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My experience with Creon

How can you tell if you need more .what are the effects. I take creon but apart from struggling to keep weight on I could not tell if I'm taking enough or not .I do feel shake inside like the effects you get with a bad hangover without the headache presser behind my eyes but I put that down to been diabetic. My pancreas feels like a dull toothache all the time .
 
I had pancreatitis last September 2022 and was losing weight and appetite fast! When the pain got unbearable, I was taken into hospital and diagnosed with pancreatitis then was given liquid morphine for the pain - and nothing else! Neither was any further investigation carried out, irrespective of my dry mouth and other symptoms.

Recently (only a few weeks ago), a routine blood test showed my levels off the scale and I was diagnosed with diabetes type 3. Now, the Creon 25000 tablets appear to be suffering a shortage and so I’m hoping desperately for an alternative from the doctors. This has taken nearly 3 weeks so far!

However, the tablets seem to have done the job, and my bowels are almost back to normal. Mind you, I lost four stone before the repair work started. I was 14 1/2 stone, and went down to 10 stone! Gradually the weight is coming back now, but it’s a slow job. Appetite now back as well.
 
Hi good morning
Yes this sometimes happens creon was available 36, 000 but that was stopped. Best bet is to always have ones months supply of creon so you don’t run out.
It’s been two months now still no 25,000 I’ve heard also it’s happening in other country’s.I prefer creon in 10,000 tbf found they help with my EPI better as I get less side effects.
 
Hi All,
I have 3c following pancreatic cancer, and have been on creon since I left hospital in December 2020. I was sent away being told to take 3 with meals and 1 with snacks.... that was it.
For approx 18 months I was suffering badly with digestive problems (sickness, diarrhoea etc), talking to GPs and others, trying to get some help. I then spoke to a nurse from Pancreatic Cancer UK, who gave me a LOT more information than the hospital did. Don't get me wrong - thank you Royal Free for getting rid of the cancer, but the aftercare has been shockingly bad!
Anyhoo, PCUK told me I should be increasing my creon intake. Some of the people of their forums take up to 10 tablets per meal (10x 25,000 unit)!
I currently take 6x 25,000 with breakfast, the same with lunch, and 8-10x 25,000 with dinner (depending on what I'm having).
Weight has gone up in the last 6 months (I was static for a while) but that could also be the insulin.
 
I was not given much info take 3 with meals and 1 with snacks 2500.that was it I was put on insulin at the same time slow relicensing and fast acting nothing about carb counting adjustments or that 1 on the pen would bring your bloods down 3.most of what I know I found out from people with diabetes
 
mcqueen 64 said:
Not tryed vegan protein powder but willing to try anything yhanks
Click to expand...
Most protein powders are full of fat and sugar so I had vegan to help me put weight on. Vegan ones are made of pea and rice proteins which I found easier to digest plus low sugar.




You can get it from home bargains I prefer vanillia. If your epi is good then you should not be losing weight but a FET test is the way to go via Gi and should be done yearly but with the back log my GP has been doing mine.
 
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Hi you can get creon in 10,000 it means taking more tablets but better than none. Always try and keep one months supply so you don’t run out, speak to you GP. It didn’t happen very often but it’s better than get stressed out when it does.
 
I think it’s time you spoke to your GI about ppis
I was in this situation and ended up in A&E due to weight loss and pain when eating, I was told it was pancreatitis and refered to a dietitian which didn’t and should of happened after my distal pancreatectomy for a NET tumour.
most people are given creon with little no help but after extensive research I found that my creon wasn’t working properly WHY ?
Establishing successful PERT therapy requires a partnership between the patient and their dietitian.

PERT is often prescribed with a proton pump inhibitor (PPI) drug, which reduces acid production in the stomach. In PEI the duodenum is more acidic than usual because the pancreas makes less bicarbonate, which neutralises gastric acid. Pancreatic enzymes do not work in an acidic environment, so PERT capsules have a coating which stops the enzymes being released into acid. If the duodenum is too acidic, the capsules will not release their enzymes in the correct place, and they will not work properly. The PPI drug reduces the amount of acid reaching the duodenum and enhances the action of PERT.

I lost a stone in 10 days

hope this helps
 
Hi yes this is common after cancer treatment I was going to have mine at the royal free but went to Oxford instead.
There is lots to learn about EPI so I hope I can help.
Firstly epi is determined on a FET and severity of Epi and body weight.
People tend to increase there pert as there symptoms return, pain when eating, bloating, heartburn and steatorrhea and fatigue.

I became really unwell and found that I need ppis in order for my pert to work correctly.
a FET test should be done yearly as this will help you understand how your are managing your condition and if your pert is at the correct level.
it’s a difficult one as one man’s snack is any man’s meal, a persons body weight and fat contents and juggling diabetes, if that wasn’t enough.

so how do you know if your taking too much ?
what I have found is you can become constipated, your bowel movements with become bigger, you might get a irritated anus feels like you haven’t wiped properly, headaches that persist.

what if you’re increased you dose and your symptoms are not improving,
I would speak to you GI and it needs to be a GI as pert comes under the exocrine system not endocrine.

ask to be tested for a small bowel bacterial overgrowth, bile acid malabsorption and or coeliac disease.
 
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I had severe pancreatitis 13 years ago which has left me with several complications.

I had an FE test about 4 years ago which showed moderate PEI. Since then, what’s left of my pancreas, has continued failing and the advice from my hepatology consultant (only consultant I get to see), and my dietitian is to keep increasing my Creon. I’m also on PPI’s (80mg Omeprazole a day). However, even being on 10+ 25K Creon with each meal doesn’t help with my symptoms.

My hepatology consultant is now starting me on an antibiotic trial for the small bowel bacterial overgrowth mentioned above. I really doubt this will make any difference though as I’m pretty sure it’s Diabetic Autonomic Neuropathy. My GP agrees with me, but getting to see the right consultants is a nightmare. I’ve been waiting probably over 3 years to see an endocrinologist. My hepatology consultant is really good and keeps writing to consultants asking them to see me, but I’m still waiting.

I just thought I’d mention Diabetic Autonomic Neuropathy though as it can also have symptoms similar to not taking enough Creon. Being able to get an FE Test would be the best way to tell how much Creon you need though imo.
 
I'm in the same boat. Unfortunately, taking a lot of creon but can't gain weight. I've tried everything. PPIs, antibiotics etc. but can't gain any weight. Its been over a year now. Initially I gained weight but then it stopped and stools worsened. Then I was put on rifaximin for 3 weeks and it worked. But only worked for 2 months. Now its been 6 months and nothing has worked. I;ve changed PPIs, tried H2 blockers instead, tried a second round of antibiotics, timing of creon before/during meals - just nothing at all. Im 45 kg and take 450,000 creon a day, barely any fat. It makes no difference. The dietician even put me on tube feeds orally to help me gain weight but it has done nothing at all. It feels like I've exhausted all options. I'm in Australia and Creon is the only PERT available here.
 
I'm new here to the forums, but I'm here to contribute.

I was diagnosed with EPI in February of 2023 after being ignored by local doctors for well over 1 1/2 years. I had to go out of town to find one that would pay attention to what I was telling them. My symptoms were actually two-fold; I had severe diarrhea alternating with constipation, but would also have crippling bouts of acid reflux. The burning pain would circle all around my mid-section and for the next 3 days the acid would be coming out like water. I could not do anything to stop it or minimize it. I feared going anywhere because I never knew where all the bathrooms were. It played hell on any type of life I was trying to have.

I was depressed, started seeing a therapist, went on anti-depressants and sat around doing nothing for fear of getting too far away from the 'throne room'. I finally found a doctor at the hospital that 'saved my bacon' 25 years prior (bone marrow transplant in 1997). He did the MRI's and scans and found out the chemotherapy damaged my pancreas and I had EPI. He put me on Creon (36000u x 2 for meals, 36000 x 1 for snacks) and almost immediately the diarrhea resolved and I was actually feeling better, but still having the issue with the acid reflux. He always felt that there were 2 separate issues going on because the EPI wouldn't cause the acid reflux. He suggested the next time I had a reflux attack that I should go to the local emergency room and they could do scans to see what was going on at the time.

I had a bad bout several weeks later so I did what he suggested and of course they couldn't find anything there. But they did blood work and the doc that diagnosed the EPI called me with the results...I had severe hypercalcemia (elevated blood calcium levels) and THAT could be causing the acid reflux! Made an appointment with an endocrinologist and he diagnosed hyperparathyroidism. One of my parathyroid glands (normally about the size of a grain of rice) was over an inch long and half inch in diameter (30mm x 13mm) causing the increased PTH (up over 425, normally less than 65) and causing my calcium level to go over 12.5 (normal range is 8-10).

Happy to say after the surgery to remove the miscreant parathyroid gland I now feel like a million bucks after taxes. I still have EPI and I'm still taking Creon, but it's now regulated so I can go out and do things and not have to scout out the bathrooms as my first endeavor. I still have occasional bouts of diarrhea from time to time when I've eaten something that doesn't agree with me, but it's manageable at the very least and not a constant in my life. And I was able to drop the therapist and the anti-depressants.

Life is not great, but it's good and I'm settling in to my new 'normal'.
 
I have been on creon for 15 years my insulin seems to work but my pancreas produces zero enzymes after having a FE coming back as 1.
I was diagnosed with T3c 2 years ago but I am no longer on the insulin they gave me as my pancreas has decided to kick out insulin and I was hypoing all over the place.
I dropped to 45 kg and I’m back to 53kg now but I am struggling to put on weight…
I am on creon I was on 13/14 25,000 per meal then I experimented coming right down to 4 per meal results-
On lower dose stool was firmer but pale - guessing not absorbing
Back on 8-10 per meal - correct Color just not consistency…..
my bmi is 18 and my body fat is 11% - low….
But I seem to be having this issue with a sudden drop in blood sugars after a meal … any one else experience this …
Too much creon ?
Not enough?
I’m tempted to up my dose to 20-25,000 per meal in an attempt to gain weight and fix these random hypos (I’m not on any insulin therapy) literally my own insulin is dropping me to 3.2 probably lower if I don’t treat it.
Is the creon an issue
The insulin
Or
The production of glucagon
I’m on a libre sensor too
 
Hi Leejparks, I am not aware of Creon affecting the blood sugar values, I only know them to aid in breaking down the food and affecting your stools and bowel habits. I'd be interested to know if they are a factor in any way.
I got a lot of my info through the Pancreatic Cancer.org charity. As well as their website I was able to talk to a specialist nurse who gave me loads more info than my hospital had! They also run regular webinars which you might find useful. Worth checking them out.
 
@Leejparks do you take a PPI? I noticed that without the PPI my sugars weren’t going up as the Creon is deactivated in acidic conditions. Your pancreas may not be producing any bicarbonate to buffer the acid for the Creon to work. Another issue could be bacterial overgrowth that causes consistency problems and pale stools. My Gastro wants be to take a course of rifaximin 2x a year in case there is an overgrowth issue.
 
Iv just re started omoprozole this morning after reading some posts I stopped taking before Christmas because I jumped to the conclusion that it was causing reactive hypos - why I thought that I have no idea.
I’ll give it a few weeks and see how I get on

Just for info but I upped my creon last night with dinner and saw a steady rise in bs and a steady decline after but over a 3 hour period (I’m guessing the quality of the insulin my body is creating isn’t great)
 
@Leejparks give the PPI a go. I stopped it for 6 months cause I didn’t think it was helping and I lost weight. When I restarted it took a while to work. It can take up to 8 weeks to lower the ph in the small bowel for the Creon to work so might be worth persisting for a few weeks to see if it helps. Good luck - I hope things improve.
 
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