Hi all, new here. Looking for anyone that has Diabetes due to acute pancreatitis (non alcoholic) followed by gallbladder removal.

[Mummy Fox]

Hi all.
I suffered from what was thought to be 'trapped wind' over quite a few years. The pain was excruciating but would only last for a short time of 20 minutes or so but I would be exhausted afterwards in a clamny cold sweat. It would occur roughly every 3 to 4 months. Then one day it just wouldn't go. Locum gp came out and said probably trapped wind but if not better tomorrow, call an ambulance!!
Long story, abridged version. A&E, diagnosed with acute pancreatitis due to gall stones that I didn't know I had! Operation to remove gallbladder not done for a few months to allow everything to settle down. Surgeon that took it out couldn't believe that I hadn't had a lot more issues based on the state of the gallbladder.
Nobody at this stage mentioned the high likelihood of diabetes due to damage to pancreas. Within 6 months, diagnosis made, but why was this diagnosed as type 2 as opposed to type 3c?
Since this diagnosis, I have had bouts of what have felt like gallstones again, same pain with severe vomiting after eating. In and out of A&E, CT scan clear. GP thought build up of sludge in the bile duct, which actually made a lot of sense but woupd need a special MRI scan to confirm. The problem was, that you could only book a special MRI scan in advance so by the time I had it, many werks later, there was no evidence of sludge. I seem to have been given up on since then but having had another episode very recently although nit quite as painful, I have decided to find someone that has similar problems to see what can be done to help. I'm aware that a high fat diet can cause this but have avoided whenever I can. I have read about pancreatatic enzymes and wonder if I need these to break my food down more but no little about that yet.
Any ideas, similar experiences or help would be gratefully appreciated. I'm 59 now and really want to get this sorted to avoid these episodes happening again in the future. Sorry it is such a ling initial post. Many thanks x

 

[Proud to be erratic]

Hello @Mummy Fox,

Hi all.
I suffered from what was thought to be 'trapped wind' over quite a few years. The pain was excruciating but would only last for a short time of 20 minutes or so but I would be exhausted afterwards in a clamny cold sweat. It would occur roughly every 3 to 4 months. Then one day it just wouldn't go. Locum gp came out and said probably trapped wind but if not better tomorrow, call an ambulance!!
Long story, abridged version. A&E, diagnosed with acute pancreatitis due to gall stones that I didn't know I had! Operation to remove gallbladder not done for a few months to allow everything to settle down. Surgeon that took it out couldn't believe that I hadn't had a lot more issues based on the state of the gallbladder.
Nobody at this stage mentioned the high likelihood of diabetes due to damage to pancreas.

While it is disappointing that no-one mentioned the possibility of D, I'm not overly surprised. I am constantly disappointed to find Health Care Practicioners (HCPs) who seem to disengage their brains and don't join some dots

Within 6 months, diagnosis made, but why was this diagnosed as type 2 as opposed to type 3c?

Sadly, even though there are various possibilities for Diabetes to occur without either the autoimmune criteria that result in a diagnosis of T1, c. 10% of the diabetic community or insulin resistance which accounts for T2, c. 90%, there are glaring occasions, such as pancreatic surgery, which even after that people end up lazily attributed to T2 or T1. You, unfortunately are such an example.

Since this diagnosis, I have had bouts of what have felt like gallstones again, same pain with severe vomiting after eating. In and out of A&E, CT scan clear. GP thought build up of sludge in the bile duct, which actually made a lot of sense but woupd need a special MRI scan to confirm. The problem was, that you could only book a special MRI scan in advance so by the time I had it, many werks later, there was no evidence of sludge. I seem to have been given up on since then but having had another episode very recently although nit quite as painful, I have decided to find someone that has similar problems to see what can be done to help. I'm aware that a high fat diet can cause this but have avoided whenever I can. I have read about pancreatatic enzymes and wonder if I need these to break my food down more but no little about that yet.

I can offer no help or comments about your symptoms and your experiences. But I truly sympathise, I had a close relation who suffered similarly for years and she lived with a very restricted and bland diet.

But there is a Pancreatic Enzyme Replacement Therapy (PERT) which specially addresses the sort of symptoms that arise from pancreatic damage and consequent impaired digestive enzymes production. I should add that PERT is not uniquely associated with identified pancreatic damage - people are prescribed PERT medications for other reasons.

There were 4 slightly different medications for PERT; I think one may now be discontinued. But I believe that Creon capsules are the most common PERT meds and they are often prescribed in conjunction with a PPI such as Omneprazole. Both help with dealing with the digestion of fats, in particular. The vast majority of digestive enzymes are created by one's pancreas; a few come from saliva and I find those are sufficient to help digest Jelly Babies, my first stop hypo treatment.

Any ideas, similar experiences or help would be gratefully appreciated.

You don't say what medications you are now on, post surgery. You DO NOT have to share if you would prefer not to.

If as a T3c you are not insulin dependent that would make you very rare (!) but not completely alone. Your categorisation as T3c presumes you do actually have diabetes - do you know your HbA1c, which is obtained from a blood sample and laboratory analysis? This would normally be a number greater than 48 mmol/L.

I'm 59 now and really want to get this sorted to avoid these episodes happening again in the future. Sorry it is such a ling initial post. Many thanks x

Fuller knowledge of your meds and HbA1c will help others to possibly provide comment and advice for you. Absolutely no apology needed for a longer post.

I fully understand your desire (need) to get this sorted; I hope I've added a little to your knowledge and that you can progress to a resolution quickly. Do keep asking questions; no question is stupid and we've all been new to this at one time - so happy to explain if asked. I would discuss with my Surgeon and GP whether PERT would help. If you ask you can obtain a copy of the Surgical notes, which might help you understand what has actually been removed and what consequent internal rearrangement took place.

I'm tagging @eggyg and @soupdragon who are also T3c from pancreatic damage.

 

[soupdragon]

Hi and welcome @Mummy Fox
I'm Type 3c following acute pancreatitis caused by gallstones (also unaware of those beforehand).

Unlike you I was treated for diabetes from the beginning because I had extensive pancreatic damage. I was being treated with insulin from the start of a lengthy hospital stay so it was clear that I was Type 3c. The hospital I was treated in is a specialist pancreatic centre so the endocrinology department sees quite a few 3cs.

Sorry to hear that you're still having bouts of pain. Are you under the care of a hospital HPB team for your pancreatic issues? If not it might be worth pushing for a referral as they could also help with enzyme replacement (PERT) if needed.

It would be helpful for us to know if you are on any medication for diabetes and if you know your HBA1C.

Wishing you all the best. Do let us know if you have any questions.

 

[everydayupsanddowns]

Welcome to the forum @Mummy Fox

Glad you’ve met some of our friendly 3cs already. @eggyg is another who had a lengthy faff trying to get the term 3c understood by non-specialist HCPs - so you aren’t alone.

I think you will be offered Creon if the damage to your pancreas is sufficuently substantial. This helps with the digestion of fats and helps keep your stools in good shape from what I can tell.

There’s a little about type 3c here which may give you a few pointers

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

 

[Mummy Fox]

Hi and welcome @Mummy Fox
I'm Type 3c following acute pancreatitis caused by gallstones (also unaware of those beforehand).

Unlike you I was treated for diabetes from the beginning because I had extensive pancreatic damage. I was being treated with insulin from the start of a lengthy hospital stay so it was clear that I was Type 3c. The hospital I was treated in is a specialist pancreatic centre so the endocrinology department sees quite a few 3cs.

Sorry to hear that you're still having bouts of pain. Are you under the care of a hospital HPB team for your pancreatic issues? If not it might be worth pushing for a referral as they could also help with enzyme replacement (PERT) if needed.

It would be helpful for us to know if you are on any medication for diabetes and if you know your HBA1C.

Wishing you all the best. Do let us know if you have any questions.

I neglected to mention that I am insulin dependant now. Originally on Metformin tablets and they worked well for a couple of years. Slow release Tresiba. 89 units before bed. Rapid insulin Novarapid before meals roughly 8 to 12 units. I was also doing post meal adjustments. I had got into a bad habit of relying on the libre and injecting after a meal. Really trying to make much better effort now. My HBA1C was mid sixties but dropped to mid 50's 3 months later, but recent check was back to mid 60's. I am currently researching as much as I can about PERT before next gp appointment. I definitely think I have a fatty/digestion issue. I originally thought that my gp had solved the abdominal pains with a 'build up of sludge in the bile duct' but never managed to have the right scan at the right time to provide any evidence of it. How do the experts define a 3c diagnosis v a type 2 diagnosis. Yours seems very clear cut. I think my next referral is to a liver consultant as suggested by a gastroenterologist. I seem to being passed from pillar to post and because of the lengthy delays due to Covid it is taking forever. I didn't even know that a HPB team existed! Will be a lot of questions at my next gp appointment. Thank you so much for all the help and guidance. I wish I'd investigated all this much sooner, I was relying heavily on the medical profession. X