Question for my fellow Creonistas...

[eggyg]

My question is; what do you find most challenging, your diabetes or your gastric "problems"? Why I ask is, I cope really well with my diabetes, scan/prick fingers, stick needles in various parts of body, eat well, exercise. I have control. But with the gastric problems, it controls me! Too much Creon, bunged up, too little, well you all know too well the results of that! I feel it rules my life, I need to go to work but can't set off yet, you know why, if I don't get the results I want, I will have to go to work and panic all the way. I do believe part of it is psychological, but it's awful non the less. I don't let D define me but I know the "gastric problem" does and although I do lead a full and active life, spontaneity doesn't enter it! How do you all cope? Anyone feel free to answer/offer advice even if you're not a Creonista. Elaine

 

[khskel]

I have to say that some days are more regular than others but in my case I can't always tell if it's the creon or the colitis

 

[mikeyB]

I've had twenty years of diabetes, and the same length of time with recurrent ulcerative colitis, so pancreatitis and Creon didn't really challenge me overmuch. That said, one of the problems with steatorrhea (and with UC) is the occasional difficulty distinguishing between an impending poo and an impending fart, and the Creon makes that worse. Sometimes when I'm out I take with me the "can't wait" card I got from the colitis website, and most shops will let you use the staff toilets if you vividly describe what will happen if they refuse.

 

[pottersusan]

My body has relearned its habits, so life with Creon is reasonably predictable (apart from the days when it's not).
I have a 'cant wait' card from Macmillan, but (touch wood) I haven't had to use it - though I suspect I may need it when in hospital. I have memories of not being got to the loo fast enough in the past😱😱😱😱😱😱 I'm glad it wasn't me that had to clean up the consequences🙂

I have come to the conclusion that magic carpets are powered by Creon farts😱

So, @eggyg, in response to your question - sometimes its the 'gastric problems' and sometimes it's the D - depends on the wind direction (couldn't resist that!), whether there's a y in the day, the phase of the moon...

 

[eggyg]

I've had twenty years of diabetes, and the same length of time with recurrent ulcerative colitis, so pancreatitis and Creon didn't really challenge me overmuch. That said, one of the problems with steatorrhea (and with UC) is the occasional difficulty distinguishing between an impending poo and an impending fart, and the Creon makes that worse. Sometimes when I'm out I take with me the "can't wait" card I got from the colitis website, and most shops will let you use the staff toilets if you vividly describe what will happen if they refuse.

That made me laugh, a wet fart is what my hubby describes it as! I concur re distinguishing between the two. My problem is I do loads of walking, as you know, and toilets usually don't figure highly on the fells and around the lakes! We're off to Cornwall next weekend for the a week and are planning on doing lots of walking and I'm already starting to panic, I definitely won't be indulging in any clotted cream scones! Cream isn't good! 🙂

 

[eggyg]

My body has relearned its habits, so life with Creon is reasonably predictable (apart from the days when it's not).
I have a 'cant wait' card from Macmillan, but (touch wood) I haven't had to use it - though I suspect I may need it when in hospital. I have memories of not being got to the loo fast enough in the past😱😱😱😱😱😱 I'm glad it wasn't me that had to clean up the consequences🙂

I have come to the conclusion that magic carpets are powered by Creon farts😱

So, @eggyg, in response to your question - sometimes its the 'gastric problems' and sometimes it's the D - depends on the wind direction (couldn't resist that!), whether there's a y in the day, the phase of the moon...

Ha ha! It's a good job we can joke about it ( sometimes) it's so unpredictable, I can eat the same food and have different reactions, just like with the D, I actuallly experimented this week whilst off work and didn't take any Creon for 2 and half days! Never done it in 9 years, but had a "backlog' if you know what I mean! Didn't do bad at first but I've paid for it since! Won't be doing it again! 🙂

 

[mikeyB]

And don't forget the sleeping and just woken up farts. One member on the pancreatitis forum calls it streakorrhea.. PJs in the wash again...😡

 

[Ref]

Definitely the diabetes for me. Been taking creon for 7 or 8 years now and never had any problems. Main thing to remember with creon is that it is the fat content of the meal you need to consider when deciding how much creon to take and to spread the capsules throughout the meal.

 

[mikeyB]

Yes indeed, but recently the higher dose Creon capsules have been found to have variability in their stated dosage, both higher and lower. It is being sorted, but apparently, and I kid you not, there's a shortage of pigs.

 

[pottersusan]

Yes indeed, but recently the higher dose Creon capsules have been found to have variability in their stated dosage, both higher and lower. It is being sorted, but apparently, and I kid you not, there's a shortage of pigs.

I've heard that too - but why isn't there a shortage of bacon?
The 40,000s have been out of circulation for years now. I suspect it's more to do with money than pigs - not that I'm cynical🙄

 

[LorraineP]

The timing of your post is perfect for me! Only recently I discovered an article on Pancreatic Exocrine Insufficiency (PEI) and realised that I had all the symptoms (except that I have vomiting too). The bit that interested me was that it could explain variable glycaemic results in diabetics, I've been tortured with dramatically variable BG results, in spite of limiting my diet to the same food at the same time every day. I have to test BG throughout the night, every night, as it can go either way on different nights, hyper or hypo.

After many negotiations with my diabetic consultant who didn't trust the connection between PEI and diabetes he agreed to try me out on Creon to test the theory. I found myself hoping the test would be positive because I thought Creon would be a simple way to help stabilise my BG but having read this post I'm not so sure it will be the answer I'm looking for. I work so hard at keeping my BG in the safe zone and hoped Creon might allow me to sleep at night but maybe it brings other gastric issues? Anyway, I'll worry about that when I know the results of the stool test.

Like eggyg I find that my gastric problems have taken over my life and for the first time in 40 years of being diabetic, I find that my BG is controlling me rather than the other way round. Is this what happened to you creonistas before treatment?

 

[mikeyB]

Yes, Lorraine, the stool test will give you the answer to whether Creon will help, so there's no need to "take it and see". Not that it's a dangerous drug. Actually, I found control a tad more difficult after starting Creon, and that's a fairly common experience. Though it may well be the underlying exocrine insufficiency that does that.

Nobody ever said life was meant to be easy, that's for sure

 

[eggyg]

The timing of your post is perfect for me! Only recently I discovered an article on Pancreatic Exocrine Insufficiency (PEI) and realised that I had all the symptoms (except that I have vomiting too). The bit that interested me was that it could explain variable glycaemic results in diabetics, I've been tortured with dramatically variable BG results, in spite of limiting my diet to the same food at the same time every day. I have to test BG throughout the night, every night, as it can go either way on different nights, hyper or hypo.

After many negotiations with my diabetic consultant who didn't trust the connection between PEI and diabetes he agreed to try me out on Creon to test the theory. I found myself hoping the test would be positive because I thought Creon would be a simple way to help stabilise my BG but having read this post I'm not so sure it will be the answer I'm looking for. I work so hard at keeping my BG in the safe zone and hoped Creon might allow me to sleep at night but maybe it brings other gastric issues? Anyway, I'll worry about that when I know the results of the stool test.

Like eggyg I find that my gastric problems have taken over my life and for the first time in 40 years of being diabetic, I find that my BG is controlling me rather than the other way round. Is this what happened to you creonistas before treatment?

My problem Lorraine is that I have had most of my pancreas removed almost 9 years ago so straight away my pancreatic digestive enzymes were compromised. I actually didn't become diabetic for another 3 years! Amazing as that sounds, now insulin dependant. So had gastric problems for longer than D. Last year I was diagonosed with gastric dumping syndrome ( very glamourous!). My gastroenterologist trebled my Creon dosage, which obviously helps but bungs me up, which is unnerving as at least before I sort of had a routine, if you understand my meaning. I feel it's messed everything up, my BGs, my toilet routine, my social life! I know my little bit of pancreas is dying so my digestive enzymes along with it. So it's just a case of keep experimenting with the Creon and insulin and food! Get there eventually! Hope you get some answers soon. Don't worry about it too much you can always "ask the Creonistas". Ha! 🙂

 

[eggyg]

Yes indeed, but recently the higher dose Creon capsules have been found to have variability in their stated dosage, both higher and lower. It is being sorted, but apparently, and I kid you not, there's a shortage of pigs.

I never knew that! You obviously know folks in the know! That could maybe explain a lot, what a blooming cheek though, do they not know what us Creonistas go through, I'm a bit young for incontinence pants yet and definitely don't relish my new forum name being Poopypants! 🙂

 

[LorraineP]

Hello Mike, I presume control became a tad more difficult because you were absorbing your food better with Creon? It seems that chronic gastric problems often go hand in hand with diabetes. I didn't know that until recently. Diabetic Clinics don't seem to mention it perhaps because gastric symptoms are so similar with most gastric conditions, some caused by diabetes, some not. I can see that diagnosing the correct gastric problem must be quite difficult and Diabetic clinics can't afford to spend the time on them as most conditions will have a non diabetic cause. Whatever the cause though, gastric problems do affect control so it's important to sort them out.

Eggyg, I'm sorry I can't offer you any advice on this, except for OTC medications and they're probably not suitable for your condition anyway!

 

[LorraineP]

My problem Lorraine is that I have had most of my pancreas removed almost 9 years ago so straight away my pancreatic digestive enzymes were compromised. I actually didn't become diabetic for another 3 years! Amazing as that sounds, now insulin dependant. So had gastric problems for longer than D. Last year I was diagonosed with gastric dumping syndrome ( very glamourous!). My gastroenterologist trebled my Creon dosage, which obviously helps but bungs me up, which is unnerving as at least before I sort of had a routine, if you understand my meaning. I feel it's messed everything up, my BGs, my toilet routine, my social life! I know my little bit of pancreas is dying so my digestive enzymes along with it. So it's just a case of keep experimenting with the Creon and insulin and food! Get there eventually! Hope you get some answers soon. Don't worry about it too much you can always "ask the Creonistas". Ha! 🙂

It's interesting that quite a lot of people on here seem to have had their pancreas removed. Is that because of pancreatitis? I hope you get everything stabilised soon and you can enjoy your social life again without feeling nervous about what might happen. Can't be fun!

 

[eggyg]

It's interesting that quite a lot of people on here seem to have had their pancreas removed. Is that because of pancreatitis? I hope you get everything stabilised soon and you can enjoy your social life again without feeling nervous about what might happen. Can't be fun!

I had pancreatitis caused by gallstones 15 years ago. I was just a slip of a lass at just 41, I was a typical gallstone candidate, fair, fat, female and forty! Didn't even know I had them til I was rushed to hospital after feeling so ill for weeks, had already been to emergency docs and A & R who diagonosed heartburn! I wish! Cut a long story short, emergency gallbladder removal and pancreatic psudocyst drained. 7 years later, tumour on pancreas, distal pancreatectomy and splenectomy and ta dah! Here I am whinging on this forum! To be fair, it could have been a lot worse, "all" I've got now is diabetes and a dodgy gut! I've stocked up on Creon for my holibobs, so if you're in Cornwall next week and see a woman who looks just like me but with a very bloated tummy wobbling like a weeble, it will be me! Ha! You've got to laugh, not much choice really. Take care. Elaine.

 

[grovesy]

Enjoy your holiday!

 

[mikeyB]

Yup, have a grand time in the Duchy, and behave yourself with those cream teas.🙄

As to the original question, I wouldn't wish pancreatitis on my worst enemy, it's more than just a bowel disorder. It's a different way of life, far more socially limiting than T1. And if my supply of Creon ever dried up, even if I were still supplied with insulin, I would slowly die of vitamin depletion. There's more to Creon than controlling the bowels.

 

[pottersusan]

Gastric dumping syndrome, steatorrhea ...It's all good clean fun😱

Us folk without any pancreas (need a snappy name for this) are pretty rare beasts, though becoming more common.