[Possibly TMI for some] Type 3C and incontinence?

[Austin_98]

Firstly I’ll say, Creon is not a drug, it’s an enzyme you can’t overdose on it. If you take too much it just goes right through you and leaves you with a stinging bottom ( TMI). I don’t have incontinence I always know when I need to go, but I do have “accidents” when I can’t reach the loo in time as sometimes the feeling is instant. You really do need to be Creon as it seems like you’re suffering from malabsorption. That’s a lot of weight to loose. Contact your GP ASAP.

Wait, so *too much* Creon can cause the same issue as not taking it when you need it with the trap-door diarrhea?

 

[Austin_98]

Just to add one comment (which I cannot see mentioned earlier) once you start taking Creon (or other PERT) you should find that you will need to recalibrate your insulin dosage. With PERT your digestion of carbohydrates will improve which should mean higher blood glucose levels and therefore an increased need for insulin. If taking Creon you should also take esomaprazole (or similar) twice a day.

My doctor didn't mention the last bit, but I do already take Omeprazole (20mg, once a day), I think just as a protectant for my stomach as I take Naproxen. My next appointment is on the 14th, so thanks for letting me know about that. I'll ask my doctor if maybe I need the Omeprazole dose increased.

 

[Austin_98]

Wow, I'm overwhelmed by so many kind, caring comments!
I apologise for not replying sooner (I would have liked to have replied to each of you individually as the replies came), but I have been in the hospital for the past few days.

My doctor actually thought I might have something called Cauda Equina based on my symptoms (which is a surgical emergency so I had to be hospitalized), but fortunately it wasn't that.

The doctors agreed it was severe pancreas insufficiency combined with increased pain from the unrelated (sort of) herniated discs. Frustratingly, while they kept me in hospital for a few days all they actually did was give me Imodium and IV fluids during that time (for the bowel issues and subsequent dehydration) plus added Oramorph (10mg, every 4 hours) to my ordinary Morphine (Zomorph 30mg twice a day and Sevredol 10mg twice a day) rather than actually sort out any Creon (not that I don't appreciate what they DID do).

I spoke with my doctor on the phone today and while she prescribed me more Oramorph for pain, I was disappointed to STILL not get Creon. She's asked me to pop into the practice tomorrow to collect a specimen thing so I can provide a stool sample and then has said she'll start me on Creon when she gets the results (I'm guessing the sample will give some information relating to how much Creon I need?).

 

[Wendal]

Morning Austin.
Sorry about your hospital stay but good you have some kind of diagnosis.
Yep Omeprazole is standard when you are on NSAIDs like Naproxen as an anti acid but also often given when patients are on Creon like myself.
Not sure what your dose rate is but I am currently only on one per day but have been on two per day in past.
Really surprised your GPs are still not considering putting you on Creon but you did not mention whether you are losing/ gaining weight or staying the same.
Are you on any nutritional drinks as I was on when diagnosed with EPI but I was told by my dietician ( went private as I was losing so much weight) so her advice was take the drinks,start Creon and get more fat in my diet( I was ultra low fat) and gradually over a couple of months my weight went back on and my general health was transformed.
Good luck

 

[Proud to be erratic]

Wait, so *too much* Creon can cause the same issue as not taking it when you need it with the trap-door diarrhea?

That's not been my experience - unless I'm completely misinterpreting my irregular "dumping / accidents". However, we are all different. A tub of 100 25k capsules lasts me c. 3 days; my prescription is for10 tubs monthly. I know that many other "Creonistas" take a lot less and @martindt1606 takes (or was before the current shortage) a great deal more. So our Creon experiences are remarkably different.

I think any excess of Creon just passes through me, relatively harmlessly. I'm certainly not aware of taking an excessive "too much" Creon. Insufficiency of PERT for me creates wind, bloating and fatty stools. If I've forgotten to take my Creon (this occasionally just happens - I'm ravenous and get carried away with enjoying my meal!) then I can relate the wind , etc with having "forgotten". My fault and my consequence!

 

[Proud to be erratic]

As @Wendal said, sorry you ended up back in Hospital again, @Austin-98. Glad the Cauda Equina was a false alarm, but perhaps a shame there seemed to be no follow-up on possible PEI while in Hospital. I just hope your sample allows your GP to fully sort this out for you. Did the Imodium help while you were in Hospital?

 

[Wendal]

That's not been my experience - unless I'm completely misinterpreting my irregular "dumping / accidents". However, we are all different. A tub of 100 25k capsules lasts me c. 3 days; my prescription is for10 tubs monthly. I know that many other "Creonistas" take a lot less and @martindt1606 takes (or was before the current shortage) a great deal more. So our Creon experiences are remarkably different.

I think any excess of Creon just passes through me, relatively harmlessly. I'm certainly not aware of taking an excessive "too much" Creon. Insufficiency of PERT for me creates wind, bloating and fatty stools. If I've forgotten to take my Creon (this occasionally just happens - I'm ravenous and get carried away with enjoying my meal!) then I can relate the wind , etc with having "forgotten". My fault and my consequence!

Austin as Roland says all our Creon experiences are different so for myself I have reduced my intake down to about 5 25000 capsules per day so none with breakfast, two for lunch and three for my evening meal and I find it works ok for me.
My point is that I make a judgement based on the advice I was given which was two for snacks and three for meals but recognise that we are all different in what we eat and what are requirements are.
A bit like judging insulin medication and that is why I find I like to find out as much as possible and make my own decisions as best I can but pay heed to the medical advice given but recognise it may be of amore general nature which may need some fine tuning by experimentation.

 

[martindt1606]

Wait, so *too much* Creon can cause the same issue as not taking it when you need it with the trap-door diarrhea?

If you have a healthy pancreas when you are eating it will provide you with over a million enzymes to digest your food. At 25k a capsule you are not going to get anywhere near that. When you take the capsules throughout the meal, what is needed will be used and any not needed will pass through naturally. It’s unlikely to cause diarrhoea if you take too many.

 

[Wendal]

If you have a healthy pancreas when you are eating it will provide you with over a million enzymes to digest your food. At 25k a capsule you are not going to get anywhere near that. When you take the capsules throughout the meal, what is needed will be used and any not needed will pass through naturally. It’s unlikely to cause diarrhoea if you take too many.

Austin as Martin says normally a healthy Pancreas will provide huge numbers of enzymes.The exocrine cells are located throughout the Pancreas and you can function fairly normally on only a small %age of these so you need a lot of damage or no Pancreas to be affected.