Creon causing Pancreatitis?

[Peanut234]

Hi People

I've been started on creon - just a small amount with big/fatty meals as I'm borderline, but it makes me feel heaps better and I'm obviously missing something that it helps me absorb. It also make my hair healthyier and shinier (think of those pet food adverts - healthy coat and shiny eyes!)
Anyway, it helps, apart from it appearing to cause pancreatitis for me.

It also makes my sugar levels go down for some reason - maybe absorbing the fat in meals better?

I was on a larger dose and that was definitely too much, but the lower does was really good. Apart from the pancreatitis

anyway, does anyone else have experience with this?

 

[Cumbrianjudith]

I have wondered about asking dr. for it as been 3c from acute pancreatitis over 10 years ago, and then removal of gallbladder too, and no one has ever followed up on whether I need any gastric support, even after loosing 3 stone in weight without trying the first year. So interested to know there is such a thing as borderline, and that small doses of creon are prescribed. Does that mean you still have some pancreatic function? Can you get different parts of pancreas working to different degrees, and therefore also complaining / not working properly, also differently, as a result? Not something I have ever seen anything about. My diabetic specialists nurses declared my insulin production was none existent this year, but what about other functions? I like your description of your hair improving , presumably as vit/ mins enter your body to be used…my hair is constantly falling out and I have deep vertical nail ridges, with breakages. I hope you get a reply re. the return of your pancreatitis, I assume this is pain in the area, or are there other symptoms? Weird, perhaps it is something to the stop/ start nature of the body’s needs that creon sometimes overcomes that aggravates the pancreas.

 

[Peanut234]

I would definitely ask about it. My doctors had not even thought about it, and it was only a locum from overseas that started asking questions.
I think that from memory, weight loss can be a sign of loss of function. There are also tests they can do.
My endocrinologist says that the insulin producing sells are not as tough as the enzyme producing ones, so you don't lose them at exactly the same time necessarily, but it depends on the situation i expect. I measure as having some function, but I understand that the production is not smooth and even, it comes in fits and starts depending on if the pancreas is having a good day or not.
Yes, I get pain and other symptoms. I had not thought bout the stop start situation... Hmmm
My nails are pretty much the same, but my hair has gone from falling out, to being able to grow it longer, reasonably thick etc.

 

[novorapid24]

I have wondered about asking dr. for it as been 3c from acute pancreatitis over 10 years ago, and then removal of gallbladder too, and no one has ever followed up on whether I need any gastric support, even after loosing 3 stone in weight without trying the first year. So interested to know there is such a thing as borderline, and that small doses of creon are prescribed. Does that mean you still have some pancreatic function? Can you get different parts of pancreas working to different degrees, and therefore also complaining / not working properly, also differently, as a result? Not something I have ever seen anything about. My diabetic specialists nurses declared my insulin production was none existent this year, but what about other functions? I like your description of your hair improving , presumably as vit/ mins enter your body to be used…my hair is constantly falling out and I have deep vertical nail ridges, with breakages. I hope you get a reply re. the return of your pancreatitis, I assume this is pain in the area, or are there other symptoms? Weird, perhaps it is something to the stop/ start nature of the body’s needs that creon sometimes overcomes that aggravates the pancreas.

What happened before the Creon?

 

[TheIceQueen2012]

I have wondered about asking dr. for it as been 3c from acute pancreatitis over 10 years ago, and then removal of gallbladder too, and no one has ever followed up on whether I need any gastric support, even after loosing 3 stone in weight without trying the first year. So interested to know there is such a thing as borderline, and that small doses of creon are prescribed. Does that mean you still have some pancreatic function? Can you get different parts of pancreas working to different degrees, and therefore also complaining / not working properly, also differently, as a result? Not something I have ever seen anything about. My diabetic specialists nurses declared my insulin production was none existent this year, but what about other functions? I like your description of your hair improving , presumably as vit/ mins enter your body to be used…my hair is constantly falling out and I have deep vertical nail ridges, with breakages. I hope you get a reply re. the return of your pancreatitis, I assume this is pain in the area, or are there other symptoms? Weird, perhaps it is something to the stop/ start nature of the body’s needs that creon sometimes overcomes that aggravates the pancreas.

You definitely need Creon if you've had Pancreatitis as your pancreas can't digest food properly, or provide you with the vitamins your body needs. If the hospital doesn't provide what they're meant to, you always need to chase it up.

 

[Cumbrianjudith]

You definitely need Creon if you've had Pancreatitis as your pancreas can't digest food properly, or provide you with the vitamins your body needs. If the hospital doesn't provide what they're meant to, you always need to chase it up.

Was reading your reply and suddenly realised it was for me! At the mo arguing with Gp trying to get relief for Long Covid postural hypotension, after 4 1/2 years of BP/HR problems …in the process hopefully got a referral to my first NHS endo. as Gp insisting high HR ‘overmedicated levothyroxine’, despite FT3/4 only mid range (referral out of trust where they seem to be diabetic specialists). This is an example of ‘ if your hospital doesn’t provide what they’re supposed to, you always need to chase it up’ , also same for Gp…not that easy as 1. You need to know they are not providing something 2. You have to find out what, and who can provide it out of Trust/GP. 3. Continually pester across 2/3 different trusts…. Seems a bit late to chase up creon after 10 years, when I knew nothing about it despite 3 stones of weight loss, by coincidence due to hypothyroidism I have self dosed many vits/ mins including liquid ie avoiding gut vit D,K and A ( not E). Perhaps add some liquid E too, tho snack on nuts so hope some gets thru. If get to see an endo. I’ll ask about creon. At mo. in cortisol testing loop with Gp.

 

[TheIceQueen2012]

That is so wrong you weren't put on Creon. It should have been put in place as soon as you ended up in hospital with Pancreatitis.

 

[Cumbrianjudith]

I was in hospital having a routine day procedure to unblock my bile duct when everything went wrong in the recovery area…being sick, then must have passed out, put on a ward, tried to get CT scan done but couldn’t inject anything into me as system closed down to peripherals, so off to intensive care with septic shock and acute pancreatitis… Took Gp sending me to A&E, and a two night stay, afterwards over the next week or two before even considered insulin problems, even then never saw a dr.but after discharge a couple of days later a diabetic nurse who showed me how to inject insulin. I later found out the month before a woman in very similar position, but who had got home, died from from sepsis from same procedure…so everyone was very cagey, but you would have thought they would have learnt their lesson and everyone would be in readiness. I tried to get access to my med.notes but whole areas were sealed off, and bits I remember being there originally in a large distinctive hand writing weren’t there…perhaps in ‘cover up’ someone didn’t want referrals to other depts etc. but the gastroenterologists perhaps should have anticipated something might go wrong…later the protocol was to give antibiotics before the procedure.

 

[TheIceQueen2012]

If I were you hun, I'd make a serious complaint and take out a compensation claim out on them.

 

[Cumbrianjudith]

If I were you hun, I'd make a serious complaint and take out a compensation claim out on them.

Can I assume you are from North America ThelceQueen? The incident happened 10 years ago, and no proof of who did or didn’t do what / when, from the records I saw. I tried a specialised medical claims solicitor and they were not interested…perhaps if I’d actually died it might have been a different story; just hope a month later another patient was not affected!

 

[Bcgirl]

That is so wrong you weren't put on Creon. It should have been put in place as soon as you ended up in hospital with Pancreatitis.

What?..I had severe acute pancreatitis 17 years ago, ended up in hospital for 16 days, no food by mouth for two months….i was certainly at deaths doorstep. I have never been offered creon. In fact I didn’t get any follow ups…just a major surgery due to ever growing pancreatic pseudocyst. I was prediabetic for a very long time, but it was never pointed out to me as it was never flagged on my bloodwork. Need to do some research into this…I see the doc in October and will ask about it.

 

[Gray Wolf]

I'm in the UK too and it took 4 years before I was offered Creon or Nutrizym I got gastric support as they drained my Pseudocysts via pigtail stents into my stomach and at the time I was on Warfarin for AF

No one has ever mentioned 3c diabetes and I have only found out about by browsing the community

 

[Cumbrianjudith]

Seems to be a general problem of no joined up thnkng between ‘diabetic’ teams and gastroenterologists…you get one or the other but not both! I take lots of vitamins/minerals/ supplements because of various gut problems ( hypothyroid slow motility, no gallbladder and pancreatitis bagd enough to give me type 3c diabetes a decade ago) I have low, just in range, vit D, B12, folate, ferritin ( that I get checked with private blood tests). Other tests are just too expensive for me. Anway over the summer conscious of bad lower gut pain, and noticed at least one of these supplements in capsule form just wasn’t being absorbed ( I’ll leave it to your imagination to work out how I know!). I think ihave narrowed it down to the highly recommended Thorne B Complex with a cellulose-based shell ( most others are bovine collagen)…anyone else found that lack of pancreas hormones/ enzymes means you can’t digest this? Interesting because it might have been doing this for years, and have other symptoms that have been suggested might link to low B1, never mind B12….

 

[Sue dodds]

A true 3c diabetic has no pancreas as have to have surgery like I did 4 years ago after being told I had only 6 months left to live. Five years previous to that I contracted acute pancreatic head was diseased then after a few stints in hospital and the worry of covid . And seeing a consultant who had little knowledge of pancretituis over the first five years could have killed me . Lost 8.half stone. Could hardly walk forgot stuff was a real mess. Had 1 to 2% chance of coming off the table . I survived to live the nightmare of being a type 3 diabetic and no spleen and gastro surgery done in ten and a half hours on the slab sometimes god deals good people things that are beyond out control no fault of our own .

 

[Cumbrianjudith]

A true 3c diabetic has no pancreas as have to have surgery like I did 4 years ago after being told I had only 6 months left to live. Five years previous to that I contracted acute pancreatic head was diseased then after a few stints in hospital and the worry of covid . And seeing a consultant who had little knowledge of pancretituis over the first five years could have killed me . Lost 8.half stone. Could hardly walk forgot stuff was a real mess. Had 1 to 2% chance of coming off the table . I survived to live the nightmare of being a type 3 diabetic and no spleen and gastro surgery done in ten and a half hours on the slab sometimes god deals good people things that are beyond out control no fault of our own .

I believe I still have my pancreas it’s just not producing insulin….i was told that the cells producing insulin were the first to go with diseases like acute pancreatitis, those producing digrstive enzymes were more robust, but perhaps get a bit ‘strained’ over subsequent years.

 

[Peanut234]

HI all
A couple of comments

B1 /thiamine deficiency is something that is definitely worth looking into. My understanding is that it commonly happens during/post pancreatitis.
Unfortunately for me it took many rounds of pancreatitis for them to figure out I was deficient but man I felt better after supplementing. I have also had my potassium go weird as well.

The definition of 3c ( when people have even heard of it at all!) does seem to vary by country. The definition I was told was damage ( or removal) either by surgery, or from pancreatitis, which results in loss of function of some level for creating digestion enzymes. I think from memory it the damage is autoimmune then its a different number, but I might be wrong.

It sounds like we've all had a bumpy road on the way here...