Confused about situation

[Anxious 63]

hi there everybody i did post a few times about my problems in last few months , briefly i will say again i am type 2 i had pneumonia , c -diff and attacks of necrotising pancreatitis last winter in hospital for 3 months discharged twice but re admitted due to vomiting etc , i was stabilised but recently my blood sugars have been high , been very constipated recently maybe due to pain killers seen diabetic team and they have taken bloods , they think i may have to go on insulin because 70 per cent of pancreas is damaged the hospital said and glicazade and metformin not helping insulin, consultant on follow up said i have low faecal count which has cause endocrine and exocrine insufficiency , they put me on creon etc , but i am very scared and feel terrible been to a/e they just say see gp and wait for bloods etc , i already have bad anxiety making it even worse , what should i do i feel worse when i eat , its a nightmare cannot sleep much , cant eat and no toilet

 

[Drummer]

Your situation seems far more like type 3something - there are different versions depending on how you got there - but really only someone with medical knowledge can be of much help.
If your pancreas is so damaged then just using common sense you need to replace the things which a healthy pancreas supplies, but it is your consultant who should be sorting you out, and I suggest contact with them should be first on your list to get whatever you might need prescribed.
Going by many reports GP surgeries are still under pressure, though contacting the surgery and requesting an alert of your problems to your consultant might work as it shifts the responsibility off them.

 

[Sarahp]

Creon can cause chronic constipation if the dose is too high (been there myself), as drummer says you really do need to contact your surgery or consultant as soon as possible for support around tweaking the dose to try and ease things and a gentle laxative or stool softener might be needed for a short period to help you.

 

[Pumper_Sue]

the hospital said and glicazade and metformin not helping

I'm not surprised, as far as I know glicazade should not be prescribed to people with type 3c diabetes. All it does is make the pancreas shove out more insulin and as you have a very defunct pancreas it aint going to work.

After having a quick skim through your previous posts regarding the amount of creon you are taking I would suggest you are on too much. I felt dreadful on a higher dose and went right back to basics. Only taking 2 x 25000 per meal and adding 1x10,000 if a very fatty meal. After making that change myself the difference in my health has been unbelievable.
Make sure you take a couple of mouthfuls of food with some water and then take the creon.

 

[everydayupsanddowns]

Sorry to hear about the confusing situation you are experiencing @Anxious 63

It does sound like you have Type 3c diabetes, which is usually treated in a similar way to T1, but with pancreatic enzyme replacement.

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

We have a few members with the same classification (if not the same root cause) @eggyg @Proud to be erratic @Hepato-pancreato

 

[Anxious 63]

thanks everyday i should learn maybe tuesday whether i need insulin , they think i will be put on it i think its because the pancreas is damaged up 70 percent, the gliclazide are not stabilising BS the diabetic team at Manchester Royal told me gliclazide was the best option for high BS , im not sure what to believe anymore im at my wits end with it all , my anxiety and mood is all over the show im at rock bottom

 

[Drummer]

thanks everyday i should learn maybe tuesday whether i need insulin , they think i will be put on it i think its because the pancreas is damaged up 70 percent, the gliclazide are not stabilising BS the diabetic team at Manchester Royal told me gliclazide was the best option for high BS , im not sure what to believe anymore im at my wits end with it all , my anxiety and mood is all over the show im at rock bottom

Try not to be too despondent as at least you have an appointment in the very near future and hopefully you will get insulin and the creon dose sorted out, which should make you feel a lot better.

 

[Anxious 63]

thanks drummer , does anybody knowq anything about low faecal elaste which is a stool test apparently , the doctor at the hospital says that it indicates and contributes to endocrine and exocrine pancreatic insufficiency , he said normal range is around 200 mine was about 15 , he then waffled on about lanzaprole and about taking more creon

 

[Leadinglights]

thanks drummer , does anybody knowq anything about low faecal elaste which is a stool test apparently , the doctor at the hospital says that it indicates and contributes to endocrine and exocrine pancreatic insufficiency , he said normal range is around 200 mine was about 15 , he then waffled on about lanzaprole and about taking more creon

This link may help answer you question. https://www.bsuh.nhs.uk/documents/pancreatic-exocrine-insufficiency-pei/

 

[Anxious 63]

Thanks leading yes i had a look it what they did tell me , i do take the creon but for me i dont think its worked very well but im going to find out exactly what is going on when i finally get to speak to somebody who has the test results , but unfortunately with the shambolic state of the NHS and the country at the moment who actually knows when this will be

 

[rebrascora]

I wonder if other Type 3c forum members could give you the benefit of their experience with creon. I know you say you are Type 2 but in reality you will be Type 3c since you have 70% damage to your pancreas. I believe it is a question of trial and improvement with the dosing of creon until you find what works for you but maybe some guidance from other Type 3cs would give you confidence to experiment so that you can find the balance for yourself.
@Proud to be erratic @eggyg @soupdragon Hopefully one of them will be able to give some input and reassurance.

 

[Proud to be erratic]

thanks drummer , does anybody knowq anything about low faecal elaste which is a stool test apparently

I'm not familiar with the 'low faecal elastase' test specifically. But while being investigated for what seemed to be malabsorption (and made carb counting very unpredictable) my Gastroenterologist was very reluctant to do any faecal tests. He told me (face to face consult) that while they work well for the bowel cancer checks, which means looking for specific cancer markers, more generic faecal tests threw up false negatives and false positives - leading to confusion rather than conclusion.

, the doctor at the hospital says that it

Presumably 'it' is elastase levels

indicates and contributes to endocrine and exocrine pancreatic insufficiency , he said normal range is around 200 mine was about 15

My problem was eventually diagnosed from 3 targeted blood tests; 2 relatively routine, the 3rd needed financial approval but led to a specific antibiotic (which again needed financial approval) and thus resolution.

, he then waffled on about lanzaprole

Superficially Lansoprazole deals with acidity in the digestive system. It seems to be an over the counter medication available from any pharmacy. I am prescribed Omeprazole (2 x 20mg capsules daily) which not only deals with heartburn and indigestion, as does Lansoprazole, but apparently is more effective in dealing with intragastric acidity. Managing such acidity is one of the functions of one's pancreas.

and about taking more creon

I note @Pumper_Sue has commented earlier about Creon. I looked back at some of your previous postings, but couldn't find what quantities of Creon you were taking; would you mind sharing that detail again please. Perhaps along with a list of all other meds - I wouldn't rule out the cocktail principle: the more medications the more complex the cocktail side effects become.

If only proving that we are all different, I was advised by 2 dieticians and my HPB surgical team, to steadily increase my Creon, with each saying you cannot overdose on Creon. I now take c.30+ x 25,000 strength capsules daily and am not aware of any problems or side effects. Even at least 1 capsule with a milky or creamy coffee. I do drink lots of water with my Creon; at least 1 full mug and usually a 450ml glass.

My T3c is a result of a total pancreatectomy in Feb 20; so although my intro to diabetes was abrupt, I don't have the complication of a residual part pancreas adding partial releases of hormones into my blood. Do you have details of which bit of your pancreas is damaged? I note you say 70% damaged. Is that verified from scans and are you under an Endocrinologist? I had 2 previous Endos, who I never met (lock down problem) but who clearly were adrift from the problems of no pancreas. I was lucky enough to get a referral to the Oxford Centre for Diabetes, Endocrinology and Metabolism (OCDEM) who are pioneering pancreatic transplants and have provided excellent guidance over the last 12 months. Getting a good Endo is essential; however well-intentioned your Doctor at the hospital might be (was he the lead Endocrinologist or a Registrar?), getting an expert to the heart of your pancreatic challenges is vital!

I'm not sure how much other help I can be; I know very little about pancreatitis. But I do agree you are a T3c now, rather than T2. That distinction might seem trivial, but T3cs are usually treated as T1s in general terms and should bring you more direct benefits from Hospital support as well as technology now and in the future.

 

[Anxious 63]

Thank you very much erratic for your detailed thoughts yes the low faecal test was blood test done in april , together with colonoscopy and gastroscopy which indicated diverucultits benign polyps and gastritis on gastroscopy , they said i had cysts on pancreas whilst i was in patient for 3 months last winter , they said 70 per cent damage to pancreas they did not say what part it was , i am now currently 70,000 creon per meal with lanzaprole , on metformin 2000mg and glicazade 160mg a day, on co-codamol effervescent 4to 6 a day , also on lorazepam and an anti depressant , thiamine , folic acid , avortstatin , candesartan,, tamalousin , pregablin and lactouluse , i had ct scan of abdomen and currently under a pancro diabetic specialist at Manchester Royal

 

[Proud to be erratic]

Thanks leading yes i had a look it what they did tell me , i do take the creon but for me i dont think its worked very well but im going to find out exactly what is going on when i finally get to speak to somebody who has the test results , but unfortunately with the shambolic state of the NHS and the country at the moment who actually knows when this will be

I'm afraid I have had to be quite robust in steadily pestering various people to provide specific answers to my problems. After leaving hospital in Feb 20, I've come under 6 different 'specialists':

HPB surgical team - who to their complete credit have kept me on their books for over 2 years, monitoring my progress.
Oncology - my surgery was dealing with pancreatic cancer.
Gastroenterology - I had malabsorption and Urgency incontinence for about 18 months.
Urology - still got problems; had a definitive diagnosis only last week (should have been made in Dec 20 if the original consult had sought follow up tests which took only 20 minutes last week) (the lack of that was blamed on Covid - I blame it on laziness and I didn't know the evaluation test existed; I foolishly trusted the Dec 20 report) and now a promise of a prostate 'rebore' in 3+ months. Fingers crossed.
Dieticians - both from my original DSN clinic (hopeless - clearly couldn't deal with something out of the ordinary) and from MacMillan (brilliant, pinpointed the problem).
Endocrinolgy - finally feeling I'm being helped, a lot. I'm doing a Face to Face DAFNE course in October thanks to my current Endo.

With each of these I have gleaned the email address of the actual person and the phone no for each Secretary to the Consultant. With that contact knowledge I politely 'keep them on my case'. I try to email them IN ADVANCE of a meeting, particularly if the problem continues; this provides an update and what I've tried from the previous consult. It also minimises losing time while they catch up on what was previously said etc; it ensures they've read my case notes (albeit very quickly) before we meet or talk on the phone. Invariably I'm thanked for my email - I feel it helps them to help me; and it also tells them I'm like a dog with a bone and won't be letting go until the bone has gone! It's not easy - but I feel I know what is next and roughly when. It is my body, my challenge, my interest to gently hassle the experts!

 

[Anxious 63]

Thanks again Erratic yes totally agree with you regarding these doctors , specialists etc , you have to keep pestering them i will tell you of a couple of things that happened to me in hospital , when i was being treated for acute attack of pancreatitis they said they found a blood clot on my spleen, so i said what happens with that , they said oh we treat it with some meds for a few month, a fortnight passed and nothing happened so i asked again about the spleen , oh he said no dont worry about that its only a minor issue, i thought about what he said and i was very confused you said you were going to treat it but now your not, nothing else was done , i then also complained about having trouble passing water , oh we will do scan but we dont think anything major , had urology scan not much wrong here , then a few days later i got tablets for enlarged prostrate , again i knew something was wrong but they denied it and only when they did investigate did they find a problem , its hard to have confidence in the system i fear

 

[Proud to be erratic]

Helpful info, thanks.

Thank you very much erratic for your detailed thoughts yes the low faecal test was blood test done in april , together with colonoscopy and gastroscopy which indicated diverucultits benign polyps and gastritis on gastroscopy , they said i had cysts on pancreas whilst i was in patient for 3 months last winter , they said 70 per cent damage to pancreas they did not say what part it was

There will be a fairly detailed surgical or out-patients report from the procedures. Do you have those? If not ask your Gp (by email, if contacting them by phone is difficult) for copies and see if there is more precise info.

, i am now currently 70,000 creon per meal

70,000 is under 3 x 25,000 capsules - so far from a lot for me. At risk of TMI do you get visual evidence of sensible stool colour and texture? You can Google for such info!

with lanzaprole , on metformin 2000mg and glicazade 160mg a day, on co-codamol effervescent 4to 6 a day , also on lorazepam and an anti depressant , thiamine , folic acid , avortstatin , candesartan,, tamalousin , pregablin and lactouluse ,

Yes, I sort of suspected this list! Each medication has its own characteristics and side effects - which apply (more or less) when taken in isolation. But the cocktail of chemicals can create lots of conflicts and unanticipated side effects. It would help if you could get a review of these.

Elsewhere you've said you are anticipating being placed on insulin. Who has promised this and when? Do you have contact details so you can, politely but robustly chase them? That should replace the Glic, which is probably unnecessary.

i had ct scan of abdomen and currently under a pancro diabetic specialist at Manchester Royal

When was your CT scan and do you have the written report? What conclusions?

Pancro D Spec at Manchester Royal sounds good. Do you have contact details? When are you next scheduled to see/speak with them? Can you politely chase them - explaining that you are in difficulty today!

Notwithstanding the post Covid backlog, the system can be responsive and fairly prompt - or tell you when they will react. Armed with that knowledge you can either accept their timescale or politely say 'not good enough - need help now'.

 

[Proud to be erratic]

Thanks again Erratic yes totally agree with you regarding these doctors , specialists etc , you have to keep pestering them i will tell you of a couple of things that happened to me in hospital , when i was being treated for acute attack of pancreatitis they said they found a blood clot on my spleen, so i said what happens with that , they said oh we treat it with some meds for a few month, a fortnight passed and nothing happened so i asked again about the spleen , oh he said no dont worry about that its only a minor issue, i thought about what he said and i was very confused you said you were going to treat it but now your not, nothing else was done , i then also complained about having trouble passing water , oh we will do scan but we dont think anything major , had urology scan not much wrong here , then a few days later i got tablets for enlarged prostrate , again i knew something was wrong but they denied it and only when they did investigate did they find a problem , its hard to have confidence in the system i fear

Yes, I understand the confidence aspect, which is why I try to keep track of where each problem has got to! Then pester.

 

[Anxious 63]

The ct scan was at trafford not received results yet , the first one was at north manchester in patient last winter , did have report but lost it , wqas told by consultant at the royal that he would have another appointment and also get pancreatic nurses to phone me , nothing yet spoke to his secretary she said wqe are 8 month behind but wqill put you down as urgent and get somebody to phone you soon hopefully , expecting a phone call from diabetic team at the royal this week regarding insulin

 

[soupdragon]

thanks drummer , does anybody knowq anything about low faecal elaste which is a stool test apparently , the doctor at the hospital says that it indicates and contributes to endocrine and exocrine pancreatic insufficiency , he said normal range is around 200 mine was about 15 , he then waffled on about lanzaprole and about taking more creon

Hi @Anxious 63 and thanks for the PM.

I'm another Type 3c caused by necrotising pancreatitis. I left hospital 3 years ago after a 6 month stay.
I don't have much pancreas left so have been on Creon since the moment I started trying to eat in hospital. I've also been on insulin since the start.

PEI (pancreatic enzyme insufficiency meaning that Creon is needed) is at levels below 200, severe EPI is below 100. Low levels mean that you're not producing enough lipase, amylase and protease to digest your food, which will lead to you losing weight if you're not taking Creon to provide those enzymes.

I've also been taking lansoprazole from the beginning. This is needed because the pancreas also produces sodium bicarbonate, which neutralises stomach acid. Without that there is likely to be too much stomach acid. I know I do notice if I miss a dose. I understand it makes Creon more effective (which would make sense because the pH would be correct for the enzymes to work in the small intestine).

I am now taking lower doses of Creon than I did in the early days. Still have PEI but not severe PEI.

Just wanted to say that it took a long time for the inflammation of my pancreas to calm down. I had an endoscopic ultrasound 6 months after I left hospital (which finally confirmed that gall bladder issues caused my pancreatitis) and I still had pancreatitis at that point. I still had pain for a long time after that.
I remember how difficult it was to eat for a long time. Sitting down to try to eat was horrible, causing a lot of pain and leaving me feeling sick. It was also very difficult to find foods that I could tolerate - I had a lot of soup! I kept going because I wanted to get rid of the feeding tube, which was removed 3 months after I left hospital.

I'm treated by the endocrinology department at the hospital where I was treated for pancreatitis (which is a specialist pancreatic centre) so they see a lot of Type 3cs. I'm also still under the HPB department for long term follow up for the pancreatitis, led by the dieticians who support with the use of Creon. It is a bit of trial and error with Creon doses. I think the first suggestion was 2 x 25 000 capsules with a meal and 1 with snacks and to work up from there. I found that while the pancreas was still inflamed it was very difficult to balance having enough Creon with trying to avoid constipation. I tried really hard to avoid constipation because that caused a lot of pain while the pancreas was still inflamed.

If you are not still seeing the HPB department I would suggest asking for a referral to an HPB dietician for help with Creon doses. You do need some specialist help. You should also have longer term follow up to check your levels of vitamins and minerals

I really feel for you. It's a pretty miserable time but it can get better. I now eat pretty normally.

In terms of insulin, as I mentioned, I've been on it from the start. You may find that it makes eating easier because you don't have to worry so much about your food raising your blood sugar, which when you're struggling to eat is another challenge. If you don't have much pancreas left it sounds likely that you will need it.
It'll be an adjustment but there are lots of us here to help you.

Good luck with your appointment tomorrow.
Do let us know how it goes.

 

[Anxious 63]

Thanks soupdragon for replying i can identify wqith alot of your problems , i had my gall bladder removed 16 years ago which also caused mild pancreatitis , but last winter when i had my acute attack of pancreatitis i also had pneumonia i was in a terrible state in hospital for 3 months , i still have problems eating so i too have soup and light stuff under a new team now at Manchester Royal with specialist HPB team, hopefully they might have some answers , i think im going to end up i on insulin vey soon. thanks for your message and summary , i will keep you updated thanks