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Exocrine Pancreatic Insufficiency

sarahdennis87

sarahdennis87

Active Member
Messages
25
Location
Scarborough
Type of diabetes
Type 1
Treatment type
Pump
hello

Does anyone here have exocrine pancreatic insufficiency? Just diagnosed with it in December. I’m type 1, almost 16 years strong!

Struggling to control EPI. Was on creon 25000, taking 10 with meals 5 with snacks. Wasn’t working and making me vomit. Changed to Nutrizym 22, taking 6/7 with meals 4 with snacks. Still not working but thankfully no vomiting. I’m just not sure how to control it and I have zero support. Currently waiting on an appointment with my gastro
 
Hi Sarah
Sorry to hear about your issues especially in one so young. I am 60 years of age and 7 years ago I had a distalpancretectomy due to a mucinous cystic neoplasm. Afterwards i had exocri epancreatic insufficiency and went on to Creon for life. I take 1 2500 pill with meals. I only developed Diabetes in 2017 being treated as T2 because I was able to reduce my HBA1c significantly with strict diet. Atm I am doing really well.
Can I ask who put you on 10 Creon Pills and how what led to your diagnosis and how much follow up do you get? You obs don't have to answer if you prefer. I just think the dosage seems very high.
 
@sarahdennis87 I would just add that at my insistence I saw an Endocronologist not long after I was dx Diabetic because common sense told me if I didnt have a complete pancreas I might not be producing enough insulin. He agreed but be ause ofmy tight diet control and low HBA1c he is happy ro leave me be unless (until in his words) I drift into diabetic numbers and then I will be put straight on Insulin.
 
@PenguinMum my gastro dr started me on 4 creon with meals 2 with snacks and told me to increase if they weren’t working. All the previous symptoms were still there so therefore with GP advice I kept increasing. I was diagnosed by a faecal elastase test, first was 96, second was 101, currently awaiting results from a third test. I’ve just had a ct scan and an ultrasound but awaiting the results for those too. My GP is aware I am on a high dose of enzymes and no relief. He is not 100% sure that I have the right diagnosis but until the results come back we don’t know what to do. I was last seen by my gastro in December and was told I’d be seen again in 3-4 months. My GO has contacted gastro to try and get an appointment ASAP due to all the issues I am having. I’ve also had to get signed off work for two months because the symptoms are just so bad. I’m confined to my house 95% of the time, only leave to drop my daughter at preschool. It’s really bad
 
Hi again @sarahdennis87 to be perfectly honest this is beyond any GPs knowledge. I think you now need either an urgent gastro appt or more relevant maybe see a liver/pancreas specialist. If you need Creon then you have pancreatic enzyme insufficiency and that needs proper investigation and may need a collaboration between gastro and pancreas specialists. I would be alarmed to take that many Creon unless you didnt have a liver or pancreas. Why dont you adk for a second opinion and in the meantime do research on how much Creon to take. Its your health and your life so dont be shy. Good luck.
 
PenguinMum said:
Hi again @sarahdennis87 to be perfectly honest this is beyond any GPs knowledge. I think you now need either an urgent gastro appt or more relevant maybe see a liver/pancreas specialist. If you need Creon then you have pancreatic enzyme insufficiency and that needs proper investigation and may need a collaboration between gastro and pancreas specialists. I would be alarmed to take that many Creon unless you didnt have a liver or pancreas. Why dont you adk for a second opinion and in the meantime do research on how much Creon to take. Its your health and your life so dont be shy. Good luck.
Click to expand...

Thank you. I’m currently not taking creon because it was making me vomit but I am on another enzyme. I’m waiting for a gastro appointment to come through. I will be trying to chase it up. It’s goid to talk to someone who knows about it. No one seems to know anything where I live
 
The worst part of being post whipple is the constant struggle to put on weight ~ after years of avoiding fatty foods i am now urged to eat as much as possible. Whilst the rich food tastes lovely it means I have to take more and more Creon. A meal is 5*40k tablets and a small snack is 3*40k, any less and I can soon clear a room (if you know what I mean).
 
@The_Petal yes I totally understand. I was on creon 25k, I would take 10 with meals and 5/6 with snacks. But the high dose made me sick, so was changed to Nutrizym 22, but it’s out of stock so have to use creon again.

I just have no idea what type of meals to eat. I’m stuck. Weight isn’t an issue as I haven’t actually lost weight, I wish I could haha it’s hard to come off.
 
Just seen a post on UK WHIPPLE WARRIORS that Mylan are going to cease the production of the 40k tablets !!!
 
sarahdennis87 said:
hello

Does anyone here have exocrine pancreatic insufficiency? Just diagnosed with it in December. I’m type 1, almost 16 years strong!

Struggling to control EPI. Was on creon 25000, taking 10 with meals 5 with snacks. Wasn’t working and making me vomit. Changed to Nutrizym 22, taking 6/7 with meals 4 with snacks. Still not working but thankfully no vomiting. I’m just not sure how to control it and I have zero support. Currently waiting on an appointment with my gastro
Click to expand...

Silly question perhaps, but were you taking 250,000 per meal? Does it matter what you are eating or do you vary the amount? Have you tried lower amounts and slowly building a tolerance? I also have EPI and remember being nauseous initially but was taking 36,000 per meal initially and was able to increase it over time. What also helped me was to stagger the pills throughout the meal with the first pill with the first bite and the last with the last bite. There were a couple of books that really helped me, and I will dig up the names when I get home. I also had to address diet considerably, which was completely opposite to what my gastro had told me.
 
JohnH2019 said:
Silly question perhaps, but were you taking 250,000 per meal? Does it matter what you are eating or do you vary the amount? Have you tried lower amounts and slowly building a tolerance? I also have EPI and remember being nauseous initially but was taking 36,000 per meal initially and was able to increase it over time. What also helped me was to stagger the pills throughout the meal with the first pill with the first bite and the last with the last bite. There were a couple of books that really helped me, and I will dig up the names when I get home. I also had to address diet considerably, which was completely opposite to what my gastro had told me.
Click to expand...

I have increased slowly since diagnosis, now taking 14 25k with majority of meals, I will alter slightly if I’m eating something with less/more fat and protein. I’m eating a fairly healthy diet as I’m also trying to lose weight. It doesn’t matter what I eat nothing helps. I’ve tried taking all tablets up front, staggering them throughout the meal, nothing helps. I don’t know what more to do?
I’ve been in contact with my gastro who informed me that she was leaving the trust so couldn’t offer me an appointment. I’m currently on a waiting list for an urgent appointment to get further tests done but I have to wait until another gastro starts. I’ve been told to try different medication, none of which helps and the gastro said the next route would be a gastroscopy for D1 and D2 biopsies and a colonoscopy to check for IBD.
I recently found out my stool sample from January tested abnormal for calprotectin but nothing was done with the results. I’m not entirely sure what it means but I just want to be normal again
 
The_Petal said:
Just seen a post on UK WHIPPLE WARRIORS that Mylan are going to cease the production of the 40k tablets !!!
Click to expand...
Mylan are only the distributors in the UK. There is currently a “manufacturing problem” in Germany for all but the 10,000 dose. If you go on the Mylan website today they are advising that supplies will be resuming soon.
 
sarahdennis87 said:
I have increased slowly since diagnosis, now taking 14 25k with majority of meals, I will alter slightly if I’m eating something with less/more fat and protein. I’m eating a fairly healthy diet as I’m also trying to lose weight. It doesn’t matter what I eat nothing helps. I’ve tried taking all tablets up front, staggering them throughout the meal, nothing helps. I don’t know what more to do?
I’ve been in contact with my gastro who informed me that she was leaving the trust so couldn’t offer me an appointment. I’m currently on a waiting list for an urgent appointment to get further tests done but I have to wait until another gastro starts. I’ve been told to try different medication, none of which helps and the gastro said the next route would be a gastroscopy for D1 and D2 biopsies and a colonoscopy to check for IBD.
I recently found out my stool sample from January tested abnormal for calprotectin but nothing was done with the results. I’m not entirely sure what it means but I just want to be normal again
Click to expand...

Of course I do not know how much function you still have left, but is there a reason you are taking such high levels of Creon? You are taking 10x more per meal than what I started with. If I take too much I will get nausea and burning in the stomach. It is how I roughly gauge if I need to adjust my dosage. If too low, I will notice more intestinal distress and more unpleasantness in the stool. If too high, nausea and burning.

Have you verified the impact of your dosage with a 24 hour fecal fat test? In the beginning I found it better to work with a steady amount for a few months, perform the test, and adjust. The starting amount was based on 500 units per kg of body weight.

Another important factor. Have you checked for bacterial and/or yeast overgrowth? This was a direct effect of diet and EPI and caused me huge distress, food sensitivities and nausea. Have you checked for nutrient deficiencies using urine metabolite testing? Genova Diagnostics has great tests, such as the NutraEval FMV that helped me a great deal with all these areas.You can PM me any time if you need more specific details.

These were some of the books I acquired on Amazon that really opened my eyes, and provided so much more useful info than my gastro had been able to in order to feel better.

The New Primal Blueprint - Great food and healthy lifestyle info.
Primal Pancreas: Pancreas Damage Survival Guide - Very detailed and practical EPI info.
The Keto Reset Diet - Great food info for temporary reset of diet.
 
@sarahdennis87 I just remembered I had problems for a year after starting Creon and saw a Gastro who liaised with Liver specialist. Anyway after many tests, one that was performed in Nuclear Medicine dept discovered I also had bile acid malabsorption which causes endless visits and accidents especially after fatty food. I’m not saying you have this but it is another question for the Gastro could it be bile acid malabsorption diarrohea?
 
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