon and that it is working well for you. Have you been in touch with our specialist nurses on our support line? They can offer practical advice and support, to you and your loved ones if needed. Please get in touch for free on 0808 801 0707. Take care. 💜
@PancreaticCancerUK Thank you. I will do. I'm currently undergoing palliative care at a hospice in London, however, as my abdominal and back pain is nearing controllable (after one month), the doctors are hoping to refer me to either a care home or supported accommodation. I'm very mobile, still have a good appetite. I was emergency repatriated by the British Embassy/Home Office after I got trapped in rural Cambodia. I will contact you either by phone or website soon. Much Appreciated.
@@Steveinthailand It's good to hear you aren't having any mobility issues and that you've still got your appetite. Fingers crossed you can soon leave the hospice and move to more suitable accommodation back in the UK. We look forward to hearing from you. Take care, Steve. 💜
What is maximum safe limit of Lipase , Protease and Amylase intake?
Alpha gal protein allergy is a problem w PERT therapy.
I wish GalSafe pigs would be developed in Pharm Industry for PERT production...Im surprised this prob not yet addressed..
Porcine pig source of PERT enzymes contains alpha gal protein, which many people have allergy to alpha gal ..
I'm going speak to Mylan Viatris abt Gal Safe Porcine PERT production
Thanks for the info
creon or enzyme Digest Gold?
I have stage 4 pancreatic cancer n I'm taking croon. It doesn't seem to be working. I'm a native American Indian and carrying a Whiteman disease. I was told this is very unusual for me to be carrying this disease
We are sorry to hear you have pancreatic cancer and that your Creon supply does not seem to be helping you. We recommend talking to your GP or getting in touch with our specialists nurses on our support line. They can answer your questions, offer emotional support and provide practical advice. You can call the nurses for free on 0808 801 0707, email
nurse@pancreaticcancer.org.uk or visit: bit.ly/3v4PFZk to find out more. Take care. 💜
After gallbladder surgery
I am suffer
Can you recomend which enzyme will help me?
Sorry to hear you're suffering at present! Our specialist nurses will be able to help you with any PERT-related questions. Please give them a call on 0808 801 0707 or email nurse@pancreaticcancer.org.uk, and they'll be able to best advise you. Thanks.
Can I take 3 x 10000 units instead of 1 25000? Doctor didn't prescribe enough and waiting for prescription
I have been taking 7-9 25k creon for a year now. No matter what I eat or how much, I get mainly formed but constantly greasy and sticky stools. I've tried 10-11 pills to see if it makes a difference but it doesn't. Not had a non sticky movement since my Diagnosis so it is very disheartening. Tried ppis and slow release bicarb of soda tablets with no noticeable improvement. I hear that some people have better luck on a different brand but there's only creon in my country. It's so frustrating 😟
Hi Richie. Sorry to hear that you've been having trouble with this. Have you spoken to our specialist nurses at all? They're free to call and chat to about your diagnosis, treatments, side effects etc and provide valuable support and guidance to many people on Creon. Their number is 0808 801 0707, or you can email them at nurse@pancreaticcancer.org.uk 💜 Take care - Ruth at PCUK.
You say take with meals..so does that mean you take just right before the meal OR after swallowing a bite of food then take the enzymes?
Hi, thanks for your question. Our nurses recommend that you take a mouthful of food, and then the enzymes. Hope that helps!
@@PancreaticCancerUK yeah I tried that and I got much more steatorreah.
@@siiwok Sorry to hear that! Have you spoken to our specialist pancreatic cancer nurses? They're free to call on 0808 801 0707 or you can email them on nurse@pancreaticcancer.org.uk
I was diagnosed with pancreatic insufficiency about 5 years since and prescribed Creon 25000 capsules but never got the correct dosage so carried on struggling with bad symptoms all the usual symptoms as I’m also type 1 diabetic and have gastroparesis and had quadruple heart bypass surgery So I’ve a lot going on I’ve recently been really poorly with high blood pressure problems and my tablets have been strengthened But I have found that the more pancreatic enzymes I take seem to help my symptoms and didn’t realise that you can’t really take too many Is it possible that I’ve been on the wrong dose for a good few years
Hi Dennis, thank you for your question. Have you spoken to our specialist nurses at all? They're free to call and chat to about your diagnosis, treatments, side effects etc and provide valuable support and guidance to many people on Creon. Their number is 0808 801 0707, or you can email them at nurse@pancreaticcancer.org.uk 💜 Take care - Ruth at PCUK.
I just started enzymes. Having severe upper stomach pain & vomiting a few hrs later that lasts most of the night. Is this normal in getting used to the enzymes
Sorry to hear you're having these symptoms Kathryn. Our specialist nurses will be able to talk through these symptoms and your PERT use with you, please contact them on (freephone) 0808 801 0707 or nurse@pancreaticcancer.org.uk. Take care.
i have a fecal elastase of 28 so im very low.i was told to take 1 with snacks and 2 with a main meal but m still suffering . my specialist told me to double up now but i still feel that will be to low as my enzymes are realy low . can anyone advise me how many to take please
Hello, thank you for your comment. Please get in touch with our Specialist Nurses on (freephone) 0808 801 0707 who would be happy to help you with your enzyme dosages. Thank you.
Ive got pancreatitis. And im all out of creon to help break food down in my tummy. Do i gain a lot of weight if i stop using creon because its happening
Your gaining weight back after you stopped taking creon ? Or are you losing weight while on this medication? Hope your feeling better