Hi recently diagnosed T2 but querying if should be T3

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Doris1971

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Hi all, new to this forum. Recently been diagnosed T2 after 8 week stay in hospital due to necrotising pancreatitis. I am also having to take enzymes to digest food. Currently have a pseudo cyst ( was apparently 20cm at its biggest and no room for stomach, had to be tube fed). I have a drain in my left hand side as more fluid around my pancreas, which is communicating with the pseudo cyst. Am waiting for follow up for next management plan. Hoping for gall bladder to be taken out soon and stents inserted so that fluid drains into my stomach instead of having this drain. Had lots of problems with it since being sent home, hospital, GP and district nurses keep passing the buck to each other. Had to try and find all the bits and pieces to maintain it myself.
That’s my introduction, nice to meet you all
Doris1971
 
Hi @Doris1971 and welcome to the forum
I too came out of hospital with a drain connected which actually ran dry within a few days of being home. I was told I had two pseudo cysts 3cm & 5cm which they were not too concerned about and left them. It was only 3 years later when the bigger one decided to swell up and cause complications. I think the consensus at the time was to see if they would go down by themselves - but my body disagreed 🙂 I kept on knocking the drain & they eventually took it out after about 1.5 months when it was virtually hanging out itself.
They don't seem to like taking out gall bladders unless they know that was the cause and then only if it is not swollen/damaged (as mine was at the time) so I had mine out several months after the initial necrotising pancreatitis.
Hope you are otherwise recovering well from all the prodding they have done!
-DJ
 
Hi DJ - thanks for the reply, much appreciated. I’m recovering slowly but surely. I still struggle to move about due to the pain but I’m persevering. Also having problems with my care as a whole as I’ve had so many problems with my drain - parts braking/ falling off and no one wanting to take responsibility.
Spending my time getting sugar free recipes for puddings, cakes and biscuits
Doris1971
 
Hi @Doris1971
I'm another one here due to necrotising pancreatitis. Also left hospital with the pancreatic drain (in a really awkward position) so I sympathise. Oh, and feeding tube still in for another few months.
Assuming you didn't have diabetes before the pancreatitis that sounds like 3c as it appears to be due to the pancreatic damage.
How are you being treated? Are you taking insulin? The reason that I'm asking is that while reducing sugar might be enough to help if you were Type 2 (although you would have to consider that all carbohydrates, not just sugar, raise blood sugar) if you have a lot of pancreatic damage, that is unlikely to be enough to keep blood sugar down. Those of us on insulin have to count our carbs to inject the right amount of insulin.
In the long term, getting the correct diabetes diagnosis is important for getting access to diabetes technology (I'm treated as if Type 1).
Hoping someone is keeping an eye on your blood glucose levels as part of your pancreatitis follow up.
Hope the recovery is going as well as possible.
 
Hi @Doris1971 and welcome to the forum. We have a lot of members whose diabetes has come about through pancreatic damage of some sort or another and are happy to share experiences to help you get sorted. In the beginning, though, classification is not something to worry about. Getting through the surgery and recovering as quickly as you can is much more important. In any case, my non-medical head says that it won't be until things have settled a bit will anybody be able to work out how well your in built blood glucose control system is working and then give you a type number.

Oh and don't be shy at badgering people about your drain. Unless you are very unlucky, you will eventually find somebody (probably a district nurse) who will know exactly what is needed to improve your drain and more importantly, how to get it.
 
Hi both. Thanks for your replies - very enlightening.
soupdragon - I was not diabetic before the pancreatitis. For some reason, my discharge letter says that I was - queried it with GP, who said I wasn’t, so have contacted access to records at hospital to get that info removed. Discharge letter was a right shambles - said I also had acute renal failure from 2022! My whole care has been a shambles from start to finish. I’m on lantus slow release and it wasn’t even mentioned about carbs - the dietitians were getting me to try and eat as much protein and calories as possible due to dramatic weight loss. One thing I did find with the feeds (done through nasal tube), my sugars would go through the roof and they would go straight through me. I always felt so ill on them to the point I had to demand that the dose be halved and slowed down. My GP rings now and again as he has access to my sugar levels as I have a glucose monitor on my arm - would definitely recommend!
Docb - I have to flush my drain everyday as per instructions from my consultant. I had only been out a few days when the 3 way tap stopped working and I couldn’t flush or aspirate as cons request. I went back to the hospital where I was kept for 8 hours, when all I needed was a new tap put on. Eventually a surgical registrar finally sorted me out - in his words he had to “MacGuyver a drain together”. So currently I have drain that drags on the floor, due to the length of tubing this so called registrar, has put on. During this I have been passed from district nurse, hospital, GPand ward as no one wanted to take responsibility for the items needed to maintain it, ie; flushing liquid, syringes and 70% antiseptic wipes. I have had to sort all this out myself. Goodness knows what will happen if anything happens to the tube!
I have lost faith in my care at the moment.
Doris 1971
 
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Evening Doris,
So sorry to hear about your experience and another one here with a necrotising pancreatitis but only spent 17 days in hospital but split over 3 stays.This was about 2 years ago and I too developed a large pseudocyst no drain and eventually last August my CT scan revealed it had dissolved itself so on balance good to watch and monitor but whatever your Consultant advises.
I was then diagnosed with Diabetes about 8 months ago but am managing reasonably well.
Had my gall bladder removed about 2 months after I left hospital as they like to get you on road to recovery before operating but they can operate with a large pseudocyst.
BW
 
Hi Wendal
Thanks, you have given me hope. I have my CT scan on 2/4. I’m keeping my fingers crossed the drain comes out soon but not holding out much hope as I’m currently getting 50mls in the drain every day.
Doris1971
 
Welcome to the forum @Doris1971

Diabetes as a result of necrotising pancreatitis does sound like type 3c to me

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...
www.diabetes.org.uk www.diabetes.org.uk

We do have a number of other members, including @eggyg who had to battle with non-specialist HCPs who seemed unaware that T3c was a thing, so you aren’t alone!
 
Hi everydayupsanddowns, thank you for the info, it’s really appreciated. I will be bringing this up at my follow up in the next few weeks.
How has everybody coped with such a diagnosis and coping with everything that goes with it? Mentally, I am at my lowest. I don’t remember the first 3 weeks I was in hospital. I was humiliated by a nurse and other night staff when I couldn’t do my own personal care, being discharged but having to wait 24 hours for meds and pain relief, the amount of medication, I’m on 30 tablets a day and all the hassle with no help with my drain and trying to keep it infection free.
I really am going to need to speak to someone. I work for the NHS and would never allow this kind of thing to happen. I have put in a complaint with PALS but have to wait a couple of months for an outcome :(
Sorry to drone on but not had anywhere else to put this down where people are going through the same situation.
Doris1971
 
Just huge and very careful {{{hugs}}} - I genuinely believed all this 'lack of aftercare' bolloney had finished - clearly it hasn't. :(
 
Hi @Doris1971 i was admitted to hospital June 2001 aged 41 with pancreatitis caused by gall stones. It was all very sudden. I was very poorly. After two weeks they removed my gall bladder and drained two psudocysts. I was released after four weeks but re admitted a week later for another two weeks. I lost three stone and really thought I was going to die. I have never felt so ill in my life. It was a traumatic experience and I also felt that no one knew what was going on or cared. Left to fend for myself in hospital a lot of the time. It was truly horrendous and even after 23 years I shudder when thinking about it. I wasn’t diabetic, it was never mentioned. I had four months off work and life went on. It was difficult I had a young family and wasn’t the same person I was. I had absolutely no follow up at all until 6 years later I got the familar pain again. It’s a pain you can’t describe unless you’ve experienced it for yourself. I went to the GP who said I couldn’t get pancreatitis again as I’d had my gall bladder out! I put her right on that and to cut a long story short five months later I had three quarters of my pancreas removed along with my spleen. Three weeks in hospital over Christmas and New Year. Various problems but I still wasn’t diabetic! That came along 3 years later, told Type 2, lose weight and exercise they said. I joined here in 2010 and as the years went by I realised it didn’t matter how much weight I’d lost or how much exercise I did I’d never grow a new pancreas! Another long story short…put on insulin nagged and nagged to go on a course to learn all about it. Told no, nagged again until they relented. This is now 2018. team at the hospital were great, I wasn’t Type 2 I was Type 3c. I manage it well, I have “issues” all because of my surgeries but I am 64 very soon. I run around after my 6 grandchildren, soon to be 7, I walk up fells and mountains. I am retired but that’s because of my hubby’s health problems. I’m alive and well ( ish) though at times I didn’t think I’d survive and I expect you think that too. But it’s very early days and as @Docb says don’t worry about the diagnosis yet. It won’t make any difference yet. Recover from the surgery and when you’re up to it start the fight! Just don’t expect it to be quick and be thankful that more and more HCPs know more about Type 3c now, thank goodness. All the best and any questions fire away. I’m on here every day so will pick them up. Elaine.
 
Hello @Doris1971, Welcome to the Forum. I was compiling a reply to your other post then this thread appeared so I'm pasting that reply here instead.

1. Sorry to read your tale of so many woes. I feel for you - even though I know that my moral support won't help very much. I have no medical training just 4 years of all too frequent unnecessary medical mishaps and unwanted adventures.

2. Do challenge the recorded T2 diagnosis. It sounds as though your GP is on your side, could he/she assist you with that corrective action? Personally I think this correction could be very important for you in the longer term. I can't imagine a clearer case of T3c and nothing you've told us so far could be interpreted into a T2 diagnosis. But, alas, some HCPs seem unable to engage their brains and recognise that there is much else than a T2 diagnosis for Diabetes in an adult. It's worrying really.

3. About tubing, drain taps and such paraphernalia: I had a temporary catheter fitted by the Hospital after an operation which turned into a 9 month "wee saga". [Sorry I couldn't resist that attempt to keep this light hearted.] I eventually found that in Bucks my GP could refer me to the services of a District Nurse, but despite the hospital discharge paperwork telling my GP, I had to bully the system to make this happen. Somebody (the DN probably) set up a supply contract with a company in Liverpool who sent me a huge box of stuff, most of which I didn't need and struggled to store (before most of it could not be returned!). So that might be the route for you if the drain remains; your DN might have a temporary fix from existing stock. The Liverpool company regularly phoned me to try and get me to take a 2nd not needed box of stuff.

4. I note you are on Lantus which is a background (basal) insulin. Are you also on a quicker (bolus) insulin? I also note that you have a CGM (Libre 2?) which I deduce was prescribed as an initiative by your GP; hence your GP's Surgery has access to your CGM readings through a Web portal (or whatever the exact technical term should be). You are truly well served in this by your GP. Despite some relaxation in the NICE Guidance Directive in mid 2022 its still surprisingly difficult to get GPs to prescribe CGM. They now have the authority but seem to be constrained by financial pressure from the new Integrated Care Boards (I surmise; or they simply haven't read the amended NICE Guidance!). If you should find that you need help with the insulin dosing, don't be shy in seeking guidance from this forum; there is a huge wealth of user "lived experience" here and forum members are happy to share their knowledge.

Meanwhile I hope you get a smooth run from now until your scan on 2/4. I know very little about the intracies of pancreatitis, but as you've found there is sound knowledge of that within our membership. Do you expect a result from your scan immediately or will that have to be sent somewhere for detailed analysis / interrogation etc? If so how much longer might you need to wait?

Good luck.
 
When my OH had a catheter due to a prostate issue, he was discharged with no instructions whatsoever. After a couple of days he had a problem but luckily a neighbour worked in the community nursing team and she was able to help with a contact to the catheter nurse. It still needed a referral from the GP which should have happened on discharge by the hospital but he did then get a visit and assessment and some supplies provided. Having said that they were the wrong type of bags so he ended up buying from Amazon.
In the end he had it for 4 months. The only positive was he did not need to get up the 5 or 6 times a night which he had before.
Still not a pleasant experience.
 
Doris1971 said:
Hi everydayupsanddowns, thank you for the info, it’s really appreciated. I will be bringing this up at my follow up in the next few weeks.
How has everybody coped with such a diagnosis and coping with everything that goes with it? Mentally, I am at my lowest. I don’t remember the first 3 weeks I was in hospital. I was humiliated by a nurse and other night staff when I couldn’t do my own personal care, being discharged but having to wait 24 hours for meds and pain relief, the amount of medication, I’m on 30 tablets a day and all the hassle with no help with my drain and trying to keep it infection free.
I really am going to need to speak to someone. I work for the NHS and would never allow this kind of thing to happen. I have put in a complaint with PALS but have to wait a couple of months for an outcome :(
Sorry to drone on but not had anywhere else to put this down where people are going through the same situation.
Doris1971
Click to expand...
You are dealing with so much at the moment @Doris1971 and it is really hard.
I remember really struggling with what to eat - worrying about the effects of fat on the pancreas and carbs on the diabetes. This was all at a time that eating anything was a huge struggle due to pain and sickness.
It sounds as though you are doing really well starting to deal with everything. There is a lot to deal with! It took me a long time to start to get to grips with the diabetes. Changes to the feed, the amount I could manage to eat, the physical recovery and so many other things made getting into a routine a challenge.
Don't underestimate how long it takes to recover from necrotising pancreatitis. I'm still improving, though much more slowly now. The physical and mental recovery are tough.
One thing that I've found helpful (and still do) is celebrating every achievement, however small. I make a note of them in a diary and find that when I'm feeling frustrated about what I can't do, looking back at how far I've come puts things into perspective.
Good luck. It does get easier.
 
Thanks for the replies, Its very sad that it’s getting to the point that we have to fight for everything in the NHS.

Eggyg- sorry you had to experience this pain - it is the worst pain ever. I remember asking them to put me to sleep due to how bad it was. Yes, there have been times when I just wanted it to all end, I’m still very down, especially due to the trauma of the humiliation at the hands of one of the nurses and some of the other night staff. I will be asking to be referred to mental health as I really don’t feel that I am myself. I’m putting on a brave face for the family. I will have to go back to work soon, just don’t know how I’m going to manage, what with the mental side and the symptoms side. Taking enzymes to digest food leaves me with some very smelly side effects 😱

I still have my pancreas, but cons said some of the tissue has died. I’m hoping that my follow up will give me all of the explanation about everything that went on and also the results of my scan on 2/4. Im hoping that my pseudo cyst will have shrunk or it’s matured enough that they will stent it so I can get rid of the stupid drain.

Proud to be erratic- I’m going to contact the diabetic team at the hospital regarding the type 3 diagnosis at some point. I’ve not really had much info apart from when they visited me on the ward.. My GP was very good and issued the libre 2 sensor as soon as I visited the day after discharge - they really are a game changer.

District nurses here discharged me as I could flush the drain myself, even though I told them I had nothing to keep it clean or that the tube was too long( it’s dragging on the floor and will only drain properly if I’m standing up! ) The original one that had been attached in theatre was a bile bag attached to an approx 30cm, which was attached to a 3 way tap. I’ve seen the practice nurse today as I wanted someone to check that I was keeping the drain entry wound clean. She’s going to sort me out some dressings - someone helping a bit at last!

Leadinglights- I’m going to ask the consultant at my follow-up why I haven’t been put in contact with specialist pancreas nurses in order to sort out after care. It wasn’t on my discharge papers that I still had a drain in so this is why I’m having to fight for everything.

Thank you to everyone who has taken the time to read my rant, grateful for all advice given as there was so much I wouldn’t have been able to ask for as I Iwas totally out with the fairies with all the drugs I was being given. I wish my family had been allowed to come in on the mornings when the ward rounds were on, maybe a lot of things may have turned out differently. I have my list of questions now for my follow up.

Hopefully I’ll start to feel myself at some point, thanks everyone, you are lifesavers, can’t thank you enough.
Doris1971😉
 
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Evening Doris,
So sorry to hear about your troubles and hope fellow posters detailing their experiences helps you realise that you will get through this even if the dark tunnel stretches far into the distance.
I can’t pretend that my own situation was as serious as some others but it was a truly nasty experience that at times felt like would I ever get better?
My turning point was advice from a dietician to eat normally with the help of the Creon and since then I have more or less got back to normal and that has helped me not to dwell on my diabetes diagnosis as it just seems another situation to manage.
As Elaine has said we have all gone through a tough time to varying degrees and potentially very serious so no one really talks about the long recovery.
But eventually we do get there and live our new life as normal as possible so just take each day as it comes and then the weeks and months will take care of themselves as you gradually improve.
Wishing everyone a great Easter.
 
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