The effect (or not) of Creon

[pottersusan]

When I went to Russia, I managed not to take any Creon with me😱. I know, I know - how could I be so stupid. I asked myself that question quite a lot initially.
I went to see the ship's doctor - Igor - who had very limited English. Getting him to understand my situation was totally beyond me😱😱. He gave me what I think was pancreatin. As you can imagine I was somewhat concerned about what might happen, but as time went on I had no problems. In fact life was better than usual🙂.
Now I've been back a week and taking Creon as usual my old problems have resurfaced.
This begs the question... Why do I take shedloads of Creon, when it seems to be causing problems rather than solving them?
I have wondered over the last few years what good Creon is doing me, as it seems to make no difference how much I take.

 

[grovesy]

Sorry to hear this!

 

[eggyg]

When I went to Russia, I managed not to take any Creon with me😱. I know, I know - how could I be so stupid. I asked myself that question quite a lot initially.
I went to see the ship's doctor - Igor - who had very limited English. Getting him to understand my situation was totally beyond me😱😱. He gave me what I think was pancreatin. As you can imagine I was somewhat concerned about what might happen, but as time went on I had no problems. In fact life was better than usual🙂.
Now I've been back a week and taking Creon as usual my old problems have resurfaced.
This begs the question... Why do I take shedloads of Creon, when it seems to be causing problems rather than solving them?
I have wondered over the last few years what good Creon is doing me, as it seems to make no difference how much I take.

Interesting Susan, like you I take a shed load of Creon and panic if I don't have any with me and have to eat. I sometimes say I would rather forget my insulin. But the other day I just plain forgot to have any with my lunch. It was too late when I realised and I then panicked because I had to go out. But I was fine, are we being led down the garden path, do we really need so much.My gastro man tripled my dose last year to help my "you know what problem" maybe the Creon is causing it. I keep threatening to stop taking it for a week when I'm off work but always chicken out! 🙂

 

[Robin]

I just had to google this to see what the difference between Creon and Pancreatin is. I gather they're almost the same, only with a slightly different formulary ( more Lipase in the Creon). Could it be that Pancreatin just happens to suit your body better?

 

[eggyg]

This thread has really got me thinking, I have never been offered an alternative, don't know what or if that would be. Sometimes I think the Creon (much like D) pleases itself whether it works or not. Or most likely my gastric system! I can take the same amount with the same meal and have two VERY different results! Have I ever said I'm a martyr to my bowels! 🙂

 

[anniehi]

Just had a look at my Creon and on the box it says Creon and underneath that it says pancreatin so I think they are the same. I think Creon is the brand name. Maybe it was the food that suited you better Susan. 🙂

 

[mikeyB]

I think Creon is one of the most unpredictable medications I've ever taken. I've had to gradually increase the dose to control symptoms, then when getting bunged up, reducing down again and finding that the lower dose controlled the steatorrhoea when it didn't before. That's without a change in diet. Still a bit sluggish though. Furthermore the lower dose gives me better control of BGs, which is counterintuitive. For a bit of light relief tonight, I'm omitting Creon and eating chilli con carne. Stand back and enjoy the show

I do wonder, however, about the absorption of fat soluble vitamins, and minerals in exocrine pancreatic deficiency, and whether Creon, whatever our symptoms are, is working to that end. I'll throw that in as a "by the way" when I see the doc about something else this week. Doctors really hate that🙄

Forgot to say, they could refilm that scene in 'Blazing Saddles" with the Cowboys sitting round the fire taking Creon with beef consommé.

 

[eggyg]

I think Creon is one of the most unpredictable medications I've ever taken. I've had to gradually increase the dose to control symptoms, then when getting bunged up, reducing down again and finding that the lower dose controlled the steatorrhoea when it didn't before. That's without a change in diet. Still a bit sluggish though. Furthermore the lower dose gives me better control of BGs, which is counterintuitive. For a bit of light relief tonight, I'm omitting Creon and eating chilli con carne. Stand back and enjoy the show.

Oh risky! Chilli con carne without Creon? You're a true maverick and a much braver person than me! 🙂 Parp!!

 

[mikeyB]

Aye, worry eggy, Carlisle is only just outside the fallout zone😱

 

[eggyg]

I live in a 300 year old house with foot thick sandstone walls, I should be fine! 🙂

 

[mikeyB]

On a more serious note, for once, have any of the other Creonistas on the forum noticed any greater problem getting even control of their BGs? I came into pancreatitis off 20 years of type1, some of you have your type 1, 2 or 3c as a result of pancreas rot. It is well reported that diabetics on Creon can get unexpected highs and lows, but since starting on it I've been hypo central. When I first started, I found I was waking with hypos nearly every night. It's a lot better now, but only inasmuch as I'm always borderline hypo in the morning rather than up in the 5 or 6 region, with no dawn phenomenon, and that's taken quite a bit of Lantus juggling. Anybody else have similar problems with Creon?

 

[eggyg]

I've been on Creon for almost 9 years, before my op, so therefore before becoming diabetic so don't know any difference. What I only found out in recent times is the fact Creon does have an effect on BGs. When I mentioned this to my DSN and asked why I had never been told she said it was because she actually didn't know of that side effect. TBF, it's not listed on the info leaflet, I only found out through research, which I was doing as I realised that after being on 3/4 a day 40k Creon for 8 years, my gastro man tripled my dose and my BGs seemed to be rising at an alarming rate. I agree that Creon is a very unpredictable medication, but I am not brave enough to reduce/stop taking it. BTW, love being called a Creonista, sounds very hip! 🙂

 

[Northerner]

love being called a Creonista, sounds very hip! 🙂

Hehe! 🙂 I suspect that is a moniker that will now stick on the forum!

 

[khskel]

Hello fellow creonistas 🙂

 

[eggyg]

Hello fellow creonistas 🙂

Why thank you kind sir! I think we may be a fairly elite group. 🙂

 

[mikeyB]

Gosh, will I get into the Oxford Dictionary next year? The word just sounded so right when it popped into my head. I wonder if it's original?

Anyway, eggy, I was surprised you didn't previously know the effect on BGs, but you are right - it's not in the medication leaflet, though it's common knowledge over on the pancreatitis forum, and high on the list if you google Creon side effects. Which is why I asked the question in the first place. And there are more Creonistas out there to join in this thread. Don't be shy, we're not all barmpots🙂

By the way, the chilli con carne worked a treat. I'm back on the Creon now, after emptying Spar of their soft toilet paper, and the bathroom cabinet looking for the half empty tube of Anusol, exp 2005.

 

[eggyg]

Gosh, will I get into the Oxford Dictionary next year? The word just sounded so right when it popped into my head. I wonder if it's original?

Anyway, eggy, I was surprised you didn't previously know the effect on BGs, but you are right - it's not in the medication leaflet, though it's common knowledge over on the pancreatitis forum, and high on the list if you google Creon side effects. Which is why I asked the question in the first place. And there are more Creonistas out there to join in this thread. Don't be shy, we're not all barmpots🙂

By the way, the chilli con carne worked a treat. I'm back on the Creon now, after emptying Spar of their soft toilet paper, and the bathroom cabinet looking for the half empty tube of Anusol, exp 2005.

Ha! Top tip, baby wipes (sensitive) and good old fashioned Vaseline!

As I don't tend to suffer from pancreatitis anymore, apart from mini attack after taking prescription codeine, looked on info leaflet AFTER the event " side effect, pancreatitis!" I haven't been on the aforementioned pancreatitis forum, worth a look? PS Creonista may get in the dictionary, but it'll never be used on Countdown, you know Suzie won't allow proper names!

 

[mikeyB]

Sorry for the late reply, I've been having a busy day. You know how it is when you're retired, you hardly get a minute to yourself.

The pancreatitis support forum is well worth a look. As I knew nothing about pancreatitis I joined that before ever I came here, because I thought I knew a lot about diabetes. So much for that particular theory!

It's at www.pancreatitis-forum.org.uk

Have a look round, there's lots of fun to be had, and some folk who've had a murderous struggle with the condition.

 

[pottersusan]

On a more serious note, for once, have any of the other Creonistas on the forum noticed any greater problem getting even control of their BGs? I came into pancreatitis off 20 years of type1, some of you have your type 1, 2 or 3c as a result of pancreas rot. It is well reported that diabetics on Creon can get unexpected highs and lows, but since starting on it I've been hypo central. When I first started, I found I was waking with hypos nearly every night. It's a lot better now, but only inasmuch as I'm always borderline hypo in the morning rather than up in the 5 or 6 region, with no dawn phenomenon, and that's taken quite a bit of Lantus juggling. Anybody else have similar problems with Creon?

I don't understand the concept of 'even control of BG'😱!
I do love the idea of being a Creonista.
Will look at the pancreatitis forum...

 

[pottersusan]

Just had a look at my Creon and on the box it says Creon and underneath that it says pancreatin so I think they are the same. I think Creon is the brand name. Maybe it was the food that suited you better Susan. 🙂

As you can imagine on a cruise it was highly refined food compared to my normal diet. Not good for diabetes, but maybe better for other things. It seems you cant win!