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Hi All


This is my first time posting.

A little about our situation - My mum has recently been diagnosed with Cancer. The cancer she has is a mass surrounding the major blood vessels near the pancreas (inoperable). This falls under PC.


She is doing amazing, I'm so proud of her. However she is suffering really really bad with diarrhoea. This has been going on for months to the point now she's not eating because of it.


We were given Creon tablets 25000 and she's tried those. They suggested she might not be taking enough and you cannot overdose on them. She can take 20 a day and it makes no difference if anything worse.


She was prescribed Loperamide tablets (diocalms) she can take 8 a day and she's still bad.


She feels like a prisoner scared to leave the house. I'm worried that its making her stop eating because she suffers so bad after. The risk now is she is weak and loosing more weight.


Can anyone suggest any help or tips? Anything really.


Thank you

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Hi Gemma,

Not sure how helpful I can be, I’m not a nurse just someone who has gone through what you are. But one thing I’ll ask is when does your mum take her creon? Some people don’t seem to get told you take them at the time of the meal it’s not tablets you just take all day long like you do pain killers.


From memory I feel like there was someone else on here having the same issue, and it turned out to be from an infection rather than the assumed reason of the pancreatic cancer. Can be easy to blame everything on the cancer when actually other things can cause problems too.


Anyway with the creons my partner took 3-4 25k dosage ones with a snack and 5-6 with a main meal. But that was what worked for him, everyone is different.


Hope that helps,

Rob

X

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Hi Rob


Thank you for replying and the support.


She takes the creon 10 mins before a snack and meal.


When I say snack and meals this is a rare day. She literally eats a mouth full.


Gemma

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I had exactly this issue for best part of a year. I was also taking Creon and imodium but still experiencing frequent (several times a day) debilitating diarrhoea and inability to eat much. The thing that has made a huge difference for me is Buscopan. It was prescribed during a hospital stay a month ago and I take 2 with each meal. Since then I've gained a stone in weight and my appetite and ability to eat (and retain) a much wider range of foods have improved hugely. Apparently (so I was told) not only is Buscopan an antispasmodic, it also helps absorb excess secretions in the gut so what waste there is becomes much more solid.


Might be worth having a word with a healthcare provider to see if it could help your mum too.

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Hi

My partner has inoperable pancreatic cancer and is reliant on creon. He hates taking it and has recently opted to break open the capsules and sprinkle in yogurt. Anyway in relation to this post my pennysworth is to keep a food diary when digestion is awol. Keeping a record of the food plus noting the number of Creon taken helps us. We found out that taking Creon with very hot food or liquids may have affected the effectiveness of the Creon. So we let things cool down a little and avoid mugs of tea at mealtimes -have it afterwards instead. It’s a minefield out there and as we all know everyone responds to foods in different ways.

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PCUK Nurse Nicola

Hi Gemma,


Its Nicci here, one of the nurses that works on the support line here at Pancreatic Cancer UK. Thanks for your post, although I am so sorry that circumstances have led you to us. I am pleased to see that you have already had some helpful replies.

I am so sorry to hear that your Mum has been struggling with such awful diarrhoea Gemma. I am going to email you separately with regards to this, I do hope that’s okay.


Kind Regards


Nicci


Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

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