Hi Newbie Type 3c

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cupcakequeen71

cupcakequeen71

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Type 3c
Hi thanks for the add. I'm a newly diabetic type 3c thanks to having a total pancreatectomy with auto islet transplant due to 36 years of chronic pancreatitis due to gene mutation.

Anyone else a 3c diabetic?

Has anyone else had a tpiat? Did you have many islets harvested. They didn't get many from me due to the damage done over the years to my pancreas.

It's very much a steep learning curve. I'm looking forward to gaining info from reading the threads

Hope everyone has a level day
 
Hi and welcome.

We have quite a few Type 3c diabetics who are regular members of the forum and at least one or two full pancreatectomy but I don't think we have had any with islet transplants so that is really interesting and look forward to hearing more about that. It sounds like they transplanted your own islets, so presumably you don't have to take the antirejection drugs? I hope you don't mind me asking but where do they transplant them to? Into your liver perhaps?
How long ago was your surgery and how are you managing your diabetes. I am assuming you need Creon for digestion but are you also needing diabetes medication or are your transplanted islets managing to produce enough insulin or are you needing to inject and if so which insulins.
I am sure @Proud to be erratic will be very interested in your situation as he has had a total pancy removal and @soupdragon and @martindt1606 and @eggyg are all 3cs with varying levels of damage and bits removed I believe.
 
Hi, I don't mind questions at all. Its a good thing to share information.
My surgery was 14 hours. I was in hospital for 2 weeks. My own islets were injected into my liver via the portal vein so no need for anti rejection meds. I was on creon before the surgery as my faecal elastase was 3. So my pancreas was very broken.
I'm on insulin, currently 12 units of levomir in the morning with 1.5units per 10g carbs before breakfast of novarapid and 2 units if I go over 18 on my libre.
My surgery was on 7th October so still very early days. Because of the state of my pancreas they weren't able to harvest many islet cells, it'll be around 6 months to a year before we fully know how successful the surgery was from a diabetes pov. However with the gene mutation I had a 40 x more likely to develop pancreatic cancer. So with that taken away, along with the constant chronic pain and fatigue from the pancreatitis it's already a success in my eyes.
 
Thanks so much for sharing. That is really fascinating. Hope you are recovering well from what must have been very major surgery! Definitely better gone by the sound of it. Pancreatitis is excruciating.
Do you just inject Levemir once a day (it is generally used as a split dose morning and evening, not only to get full coverage but also to provide flexibility and is the NR just for breakfast or do you use it for all meals? Have you just started on insulin since the surgery or were you on it before?
Do you have Libre or other CGM monitor?
 
Hi, yes I'm just using levemir once a day at the moment, I was using it twice but found I'd go too low at night, I was generally staying around 3 and only getting to 5 with glucose tabs and food. And at the moment NR is just breakfast. I think because the islet cells are so unknown at the moment it's taken in baby steps.
I'm recovering well although it's very hard going.
 
Yes, sometimes I don't need any Levemir at night if I have done a lot of activity on consecutive days. I imagine it is a huge learning curve, not just for you but also for your team as this is pretty cutting edge I believe. Diabetes is very individual and unpredictable at times under normal circumstances but obviously this takes it to a new level, especially as the surgery will have disrupted your digestive system too, but then I suppose it was already disrupted by the pancreatitis. I hope you have a Constant Glucose Monitoring system (CGM) like Libre to help you keep track of your levels.

Has anyone mentioned scar tissue therapy to you? One of the issues this sort of surgery throws up later in life is adhesions and apparently there are new therapies including massage which can help to prevent them developing particularly if adopted early enough. It may be too early yet for you, but worth doing some research as a number of our Type3c s seem to have significant issues with adhesions causing blockages down the line, so any option for prevention is worth looking into.
 
cupcakequeen71 said:
Hi thanks for the add. I'm a newly diabetic type 3c thanks to having a total pancreatectomy with auto islet transplant due to 36 years of chronic pancreatitis due to gene mutation.

Anyone else a 3c diabetic?

Has anyone else had a tpiat? Did you have many islets harvested. They didn't get many from me due to the damage done over the years to my pancreas.

It's very much a steep learning curve. I'm looking forward to gaining info from reading the threads

Hope everyone has a level day
Click to expand...
Hi had my total pancreatectomy back in 2010 - unfortunately no islet transplant. I'm therefore insulin dependent and lived as if i was a T1 until 2019 when metastasis in the liver (or treatment of the metastasis) removed any remaining glucagon response adding additional complications when blood glucose falling. I now have closed loop (Dexcom and Tandem) which has helped minimise the impact of overnight hypos.

A level day really isn't a possibility - a good day is to Stay In Range for longer than the clinic target.
 
martindt1606 said:
Hi had my total pancreatectomy back in 2010 - unfortunately no islet transplant. I'm therefore insulin dependent and lived as if i was a T1 until 2019 when metastasis in the liver (or treatment of the metastasis) removed any remaining glucagon response adding additional complications when blood glucose falling. I now have closed loop (Dexcom and Tandem) which has helped minimise the impact of overnight hypos.

A level day really isn't a possibility - a good day is to Stay In Range for longer than the clinic target.
Click to expand...
Wow!! You've been through the wars.. can I ask why you had your TP.
This is still so new and I'm hoping there's going to be enough islets that staying in range becomes alot easier
 
rebrascora said:
Yes, sometimes I don't need any Levemir at night if I have done a lot of activity on consecutive days. I imagine it is a huge learning curve, not just for you but also for your team as this is pretty cutting edge I believe. Diabetes is very individual and unpredictable at times under normal circumstances but obviously this takes it to a new level, especially as the surgery will have disrupted your digestive system too, but then I suppose it was already disrupted by the pancreatitis. I hope you have a Constant Glucose Monitoring system (CGM) like Libre to help you keep track of your levels.

Has anyone mentioned scar tissue therapy to you? One of the issues this sort of surgery throws up later in life is adhesions and apparently there are new therapies including massage which can help to prevent them developing particularly if adopted early enough. It may be too early yet for you, but worth doing some research as a number of our Type3c s seem to have significant issues with adhesions causing blockages down the line, so any option for prevention is worth looking into.
Click to expand...
I've never heard of scar tissue therapy, is this something that's available on the NHS or is it self funded? My team have never mentioned it, but I'm definitely going to look into it Thanks for the info
 
I think @zippyjojo (another Type 3c) may have more info on it and I am not sure if @Proud to be erratic may not also have mentioned it. I think there is some option within the NHS but very specialist, so may need to ask your consultant about it.
 
cupcakequeen71 said:
Wow!! You've been through the wars.. can I ask why you had your TP.
This is still so new and I'm hoping there's going to be enough islets that staying in range becomes alot easier
Click to expand...
I had / have Neuroendocrine Cancer of the pancreas.
The initial years were a challenge as the diabetic clinic had never had to deal with someone without a pancreas. Once we decided multiple daily injection (long and rapid insulin) were not reliable I was given a pump and had around 4 years of stability based on DAFNE rules. When the liver issues started the challenges started again but now have closed loop system and reasonable/liveable/acceptable(?) normality.
For future reference if the effectiveness of the islets drops, you should look to have a pathway to closed loop in your care plan.
 
Thank you, I'll do some reading so I know what to look out for. My gp diabetes team had never heard of 3c. I'm lucky I can get hold of the MDT where I had my surgery ( Leicester) quite easily. They monitor my Libre from there. I have no idea how well the islets will take, I can only try and stay hopeful but gain as much knowledge just in case it ends up effectively at TP
 
cupcakequeen71 said:
Thank you, I'll do some reading so I know what to look out for. My gp diabetes team had never heard of 3c. I'm lucky I can get hold of the MDT where I had my surgery ( Leicester) quite easily. They monitor my Libre from there. I have no idea how well the islets will take, I can only try and stay hopeful but gain as much knowledge just in case it ends up effectively at TP
Click to expand...
If you are not under a specialist diabetes clinic for your diabetes treatment then you should be. Your diabetes is way more complex than GP practice have the knowledge to deal with and provide support. If they have never even heard of Type 3c, then how can they hope to understand the complexities of it and it is, certainly in your case with a TP and islet transplant, way more complicated than your average Type 1 and we are mostly under the care of the specialist clinics. GP practice should only be dealing with standard Type 2s and any Type 1s who are confident they can manage without clinic support. In the latter situation, the patient should have become the expert in their diabetes management and the GP practice are basically just arranging blood tests and spotting if anything is obviously amiss with them and doing the required tests like BP and foot tickles etc.
 
Hi and welcome @cupcakequeen71 from another 3c.
My diabetes was caused by one severe episode of acute pancreatitis.
It is interesting to hear details of your islet transplant.
Hoping that you get some good support from a specialist diabetic team soon.
 
cupcakequeen71 said:
I'm being managed remotely by the diabetes team in Leicester where I had my surgery. I have the head of the team who I can call/ text anytime or my lead islet nurse on WhatsApp.
Click to expand...
That's good to hear.
 
Hi cupcakequeen,
Like Soupdragon another 3c due to an acute pancreatitis attack.Having chronic pancreatitis must be very debilitating and you have my full sympathy.
Anyway I am only diagnosed in August so pretty new to it but sone great advice and support on here and we are all here to care and share.
BW
 
Hi @cupcakequeen71,
I had a total pancreatectomy as my primary treatment for panc'y cancer and no islets captured for transplanting. Like yourself 14 days in hospital and after 3 months of surgery recovery at home I had adjuvant (precautionary) chemo - which I did not enjoy!

Nearly 4 yrs on I've got into a sort of workable routine. I do find I'm agreeing with @martindt1606 that level days are not frequent and so far I don't qualify for further tech, such as a pump; I manage my D too well (in the eyes of the clinicians) and achieve about 70% time in range - which is seen as v.g., so I'm ineligible for more tech. My short term goal is to convince my Endocrinology Team that I need a pump, to reduce my daily constant commitment to my D management.

I support @rebrascora's remark about scar tissue. It was on the list of risks that might arise from my surgery. But so was death and somehow all the other risks seemed unimportant. The external scar healed well; the internal surgery can (and did for me) create major internal tissue hardening. That led to my colon getting snagged, trapped and blocked after 28 months; I then needed emergency surgery directly on top of the beautifully healed original incision. This needed 3 weeks in hospital before I was allowed home. Scar tissue therapy can include a form of massage to keep that scarred zone soft and supple and (in hindsight) I wish I'd taken more notice of this "risk" and made sure this possibility was being fully monitored.

The Surgical report declared my procedure was pylorus preserving, so I deduce that minimal surgery was on the stomach itself; but of course some incision would have been needed to disconnect my panc'y and a certain amount of rearranged intestinal work would have occurred. After surgery healing and chemo disruption I was at 8 months still taking fixed doses of insulin as defined by my local hospital DSN - rather than carb counting and determining how much insulin was needed. Because that was leaving me on the high/low bg roller coaster (and I didn't get CGM for several more months) I realised that although I thought my DSN was actively managing me - in practice I was on my own either deeply hypo or ridiculously high, but rarely in between; so I learnt how to carb count and took my care into my hands, thereafter some bg management started to happen.

BUT I was still losing weight and had very poor bowel control. It became obvious to me that carb counting was of limited value if the carbs weren't being digested in an even and predictable manner. So I got my HPB surgical team (from a Hospital in a different County) to refer me to a Urologist in my own County and he systematically set about eliminating possible explanations before finally determining that I had an unusual bacterial infection and needed an unusual antibiotic. Once that problem was sorted carb counting made more sense in terms of seeing "cause and effect" - but still from just finger pricking. That bowel problem seems to be back recently and thus my bg management has declined in recent weeks. But at least I'm aware of what might be the cause and these days generally able to manage it! So we steadily learn and the early anxiety, fear etc does diminish - a lot.

DO ASK if something isn't clear, there is a huge depth of knowledge within the membership of this forum. There is a lot of detail behind the generic principles of insulin dependent diabetes AND that is really quite different from T2 diabetes treated by oral meds. Both have their complexities and there is not much similarity. About 10% of those with D are T1, almost 90% are T2 and the rest of us, altogether are less than 1%. As a T3c with no panc'y you (and I) are very rare. Your surgical team will have a great understanding of your diagnosis and your unique islet transplants circumstances. The vast majority of the rest of all Health Care Professionals (HCPs) simply don't know much about insulin dependency and won't have a clue about the significance of you, as a T3c and very unusually with absolutely no pancreas. They will be oblivious to the fact that you have absolutely no other pancreatic hormones and will sometimes make ludicrous assumptions or try to tell you to follow their protocols, even when those protocols can't apply to you. This aspect can be frustrating, but knowing this frustration can occur has allowed me to hold my own and resist.

I could go on, but won't. Welcome.
 
Hi @cupcakequeen71 I had a distal pancreatectomy, splenectomy & cholecystectomy 2 years ago last week. The scar tissue massage that people are referring to is called ScarWork and is a qualification by that name. If you Google it you will hopefully be able to find a local practitioner. It isn't, to my knowledge, available on the NHS but I haven't really looked as was just delighted to find someone close to me who does it. It feels strange, but great but they wouldn't be doing it to you yet as it's too soon after your surgery. I have a feeling that 6 months post op would be the earliest they would do it, but I might have made that up! I'm sure your mind is completely befuddled with everything that's been happening to you but you sound very switched on and I'm sure you will cope well and it's so great that you have such good access to your MDT etc - that will make things so much easier for you. There is a daily thread that lots of us go on called "7 Day Waking Average" which is basically a chat group where we all post our early morning readings but then go on to talk about anything and everything under the sun 🙂
 
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