anyone else on creon?

[megan]

Hi, I'm back eventually.....I am now on creon as it turns out I am missing an enzyme...was wondering if anyone else has any experience of this? trying to lose weight...have a very healthy diet....been working through loads of stuff that's too long a story to go on here at mo......struggle with IBS, ME, Fibromyalgia bla bla bla and depression and massive brain fog!!

 

[tomvonc]

Me, I'm on 40000units with every meal. I would describe my pancreas as a useless withered grape. Still Creon seems to do the job. I'm putting weight back on. Just wish they'd pull my ******* Pancreas out. Would be able to give up the 240mg of Dihydrocodeine I need a day :-(

 

[jules65]

Yes, I take Creon, I have 10,000 / 25,000 / and 40,000 unit tablets, but find it is better to take the smaller ones but loads more of them throughout the meal, so take a couple before first mouthful and then a few more during & after. You can't overdose on them, you have to find your level to stop the steatorrhea, they only need taking with food that contains fat.

I've had my b*****d pancreas out, life ain't much fun, it was easier with it, but at least I'm mostly pain free now & off Morphine, and what pain I do get I say "it can't hurt, it is not there"

 

[tomvonc]

I did hear somewhere that strangly, even if a pancreas is removed, the pain continues, kinda like a phantom limb. I just knock back a 40000 pill everytime I eat. 2 if it's particularly fatty. Seems to stop the floating turds anyway. Sometimes it gets me down, thinking that the rest of my life is just going to be a succession of medical complaints :-(

 

[tomvonc]

Jules, may I ask what 'Brittle diabetes' is?

 

[jules65]

All Brittle Diabetes means is - 'hard to control'. In my case this is because once the pancreas is totally removed not only do you not have beta cells (insulin) you also have no alpha cells (glucagon), consequently even if you've not overdone the insulin you can still hypo because I have no natural glucagon to kick in & tell the liver to dump any stored glucose. I was offered a pump pre-op, but declined as IMO it doesn't suit my lifestyle (I teach yoga) so, I live in 2 hour windows....

I had zero exocrine function of the pancreas (fat digestion) pre-op but it is much, much worse without the **** thing. Even a handful of peanuts without Creon with give me faecal incontinence. (I must also tell you that I only have half my bowel as well).

Yes, it is phantom pain (feels very real!!) doesn't happen often, thankfully, and considering how often I used to be hospitalised I am glad to have had it removed. It is not the life I wished for, but I wake every day grateful to be alive (3 previous life support situations & a dodgy pancreas that was potentially going to PC).

 

[tomvonc]

Thanks for that. I think my pancreas is going the same way. I have had four bouts of acute pancreatitis in the last year (Hospitilisation, fluids and IV morphine is the only treatment) I took the liberty of looking at your profile, than looked at your website. Was intrigued at using yoga to control pain. I am also sick of necking back opiates, and would try anything. I used to do yoga quite a few years ago. Do you actually use yoga to treat the pain so to speak, or to change your state of mind so you can cope with it better?
Also, does the fact that you can't make glucagen mean that a night time hypo is potentially fatal?

 

[jules65]

I used it to help me change my state of mind to cope better, it made my opiate use much less.

I don't know the expert ins & outs of being pancreas-less and neither did my DSN who's ignored me since last summer, I'm glad I don't live alone, OH has rescued me too many times to count.

 

[megan]

sounds **** guys!....I've done mindfulness and Emotional freedom technique to help with issues. its the only thing that has helped a bit. my diabetes is brittle too as the dr's put it years ago.
im a little confused about the creon at the moment. I was told to take one 10,000 capsule before each meal and eventually may need to increase. don't see the diabetic dr now for months and the gp doesn't know anything about it.
my IBS ranges from one end of the scale to the other. I can be constipated for days and days no matter what I do. my worst going back years, was 2 weeks.
I am also not trying to gain weight I am trying to lose it.
my diet is good......I get very bloated after food particularly in the evening so I 've taken an extra creon by my process of allumination!!
salads alone make my sugars spike, always have done. I was told not to take insulin on just salad but that would mean a horrendous spike. told today now not to take insulin for a 20g cho snack or less. wow I'd spike again on that.
so why am I not losing weight??
feel rotton. trying to avoid complications.
my sister sadly had all of them and eventually through endocarditis from one of the dialysis tubes she very sadly passed away recently. she suffered sooooo much it was awful.

this disease is awful but why is it still theres so much information I feel we should know yet we don't

 

[jules65]

Hi Megan, one 10,000 tablet is a very low dose, so that is good. You need to take it as you eat, certainly not without food. I don't know anything about taking it for IBS. You can't overdose, if you do the only side effect is an itchy rear end! It doesn't cause constipation. You only have to take Creon with food that contains fat.
I'm sorry you feel rotten, and saddened to hear about your sister.
There's lots of good info on here, but obviously some people can eat salad without insulin & some can't, some can eat a snack of up to 20g carb without bolusing, some can't. It all depends on your pancreas, and so many other variables, which is what makes it all so frustrating!
I hope you feel better soon.

 

[tomvonc]

You only have to take Creon with food that contains fat.

That's not entirely correct depending on the nature of the insufficiency. As well as Lipase (for the digestion of fat) Creon contains amalyse (for the digestion of starch) and protease (for the digestion of protein). Although, ahem agreed fat is the recognisable when you glance back down at the porcelain :-/

 

[jules65]

Oops, I do stand corrected, but the lipase content is always higher as fat is the main problem (certainly for pancreatic disease). I use the word Creon kind of generically for all enzymes because I also have Pancrease HL (HL- High Lipase) though I use Creon too now, depends what I'm eating as to what I take

 

[megan]

Hi Megan, one 10,000 tablet is a very low dose, so that is good. You need to take it as you eat, certainly not without food. I don't know anything about taking it for IBS. You can't overdose, if you do the only side effect is an itchy rear end! It doesn't cause constipation. You only have to take Creon with food that contains fat.
I'm sorry you feel rotten, and saddened to hear about your sister.
There's lots of good info on here, but obviously some people can eat salad without insulin & some can't, some can eat a snack of up to 20g carb without bolusing, some can't. It all depends on your pancreas, and so many other variables, which is what makes it all so frustrating!
I hope you feel better soon.

thanks

 

[megan]

it was due to it being a new dr and the mention of IBS that he tested me and found the insufficient enzyme. also went for a synactin test due to daily yukkiness and terrible anxiety feelings which also mimic hypo's. although the anxiety is improving as I get stronger emotionally....bit of a rough few years.....long boring story......synactin fine....although slept through most of it and felt instantly sick on part of it and very faint.....I couldn't stop apologising for being sleepy and thanked the nurses constantly.....not sure how this creon is going to work for me....dr says it should help me to absorb my food better and so help to improve my sugars?

 

[lollyann1]

Hi

Had Partial Pancreatectomy in 2009 so have got away with a few years before I was diagnosed with Type 1 last year following hospitalisation for Ketoacidosis! Had previously only been diagnosed with Type 2 for a few weeks. The Doctors were very reluctant to put me on Insulin even after Ketoacidosis!!!!

I take Creon with each snack and very small meal. Can only eat tiny amounts otherwise I have really bad pain.

Brittle Diabetes is horrible. I hate having really high sugars; don't know which is worse for me, Hyper or Hypo. Trouble is I am beginning to 'lose' the warning signs of an oncoming Hypo.

It is interesting to read about the pain that can and certainly does exist once the Pancreas has been removed, or, as in my case, the greater part removed, and the remainder has ceased to have any function. I must read up on it in further details. Anyone who has any good links please advise.

 

[Wallin]

I had a total pancreatectomy last November, which gave me brittle diabetes. As soon as I left hospital I asked to go on a DAPHE course. My diabetes nurse told me there wasn't one available. Several months later I started seeing the diabetes nurse at my doctors surgery. Again I asked to do a DAPHNE course. The nurse told me that it wasn't necessary as she could teach me everything I needed to know. She promptly left on six weeks leave, and I haven't seen her again. I then saw the diabetes doctor at my GP surgery. After several weeks of struggling with my insulin doses he said that I would benefit by doing the DAPHNE course. Hallelujah !
The only fly in the ointment was that the waiting list at my local hospital was 18 months. Fortunately I am seen for another condition at Salford Royal, and their waiting list was 6 months, so I have managed to get a referral there.
My BG levels range from 2.8 to 20.0 all within a day. There appears to be no rhyme or reason for the fluctuations. I can also drop from 13.0 to 4.0 within an hour and a half. I am testing my BG at least 10-12 times a day, and suffer from anxiety attacks. Again, no rhyme or reason when or why. As a previous member stated, They too feel like hypos. I am trying to get on with my life, but it is very frustrating. Had the doctor referred me to a hospital for the DAFNE course when I first asked to do it, I might have been put on a pump by now, and hopefully gain some control over my BG.
I also take Creons with every meal, but need at least 125.000 ( 6x25.000) with each meal. I still become very bloated at night time, and still occasionally have trapped wind.
I live on my own, and for the first six months would wake up almost hourly, because I was so nervous of hypoing. Now I am resigned to the situation, and am sleeping a little better. If I hypo and die in my sleep, there are worst ways to go.
I am appalled at the lack of constructive help I have had, and the very long wait to do the DAPHNE. If I am lucky, it will still be at least another 6 months before I can have a pump. At what cost both physically, and mentally.

 

[Heathero]

Sorry but unable to help, re Creons -sounds difficult for you,however if you would like general advice re diabetes there are many knowledgeable people on this site. I hope you find Daphne useful look online too. To reassure you many people including me, wake when Hypo ensure you have jelly babies/ sugary drink eg small can of coke /fanta (if flat easier to drink ) to manage this. Hope it gets easier for you, having to wait for appointments never helps.

 

[Wallin]

Thanks for your support. At last I have a foot in the door at a good diabetic clinic. There is so much conflicting advice both on this site, and talking to other type 1 s that it is difficult to know who to listen to.

 

[Faith0811]

Hi all I don't have diabetes at the moment I was just recently diagnosed with chronic pancreatitis and the surgeon said m pancreas is starting to wither so he has started me on Creon 25000 2x with meal 1x with snacks and I'm not sure what is scarier the known or the unknown I spend hours at a time trying to research this but I still don't really know what to expect with this disease and to be honest my doctors don't really say much to help they just say " it is excruciatingly painful" well duh tell me something I don't know I take Tramadol and morphine every day I have codeine as well but I don't like to take it as it causes other problems that I just don't need. I know every case is different but any info on what I might expect would be helpful if this forum is only for diabetics I'm sorry for the interruption and would appreciate being redirected to another forum
thank you Faith

 

[suzi777]

I did hear somewhere that strangly, even if a pancreas is removed, the pain continues, kinda like a phantom limb. I just knock back a 40000 pill everytime I eat. 2 if it's particularly fatty. Seems to stop the floating turds anyway. Sometimes it gets me down, thinking that the rest of my life is just going to be a succession of medical complaints :-(