New Type 1 after Acute Necrotic Pancreatitis

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JBB70

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Hi all,
I am recovering from Acute necrotic pancreatitis which has left me with part of my pancreas dead and Type 1,
I am currently being fed by a nose tube so all my insulin calculations are based around the 12 hours my feed is being pumped in to me.
I currently have very little oral food intake as i’m struggling to swallow anything solid because of the tube - i feel like i’m choking.
I also don’t feel particularly hungry as the feed is 100% of my daily needs, but I need to try and eat more so that I can gradually lower the feed quantity.

Does anybody have any experience with this and able to give any advice?

I currently only know how to control my diabetes on the feed and get very overwhelmed at times worrying about how i’m going to manage post feed tube.

I can’t lose weight as I need to recover so I can safely be operated on to remove my gallbladder, which is what started off the pancreatitis,

I would be very grateful for any advice and your support x
 
Welcome @JBB70 🙂 Sorry to hear you’re ill and in hospital. We have a number of members here who have Type 3c diabetes, which is what it sounds like you have:


I believe @Wendal and @soupdragon had pancreatitis, amongst others, so hopefully they’ll have some suggestions. Have you been given any idea of when the tube will be removed?
 
Welcome to the forum @JBB70

Sorry to hear about the difficulties you are having with your feeding tube. I can’t remember many of our T3cs mentioning having had one, but hopefully any that have will be along to share their experiences.

Best wishes for a speedy recovery, and hope the gallbladder op can proceed in a timely fashion,
 
Welcome also from me @eeva, EDITED to be for @JBB70, not @eeva. So stupid of me, Apologies!

I had the full works after my surgery in 2020, total pancreatectomy, including the feeding nose tube; I'd forgotten that bit ... right nuisance; it was a little too short and prevented me from fully raising my head! I immediately felt more human after that got removed. I think at one stage there were 15+ tubes coming or going post op and I made it my daily challenge to pester any medic who passed by to take another tube away!

I can't answer all your questions or fully reassure you - but I'm walking proof that you can get through the process and have a great life after the pancreatectomy. Yes, there is a lot of adjustment needed in the short term and loads of totally unexpected things to learn about, including managing whatever insulin is needed; I was discharged as if T1, but am unquestionably actually T3c and wholly insulin dependent (with MDI = Multiple Daily Injections of 2 types of insulin). Actually the insulin injecting is probably the easiest bit of it all and in itself is very minor.

The preparation and monitoring of your Blood Glucose is a bit more demanding - but definitely doable; but there is loads of help both from the NHS with prescribed equipment such as a Continuous Glucose Monitor (CGM) and centuries of accumulated experience here on this Forum to tell you the tips and tricks that each one of us have found works (sometimes almost uniquely) for us.

So my advice is make the most of just having hospital time to recover from a massive trauma that your body has endured with the Surgery. Have pencil and paper handy to create a list of questions, so when the daily Surgical Team come past you on their rounds you can remember the questions (and keep them on their toes!). Somehow "don't worry" - it may feel hugely daunting right now but things will drop into place and make sense, albeit sometimes more gradually than you would wish. Ask any questions from this Forum; members have patience in explaining what we can and NO question is stupid. Good luck, let us know how you are doing.
 
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Welcome @JBB70 🙂 Sorry to hear you’re ill and in hospital. We have a number of members here who have Type 3c diabetes, which is what it sounds like you have:


I believe @Wendal and @soupdragon had pancreatitis, amongst others, so hopefully they’ll have some suggestions. Have you been given any idea of when the tube will be removed?
Oh thank you for that information, I assumed I was tupe 1 because I am on insulin.
I was meant to have my first visit with the dianetic nurse on Wednesday but had to cancel it because of a 3 night bonus stay in hospital

I am getting a libra 2, in fact I have it, but waiting for my new appointment on Wednesday to be shown how to fit it.

Is there anything i should ask at this appointment?

I’m also prescribed pancreax powder, but my chemist can’t get hold of it (neither could the hospital pharmacy) and I know there is a shortage of creon.
I must remember to mention that when i’m there.

I have so many medd and other things on prescription now its hard to get my head around!
 
Hi JBB,
So sorry to hear of your current plight and wish you all the best and the most important bit is to get through your current difficulties as smoothly and quickly as possible and then you will be in a much better position regarding your post hospital stay diabetes management.
First let me assure you you will get through it and we will try and support you every step of the way building on our own knowledge and experiences although it is only the medical professionals who can give you specific advice.
I too had acute pancreatitis with significant necrosis and a hospital stay but I did not spend time in ICU or had feeding tubes inserted.
I developed a pseudocyst and eventually they took my gall bladder out some 10 weeks after my attack when I had sufficiently recovered.
Sounds very much like your diabetes is Type 3c so an insulin deficiency due to pancreatic damage and it is important to recognise the differences between that and the diagnosis of Type 1 so that is worth establishing.
Folk can develop diabetes after an acute pancreatitis attack but normally there will be quite a gap between the two events ( so in my case 16 months) but again will be dependent on severity of the attack and in particular the location of the necrosis so if it occurred in the part of the pancreas where the Beta cells are located.
Anyway will leave it for now and comment again but very best wishes for the future
 
No problem @JBB70 Type 3c is often grouped with Type 1. The difference is that Type 1 is an auto-immune condition, where the immune system mistakenly attacks and destroys the crucial insulin-producing cells in the pancreas.

For your nurse appointment, I’d start a list now of things you want to ask. You can then add to it as you think of things. What insulins are you taking? I know nothing about tube-feeding so I’m not sure what would be best to ask.

The Libre is simply to attach. Don’t worry about it. One thing I would sayid that it has a Time in Range, showing the ideal blood sugar range and how long you spend in it. Don’t worry about the stats for that. Your priority is staying safe - so avoiding hypos (lows) and also very high levels. Nobody is expecting perfection and, indeed, perfection is impossible, even for those who’ve had diabetes a long time.

Re enzyme supply issues:

 
Welcome also from me @eeva, EDITED to be for @JJB70, not @eeva. So stupid of me, Apologies!

I had the full works after my surgery in 2020, total pancreatectomy, including the feeding nose tube; I'd forgotten that bit ... right nuisance; it was a little too short and prevented me from fully raising my head! I immediately felt more human after that got removed. I think at one stage there were 15+ tubes coming or going post op and I made it my daily challenge to pester any medic who passed by to take another tube away!

I can't answer all your questions or fully reassure you - but I'm walking proof that you can get through the process and have a great life after the pancreatectomy. Yes, there is a lot of adjustment needed in the short term and loads of totally unexpected things to learn about, including managing whatever insulin is needed; I was discharged as if T1, but am unquestionably actually T3c and wholly insulin dependent (with MDI = Multiple Daily Injections of 2 types of insulin). Actually the insulin injecting is probably the easiest bit of it all and in itself is very minor.

The preparation and monitoring of your Blood Glucose is a bit more demanding - but definitely doable; but there is loads of help both from the NHS with prescribed equipment such as a Continuous Glucose Monitor (CGM) and centuries of accumulated experience here on this Forum to tell you the tips and tricks that each one of us have found works (sometimes almost uniquely) for us.

So my advice is make the most of just having hospital time to recover from a massive trauma that your body has endured with the Surgery. Have pencil and paper handy to create a list of questions, so when the daily Surgical Team come past you on their rounds you can remember the questions (and keep them on their toes!). Somehow "don't worry" - it may feel hugely daunting right now but things will drop into place and make sense, albeit sometimes more gradually than you would wish. Ask any questions from this Forum; members have patience in explaining what we can and NO question is stupid. Good luck, let us know how you are doing.
Thank you, you made me cry - so emotional at the moment!

I haven’t had my pancreas removed - its still there, damaged but stable, and waiting to see what the next step
I was told the damaged part could turn to jelly and be absorbed in to my body, or it could turn in to a cyst - fingers crossed for the jelly!!!

I’m actually at home , after 6 weeks I couldn’t take any more of hospital life on the a&e surgical ward.

I think I might have a touch of PTSD after my really bad day where I nearly was taken to ICU, but somehow managed to pull round.
Seeing 2 other people treated on the ward like that brought it all back to me, and I couldn’t bare to see it all again.
Lack of sleep was the straw that broke the camels back for me though and I pestered them to come home.

I am being cared for remotely by the Freeman hospital too, so waiting to see what happens next.

I’ve just had a 3 nighter in hospital because of a different pain, and spoke to the dietician about reducing my feed, but they don’t think its the right thing to do yet.

Thanks for your support x
 
PS have you been prescribed the protein drink supplements I have forgotten what they are called but they were a good way of getting the some of the necessary dietary requirements to help you retain your strength.
 
PS just saw you mention the Freeman so presume you are up in the NE.
I am an exiled Geordie but living many miles away now.
 
No problem @JBB70 Type 3c is often grouped with Type 1. The difference is that Type 1 is an auto-immune condition, where the immune system mistakenly attacks and destroys the crucial insulin-producing cells in the pancreas.

For your nurse appointment, I’d start a list now of things you want to ask. You can then add to it as you think of things. What insulins are you taking? I know nothing about tube-feeding so I’m not sure what would be best to ask.

The Libre is simply to attach. Don’t worry about it. One thing I would sayid that it has a Time in Range, showing the ideal blood sugar range and how long you spend in it. Don’t worry about the stats for that. Your priority is staying safe - so avoiding hypos (lows) and also very high levels. Nobody is expecting perfection and, indeed, perfection is impossible, even for those who’ve had diabetes a long time.
Thank you, my readings to drastiically alter on the feed becsuse it is full of carbs, so i’m expecting lots of spikes!

They are much better than they were when it first started, when i had highs in the 20’s!

I currently take 10 units of lantis before i start my feed, and 4,5 and 5 units of novorapid through the feed.
Readings tend to range from 6 to around 11.5 currently, but I had a bit of a panic last night because I was 4.5 just as I was about to go to bed.
Not sure if it would have been ok through the night so had a fruit puree to bring it up to 6.0
Then woke up worrying in case it had dropped - it hadn’t though.
 
PS just saw you mention the Freeman so presume you are up in the NE.
I am an exiled Geordie but living many miles away now.
No, I’m the other side in Cumbria
I have been prescribed fortijuice, not sure if thats protein? Originally it was fortijuice but I couldn’t take the creaminess of them, made me sick ☹️
 
No problems JBB and you will be in good company as I know of at least 2 other Type 3Cs Eggy and Zippy Jo who live in Cumbria.
My dad’s side of the family was from Brampton/Gilsland so sure there is a bit of Cumbrian in the genes along with a lot of other stuff( defo a Heinz 57)
 
Welcome @JBB70 to the Type3c club that no one wants to join.
I’m in Cumbria too, Carlisle in fact, like @Wendal mentioned. I know exactly how you are feeling, I always say I had PTSD after my very first hospital experience due to a dodgy pancreas. This was way back in 2001. I was fed through my stomach, I had emergency gall bladder removal ( gallstone induced pancreatitis) and two pseudo cysts drained, I have never felt so ill in my life. I was hospital for six weeks too and couldn’t wait to get back home. Hospitals are horribly places. It took a while for me to eat normally ( I lost three stones in the six weeks I was in hospital) I thought I would never be able to eat ever again. The smell of food or even anyone talking about it would be enough for me to feel very unwell. What I’m saying is, things are awful now but believe me when I say it does improve. I’m not saying your life will normal again because it won’t. But we’re here to guide you through it as best we can. Please DM me if you want. Big hugs Elaine.
**edited** I didn’t become diabetic that happened many years down the line. So can’t help with the insulin/ tube feeding dilemma I’m afraid.
 
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Welcome @JBB70 , although sorry that you've had to join us.
I'm also Type 3c following necrotising pancreatitis.. I had a lengthy stay in hospital, had a feeding tube (NJ) inserted very early on and left hospital with it still in place. It was finally removed about 3 months later, once I was managing to eat a reasonable amount.
It was very hard to eat at the start. For me the main issue was pain and nausea, although it was also hard to swallow. I thought I'd never want to eat again but I eat pretty normally now.
I was encouraged to try to eat little and often, soft foods like yogurt, custard etc and gradually was able to increase the amounts. For a long time, like you, the vast majority of my food intake was via the tube and so my insulin was set for that. I had Humulin I to cover the feed jand a fast acting insulin (Novorapid) that I injected to correct my blood sugar if it got too high. It took a while before I needed to do that, though, as I wasn't managing to eat much.

Once the feed was removed my dose of Humulin I reduced dramatically. Your diabetes team will help with suggesting your new dose. I soon moved to a new regime with a different long acting insulin.

It's a huge shock to the system and hard work dealing with the physical and mental issues that follow such a severe illness so do be kind to yourself. I found celebrating every tiny improvement helped. It will take time to recover but things do get better.
Hoping the recovery goes well and please ask if you have any questions.
 
Thank you, it so good to chat with people who understand the challenges i’m facing.
The doctors were really good with me in hospital and were reassuring ne to take my time.
But then I would be pressured by the healthcares telling me I had to eat. It took 4 weeks before they gave me the low appetite menu, which still wasn’t very helpful as very few xoft, easy to swallow options.

I get a lot of nausea with stomach cramps the NJ and my meds cause me lots of bowel problems too.

I guess i’ve just got to take my time snd just keep swimming and ignore the family and friends asking me when i’m getting the NJ out etc.

Thank you for listening to me xxx
 
@JBB70, a few words about Diabetes diagnosis which might help with understanding where Health Care Professionals (HCPs), the ill-informed media and "the person nearby who doesn't have diabetes" are themselves coming from:

A diagnosis of Diabetes "Type" comes from the cause, not the treatment. Almost all Types as diagnosed and labelled are a mixture of meaningless numbers and letters.
In UK there are c4.5 million folk diagnosed with Diabetes; elevated blood glucose that needs distinct treatment to manage this medical condition.​
T2 covers the majority of those with D, about 90%. This in itself is tricky since there are several causes of T2 and there can be a subtlety and complexity to their D that is comprehensively obscured by such a generic diagnosis title. However in very general words T2s make lots of insulin naturally and their body is strongly resisting their natural insulin. Most T2s manage their condition from diet and/or oral meds; a few need extra insulin.​
T1 is in theory a very precise diagnosis, in that the cause is (as @Inka has already explained) from an autoimmune condition. This has its own consequences and sometimes vulnerabilities, that need a clear medical awareness. T1s make up about 10% of those with D. T1s need extraneous insulin to stay alive (with a miniscule no of exceptions; my great niece is confirmed T1, currently coping by diet and oral meds).​
All the rest of us fall into a tiny percentage of less than 1% - of those with D. The only one that has a title that helps explain is Gestational Diabetes. These other Types are some form of T3: D because of damage to our pancreas, making our ability to produce insulun impaired. A proportion of T3s manage with oral meds, it appears that most T3s end up needing insulin. In theory there are T3 a-k Types; these descriptors are rarely found, partly because the notion of T3 is recent and there are still many HCPs who (shamefully) are out of date. Consequently there can be folk with D, diagnosed as T2 or even T1, but who have their D from damage to their pancreas and should be T3 something.​
You and I are T3c: this subgroup includes pancreatic damage from pancreatitis as well as damage from major surgery including partial or total removal. One normal common denominator is the panc'y damage includes damage to our production of digestive enzymes and we have that Pancreatic Enzyme Insufficiency (PEI) that needs Pancreatic Enzyme Replacement Therapy (PERT) in the form of Creon, or other PERTs. Needing PERT is far from unique to just T3cs; it helps with an array of gastro problems, unrelated to D.​

The message from all of this is that many HCPs can be unaware there is this "other" diabetic condition and not only don't understand but try to see us as some other part of the T2 population. I have been continually surprised to find this, having to explain that I need to pay attention to what I'm eating, particularly its carb content so I can get my insulin dose correct; also not understanding that my T3c originates from a fundamentally different cause and brings its own challenges. I think it is helpful to at least be aware that our condition is not frequently encountered in GP Surgeries or even on Hospital Wards; fortunately this does seem to be slowly improving!

I've seen your response to my initial comments. Glad you are at least back home, yet sorry that it all seems like you are in for a long haul. You've already heard from some of the T3cs on this Forum as a result of pancreatitis; you could fairly deduce that your T3c has very different origins to mine and what I know about pancreatitis is solely from what I've read since joining this forum.

What I do know is that there is a lot of help here, a fair amount of knowledge from the practical experiences of others and suggestions for finding other help. One source for the more generic aspects of managing your D is the DUK main site; this Forum is sponsored by DUK which most helpfully provides us with a platform. But we are independent of DUK and I would encourage you, in due course, to go rummaging in DUK's Learning Zone (drop down menu top left and orangey tab at the bottom) as well as in the main site. There is also good info on the National Pancreatitis Support site. In almost the same breath I would caveat "be cautious" about generic Internet searches; apart from there being a lot of ill-informed stuff out there, in practice you are best served by reading from UK sites. This is not because we have a monopoly on what is correct, but your treatment is from the NHS and there is little point in reading about some miracle solution that can't be provided by the NHS.
 
Thank you, it so good to chat with people who understand the challenges i’m facing.
The doctors were really good with me in hospital and were reassuring ne to take my time.
But then I would be pressured by the healthcares telling me I had to eat. It took 4 weeks before they gave me the low appetite menu, which still wasn’t very helpful as very few xoft, easy to swallow options.

I get a lot of nausea with stomach cramps the NJ and my meds cause me lots of bowel problems too.

I guess i’ve just got to take my time snd just keep swimming and ignore the family and friends asking me when i’m getting the NJ out etc.

Thank you for listening to me xxx
We are good at listening (reading) and understand how confusing and complex D is. Even without the pressures from elsewhere, poor food options in Hospital (unforgivable really) and problems invisible to others like bowel (or bladder) issues; a walk down the garden was a challenge for me for a while - never mind to the shops.
 
I know there is a shortage of creon.

Just to let you know that there is more than one strength of Creon available. I was prescribed 25000 strength. This does sometimes become unavailable but no told me about a 10000 strength version that, for some bizarre reason, continues to be available when the 20000 isn't. (In My Experience).

May not be relevant to you but more info is always better (IME).

UPDATE : Apparently now there IS a shortage of both strengths (just to prove me wrong).
 
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I just wanted to wish you well after all that you have been through. I am pleased that you have found the forum, and have already tapped into the wealth of expertise from the 3c team. They are stars.

Lots of our managements has things in common and there are plenty of tips t9 be had. No questions are considered silly on here so just ask.

It must be good to be able to sleep in your own bed after days in hospital, where the interruptions go on throughout the night. Try to rest well and take things step by step. The carb counting becomes just a normal part of life and I am amazed at how much info I now have in my head about the foods that we normally eat.

Take things step by step. It will get easier.
 
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