Type 3c and things seem to be improving

[JBB70]

Its now 4 months since acute necritising pancreatitis left me with diabetes, and I am still in recovery waiting for my gallbladder to be removed.
Part of my pancreas is dead, but I have not had anything removed as yet.

I have had a few gallbladder flare ups and ended up in SDEC for tests 3 times in two weeks as my liver and pancreas reacted badly to them.

However, by BG has been improving for a while to the point I wasn’t convinced that I am actually diabetic.
I noticed when I ate things that were quite high sugar or carbs my levels didn’t really change.

Because of the flare ups i have stopped eating additional food and now rely on my NJ feed tube, because i’m too scared to take the risk of more.

My BG started to drop and keep going low though on my insulin levels, particularly at night time, so I took less of my novo rapid.
It was getting to the point I was shovelling in glucose tablets through the night to stop the alarm on my libre going off.

I was on 10 units of Lantus and 14 Novo rapid, but after discussing it with my DSN I am now trying just 8 units of Lantus, and i’m absolutely fine. My graph has been around 7 all day and no dips so far.

I asked if my Pancreas could be tested to see if its working now, but thats usually only done after 5 years, but they might do it earlier.

She did say sometimes taking insulin can sometimes kickstart the pancreas in to making it’s own, so fingers crossed!!

I do wonder if things will change again when I have my surgery though, so not counting my chickens yet.

Have any other 3c’s experienced anything similar?

Sorry for the long post, but thought it better to give you the full story 🙂

 

[Vonny]

It all sounds really hopeful @JBB70 though 5 years for a Pancreas test seems a long time. Long may your improvement continue!

 

[JBB70]

It all sounds really hopeful @JBB70 though 5 years for a Pancreas test seems a long time. Long may your improvement continue!

Thank you
I was suspicious when I saw a post that mentioned icecream being a trigger, and yet a magnum had no effect on me.

 

[Wendal]

Its now 4 months since acute necritising pancreatitis left me with diabetes, and I am still in recovery waiting for my gallbladder to be removed.
Part of my pancreas is dead, but I have not had anything removed as yet.

I have had a few gallbladder flare ups and ended up in SDEC for tests 3 times in two weeks as my liver and pancreas reacted badly to them.

However, by BG has been improving for a while to the point I wasn’t convinced that I am actually diabetic.
I noticed when I ate things that were quite high sugar or carbs my levels didn’t really change.

Because of the flare ups i have stopped eating additional food and now rely on my NJ feed tube, because i’m too scared to take the risk of more.

My BG started to drop and keep going low though on my insulin levels, particularly at night time, so I took less of my novo rapid.
It was getting to the point I was shovelling in glucose tablets through the night to stop the alarm on my libre going off.

I was on 10 units of Lantus and 14 Novo rapid, but after discussing it with my DSN I am now trying just 8 units of Lantus, and i’m absolutely fine. My graph has been around 7 all day and no dips so far.

I asked if my Pancreas could be tested to see if its working now, but thats usually only done after 5 years, but they might do it earlier.

She did say sometimes taking insulin can sometimes kickstart the pancreas in to making it’s own, so fingers crossed!!

I do wonder if things will change again when I have my surgery though, so not counting my chickens yet.

Have any other 3c’s experienced anything similar?

Sorry for the long post, but thought it better to give you the full story 🙂

Evening JBB and hope you are well and did think your diabetes diagnosis was extremely soon after necrotising pancreatitis as normally you would have quite a time lag.Sometimes many years ( mine was 16 months) but of course dependent on severity of attack and in particular the location within the pancreas where the necrosis is most evident.
The pancreatic cells themselves will not recover but certainly you can get by with only 5% of your exocrine cells remaining ( for instance although I take Creon I reckon I could possibly get away without it if push came to shove).
It is possible to probably get decent BG control with basal only if you eat fairly low carb/ do exercise if you have some Beta cell production which is fairly likely and certainly having exogenous insulin can give your own endocrine cells some R and R to start producing again so anything is possible.
The best way is just to experiment and see what works or not and use your CGM to monitor different approaches and see what works best.

 

[JBB70]

Evening JBB and hope you are well and did think your diabetes diagnosis was extremely soon after necrotising pancreatitis as normally you would have quite a time lag.Sometimes many years ( mine was 16 months) but of course dependent on severity of attack and in particular the location within the pancreas where the necrosis is most evident.
The pancreatic cells themselves will not recover but certainly you can get by with only 5% of your exocrine cells remaining ( for instance although I take Creon I reckon I could possibly get away without it if push came to shove).
It is possible to probably get decent BG control with basal only if you eat fairly low carb/ do exercise if you have some Beta cell production which is fairly likely and certainly having exogenous insulin can give your own endocrine cells some R and R to start producing again so anything is possible.
The best way is just to experiment and see what works or not and use your CGM to monitor different approaches and see what works best.

Thanks Wendal,
It was a severe attack, at its worst my organs were shutting down and I had collapsed lungs.
I’ve only just found out about that after going to the doctors as I was really breathless and had blue lips apparently.
All ok now though with that, just pesky gallbladder giving me trouble!

They said it was the tail end that was dead when I was in hospital, and they were waiting to see if it formed a cyst or turned to jelly and disappeared on its own.

Unfortunately my consultant has been off sick so I fell off the radar for a while, but have been pestering them for weeks now.

I’m just too scared to eat now in case it triggers another flare up. One of the doctors I saw in SDEC was on the surgical ward when I was in hospital, and was surprised it still hadn’t been done. He described it as a ticking bomb, just waiting!!

 

[Wendal]

Thanks Wendal,
It was a severe attack, at its worst my organs were shutting down and I had collapsed lungs.
I’ve only just found out about that after going to the doctors as I was really breathless and had blue lips apparently.
All ok now though with that, just pesky gallbladder giving me trouble!

They said it was the tail end that was dead when I was in hospital, and they were waiting to see if it formed a cyst or turned to jelly and disappeared on its own.

Unfortunately my consultant has been off sick so I fell off the radar for a while, but have been pestering them for weeks now.

I’m just too scared to eat now in case it triggers another flare up. One of the doctors I saw in SDEC was on the surgical ward when I was in hospital, and was surprised it still hadn’t been done. He described it as a ticking bomb, just waiting!!

Hi JBB.
The Tail is where most of the exocrine cells are located whilst the Insulin producing (Beta cells are more evenly distributed through the pancreas as Islets of Langerhorns.
This is complicated further by the possible potential of non Beta islet cells to convert into insulin producing beta cells.
Which is why individual damage and how it affects us specifically can vary a lot.
Your other damage is wider than my own which again adds an extra layer and means extrapolation from one persons situation to another is difficult and fraught with differences.
However I totally understand your reluctance to eat as when I was recovering from my AP both before and after my gall bladder was removed I was paranoid about not wanting another attack so ate ultra low fat and was very restrictive.
In the end I saw a dietician as I was losing so much weight,had no energy and showing signs of EPI so took her advice to go on Creon but importantly take much more fat and carbs into my diet.
It really was transformative in my recovery to back feeling normal and then 12 months after that I got the diabetes diagnosis which after the initial reaction I took in my stride.
GL

 

[Wendal]

PS I did have a large pseudocyst but that resolved itself after a year

 

[everydayupsanddowns]

Glad to hear your situation, and BG levels have been improving @JBB70

All the best for a speedy, and successful Gall Bladder op 🙂

 

[JBB70]

Thank you, you all never fail to amaze me with your knoeledge!

I have spoken to my dietitian and she really wants me to try and eat, although she totally understands why I don’t want to.

Didn’t get the news i wanted from the consultant though.
I sm being put in a clinic to discuss having my op, but apparently there is s long waiting list.
I was told in hospital i woulfn’t be on a waiting list as it is potentially life threatening.
And the same consultant told me it wasn’t about waiting lists when i asked avout going private, he said it was about being well enough.

A lengthy email has been sent his way, worded with the guidance of a friend who is a nurse and used to dealing with consultants.
Lets hope they take notice.

 

[Wendal]

Thank you, you all never fail to amaze me with your knoeledge!

I have spoken to my dietitian and she really wants me to try and eat, although she totally understands why I don’t want to.

Didn’t get the news i wanted from the consultant though.
I sm being put in a clinic to discuss having my op, but apparently there is s long waiting list.
I was told in hospital i woulfn’t be on a waiting list as it is potentially life threatening.
And the same consultant told me it wasn’t about waiting lists when i asked avout going private, he said it was about being well enough.

A lengthy email has been sent his way, worded with the guidance of a friend who is a nurse and used to dealing with consultants.
Lets hope they take notice.

Hi JBB,
Good that you have spoken to dietician and had good advice.
Yep you need guidance from the Consultant as to whether the waiting for the op is due to you needing to recover more or just sheer demand.
When I was in hospital with my AP and the Consultant did his rounds and I raised the issue about going private he was not happy and said he would best doing the op and said I was better off in NHS.
As I was in the system I was happy enough to work to their timeline and I had my gall bladder removed 3 months after first being admitted and was just happy they could do the surgery whilst I still had the cyst

 

[JBB70]

Hi JBB,
Good that you have spoken to dietician and had good advice.
Yep you need guidance from the Consultant as to whether the waiting for the op is due to you needing to recover more or just sheer demand.
When I was in hospital with my AP and the Consultant did his rounds and I raised the issue about going private he was not happy and said he would best doing the op and said I was better off in NHS.
As I was in the system I was happy enough to work to their timeline and I had my gall bladder removed 3 months after first being admitted and was just happy they could do the surgery whilst I still had the cyst

Yes, if its because I’m not well enough I’m fine with that, I totally understand that it was too dangerous.

I slipped through the net though with the original consultant being off.

I really don’t wsnt to be at the back of the long queue though if i’m in danger.
The more flare ups I have will put my surgery back further if they do more damage to my pancreas and liver.

 

[JBB70]

My nurse friend also recommended getting in touch with PALS.
If i haven’t heard anything next week I will go down that route.

I hate making a fuss, I am so grateful for everything they have done so far, but this scares me.

 

[martindt1606]

Thank you, you all never fail to amaze me with your knoeledge!

I have spoken to my dietitian and she really wants me to try and eat, although she totally understands why I don’t want to.

Didn’t get the news i wanted from the consultant though.
I sm being put in a clinic to discuss having my op, but apparently there is s long waiting list.
I was told in hospital i woulfn’t be on a waiting list as it is potentially life threatening.
And the same consultant told me it wasn’t about waiting lists when i asked avout going private, he said it was about being well enough.

A lengthy email has been sent his way, worded with the guidance of a friend who is a nurse and used to dealing with consultants.
Lets hope they take notice.

Have they discussed how they will be removing the Gall Bladder? When they took mine out I had a "whipple" style operation. This allowed the surgeon to get hands on and see if i had any pancreatic issues as at that stage the scans and tests weren't conclusive, That is a big operation so I can understand why they need you to be well enough before scheduling. Before and during the operation I was private but immediately after the operation was transferred back into the NHS with the same team. Having had a second whipples with the same team a number of years later, the main benefit of going private was a private room, the main disadvantage post operation support - no dressings, no access to the community wound nurse....

 

[everydayupsanddowns]

Hoping you get a positive outcome from your email @JBB70

And some clarity about the most appropriate timing for your op.