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.

 

[martindt1606]

Hi @Nikki81 have you changed your Creon dosage since the Total Pancreatectomy? Over the previous 2 years your Pancreas may have been producing some pancreatic enzymes which is no longer the case post operation. The pancreas can produce over a million enzymes - you are taking in around 100,000 per snack at the moment. Another factor to bear in mind is that the surgery does involve significant "replumbing" which can take many months to settle down. Both of these could be playing a part but you should be keeping in contact with your consultant so that all possibilities are investigated.
Are you on Facebook? I'm in a group called Total pancreatectomy u.k its a small group (75 people) but there are half a dozen or so who have recently had a TP and have more recent experience than me.
Hope you start to see an improvement soon.

 

[Chris88]

I agree with most of what has been stated.
You could ask for food supplements as your weight is so low.
You might need to increase your Creon dose.
Your body will still be healing post surgery so malabsorption might be an issue.
Have you discussed continued weight loss with oncologist or dietitian?

 

[Nikki81]

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

Yes it is. I had improved significantly last year but now the steatorrhea is much worse.

 

[Nikki81]

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!

Thank you so much for replying.

I ’m keeping fat intake low cause I’m not sure what is causing my issues. I had a stricture so the pylorus was not preserved. I seem to have a combination of dumping and delayed gastric emptying which is baffling. Anything high in carbs or high GI dumps out - so I am unable to have protein drinks like fortisip as they have lactose and sugars. Other solid foods are slow to move through. I seem to have horrible issues with fodmaps so it rules out a lot of food. I’m taking a course of Rifaximin in case it’s SIBO. I suddenly developed bad nausea so I’m on a prokinetic as well - metoclopramide.

Chemo is adjuvant as they found 6 lymph nodes affected of 43 they removed. It will be 6 months of chemo. The tumour was 4cm but could not be seen on the CT. I’m going with gemcitabine and abracxane cause they don’t think I’ll handle folfironix.

My dieticians are stumped. They are not sure what to do. I’ve increased Creon further and also having some extra 40 and 60 mins after my meals in case the food is still sitting around.

I recognize it’s early days post surgery but with chemo coming up next week I’m so scared that I’m too weak to cope.

 

[Nikki81]

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.

Thank you for your input. I’m having issues with protein drinks - it’s causing dumping. All liquid, carbs and high GI foods are moving through quickly causing pain. I was on fortisip for 2 years but post surgery not tolerating any drinks - we tried many in hospital.

I will check with my doctors about the blood tests. Thank you.

 

[Nikki81]

Hi @Nikki81 have you changed your Creon dosage since the Total Pancreatectomy? Over the previous 2 years your Pancreas may have been producing some pancreatic enzymes which is no longer the case post operation. The pancreas can produce over a million enzymes - you are taking in around 100,000 per snack at the moment. Another factor to bear in mind is that the surgery does involve significant "replumbing" which can take many months to settle down. Both of these could be playing a part but you should be keeping in contact with your consultant so that all possibilities are investigated.
Are you on Facebook? I'm in a group called Total pancreatectomy u.k its a small group (75 people) but there are half a dozen or so who have recently had a TP and have more recent experience than me.
Hope you start to see an improvement soon.

Thank you for replying.

I’ve increased my creon by a couple of capsules per meal. It is very early days and I’m hoping it settles but I’ve lost weight at an alarming rate and my partner and I are struggling to come up with solutions. I’m not on FB but perhaps I could create an account. Thank you 🙂

 

[Nikki81]

I agree with most of what has been stated.
You could ask for food supplements as your weight is so low.
You might need to increase your Creon dose.
Your body will still be healing post surgery so malabsorption might be an issue.
Have you discussed continued weight loss with oncologist or dietitian?

Thanks for your input. Yes I’ve talked to a number of specialists and dieticians. They are a bit stumped as I’m having both dumping and delayed emptying depending on what I eat. Plus the issue with fodmaps, food intolerances and possibly sibo. So no one really knows what’s causing the malabsorption. I was sort of ok initially but something changed a couple if weeks ago and now I’m having severe malabsorption. It’s baffling.

 

[Proud to be erratic]

@Nikki81, thank you for all this extra detail. I feel dreadful for you (and your partner) - with so much going on, yet so little control over such basic things. I hope you are getting some sort of reassurance from knowing that various Specialists are at least on your case. I also hope that one of them can provide you with a viable resolution to this.

Do please keep us updated; if nothing else there are people here who understand how debilitating, worrying and stressful this must be for you.

 

[Chris88]

Hi again,
So sorry to hear of your struggles.
I too had a total pancreatectomy due to cancer but I was able to tolerate ( if that is the right term) Folforinox.
Your nutrient malabsorption is extreme. I wonder if parenteral feeding has been considered as this would bypass your gastrointestinal system. It is not appropriate for all but is certainly worth asking dietitian about.
Good luck and best wishes
Chris

 

[Nikki81]

Hi again,
So sorry to hear of your struggles.
I too had a total pancreatectomy due to cancer but I was able to tolerate ( if that is the right term) Folforinox.
Your nutrient malabsorption is extreme. I wonder if parenteral feeding has been considered as this would bypass your gastrointestinal system. It is not appropriate for all but is certainly worth asking dietitian about.
Good luck and best wishes
Chris

Thank you. Yes the malabsorption does seem extreme and it’s exhausting. I can’t seem to tolerate yeast and so many other foods since I was diagnosed with EPI 2 years ago.

I was on TPN (parenteral) feeds for 3 weeks in hospital before and after surgery. But they had to stop it as my specialists says it’s not a viable option for me as it damages the liver. We also tried the tube but it had issues as well. In any case I want to avoid tube feeds as I am told it supresses appetite and takes longer for the stomach to readjust to real food so we’re left with not many options at this stage.

 

[Nikki81]

@Nikki81, thank you for all this extra detail. I feel dreadful for you (and your partner) - with so much going on, yet so little control over such basic things. I hope you are getting some sort of reassurance from knowing that various Specialists are at least on your case. I also hope that one of them can provide you with a viable resolution to this.

Do please keep us updated; if nothing else there are people here who understand how debilitating, worrying and stressful this must be for you.

Thank you 🙂 I appreciate the support.

 

[rebrascora]

Really sorry to hear of all the issues you are having with digesting food and it must be really worrying when you are under weight and continuing to lose more.

I know it isn't good nutrition but I as wondering if you could regularly chew jelly babies or other sweets, which would release glucose that can be absorbed through the cells inside your mouth, just as a means of getting extra calories into you slowly and steadily. It is what I do if I am dropping low when I have nausea and vomiting and can't keep anything down and the glucose does absorb through the mouth into the blood stream.

 

[sololite]

Hi @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

Hi @Nikki81 I am afraid I don't have any advice but can say I too lost a lot of weight and continued to do so for some weeks after the op which scared me until it gradually turned around and then slowly came back, taking 5 months to recover the 1 stone I lost. My diabetes went haywire for many months and only recently (2 years on from my op) feel I am starting to get more control. To keep my weight stable I am having to eat lots more fat and protein than I used to. My GP and diabetes team had little experience of our rarity but I was able to get support on nutrition from the GI team at the hospital that did the op which was helpful. Good luck with all your challenges and do ask anything you like. I recommend the FB group Total Pancrectomy U.K too, regards Chris

 

[Nikki81]

Hi @Nikki81 .

Hi @Nikki81 I am afraid I don't have any advice but can say I too lost a lot of weight and continued to do so for some weeks after the op which scared me until it gradually turned around and then slowly came back, taking 5 months to recover the 1 stone I lost. My diabetes went haywire for many months and only recently (2 years on from my op) feel I am starting to get more control. To keep my weight stable I am having to eat lots more fat and protein than I used to. My GP and diabetes team had little experience of our rarity but I was able to get support on nutrition from the GI team at the hospital that did the op which was helpful. Good luck with all your challenges and do ask anything you like. I recommend the FB group Total Pancrectomy U.K too, regards Chris

thank you for your reply. I’m trying my best. I’ve increased Creon to a ridiculously high amount for what I’m eating and hoping the course of antibiotics work. I seem to be struggling with fodmaps but trying to get by as there is nothing much left to eat. I’m hoping things turn around.

 

[martindt1606]

Thank you for replying.

I’ve increased my creon by a couple of capsules per meal. It is very early days and I’m hoping it settles but I’ve lost weight at an alarming rate and my partner and I are struggling to come up with solutions. I’m not on FB but perhaps I could create an account. Thank you 🙂

Hi , hope you are beginning to see some improvements.

If you decide to join FB, you should consider following Pancreatic Dietitian. I haven't met her but know of other TP's who have had consultations with her. She usually posts an article every couple of months which are always relevant. The attached is a copy of her latest post on Pancreatic Enzyme Insufficiency. I have my first appointment with a dietitian in 15 years next month and will be reviewing her earlier posts to ensure I have questions ready to make the most of the appointment time.

 

[Nikki81]

Hi , hope you are beginning to see some improvements.

If you decide to join FB, you should consider following Pancreatic Dietitian. I haven't met her but know of other TP's who have had consultations with her. She usually posts an article every couple of months which are always relevant. The attached is a copy of her latest post on Pancreatic Enzyme Insufficiency. I have my first appointment with a dietitian in 15 years next month and will be reviewing her earlier posts to ensure I have questions ready to make the most of the appointment time.

Thanks for the information. Sorry I forgot to mention that I live in Australia. I’ve got a couple of dieticians here who have been managing my condition over the past 2 years. We’ve had varying degrees of success but food intolerance issues remain unresolved. It’s been trial and error.