Question for Creon Users please - Hypos caused by Pancreatic Insufficiency?

[LorraineP]

I’m confused and I’m hoping that other Creon users might be able to shine some light on my experience with pancreatic insufficiency and (possibly) gastroparesis.

Last year I was diagnosed with Pancreatic Insufficiency (PI) with an elastase result of 119, so not severe (yet). I was also diagnosed with gastroparesis (GP) after a gastric emptying test, although I wasn’t taking Creon at the time.

I had the usual symptoms of PI for years (without knowing I had it) and a couple of years ago the classic symptoms of gastroparesis started, i.e. feeling full quickly, vomiting and far too many hypos.

I’ve had to wait a long time to discuss the results with a gastroenterology consultant so at last I came to the top of the queue 10 days ago. He told me he doesn’t think I have GP after all (or if I do he thinks it’s very mild) and that all my symptoms were caused by my PI. He was very confident about this and said he had seen it before.

However I didn’t get time to ask him questions. I had arrived a few minutes early, he spoke very quickly and he had me out the door by the time my appointment was due to start. I wasn’t too worried about that because since finding the correct dose of Creon and adopting a low fat, low fibre diet 6 months ago my worst symptom of vomiting had stopped. The hypos were reduced in number too. That was all I cared about.

However the same old pattern has just started up again. Over the past few days my BG has been running low and to my horror I woke this morning feeling very sick. I struggled to eat my breakfast and less than an hour later I hypoed at 2.3 even though most mornings I spike after eating. BG still wouldn’t come up even after a carton of orange juice. I live alone so I broke the rules and used the glucagon emergency kit otherwise I would have gone unconscious.

I’ll probably have another 18 month wait to see a gastroenterologist again and my diabetic clinic don’t know enough about PI or GP to help me with my hypos (although they do their best). So I feel I have no choice but to ask other diabetics with PI if your condition affects you like this?

I’m not on any medication for GP by the way as my gastro felt that Creon had solved all my problems. I’m not so sure. From what I read, vomiting and hypos aren’t normally associated with PI so that’s why I want to ask others with the condition. I can’t go back and say he got it wrong, can I?

I don’t expect I’ll get many replies as so few people seem to have this combination of conditions.

 

[mikeyB]

I’ve got severe pancreatic insufficency due to pancreatitis. It doesn’t cause nausea or vomiting in me. (Or in folk on the pancreatitis forum) From a purely scientific viewpoint, I can’t see why Creon would stop vomiting, to be honest. It doesn’t start working till it’s in the small bowel. I’ve not noticed an increase in hypos either.

I don’t think it’s the PI causing your symptoms, but I can’t think what might be - that’s your consultant’s job. Go on, annoy him.

 

[khskel]

Same as @mikeyB. I can't say I've had a shedload of hypos due to the Creon but I do have to be more careful with bolus timings.

 

[LorraineP]

Thanks I thought that might be the answer. I think my worst symptoms probably improved because of my diet rather than Creon. I don't want to have gastroparesis but if I do have it then I'll have to grasp the nettle and annoy the gastro consultant!

 

[eggyg]

I have PI due to surgery, Creon tends to raise my BGs. I have been diagnosed with gastric dumping syndrome because of all the surgery I have had, the symptoms are sweating, fainting and vomiting and “ the other”! My gastro man said to treble my dose of Creon. I initially did that but got bunged up so reduced it a bit. On the whole it has worked as long as I don’t eat big meals. Cream and oily food are troublesome as well. I must admit my BGs don’t tend to drop, I don’t think, as I usually don’t have time to check them as I am usually on the floor! As @mikeyB said keep bothering the gastroenterologist until you have answers. Good luck and keep taking the Creon.

 

[mikeyB]

Great, all the Creonistas are gathering

 

[LorraineP]

We should have our own handshake 🙂 But I feel like a gatecrasher as I haven't had pancreatic disease or surgery like everyone else. Scans confirmed everything was normal except for my tiny wee shrivelled up pancreas probably atrophied from long term lack of insulin production.

No one else seems to have my set of symptoms so sometimes I feel like Norma No Mates

However I found a Trend UK leaflet on the subject of PI and diabetes. Buried away in the text it briefly refers to nausea, vomiting and abdominal distension being symptoms of PEI. It also says the following
"PERT can improve HbA1c by up to 11mmol/mol (1%; Mohan et al, 1998) and a study in people with diabetes associated with exocrine function demonstrated a reduction in episodes of mild to moderate hypoglycaemia" I do believe that before treatment with Creon I was having more hypos so that's why I was worried about this pattern returning.

I'm determined to find out which condition is causing my worst symptoms and get them stopped! I'll give an update if I'm successful 🙂

 

[Davein]

I’m confused and I’m hoping that other Creon users might be able to shine some light on my experience with pancreatic insufficiency and (possibly) gastroparesis.

Last year I was diagnosed with Pancreatic Insufficiency (PI) with an elastase result of 119, so not severe (yet). I was also diagnosed with gastroparesis (GP) after a gastric emptying test, although I wasn’t taking Creon at the time.

I had the usual symptoms of PI for years (without knowing I had it) and a couple of years ago the classic symptoms of gastroparesis started, i.e. feeling full quickly, vomiting and far too many hypos.

I’ve had to wait a long time to discuss the results with a gastroenterology consultant so at last I came to the top of the queue 10 days ago. He told me he doesn’t think I have GP after all (or if I do he thinks it’s very mild) and that all my symptoms were caused by my PI. He was very confident about this and said he had seen it before.

However I didn’t get time to ask him questions. I had arrived a few minutes early, he spoke very quickly and he had me out the door by the time my appointment was due to start. I wasn’t too worried about that because since finding the correct dose of Creon and adopting a low fat, low fibre diet 6 months ago my worst symptom of vomiting had stopped. The hypos were reduced in number too. That was all I cared about.

However the same old pattern has just started up again. Over the past few days my BG has been running low and to my horror I woke this morning feeling very sick. I struggled to eat my breakfast and less than an hour later I hypoed at 2.3 even though most mornings I spike after eating. BG still wouldn’t come up even after a carton of orange juice. I live alone so I broke the rules and used the glucagon emergency kit otherwise I would have gone unconscious.

I’ll probably have another 18 month wait to see a gastroenterologist again and my diabetic clinic don’t know enough about PI or GP to help me with my hypos (although they do their best). So I feel I have no choice but to ask other diabetics with PI if your condition affects you like this?

I’m not on any medication for GP by the way as my gastro felt that Creon had solved all my problems. I’m not so sure. From what I read, vomiting and hypos aren’t normally associated with PI so that’s why I want to ask others with the condition. I can’t go back and say he got it wrong, can I?

I don’t expect I’ll get many replies as so few people seem to have this combination of conditions.

I have been diagnosed with AIP and have taken Creon for a few years and can say I've never experienced vomiting caused by it and have as yet managed to avoid BGs going really low, although I've only been using insulin for a few weeks. The only times I experience vomiting is during the early onset of another pancreatitis episode.
But you're right about the consultant appointments- talk too quickly etc. I did manage to get a question to my gastro consultant asking him if I could see a dietitian. In answer to which I got a short lecture on how his department could not afford the services of one but I could always go private!

 

[LorraineP]

Thanks Davein, but just to be clear I'm not blaming Creon for my sickness or my hypos.

It's more that I can't get an answer from doctors as to whether pancreatic insufficiency or gastroparesis is causing my symptoms. My gastro says its the PI and I'm doubting his conclusion as I think it's gastroparesis. So that's why I wondered if other people with PI had sickness and hypos before treatment with Creon. Maybe I wasn't clear enough about that.

 

[Davein]

Thanks Davein, but just to be clear I'm not blaming Creon for my sickness or my hypos.

It's more that I can't get an answer from doctors as to whether pancreatic insufficiency or gastroparesis is causing my symptoms. My gastro says its the PI and I'm doubting his conclusion as I think it's gastroparesis. So that's why I wondered if other people with PI had sickness and hypos before treatment with Creon. Maybe I wasn't clear enough about that.

Probably me not reading your thread closely.

 

[Ref]

Hi - just wondering if you are taking a proton pump inhibitor (PPI) such as omeprazole or lansaprazole. Most people taking creon also need to take a PPI as one of the functions of the pancreas is to neutralise the acidity of the output from the stomach so if you don't then you are more likely to vomit.

PPIs also help creon work more effectively.

It could be the gastroparesis causing the hypos - I have a similar problem since my surgery. When on MDI I had to take my bolus insulin in two or three injections. I'm now on a pump.

Finally, the pancreas is a tricky beast and pancreas problems really need to be referred to a pancreas specialist instead of a general gastro - it could make a big difference.

Hope this helps
Andy

 

[LorraineP]

Hi Ref thanks for that information. I didn't know the pancreas neutralised acid as well. I was put on Omezaprole and other PPI's last year but I blamed them for making my sickness worse so I stopped them. I've learned more from support forums than doctors because appointments are so short and rushed!!

 

[mikeyB]

Hardly any folk on the pancreatitis forum, all of whom take Creon, take a proton pump inhibitor as well. Ask ‘em Andy. If you think about it, Creon replaces the stuff that the pancreas should produce, so it neutralises the stomach acid in the duodenum just like nature intended. I’m not convinced that a lower level of acid coming down from the stomach is physiologically necessary. It isn’t natural, for sure.

I got a dangerously low magnesium level taking Omeprazole, so no thanks.

 

[Davein]

Hardly any folk on the pancreatitis forum, all of whom take Creon, take a proton pump inhibitor as well. Ask ‘em Andy. If you think about it, Creon replaces the stuff that the pancreas should produce, so it neutralises the stomach acid in the duodenum just like nature intended. I’m not convinced that a lower level of acid coming down from the stomach is physiologically necessary. It isn’t natural, for sure.

I got a dangerously low magnesium level taking Omeprazole, so no thanks.

And up I pop Mike. I was prescribed 40mg Omeprazole after having a serious acid reflux problems. I have also been on Creon for the past four years. I'm having a review of all my meds in a month's time and I will put your argument forward. If I can safely get away with taking less pills then I would be much happier.

 

[mikeyB]

I do take treatment for acid reflux, actually. Ranitidine. I was talking more generally, in the absence of any other problems, it’s not necessary. It might not be a good idea stopping treatment

 

[Davein]

Don't worry Mike, even though I have a great respect for your knowledge and help, I would never stop medication without discussing first with my GP. I made that mistake once when I stopped taking the Creon and it resulted in severe malabsorption? quick quickly!.

 

[mikeyB]

Aye, Davein. I don’t take much Creon, because my neurological problems cause constipation, because everything is slowed down. So the question is, if I don’t have steatorrhea, and everything moves sluggishly, are the vitamins being absorbed? I honestly don’t know the answer. Nobody on the pancreatitis forum seems to know either.

 

[eggyg]

I’ve never taken, or been offered any type of PPI, only been offered refunds, but I think maybe that’s something different! 😉. What I really was going to say was, when I had my surgery my surgeon, who, was very posh, told me that “ the pancreas is a bit of a bugger!” He was right! 😱

 

[pottersusan]

I cant say I've noticed hypos linking to my shed loads of Creon - but who knows! (Oh to be bunged up)

 

[Ref]

And up I pop Mike. I was prescribed 40mg Omeprazole after having a serious acid reflux problems. I have also been on Creon for the past four years. I'm having a review of all my meds in a month's time and I will put your argument forward. If I can safely get away with taking less pills then I would be much happier.

It may be that Omeprazole didn't suit you - it made my wife feel very sick so she is now on Lansaprazole. I strongly recommend you see a pancreas consultant