Looking for information for new Type 3 diabetic please

[Merryterry]

Thanks, Jenny for putting that discussion to a full stop.

There are a few mistakes in the this particular thread, mainly from @Merryterry. Firstly, though Type 3c is treated with insulin just as T1, the big difference is needing to take Creon to digest your food. That makes a difference to the rate that the meal is digested, particularly fats. And if you want prevent a falling BG sending you into a hypo, don't forget to take Creon with your snack.

Which brings me on the comment that a side effect of Creon is diarrhoea. Actually the side effect of taking too much Creon is constipation. And the slightly hot anus, as though you'd' eaten a hot curry.

And getting diarrhoea after a fatty meal almost always means you haven't taken enough Creon.

There is no fixed dose of Creon. My packs of the 10,000 still have on the pharmacy label saying "Take 2 with food". I was taking three or four, occasionally 5 with food, so I now get supplied with two packs of 10,000, and a pack of 25,000. The right dose is the dose that stops you getting loose bowel motions. There are folk on the Pancreatitis forum who take more than 100,000 units of Creon in a day to achieve that. And no one on that forum has ever mentioned diarrhoea as a side effect of Creon.

And 3c is now more frequently seen than regular T1. The big change in recent years is that NICE guidelines for doctors is that all diabetes that is caused by pancreatic damage, i.e. 3c, should be treated with insulin as first line treatment, to stop doctors trying T2 treatment first. That was depressingly common, previously.

I'm like @sololite, I was T1 for 20 years before I developed chronic pancreatitis (autoimmune). My pancreas at a recent scan is basically a calcified lump. So I'm a reverse engineered 3c.

With respect, on the point of diarrhea not being a side effect of Creon, you are incorrect.

I have the Creon leaflet in front of me that, in the first Item in the side effects column, says Diarrhea!

Creon Oral: Uses, Side Effects, Interactions, Pictures, Warnings & Dosing - WebMD

Find patient medical information for Creon oral on WebMD including its uses, side effects and safety, interactions, pictures, warnings and user ratings.

www.webmd.com

 

[martindt1606]

I had a Whipple operation 5 weeks ago in which my Pancreas was removed to stop my pre-cancerous IPMN turning to cancer.

During my last visit to outpatients my surgeon mentioned I was now type 3 (previously I was Type 1 LADA) but I didn't follow it up as I was trying take everything else in.

I use Levemir/Novorapid/CREON. I'm seeing a lot more volatility/elevation in my blood sugar and have lost a shed load of weight.

Does anyone else have a similar experience who could point me at any resources on the Internet that can help me on this journey please?

Don't worry, I am also under the wing of my Diabetes nursing team but I am getting a sense that this is a rare thing and wanting to do my homework.

Thanks for helping.

Regards,

Chris

Chris this takes me back to 2010.....Following my Total Pancreatectomy I was referred back to the Diabetes Centre at my local hospital. They had never seen anyone without a pancreas and saw me as a challenge and learning opportunity. I was treated as a Type 1 starting of Lantus / Novorapid. As you are finding blood glucose control is volatile and having started on one Lantus before bed we quickly moved to two injections. When things refused to settle down (especially dawn phenomenon time) we repeated the process with levermir. At some stage during this time I also attended a DAFNE course with 10 Type 1 Diabetics and for the first time was able to discuss diabetes with long standing Type 1's who had probably committed more errors than I could ever dream of. Even with background knowledge of potential pitfalls and an understanding of carb counting the blood sugars remained volatile. As I was not getting on with the long acting insulin my consultant decided I should have a pump unfortunately she only had a budget for children. She did find a discretionary budget and managed to convince the powers that be to let me have the pump. The switch to fast acting only made a big difference to my control. If I could turn back time / start the journey again today I would have loved a CGM - In those early days I was finger pricking over 10 times a day and my fingers still hurt today (and I've had a CGM for 4 years). What is your Hypo Awareness like? Whilst I was using both long and short acting insulin I knew when I was low 3's but if I thought I was falling to Hypo I could find I was 16 plus not around 4 as anticipated....
How you getting on with the Creon? Getting this right is almost as bad as the insulin dosage and does need to be refined over time.

Pancreatic Cancer UK and Neuroendocrine Cancer UK both have sections on living without a pancreas.

 

[sololite]

Hi @martindt1606

Thanks for all that information. The pump sounds like a great thing for you. I will ask about suitability/viability for me.

Pre-op i never had a problem identifying when my BS was lowering towards hypo territory as i would get a consistent 'feeling' around about 6mmol. I experienced this just once since I came out of hospital and reacted to it. Of course I have Libre to instantly check which is very reassuring.

Regarding the CREON I am taking 4 per meal on the advice of my surgeon also intend taking with snacks on the rare occasion I have one. I hope my weight stabilises soon as those little capsules sometimes make me wretch.

At the moment I am waiting for everything to settle down - the op was only 5 weeks ago, I'm still in some discomfort and quickly feel full when eating. I'm a bit fearful for the future, especially will I recover my weight and strength enough to cycle and get into the great outdoors like I used to .

Hearing from you and others who are many years ahead of me reassures me when my thoughts start going down a black hole. Thank you for helping me.

PS. I've tried to thank everyone who responded to my thread and if I missed one of you I do apologise.

Regards,

Chris

 

[Proud to be erratic]

Regarding the CREON I am taking 4 per meal on the advice of my surgeon also intend taking with snacks on the rare occasion I have one. I hope my weight stabilises soon as those little capsules sometimes make me wretch.

Chris, Perhaps I've misunderstood what you have written above, so apologies if I have.

But the Creon, or an alternative Pancreatic Enzyme Replacement Therapy (PERT), is with you for the foreseeable future. Your pancreas is the primary source of digestive enzymes and you will ALWAYS need PERT of some sort - Creon seems to be the most commonly provided. Your saliva glands create a limited and quite specialised digestive enzymes which I depend on to deal with high glucose foods like Jelly Babies - which definitely works for me. Apart from this, most food will simply not get properly digested and your world as a T3c will become more than challenging!

If you are struggling with the Creon capsules then try Google to find the names of alternatives (there were 4 back in 2020, but I think I've read somewhere there are now only 3) and ask your GP to let you try an alternative named brand of PERT. But each is fairly similar in terms of capsules with granules inside.

At the moment I am waiting for everything to settle down - the op was only 5 weeks ago, I'm still in some discomfort and quickly feel full when eating. I'm a bit fearful for the future, especially will I recover my weight and strength enough to cycle and get into the great outdoors like I used to .

Yes, it's early days. I needed 3 months to recover from surgery and had to build up very steadily my physical fitness as well (for me) some confidence with MDI and A LOT of JBs before I could do very much at all. You've had very major surgery and I suggest don't underestimate how long your body is going to need to recover from this significant medical trauma. That said, I have certainly recovered enough now to resume my former activity levels; so the great outdoors will become available to you again.

Hearing from you and others who are many years ahead of me reassures me when my thoughts start going down a black hole. Thank you for helping me.

When I start feeling sorry for myself I remind myself that many people are simply not well enough, young enough or strong enough to go through this and I'm thankful that I am one of the survivors. That helps!?

 

[sololite]

Thanks @Proud to be erratic it certainly helps. I can see my quickly rattled off response could be read differently to my intention. I understand PERT is for life for me and like you I am hugely mindful of how lucky I am .

Regards

Chris

 

[Merryterry]

Chris, Perhaps I've misunderstood what you have written above, so apologies if I have.

But the Creon, or an alternative Pancreatic Enzyme Replacement Therapy (PERT), is with you for the foreseeable future. Your pancreas is the primary source of digestive enzymes and you will ALWAYS need PERT of some sort - Creon seems to be the most commonly provided. Your saliva glands create a limited and quite specialised digestive enzymes which I depend on to deal with high glucose foods like Jelly Babies - which definitely works for me. Apart from this, most food will simply not get properly digested and your world as a T3c will become more than challenging!

If you are struggling with the Creon capsules then try Google to find the names of alternatives (there were 4 back in 2020, but I think I've read somewhere there are now only 3) and ask your GP to let you try an alternative named brand of PERT. But each is fairly similar in terms of capsules with granules inside.

Yes, it's early days. I needed 3 months to recover from surgery and had to build up very steadily my physical fitness as well (for me) some confidence with MDI and A LOT of JBs before I could do very much at all. You've had very major surgery and I suggest don't underestimate how long your body is going to need to recover from this significant medical trauma. That said, I have certainly recovered enough now to resume my former activity levels; so the great outdoors will become available to you again.

When I start feeling sorry for myself I remind myself that many people are simply not well enough, young enough or strong enough to go through this and I'm thankful that I am one of the survivors. That helps!?

When I had what is now called a Whipples, it had a survival rate of 25%. so, like you, I am glad to be alive.

 

[martindt1606]

Hi @martindt1606

Thanks for all that information. The pump sounds like a great thing for you. I will ask about suitability/viability for me.

Pre-op i never had a problem identifying when my BS was lowering towards hypo territory as i would get a consistent 'feeling' around about 6mmol. I experienced this just once since I came out of hospital and reacted to it. Of course I have Libre to instantly check which is very reassuring.

Regarding the CREON I am taking 4 per meal on the advice of my surgeon also intend taking with snacks on the rare occasion I have one. I hope my weight stabilises soon as those little capsules sometimes make me wretch.

At the moment I am waiting for everything to settle down - the op was only 5 weeks ago, I'm still in some discomfort and quickly feel full when eating. I'm a bit fearful for the future, especially will I recover my weight and strength enough to cycle and get into the great outdoors like I used to .

Hearing from you and others who are many years ahead of me reassures me when my thoughts start going down a black hole. Thank you for helping me.

PS. I've tried to thank everyone who responded to my thread and if I missed one of you I do apologise.

Regards,

Chris

Chris sounds like we may have had different challenges post operation. I had been using Creon for 7 years following an earlier gall bladder operation and my challenge was to understand diabetes from zero background. Once I'd got my head round that, life was pretty normal - eating, work, exercise. Hope you get used to the capsules - I'm taking 16 per "fatty"meal, 12 per "non fatty" meal, and 4 with a flat white coffee. As with the blood sugar control still have extreme days resulting from the creon usage. Currently considering dropping Pasta as a meal option.

 

[Proud to be erratic]

When I had what is now called a Whipples, it had a survival rate of 25%. so, like you, I am glad to be alive.

@Merryterry and @sololite,

It was the best part of a year before I realised that there were 2 basic forms of a Whipple with total panc'y:
those where part or more of the stomach was also removed with the pancreas;
and those where the stomach was preserved - described on my surgical report as pylorus preserving;

I'd had constant problems with my bowel activity and once the Gastroenterologist got involved he drew my attention to the 'pylorus preserved' bit of my surgical narrative. I've been doing some research only this morning into how the procedure came to be called Whipples and that reminded me there were the 2 sorts. I think the story of how Whipple pioneered this is interesting, link attached.
https://columbiasurgery.org/news/2015/11/12/history-medicine-whipples-improvised-breakthrough

I can imagine that those folks unlucky enough to also have part of their stomach removed could have additional digestion problems. I recall at my first consult, the Consultant drawing a simple generic sketch of what might be cut and the consequent rearrangement of my digestive bits - but didn't really take on board then the more subtle possibilities. My brother was, at that first diagnosis, a T2 with both legs removed and my instant concern was principally that I didn't want any surgery that could make me diabetic and thus with the potential to become like my brother. This still lurks in my mind, somewhat irrationally, I know.

 

[Proud to be erratic]

Currently considering dropping Pasta as a meal option.

I also struggle with getting pasta right in my carb counting and timings. I know that pasta meals frequently don't "work" for me.

But I'm not diligent enough in keeping records of each pasta meal and the circumstances - which can be quite different. We sometimes have fairly plain pasta with a basic sauce, such as pesto; and sometimes the pasta is within a rich and high fat lasagne. My perception (but not accurately recorded) is of subsequent unpredictable BG response either lows needing extra carbs or overnight highs, needing an insulin correction. I generally prebolus c.15 mins before eating - but even that process is not totally consistent. I invariably duck this menu choice when eating out.

Like yourself @martindt1606, dropping pasts is being considered - but we have significant stocks of dry pasta to be consumed and visiting grandchildren relish my wife's homemade lasagne dishes. And I am trying to fit in with everyday events, rather than being different. So some intellectual wrestling is ongoing!

 

[sololite]

I also struggle with getting pasta right in my carb counting and timings. I know that pasta meals frequently don't "work" for me.

But I'm not diligent enough in keeping records of each pasta meal and the circumstances - which can be quite different. We sometimes have fairly plain pasta with a basic sauce, such as pesto; and sometimes the pasta is within a rich and high fat lasagne. My perception (but not accurately recorded) is of subsequent unpredictable BG response either lows needing extra carbs or overnight highs, needing an insulin correction. I generally prebolus c.15 mins before eating - but even that process is not totally consistent. I invariably duck this menu choice when eating out.

Like yourself @martindt1606, dropping pasts is being considered - but we have significant stocks of dry pasta to be consumed and visiting grandchildren relish my wife's homemade lasagne dishes. And I am trying to fit in with everyday events, rather than being different. So some intellectual wrestling is ongoing!

Really sorry to hear about your brother.

I too have the sketch my surgeon did when I first met him. I didn't know whether to laugh or cry when he drew it out.

I had total Pancrectomy but the release paper only described it as Spleen preserving Pancrectomy. I was mighty relieved to find I still had a spleen when he dropped by after the operation, I didn't know it was a candidate for removal!

Pasta is also a no no for me along with rice and bread, so eat them sparingly or make sure I go for a cycle or long walk afterwards.

@Proud to binterested @martindt1606

I'm interested to know how you arrived at your CREON dosage please? Did you start with a lower figure and then increase until you started to gain weight? Or did you increase until you stopped having to run to the loo all time? It's a bit personal so please PM me if you prefer. For my part everything is working normally on 4 per meal but I've no idea if I am absorbing food as I should.

Regards,

Chris

 

[Proud to be erratic]

I'm interested to know how you arrived at your CREON dosage please? Did you start with a lower figure and then increase until you started to gain weight? Or did you increase until you stopped having to run to the loo all time? It's a bit personal so please PM me if you prefer. For my part everything is working normally on 4 per meal but I've no idea if I am absorbing food as I should.

Regards,

Chris

Chris, I don't exactly remember what my starring doses were - but initially the Macmillan dietician gently encouraged me during the first 8 months post op to increase my Creon until my output was better. Then I got signed off from active Oncology and thus Macmillan care (chemo ended) and just Onc'y monitoring with 3 monthly scans (now 6 monthly). But I was still in trouble. As I previously said my BG was seriously erratic and I had no idea about what I should be doing to steady things up.

About a year ago I arrived at my own 'formula' of 1 capsule for every 10 gm of carbs - as a guideline. I knew that this was not reconcilable with the need for extra Creon for fatty foods, but in practice I was consuming loads of butter, oil and cream with any meal, to keep my weight stable. So my very crude 1: 10 gave me a hasty starter for any meal. If the fat content was noticeably higher then I'd add a capsule or 2. Always one capsule (25k) with a frothy coffee (which always has cream) and a 2nd is a chocolate bisc or fatty cookie; don't bother with the 2nd if it's a plain bisc with coffee.

Since the bacterial overgrowth has been controlled that works for me, but I'm now just exploring small reductions - just experimenting really. I spread all capsules across the meal. Anyway this is still work in progress.

I used to love a rare steak, but its clear I simply struggle to get that digested and get considerable indigestion all night. So even after trying extra Creon with steak, I've now just stopped choosing rare steaks. We now always try to slow cook and / or tenderise meats like steak- which turns out to not only suit my digestion, but often adds extra flavour and enjoyment of such meals. So win/win for me.

I still sometimes get explosive and urgent days and have not really found a cause, but is much more manageable. I'm in remission from Ulcerative Colitis (UC), since c.2005 and I sometimes think my bad days feel like former UC times; but those episodes would last longer.

I can certainly relate explosive days to poorer BG control days. But not always the other way round, ie some poorer BG days have no apparent reason at all. Reading within this forum that seems to be the consequence of D just being contradictory and confusing.

I suspect none of us have any certainty that all food is being well digested and well metabolised, other than trips to the toilet + observation - along with reasonable visible carb / BG behaviour - visible thanks to CGM. I have the Diabox app on my android phone capturing real-time Libre sensor output, without the need to scan. This makes visibility and monitoring so very much better and I can imagine really terrific for long bike rides.

 

[martindt1606]

I'm interested to know how you arrived at your CREON dosage please? Did you start with a lower figure and then increase until you started to gain weight? Or did you increase until you stopped having to run to the loo all time? It's a bit personal so please PM me if you prefer. For my part everything is working normally on 4 per meal but I've no idea if I am absorbing food as I should.

Hi Chris,

I also had a spleen preserving TP, also didn't know it was an option pre-operation however I wasn't having a TP until 6 hours before I went into theatre. Up until then the surgeon was talking about just removing the tumours.

I started with CREON in 2003 (post gal bladder removal), I've always taken with water and always spread the capsules throughout the meal. I've never had pancreatic or stomach pain or suffered from Dumping Syndrome. Having done DAFNE (for the insulin management) I pretty much eat what i want. There are a couple of things I have never controlled with CREON - Beef and Roast Pork (processed pork eg Gammon / Sausage no problem) also don't have a problem with other red meat eg Venison.

I think when I started in 2003 i started on 4 per meal but was told to take an extra 2 for meals with a high fat content and with snacks. I was also advised to keep a diary / log (meals and loo) so that I could identify if I needed more (actually turned out to be good practice for 7 years later when i had to do similar for blood glucose management after the TP).

The period between the two operations was the most challenging with frequency, quality of output, and also smell. In the first 2-3 years the consultant remained interested and we quickly doubled the dosage. By the time of the TP I was up to 10 CREON as a baseline per meal. In those days it was an easy recognition to change dosage as a period of stability would end with recognisable consequences.

Since the TP things seem to have been more stable - I guess not having a pancreas / damaged pancreas also playing a part in the process helps. My base dosage is 16 CREON and this gives me a "normality" that I can accept / live with - once a day, good quantity, solidish but not firm, medium to dark colour. The hospital seem OK with this and if this "norm" is lost for a week i will add 2 additional CREON per meal. Since 2010 there have been 3 such increases. In addition I will review individual bad days and make adjustments for future similar meals. For example I'm currently having issues (last 6 months) with Home Made Pizza, Home Made Lasagne (sheets), and Maccaroni Cheese. I had 22 CREON the last time i had Mac & Cheese and still not happy with the following day. May just cut it from the menu. I've had a Crohns Test as the team thought this may be a reason for the sudden change but that came back negative.

You cannot take too many Creon as the body only utilises what it needs. It may be possible for your blood glucose levels to highlight how well you are absorbing food. For example if you start noticing a pattern of hypos after certain food it may be that you need more Creon. Not sure this is a proven fact but 2 examples - the recent Mac & Cheese issues also resulted in lower post meal blood sugars than expected (didn't Hypo thanks to CGM), and way back in 2011 when I was out for the day and realised i had forgotten my Creon. I bolused as normal and very quickly needed to take corrective action (luckily we were in a shopping centre not the countryside....).

Hope this helps

 

[martindt1606]

I used to love a rare steak

I always thought that was my little oddity. Can't remember the last time I had steak

 

[dbo]

Hi, had a non pylorus sparing whipples in 1976, for a genetic/familial pancreatitus. Lost 4 stone initially and was put onto a starvation diet initially as no one had dealt with this before. It has been a long road, with lots of laughter and support along the way. I stopped creon after 4 yes due to increase in diarrhoea and excessive nausea, wonderful since then. The thought was as my pancreas had never functioned correctly, was able to cope without. However, full cream has its challenges. Just wanted to say I have had wonderful support from DSN and have a closed loop system, which does have its challenges due to needing a different approach to T1. Have not pushed for a T3c label due to impact on travel insurance! It has been my life and has definitely strengthened my sense of humour. Well done to all x

 

[Proud to be erratic]

Hi, had a non pylorus sparing whipples in 1976, for a genetic/familial pancreatitus. Lost 4 stone initially and was put onto a starvation diet initially as no one had dealt with this before. It has been a long road, with lots of laughter and support along the way. I stopped creon after 4 yes due to increase in diarrhoea and excessive nausea, wonderful since then. The thought was as my pancreas had never functioned correctly, was able to cope without. However, full cream has its challenges. Just wanted to say I have had wonderful support from DSN and have a closed loop system, which does have its challenges due to needing a different approach to T1. Have not pushed for a T3c label due to impact on travel insurance! It has been my life and has definitely strengthened my sense of humour. Well done to all x

Hello @dbo, welcome to the forum and the T3c discussion team,

Your story is fascinating and reinforcing the fundamental proposal that we diabetic folks are all different. Seems pretty extraordinary that you didn't and still don't need Creon - I can't help wondering how you create enough digestive enzymes; but the body's way of creating alternative solutions to medical matters is, quite frankly, just amazing. But you have perhaps some dietary solutions that you've found over the last 45 years, or more that have worked for you.

I'm curious and interested about why you need a different approach to T1 for your closed loop. I'm not challenging that - just wondering what you found to be different.

 

[dbo]

Thanks, the difference mainly is extreme insulin sensitivity, need very little to maintain a good control.

 

[rebrascora]

Just out of curiosity.... Is it possible to have a Whipple's procedure that just removes part of the pancreas rather than the whole lot? It was my initial impression that a Whipple's was just part removal and the patient may be left with enough pancreas to function without exogenous insulin, at least short or perhaps longer term and also digestive enzymes, but that there would eventually be gradual necrotizing of the remaining organ, leading to a need for insulin and or Creon.
I should say that I have not studdied the subject in any depth at all and as a TYpe 1 I am pretty ignorant of the whole subject, it was just an impression I got when I first heard mention of a Whipple's surgery. It also seems that the procedure can result in partial or full removal of other organs like spleen and duodenum, so I guess there will be variation on how much pancreas is removed too.

 

[dbo]

I had a partial first along with splenectomy, followed by total, also partial gastrectomy, duodenectomy as well. Makes you value what is left

 

[Proud to be erratic]

Just out of curiosity.... Is it possible to have a Whipple's procedure that just removes part of the pancreas rather than the whole lot? It was my initial impression that a Whipple's was just part removal and the patient may be left with enough pancreas to function without insulin, at least short or perhaps longer term and also digestive enzymes, but that there would eventually be gradual necrotizing of the remaining organ, leading to a need for insulin and or Creon.
I should say that I have not studdied the subject in any depth at all and as a TYpe 1 I am pretty ignorant of the whole subject, it was just an impression I got when I first heard mention of a Whipple's surgery. It also seems that the procedure can result in partial or full removal of other organs like spleen and duodenum, so I guess there will be variation on how much pancreas is removed too.

As I understand it: Whipples procedure can be partial or total pancreatectomy and can be pylorus preserving, or not.

We have forum members with their spleens removed and / or duodenum - but I'm not sure if the duodenum is actually within the pylorus region, or just outside! But there is a Whipples variant based around pancreaticoduodenectomy (partial or total). Also there are variants where the pylorus is partially or totally removed, along with a resection into the pylorus (presumably as part of "rearranged internal plumbing" after surgical variants in this region. That is now stretching my understanding! We also have at least one member still on Metformin, despite their partial panc'y. These differences are all part of why I see T3c as a little more than a different form of T1; lots of variants affecting digestion and metabolism.