Wait, so *too much* Creon can cause the same issue as not taking it when you need it with the trap-door diarrhea?
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[Possibly TMI for some] Type 3C and incontinence?
- Thread starter Austin_98
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Wait, so *too much* Creon can cause the same issue as not taking it when you need it with the trap-door diarrhea?
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.
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?).
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?).
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
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
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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
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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?
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
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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.
Oh, sorry, I thought I'd said: I'm definitely losing weight and I did tell my doctor. I was 10st3lbs at the end of November (2024) and I'm currently 7st9lbs
Thanks, I'll ask about the nutritional drinks. I've had them before and I actually really like them. Specifically, I really like the milkshape type of Ensure. But obviously, if I got another brand and didn't like it, I'd still drink them for the nutrition.
I think I'm having *some* symptoms from malnutrition like tiredness (very weak sometimes), general aches, my teeth don't look great and my hair is falling out in clumps (small clumps, but still clumps. It's not alopecia; I don't have like a bald spot or some area like that. I'm lucky 'cause I have really thick hair, so it's not noticeable....but, yeah, I'd like to get healthy ASAP.
Morning Austin,
That is a big weight loss and mine was from 86kg down to 68kg but I lost a lot after my pancreatitis attack as I was not eating plus my diet was ultra low fat as I was so worried about triggering another attack/ did not feel like eating as was generally not feeling great.
I did not like the Ensure but that was more due to the fact they gave me some in hospital and it triggered a bout of vomiting ( again in my attack that feature was particularly severe so I had a real mental block in wanting to avoid that symptom).
So I eventually went back on the Ensure as so important to get the nutrients into my system,
I was so worried about losing the weight ( as it was a high chunk of body weight and I was not that overweight to start with) and just felt tired and listless that I saw the dietician.
As I said they diagnosed or suggested the EPI and recommended the Creon/ Ensure and changing my diet to get more fat etc in my diet.
It transformed how I felt over the next 2-3 months I gained weight,I felt so much happier and energised and really helped my recovery.
I felt much more like my normal self and went back to work etc.
Take care
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PS Austin you probably need to push this issue more as if you continue to lose weight you will become more ill and the lack of nutrition etc will cause other parts of the body to become effected and it is hard to tell what is causing you to be tired etc.
Certainly the weight loss was impacting me a lot but just reached a point where I had to see an expert for advice and needed to do something about it.Suggest you do seek this type of advice.
Certainly the weight loss was impacting me a lot but just reached a point where I had to see an expert for advice and needed to do something about it.Suggest you do seek this type of advice.
The Immodium maybe helped minimally, but not really. I'm a rare example where opioids (which Imodium IS, it just isn't psychoactive) don't cause any constipation at all (the basis for which Imodium works)
Yeah (I'm down to 7st7 now, so I've lost more than 25% of my body weight) and I think I LOOK ill now. Like, gaunt.
Definitely gonna try and be confident and really push the point of Creon and help with weight gain (or at least not losing any more) at my appointment on Monday.
Austin so pleased you recognise you need to try and assert yourself to seek some help to reverse your current situation.
I had lost about 18% of my body weight and really could not afford to lose anymore.It was only when I put weight back on and everyone remarked how much better I looked that I realised how gaunt I had become with muscle loss etc.
Changing my diet literally transformed my life as when you are weak it is hard to tell if it is due to your underlying condition or simply you are not getting enough food.
Good luck
Proud to be erratic
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I can but only agree with @Wendal and encourage you to be assertive and seek that help. Your weight loss is serious; your lack of PERT, in the form of Creon one of 3 or 4 types of PERT, to help provide stable digestion will most certainly not be helping you either.
You aren't being given a fighting chance to manage your D better and your lack of bowel control is completely unacceptable for any reasonable form of daily living. Has the poo sample now been submitted and are the results showing on your NHS app - records of results?
You aren't being given a fighting chance to manage your D better and your lack of bowel control is completely unacceptable for any reasonable form of daily living. Has the poo sample now been submitted and are the results showing on your NHS app - records of results?
Austin my BMI at is lowest was I think 18.9 and I weighed 68kg.