Hi everyone. Type 3c following necrotising pancreatitis

[soupdragon]

Hi everyone

First, a huge thank you from me. I’ve “lurked” for quite a while and learnt a huge amount from the posts on the forum.

A bit of background…

I had severe acute necrotising pancreatitis in 2019 and spent 6 months in hospital (2 in intensive care at the start along with a brief return to ICU after a haemorrhage). I was told before I left ICU (the first time) that I was now diabetic and that I’d need pancreatic enzymes (Creon) for life.

I was lucky that my local hospital is a specialist centre for pancreatitis so I was close to home and able to have visits from friends and family but the rollercoaster of pancreatitis was quite a challenge.

Over the last couple of years I’ve worked really hard to improve my strength (lost a huge amount of muscle in ICU), get my brain working again and get back to something close to my life before the pancreatitis. After leaving hospital there was so much going on (still tube fed for 3 months after leaving hospital, lots of physio etc) that the diabetes was the least of my worries.

I came out of hospital on Humulin I (which covered the overnight feed) and Novorapid for corrections. After the feeding tube was removed I was briefly on fixed doses for meals, was taught to carb count, then moved to Lantus. This year I changed to twice daily Levemir which suits me much better than the Lantus (not missing the 3 AM lows and much preferring being able to adjust basal doses more easily). I was lucky enough to start Libre 1 in March 2020 and was moved to Libre 2 recently. I am loving the alarms (not enjoying them quite so much at night, though!).

The reality of the diabetes finally hit at the end of last year when the challenge of juggling life and diabetes caught up with me. I’ve had help from my diabetes team (who are very knowledgeable about Type 3c and very supportive) and am still working on being more relaxed about my glucose levels.

I’ve recently left hospital after an admission for a small bowel obstruction due to adhesions from the pancreatitis. After a couple of weeks in hospital, during which the team hoped to avoid an operation, they carried out an adhesiolysis procedure, which seems to have solved the problem. The chaos of my blood glucose levels during the admission seems to have helped to calm down my perfectionist tendencies for the moment. I hope it continues! Managing blood glucose and exercise is still a work in progess…..

 

[SB2015]

Welcome to the forum @soupdragon , from another person who had perfectionist tendencies. My T1 has made sure that I have had to loosen that expectation as perfection is just NOT POSSIBLE. It took me quite a while to accept that, especially as the variety of tech helped me to gradually improve things but then it stopped improving, and folks on here eventually convinced me that Inwas doing the best that I can, which is fine.

I will take @eggyg our resident expert with T3c, who juggles the insulin doses alongside creon.

pleased that you have found the forum and ‘delurked’ now. Keep any questions that you have coming, as there is plenty of experience to tap into on here.

 

[soupdragon]

Welcome to the forum @soupdragon , from another person who had perfectionist tendencies. My T1 has made sure that I have had to loosen that expectation as perfection is just NOT POSSIBLE. It took me quite a while to accept that, especially as the variety of tech helped me to gradually improve things but then it stopped improving, and folks on here eventually convinced me that Inwas doing the best that I can, which is fine.

I will take @eggyg our resident expert with T3c, who juggles the insulin doses alongside creon.

pleased that you have found the forum and ‘delurked’ now. Keep any questions that you have coming, as there is plenty of experience to tap into on here.

Thanks @SB2015 .

 

[rebrascora]

Hi and welcome from me too.

It sounds like you have really been through the mill with your health. My mother had several bouts of acute pancreatitis so I can greatly sympathise. It is apparently excruciating.

I'm another perfectionist, struggling to find the balance but getting there. Now that I have Libre, I tend to treat it more like a game where I try to get a personal best Time in Range (TIR) when I am doing well but know that I can't maintain that level of achievement long term, so accept when things go astray and sometimes use that "down time" when I am off the boil to experiment with new foods or try different strategies and then when I start to build up towards my previous personal best I will give it extra effort to see if I can beat it. Treating it like a game has made me a bit more relaxed about it. That is just what works for me and I find I am less fixated and frustrated when I fail to maintain fantastic levels (but still have more than reasonable levels) of control and just spend shorter periods actually trying to really improve it. It keeps me motivated whilst not being obsessive. My levels seem to go in waves of behaving and then misbehaving. So far I am not seeing any real patterns to that, but just manage it as best I can. Being on Levemir certainly helps with making the necessary adjustments. Pleased you find the same with that basal insulin. It allows so much more flexibility, especially with exercise.

Anyway, I just wanted to say hello and thanks for the great "Intro" as it really is interesting to learn from other people's experience. I am sure @eggyg will be along at some point to compare notes and I think you are likely to have a lot in common.

 

[soupdragon]

Thanks @rebrascora. Yes, the pain of pancreatitis is quite something!
I like the idea of treating it as a game and am trying to just shrug and laugh when it doesn't play by the rules!

 

[eggyg]

Hi @soupdragon
Type 3c due to pancreatic surgery almost 14 years ago. I also was hospitalised last year with a bowel obstruction because of adhesions. Not pleasant is it? They just “ emptied” me out and I was home in two days. I now follow a mostly low residue diet. Low fibre, no fruit, nuts etc. All white stuff, the exact opposite to what we’ve been told for years!
What can I help you with? We’re all very different in how we manage our diabetes but with type 3c ( congrats BTW on having a team who understands it, I don’t) it’s the gastric problems that I find the pain in the butt, pardon the pun. Juggling BGs and food that sometimes doesn’t want to leave me and other times can’t wait to, is exhausting. But I’ve just got Libre 2 on prescription and I’m sure/ hoping it will help a lot. Creon can also hinder the BG process, it’s very much a work in progress even after all this time. I’m on the same insulin regime as you and it suits me fine.
I’m here everyday so fire away with any questions or just for a moan. I don’t mind. Elaine.

 

[mikeyB]

Like all the Creonista Club on the forum, having a defunct pancreas because of chronic pancreatitis leads to chronic problems with diabetes control. I recently had to almost double my intake of Creon, and that led to wizard ups and downs in BG and the death of the prebolus. Having the Libre 2 is literally a lifesaver, and using ultra fast Fiasp insulin keep the old HbA1c in civilised range. I've now stabilised out on the higher Creon dose, but still get caught out occasionally which is inevitable. Mind, I was T1 for years before the pancreas started dying, in my case probably an auto immune problem.

In your case, there is nothing worse in the list of things not to get. You were lucky to survive, acute pancreatitis carries a 25% death rate first time around, but that is lowering slightly with improved care techniques. You've obviously come out of that with a good handle on the diabetes, and certainly changing from Lantus to split dose Levemir as I did was a good move.You were lucky in living near a specialist unit - where is it, if you don't mind me asking? There should be a such a unit in every region, but that is impossible in the fractured nature of NHS England.

Anyway, welcome to the gang, and it would be good to hear your continued adventures, and ask any questions you like - there are no stupid questions, because we've all asked them over the years. 🙂

 

[soupdragon]

Hi @soupdragon
Type 3c due to pancreatic surgery almost 14 years ago. I also was hospitalised last year with a bowel obstruction because of adhesions. Not pleasant is it? They just “ emptied” me out and I was home in two days. I now follow a mostly low residue diet. Low fibre, no fruit, nuts etc. All white stuff, the exact opposite to what we’ve been told for years!
What can I help you with? We’re all very different in how we manage our diabetes but with type 3c ( congrats BTW on having a team who understands it, I don’t) it’s the gastric problems that I find the pain in the butt, pardon the pun. Juggling BGs and food that sometimes doesn’t want to leave me and other times can’t wait to, is exhausting. But I’ve just got Libre 2 on prescription and I’m sure/ hoping it will help a lot. Creon can also hinder the BG process, it’s very much a work in progress even after all this time. I’m on the same insulin regime as you and it suits me fine.
I’m here everyday so fire away with any questions or just for a moan. I don’t mind. Elaine.

Hi @eggyg
No, the bowel obstruction wasn't at all pleasant but, because it wasn't quite as painful as the pancreatitis, I left it a few days before I went to hospital thinking it was just a particularly painful upset stomach. I actually went in in the end because the ketones were shooting up.
They tried the "emptying", which worked until I started solid food again. I think I would have been fine if I'd never eaten again! Was discharged after a week and back in A and E the next day after the severe pain started again. Then they tried again with the same result. After that it was agreed that surgery was the only option. The surgeon was expecting to have to do open surgery but in the end it was keyhole. The positive side is that it should be unlikely to happen again. They had started to talk to me about the diet you are following. That must be tough.
Yes, I'm lucky that I was told I was type 3c when still in hospital and the diabetes team have quite a few 3cs on their books. On my carb counting course there were the same number of Type 3cs as Type 1s.
The juggling of Creon and food and the varied effect on BGs is quite a challenge. I suppose life would be boring if it always did the same thing but sometimes I think it might be nice if it was a bit more boring!
I've found the Libre 2 so helpful, if rather addictive. Hope it works well for you.
Thanks for your reply. It's so helpful to hear from someone who knows the joy of Creon and food juggling.

 

[soupdragon]

Like all the Creonista Club on the forum, having a defunct pancreas because of chronic pancreatitis leads to chronic problems with diabetes control. I recently had to almost double my intake of Creon, and that led to wizard ups and downs in BG and the death of the prebolus. Having the Libre 2 is literally a lifesaver, and using ultra fast Fiasp insulin keep the old HbA1c in civilised range. I've now stabilised out on the higher Creon dose, but still get caught out occasionally which is inevitable. Mind, I was T1 for years before the pancreas started dying, in my case probably an auto immune problem.

In your case, there is nothing worse in the list of things not to get. You were lucky to survive, acute pancreatitis carries a 25% death rate first time around, but that is lowering slightly with improved care techniques. You've obviously come out of that with a good handle on the diabetes, and certainly changing from Lantus to split dose Levemir as I did was a good move.You were lucky in living near a specialist unit - where is it, if you don't mind me asking? There should be a such a unit in every region, but that is impossible in the fractured nature of NHS England.

Anyway, welcome to the gang, and it would be good to hear your continued adventures, and ask any questions you like - there are no stupid questions, because we've all asked them over the years. 🙂

Thanks for the welcome @mikeyB
It's good to hear from another Creon user.
Yes, I'm very lucky to be here, which usually puts things into perspective when juggling Creon doses and BG levels.
I find Levemir a big improvement on Lantus. I did try splitting Lantus first but it wasn't a great success. I think it was reading about Levemir on the forum that gave me the idea of suggesting a change.
The pancreatic specialist unit is at the Royal Surrey County hospital in Guildford. There were patients there from quite a wide area so I did feel lucky that I was pretty close to home. It's also made follow up care much easier.

 

[everydayupsanddowns]

Welcome to the forum @soupdragon (great username!)

Sounds like you’ve made amazing progress. Glad you’ve found some helpful posts on the forum

Well done for de-lurking! 🙂

 

[soupdragon]

Welcome to the forum @soupdragon (great username!)

Sounds like you’ve made amazing progress. Glad you’ve found some helpful posts on the forum

Well done for de-lurking! 🙂

Thanks for the welcome everydayupsanddowns.
I've found some great ideas and information on the forum, which have really helped.
I'm glad to have de-lurked!

 

[adrian1der]

Welcome from me as well @soupdragon

 

[soupdragon]

Welcome from me as well @soupdragon

Thanks for the welcome @adrian1der