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

[Austin_98]

I developed a very severe form of pancreatitis (Acute Necrotizing Pancreatitis) in 2011 and 85% of my pancreas was destroyed (literally destroyed, like, it was completely necrotic).
I WAS given Creon, but it didn't really do anything. I wasn't even told what it was for (just "it'll help you digest food"). So I stopped taking it and everything was fine.
My remaining pancreas worked just fine until 3 years ago I was diagnosed with type 3C diabetes.
As of a test 13 months ago, I currently have zero pancreas function (at all, not just in relation to insulin).

Maybe 5 months ago or so I suddenly felt something...wet back there, so went into the bathroom and...I'd...well, **** myself. I was in opioid withdrawal at the time, so put it down to that.
But it happened maybe 5 or 6 more times since then. Sometimes I'd literally wake up and it had happened in my sleep. But now I have had three "accidents" in the last 24 hours. Where...I don't feel any NEED to "go" and then just all of a sudden it's happened.

Is this normal for type 3C? I do also have two herniated discs, which could be compressing nerves to my bowel so I can't feel it when I need to go?

 

[gail2]

i dont know if its normal for 3c , I suffer from issues like that and have to wear a pad in case of accidents which i do have.
its nothing tobe ashamed of. please see your GP and tell them about it; they will be able to help you

 

[Inka]

Are you taking the Creon now @Austin_98 ? Could it be related to an incorrect dose meaning you’re not digesting the food properly? You definitely need advice as this could be easily sorted.

I’m not Type 3c but I’ll tag @Proud to be erratic @Wendal and @eggyg who are amongst others.

 

[Wendal]

I developed a very severe form of pancreatitis (Acute Necrotizing Pancreatitis) in 2011 and 85% of my pancreas was destroyed (literally destroyed, like, it was completely necrotic).
I WAS given Creon, but it didn't really do anything. I wasn't even told what it was for (just "it'll help you digest food"). So I stopped taking it and everything was fine.
My remaining pancreas worked just fine until 3 years ago I was diagnosed with type 3C diabetes.
As of a test 13 months ago, I currently have zero pancreas function (at all, not just in relation to insulin).

Maybe 5 months ago or so I suddenly felt something...wet back there, so went into the bathroom and...I'd...well, **** myself. I was in opioid withdrawal at the time, so put it down to that.
But it happened maybe 5 or 6 more times since then. Sometimes I'd literally wake up and it had happened in my sleep. But now I have had three "accidents" in the last 24 hours. Where...I don't feel any NEED to "go" and then just all of a sudden it's happened.

Is this normal for type 3C? I do also have two herniated discs, which could be compressing nerves to my bowel so I can't feel it when I need to go?

Morning Austin,
I have had a necrotising acute pancreatic attack like yourself but 3 years ago ( virtually to the day) and probably caused similar damage to yours and then developed diabetes 18 months ago.
I have never experienced anything like you mention but it just be that I have not reached that stage in my journey and others may be able to comment further.
But I would stress everyone’s situation is different and our journey here will inevitably cause various digestive issues which will vary in appearance and frequency.
Appreciate it is something which is very distressing for yourself and hope you get the attention you require and others may be able to offer you more informed experience in this matter.
BW

 

[Wendal]

Are you taking the Creon now @Austin_98 ? Could it be related to an incorrect dose meaning you’re not digesting the food properly? You definitely need advice as this could be easily sorted.

I’m not Type 3c but I’ll tag @Proud to be erratic @Wendal and @eggyg who are amongst others.

Inka makes a good point re the Creon. I can get away with missing my Creon especially if I am having my breakfast so essentially fruit and also some lighter meals.But I still take it just more conservatively on occasions to eke out supplies but if you have stopped it completely then it will very likely induce EPI which is Exocrine Pancreatic Insufficiency so that is enzyme producing cells not the endocrine which include the insulin producing ones.
One of symptoms of EPI is very pale smelly stools as your food is not digested properly so nutrients et al are not absorbed properly and can lead to symptoms like you describe.
But you would have had the earlier symptoms first but anyway as Inka says you need to follow this up ASAP.

 

[Austin_98]

I'm not on any Creon, but it sounds like I should try and get on some ASAP?
I don't have very pale stools but I definitely think some malabsorption is going on as I eat probably in the 2300-2700 calories a day range and from have dropped from 9st6lb to 7st10lbs since November without reducing that caloric amount at all (and it's not due to activity as severe chronic pain has me very sedentary).
I often get RIDICULOUS gas, if that's also a symptom? Either burps or farts, but they smell very bad (the burps are so bad that my brother once said "Austin, did you EAT a FART?!"...which, while funny, IS what it smells like) and very copious amounts.

 

[Austin_98]

Are you taking the Creon now @Austin_98 ? Could it be related to an incorrect dose meaning you’re not digesting the food properly? You definitely need advice as this could be easily sorted.

I’m not Type 3c but I’ll tag @Proud to be erratic @Wendal and @eggyg who are amongst others.

No, I'm not on any Creon or PERT at all. I think my doctors were reluctant because I'm already on around 14 prescription drugs and they didn't wanna add another unless it's absolutely necessary...but it sounds like it probably IS vital now.

 

[nonethewiser]

I'm not on any Creon, but it sounds like I should try and get on some ASAP?
I don't have very pale stools but I definitely think some malabsorption is going on as I eat probably in the 2300-2700 calories a day range and from have dropped from 9st6lb to 7st10lbs since November without reducing that caloric amount at all (and it's not due to activity as severe chronic pain has me very sedentary).
I often get RIDICULOUS gas, if that's also a symptom? Either burps or farts, but they smell very bad (the burps are so bad that my brother once said "Austin, did you EAT a FART?!"...which, while funny, IS what it smells like) and very copious amounts.

7 years ago I was diagnosed with EPI, before then had nearly all those symptoms you've described above apart from weight loss, although thankfully never had any accidents the urgency to get to a loo or be near to one was a matter of importance.

As you've little or no pancreatic function you need to be started on Creon again, although you might think it does nothing it certainly does, replacing those lost enzymes.

Suggest you get a urgent referral to a Gastroenterologists to get checked out to rule out any other possible causes of your toilet incidents, but they will advice you on Creon dose adjustment, they may even prescribe a drug like Loperamide to help with your lose stools even just temporary or possibly long term.

 

[Chris88]

No, I'm not on any Creon or PERT at all. I think my doctors were reluctant because I'm already on around 14 prescription drugs and they didn't wanna add another unless it's absolutely necessary...but it sounds like it probably IS vital now.

You sound like you need PERT.
Without it you will continue with malabsorption, ie weight loss, and continue to burp like a fart.
Contact your GP for further testing and a prescription.

 

[Inka]

I'm not on any Creon, but it sounds like I should try and get on some ASAP?
I don't have very pale stools but I definitely think some malabsorption is going on as I eat probably in the 2300-2700 calories a day range and from have dropped from 9st6lb to 7st10lbs since November without reducing that caloric amount at all (and it's not due to activity as severe chronic pain has me very sedentary).
I often get RIDICULOUS gas, if that's also a symptom? Either burps or farts, but they smell very bad (the burps are so bad that my brother once said "Austin, did you EAT a FART?!"...which, while funny, IS what it smells like) and very copious amounts.

Yes! Get the Creon or whatever you’ve been prescribed and take it! You clearly need it, and hopefully it will help your problems a lot.

 

[eggyg]

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.

 

[Inka]

@Austin_98 I know you have other things going on in addition to the diabetes. If you feel those are affecting you or how you’re making decisions or anything, do speak to your GP about that in addition to the Creon. If your GP surgery has an online triage/consultation form, you could fill that in instead rather than phone up if that’s easier.

In this thread you were going to ask about the Creon:

A

Post in thread 'Any Type 3c's on Creon?'

Feb 6, 2024

Morning anxious your post is very similar to mine and yes we are not medical professionals but most medical diagnosis is based on a combination of clinical history and various symptoms and relevant test result.
So we can make a logical decision on balance of probabilities but anyway as far as diabetes is concerned generally it is one of two types so a Diabetes deficiency so the Beta cells simply don’t produce enough endogenous insulin so require a source external.
Essentially this is Type 1 but then the cause of this insulin deficiency can be sub divided into other types so Pancreatic...

• Austin_98

That was more than a year ago. I hope that you do ask now because you don’t need to suffer or let this affect you so much.

 

[Wendal]

I'm not on any Creon, but it sounds like I should try and get on some ASAP?
I don't have very pale stools but I definitely think some malabsorption is going on as I eat probably in the 2300-2700 calories a day range and from have dropped from 9st6lb to 7st10lbs since November without reducing that caloric amount at all (and it's not due to activity as severe chronic pain has me very sedentary).
I often get RIDICULOUS gas, if that's also a symptom? Either burps or farts, but they smell very bad (the burps are so bad that my brother once said "Austin, did you EAT a FART?!"...which, while funny, IS what it smells like) and very copious amounts.

Hi Austin.Can just totally endorse what others have said the weight loss is likely a direct result of EPI and that in itself is very important to try and reverse so please retry the Creon and as Elaine says is not a drug.
Your high gas levels are again indicative of digestive issues which Creon can help with.You seem to have a lot of other things going on which can impact on your life but sorting out any EPI imo is a priority as not receiving the correct nutrients etc is so critical to maintaining/ regaining your weight which is pivotal to fighting your other challenges.
In fact my decision to consult with a dietician who advised me to start Creon and also change my diet to include more fat( at the time I was in ultra low fat diet) was transformational in my whole health.
But I must stress apart from my pancreatic issues at the time I did not have any other relevant medical challenges.

 

[Proud to be erratic]

HHello @Austin_98, my arrival into diabetes and T3c was abrupt after a total pancreatectomy and other than the pancreatic cancer which necessitated the pancreatectomy I had no other co-morbidities. So I have no familiarity whatsoever with your pancreatitis, or your progression from a working panc'y to now you having no panc'y.

Like the other forum members who have commented today I am very clear that you do need the digestive enzymes that something like Creon provides. Without such enzymes most food that you are eating simply won't be properly digesting and your insulin dosing can become akin to total guesswork. You might eat 100gms of carbs in any one day, but how much of those carbs metabolise and reach your bloods just a guess.

I also have accidents when my bowel just, with only 2 or 3 minutes warning, empties. Fortunately these events are less than 12 a year. I have tried to emulate Poirot and use my little grey cells - to determine what was different on such days and thus why did my body behave that way on such days. Incorrect Creon dosing does seem part of the explanation, but the timing of such events is inconsistent in helping to verify my detective work. I can have an accident occur while eating a main meal (with Creon) or it can be over 12 hours of voluntary fasting. It seems to at least in part be associated with HOW I've taken my Creon - appropriate amounts spread throughout the meal. Eg one capsule every 3 or 4 mouthfuls of food - depending on how fatty that meal might be.

But sometimes I simply don't find any explanation that really satisfies me as to why some accidents occurred. I've been waiting for a gastro appointment for over 2 years and the triage process doesn't seem to bring me near the top of an appointment list. Because my accidental events are infrequent I have drifted into accepting these things occur - and my apathy is NOT helping me whatsoever, but my apathy is now my responsibility and can only be resolved by my becoming proactive and pestering someone.

I think, @Austin_98, that you absolutely do need to have a Pancreatic Enzyme Replacement Therapy (PERT), which translates into being prescribed Creon (or similar). But Creon may not be the full solution and you should seek an urgent referral to see a Gastroenterologist. That referral needs to be sufficiently clear that you need medical attention promptly. [My referral obviously doesn't have any clout to get me prompt assistance - my fault, now].

Whatever is happening with your body is blatantly, clearly complicated, no doubt not helped by other co-morbidities; it could be that other medications are worsening your circumstances. The smell is, I understand, an indication of malabsorption; but I am not medically qualified so my layman's understanding could be wrong. The urgency of bowel emptying was commonly encountered by nurses dealing with patients like myself after my pancreatectomy. They called it "Dumping"; a dietician on the ward some 5+ yrs ago also said it was related to temporary damage to my stomach - which was objecting to the surgical disconnection of my former pancreas from the stomach. My pancreatectomy was medically recorded as pylorus preserving, ie that surgical removal barely touched my stomach.

Your complicated medical condition needs assessing by a Specialist and a Gastroenterologist is, from what little I know, the right start point. He/she ought to be able to find a balance of meds, with maybe a one-off treatment of antibiotics, to bring you back into a stable and tolerable lifestyle. You could today have a gastro related internal infection that needs isolating and treating.

 

[everydayupsanddowns]

Hope you are able to get hold of some Creon, and that it helps with your digestive upset.

It’s a bit frustrating that you weren’t originally told what creon was intended to help with, and why you needed it

 

[Billy Bob]

@Austin_98
Hi I am speaking as my wife Sue carer she suffered with acute pancreatitis and lost a fair amount of her pancreas as well as having her large bowel removed and a ileostomy stoma fashioned , If she does not take enough Creon then her output from her stoma goes almost liquid so we ensure that she take at least Two 25000 capsules with a snack and up to six with a meal along side this she take Loperamide up to sixteen capsules a day . She also is type 3c but her Hba1c seem stable around 51 /52 so is on no diabetic meds at the moment .
I should stress that you should really be taking Creon or something else that replaces the enzymes so please get in touch with your GP . Kind regards Nigel

 

[Pumper_Sue]

No, I'm not on any Creon or PERT at all. I think my doctors were reluctant because I'm already on around 14 prescription drugs and they didn't wanna add another unless it's absolutely necessary...but it sounds like it probably IS vital now.

Creon is not a drug, it's a replacement enzyme to wont interact with any drugs you take.
If you haven't used it for many years I suspect you will have to see a specialist so you can get it prescribed again.
GP's are not allowed to prescribe it without a consultant say so.
Do be warned though it's very difficult to get Creon at the moment due to a world wide shortage. I only eat one meal a day as it takes four months each time to get my prescription filled.

 

[soupdragon]

Hope you manage to get hold of some Creon soon @Austin_98

 

[Wendal]

Creon is not a drug, it's a replacement enzyme to wont interact with any drugs you take.
If you haven't used it for many years I suspect you will have to see a specialist so you can get it prescribed again.
GP's are not allowed to prescribe it without a consultant say so.
Do be warned though it's very difficult to get Creon at the moment due to a world wide shortage. I only eat one meal a day as it takes four months each time to get my prescription filled.

FYI I got my initial dose of Creon sorted by my dietician who wrote to my GP and they got me a prescription straight away.

 

[martindt1606]

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.