Total Pancreatectomy Help

[Nikki81]

Hoping the experts on this forum can help me. I’m 7 weeks post total pancreatectomy and struggling. I’ve been an insulin dependent diabetic for 25 years and on Creon for 2 years. The surgery has gone well but recovery is challenging. I’ve lost 10kg and down to 37kg. I need to start chemo next week but I’m too weak. For some reason my Creon isn’t working. I take 2x PPI a day and taking 4-5 25k Creon with each snack (6 times a day and no more than 8g fat). I’m struggling with dumping syndrome post surgery and nothing seems to work. Does anyone have any advice?
Thanks.

@Proud to be erratic, @martindt1606, @eggyg, @Busdriver60

 

[everydayupsanddowns]

So sorry to hear how difficult you are finding things @Nikki81

@Proud to be erratic and @martindt1606 have both been living post total pancreatectomy for some years (and says he needs to take Creon in ‘industrial quantities’).

Hope they can offer you some suggestions and shared experiences.

Edit: Great! you’ve tagged them in too 🙂

 

[Proud to be erratic]

Hello @Nikki81, sorry to read about your plight. We exchanged lengthy posts back in Feb 23 and if those comments aren't helping today, I am slightly at a loss in suggesting much else. Some hasty (erratic?) thoughts are:

Is your current predicament noticeably different to your status in Feb '23?

Is there a particular reason for keeping your fat intake to below 8gms? If this is to you a stupid question from me, please bear in mind I arrived as T3c from Pancreatic Cancer, not from deteriorating pancreatitis; so I have no background of understanding, never mind managing, pancreatitis. My question is really me asking is your current diet a reasonable balanced diet for today? Is your reduced fat diet possibly unhelpful?

Did you in Feb 23 look further into the possibility of malabsorption then and perhaps is it recurring now?

Was your pancreatectomy recorded in your discharge surgical notes as "pylorus preserving". From Dr Google I have just gleaned:

Preservation of the pylorus in pancreaticoduodenectomy has been shown in retrospective studies to lead to a long-term improvement in gastrointestinal function, as indicated by more postoperative weight gain, fewer peptic ulcers, and less dumping.​

I'm not sure if this is actually about your Creon at all. But do you spread your capsules well across your 6x daily snacks.

Also would this total food intake be better coming in 3 main meals rather than 6 snacks? Are those snacks givng you sufficient respite in between? I recognise that 7 weeks is still early days post op and it will be exceedingly difficult, right now, for you to make sense of many aspects.

Is your planned chemo categorised as "adjuvant" ie precautionary? Mine was, even though I/3 of my pancy's lymph nodes were deemed cancerous; the surgical report suggested they had got everything out that needed taking out - hence precautionary chemo rather than essential.

Overall, I'm afraid that none of this from me feels overly helpful to you. At 37kg that really is light and must be very worrying for you. I had to take hi-build protein drinks after my op. I still have times when my body dumps on me (6 x spoilt days when I ran out of time and luck during 2024!) and I'm ultra aware of this before I venture out each day; but I'm retired and can generally choose how I manage each day!

 

[Standup]

Like Roland I came to this via cancer. I was told by the pancreatic dietitian to eat little and often. I initially found this quite hard to manage with the diabetes regime the hospital had put me on. However, once I realised I could adapt that the constant snacking got easier. I was also given a prescription of the protein drinks. They're pretty horrible but do the job. I was also told that it wasn't the end of the world if I had a junk food diet for a while. Need to be aware of the fat content in some because of the Creon (been struggling to get hold of it) but I have regular fish and chips and MacDonalds which helps. Eight months on I'm still losing weight albeit slower than before so it can take a while to recover.

I also have regular blood tests for malabsorption which you should ask about if you're not already having them. My oncologist said it quite unusual that I was being tested without a specialist asking for it. Might be you need some vitamin supplements as well which was the outcome for me.