Repercussions of distal pancreatectomy

[Daf]

Hello all, I’m here because my specialist nurse suggested it. 3 years ago I had just my tail removed after an incidental discovery of a cyst with a couple of cells in it. Since then I’ve had continuous problems with pain, nausea, constipation and sugars. Everything I’ve read tells me I’m one of the extremely lucky ones and that I should barely notice any  symptoms after this long. But it’s rubbish. My diet is appropriate, I haven’t an idea how much creon I should be taking but I’ve only once in 3 years had diarrhoea. I’m lucky to pass anything twice a week. Does anyone have any anecdotal stories about their post surgical journey? It’s really getting me down

[PCUK Ellie]

Hi Daf, thanks for sharing your situation here. Dealing with those symptoms daily must be frustrating and I can understand why it's getting you down. Pain, nausea and constipation can be indicators of digestion problems caused by not having enough enzymes to break down the food you eat. You can find out more about how much you might need to be taking on our website. How much Creon are you taking at the moment?

 

I appreciate you're looking for anecdotal stories from other people who have been in your position, but in the meantime, I'd encourage you to give the Pancreatic Cancer UK Support Line a call. It's free and confidential - you'll get straight through to a specialist nurse who can give you more information about digestion, Creon and what might be behind the symptoms you've mentioned. You can call 0808 801 0707, or if you'd prefer you can get in touch by email. 

 

We also run a service called Side by Side which can connect you with a trained volunteer who has already had surgery for pancreatic cancer. If you're looking to chat to someone about their experiences, this might be a good option for you? If you're interested, you can mention it to a nurse on the Support Line and they'll take care of everything from there. 

 

I hope this is helpful Daf. Thanks again for sharing and please keep us posted if you'd like to.