Steve’s bowel cancer story
Steve shares his bowel cancer story and shares, “If you have blood in your poo, it needs checking out. Don’t put it off.”

Issue date: 14th April 2025 (Version 6).
The most up to date advice about the ongoing Creon, Nutrizym and Pancrex supply issues can be found on the Pancreatic Society of Great Britain and Ireland (PSGBI) website: https://www.psgbi.org/position-statement-pert-shortage/. If you would like a printed copy, you can e-mail us at info@gutscharity.org.uk or call us on 0207 486 0341.
Manufacturers have customer support lines that may help you find a pharmacist nearby with stock.
Please note, the advice in this document is designed for adults with PEI. Specialist advice should be sought for children with PEI. People with cystic fibrosis (CF) will be cared for by a specialist centre. We have highlighted that some of the advice in this leaflet is not for people with CF. If you have CF, you should contact your specialist team if you have any concerns.
Somatostatin analogues are the medicines Lanreotide (Somatuline®)/Octreotide (Sandostatin®). Please contact your specialist centre if your symptoms worsen, or you have any concerns.

Please note. this information has been extensively revised in view of the availability of imported alternatives to Creon®, Nutrizym® and Pancrex®. Everyone should now be able to get the enzymes they need but they might be a different brand.
Doctors prescribe pancreatic enzyme replacement therapy to support adequate digestion in people with pancreatic exocrine insufficiency (PEI). Most commonly PEI is caused by pancreatic cancer, pancreatitis, pancreatic surgery, neuroendocrine cancers and cystic fibrosis (CF).
Many other clinical situations can cause primary or secondary PEI. These include:
PEI has many causes, but symptoms and their severity vary from person to person.
The ongoing supply issues surrounding pancreatic enzyme replacement therapy (PERT) is going to continue until the end of 2026.
PERT are supplied under the product brands: Creon®, Nutrizym® and Pancrex®. These supply issues are intermittent. The current supply issues mean some people will need to be supplied with a different brand of PERT. This advice is designed for everyone who takes PERT.

For the most up to date information on current supplies please check the Specialist Pharmacy Service website: Prescribing and ordering available pancreatic enzyme replacement therapies – SPS – Specialist Pharmacy Service – The first stop for professional medicines advice. This website also has a tool to help healthcare professionals to change the type of PERT. Please contact us if you would like a copy on info@gutscharity.org.uk or call 020 7486 0341.
Symptoms of untreated PEI may include:
These symptoms are usually treated by taking PERT and will recur if you are unable to take enough.
We have divided the advice for people with PEI into three stages. The stage depends on the supply available:
Whilst PERT supply issues continue, please do not stockpile them. Stockpiling will further drive the shortage.
The Department of Health and Social Care has recommended that only a 1-month supply is issued at a time. This is to try and regulate supplies. So, if you now get 2-3 months of your PERT at a time, you will need to refill your prescriptions more often.
If you pay for your prescription, you should consider applying for a pre-payment certificate. This will help to reduce the cost of prescription charges. You can find more: https://www.nhsbsa.nhs.uk/help-nhs-prescription-costs/nhs-prescription-prepayment-certificate-ppc.
Requesting your prescriptions:
The following advice will make your PERT as effective as possible:
Stage 1 summary:
Please make sure you:
Sometimes people may need to increase the amount of PERT they take as time goes on. If you are new to PERT, you may benefit from increasing your dose if:
If you have cystic fibrosis – please contact your specialist centre.
Before increasing your dose, please check you are using your PERT as effectively as possible:
Or a (H2)-receptor antagonist. Examples include:
These reduce the acid in your stomach and make the enzymes work better. This means a lower PERT dose than your usual dose may be effective if you have a proton pump inhibitor as well. If this does not appear to be effective, they may be stopped. This may not be appropriate for everyone.
Advice for people taking nutritional supplement drinks
If you take oral nutritional supplements (i.e., Altraplen® Amyes®, Ensure®, Foodlink® Fortisip®, Fresubin®), ask your dietitian if they can be changed to a peptide / semi-elemental preparation (i.e., Vital 1.5kcal®, Survimed OPD 1.5kcal®, Peptisip Energy HP®) as most people can manage these without additional enzymes.
These do not come in a wide range of flavours, but you can add milkshake mixes or coffee syrups to increase the range of flavours. Serve them chilled or freeze them into ice lolly moulds or ice cube trays to give you more options.
Sometimes you may be asked to try individual protein supplements or a fat-free nutritional supplements (Actagain Juce®, Altrajuce®, Ensure Plus Juice®, Fortijuce®, Fresubin Jucy® etc.,). You should sip these slowly to give your gut more time to digest them without PERT. If you have diabetes monitor your blood glucose levels closely when taking these.
If you feel bloated with these, don’t worry – this is a normal effect of taking these without PERT, but if it is affecting your quality of life, please let your dietitian know.
Try not to worry – Primary Care (GP surgeries and health centres) have made plans to reduce the risk of anyone running out. Whilst there are plans in place to make sure PERT is available for everyone, there are a lot of medication shortages now, and your GP or local pharmacist may not be aware of the advice available within their area. They may need to contact their medicines management team to access this advice.
There are two steps for you to do if you have less than two weeks supply left and your Pharmacist is not sure if any more will come in time.
If you have completely run out, please make an emergency (same day) appointment with your GP. You can show them this document.
They can access advice for health care professionals here: https://www.psgbi.org/position-statement-pert-shortage/.
If you are under the care of a local hospital, please contact your local hospital team and ask for a rescue prescription. This will only cover a short time and does not replace the use of an imported medicine for you. Hospitals no longer receive priority for ordering stock of PERT, so this may not be possible.
Guts UK
Here at Guts UK Charity, we support people with pancreatitis and pancreatic exocrine insufficiency. This includes pancreatic exocrine insufficiency caused by stomach surgery and diabetes. We’re open Monday to Friday, 9am to 5pm. You can call us on 020 7486 0341 or email us at info@gutscharity.org.uk.
Pancreatic Cancer UK
Cystic Fibrosis Trust
Neuroendocrine Cancer UK

Steve shares his bowel cancer story and shares, “If you have blood in your poo, it needs checking out. Don’t put it off.”
Griffin shares his experiences with IBS. He wants others to know that digestive conditions, such as IBS, and their impact on people need more awareness.
By submitting this form, you are consenting to Guts UK contacting you by email as detailed above. To make any changes to your preferences you can email us on info@gutscharity.org.uk or by calling us on 020 7486 0341. Your details are safe with us. Please read our Privacy Policy for more details.