Pancreatic Insufficiency Anyone

Hello, I have had Exocrine Pancreatic Insufficiency for about 20 years and run an online support group. We have over 10,000 members worldwide and it's a mine of information.

If you'd like more info, send me a PM.

Sparklefizz

Hello, I have had Exocrine Pancreatic Insufficiency for about 20 years and run an online support group. We have over 10,000 members worldwide and it's a mine of information.

If you'd like more info, send me a PM.

Hi Could you tell me if it's a Facebook group you have ? Thanks

Yes, it's a Facebook group but it's not a public group, it's private. People have to apply and be approved to join.

Sparklefizz

Yes, it's a Facebook group but it's not a public group, it's private. People have to apply and be approved to join.

That's a shame, I don't do Facebook. Thanks anyway.

Many people have signed up to Facebook just to join the group. When they apply, we can see how long they have been a FB member and sometimes it's just days and they tell us they signed up specifically. You'd get a lot of support and info from the group and be very welcome ... so maybe something to think about.

EPI is rare and can be a challenge to cope with on your own.

Hi I've sent you a PM . Thanks

Have you been referred to a Dietitian? In my experience often people aren't and it makes a huge difference. Good luck

Yes, I have EPI. Symptoms ignored for months by docs and I dropped 2 & half stone. I can eat again, use Creon. Still haven't regained much of the weight but at least I can eat most things.

I have it too. It came on following my treatment for oesophageal cancer. I take Creon and it’s made a huge difference. I think a diet low in fat and sugar probably helps as well.

FionaB23

Have you been referred to a Dietitian? In my experience often people aren't and it makes a huge difference. Good luck

I haven't been referred to a dietician. My GP's don't understand anything about EPI , I've had to look it up myself. It took many stays in hospital over 7 months with chronic diarrhoea before they came up with a diagnosis. I lost 2 st in weight and I'm now vitamin deficient but can't tolerate the side effects of D3 as I have painful bladder syndrome which causes terrible burning. I was taking 25000 strength creon but it gives me terrible constipation so I spoke to a GP and he's lowered the dose to 10000.
Anyone else experienced constipation taking creon ? I'm still not eating very well and still feel very weak and shaky. I'm finding it a nightmare finding foods I can tolerate due to the PBS . Any food ideas welcome.

Any tips on taking creon would be welcome especially on overcoming the constipation it causes me .
I was just given a prescription and have been left to get on with it. I didn't see a consultant or a doctor and no explanation on why I've got it . I don't drink or smoke .

I thought I would post on this thread as my husband was diagnosed with EPI in August last year after two years of urgent and frequent diarrhoea and fatigue.

GP ran innumerable stool tests and blood tests and he stopped and started various medications over the past two years to try and identify the cause, never mind that he had been on them for many years.

Finally, I said to the GP - do you think his gall bladder removal two years ago has caused this issue as I had done some research on Google? GP never said anything but a week later he was asked for another stool sample. The stool sample was an Elastese test which is the diagnosis for EPI. The numbers for a normal reading should be 200 and his was 50.

Called in for a face to face appointment, this time with a locum who advised us he had EPI and he would need to take Creon for the rest of his life. Literally a 5 minute appointment - we had all sorts of questions but were actually escorted from the consulting room! This locum has form for this .. Having a cholecystectomy is a strong indicator for EPI apparently but we weren't told this at the time. Also having Type 1 Diabetes.

We were advised that he would be referred for a CT scan to check for pancreatic cancer. We did not have to wait long for the CT appointment and there was a nervous few weeks waiting for the result. Fortunately it was negative. We were then referred to a gastro enterologist and have had to wait 4 months to see the registrar at the hospital. He has referred him for a endoscopy as he gets tummy pain and given him some sachets to help with the diarrhoea. He also doubled the Creon dosage from 25000 to 50000 at each meal.

I think Creon has helped in that he no longer has accidents and doesn't have to rush to the toilet when out and about but he does have 3 or 4 bouts a day.

Hoping that the increased dosage and sachets will help but he is still very tired which I believe is due to his pancreas not being able to digest vitamins.

I joined the Facebook site and there are people on there who can hardly eat anything and lose lots of weight. Luckily my husband hasn't lost any weight and has a normal appetite.

Posters on there, particularly in the US are referred to a nutritionist and take vitamins. That doesn't happen in the UK. You are just advised to eat a low fat diet and avoid spicy food and alcohol completely. Drinking alcohol will damage the pancreas even further. This is going to be difficult for my husband as he likes a beer or several beers, just at the weekend. As he says, I like curries, cheese and a few beers and now my life is going to be miserable. He said he will stop alcohol after his 70th birthday next month but I fear he will find it very difficult.

I would add that many posters say you are put on the lowest dose of Creon to start with and nearly always it has to be increased.

"Nanato3" - you should be automatically referred to a gastro-enterologist to rule out other causes of EPI, e.g. pancreatitis, cancer etc.

mrsmeldrew Thank you for posting about your husband. I was put on Creon after 7 months of chronic diarrhoea every day and weight loss. I was admitted to hospital twice but was sent home both times with no explanation as to why this was happening. They did do a CT scan on my last inpatient stay but it took 7 months to be diagnosed with EPI . I'm struggling to get the dosage right with the Creon. If I keep taking it I get severe constipation . I had to ring my GP and ask for a lower dose . My doctors know nothing about EPI and I have no consultant. Because of other problems I am struggling to find foods I can tolerate so I'm still losing weight . I used to love my food but now it's the same thing over and over again I'm not eating much. I've never drank . I spend most of my time in bed due to the exhaustion . It's a terrible condition to suffer with especially with no support. I had my gallbladder removed a few years ago so it does seem to be related.

Nanato3 I am sorry to hear what you've been going through and completely understand because I have EPI myself.
I run an online support group as you will see further back in this thread. Our members find it such a relief to be able to "speak" with others going through the same thing.

If you'd like to join, send me a PM. You'd be very welcome.

Sparklefizz

Nanato3 I am sorry to hear what you've been going through and completely understand because I have EPI myself.
I run an online support group as you will see further back in this thread. Our members find it such a relief to be able to "speak" with others going through the same thing.

If you'd like to join, send me a PM. You'd be very welcome.

I would very much like to join your EPI group but I'm having problems with Facebook and haven't anyone to help me . I'm struggling with a flare up atm and haven't been told what to do in this situation.

Nanato3 I'm afraid once your GP has referred you to Gastro-Enterologist they don't want to know and they have little knowledge of this condition.

Sorry about the constipation. I guess the Creon is working! I wish my DH could get constipation after two years of horrible diarrhoea.

Can you contact your GP and ask for a referral to a gastro-enterology appointment? You should be entitled to one especially with your issues. You also need some vitamins and other food supplements. You cannot keep losing weight!

There seems to be little research into this condition. It is just a chronic condition that you have to live with.

It is important to have an elastese test after a few months on Creon to see if it has improved. The consultant asked my surgery to do the test - the surgery are arguing the hospital should do the test! I called the consultant's secretary and she said there request was on the ICE system and surgery should do it. Surgery say request not on ICE! It is ridiculous that patients have to try and sort this out.

I don't know if you can message on Gransnet but I could send you the article on the Facebook site which is helpful when you are first diagnosed.

mrsmeldrew It is important to have an elastese test after a few months on Creon to see if it has improved.

Creon is not a medication to heal the pancreas, it's merely to help us digest our food and is only effective for about 30 minutes. Our Elastase result can vary depending on what we've previously eaten. If a repeat test changes drastically and puts the patient into the "normal" category, then it's likely something else is going on, eg. SIBO, parasites, Candida, etc.

mrsmeldrew I don't know if you can message on Gransnet but I could send you the article on the Facebook site which is helpful when you are first diagnosed.

If you are talking about articles in the Group I run, everything in the Group is private and not to be shared to anyone outside the Group. It is a private closed Group and people do not want their posts or articles shared without permission. Thank you.

*Sparklefizz" why then would the NHS consultant ask for an Elastese test?

mrsmeldrew I've no idea but we have nearly 11,000 members in our Group and I've lost count of the number of times doctors and consultants have given the wrong information and advice. eg. They tell patients to take Creon 3 times a day instead of taking it with everything they eat, etc etc

Unfortunately many doctors and even gastro's don't understand much about EPI (and neither do NHS dieticians, judging by my own experience. )

If a patient has SIBO, and it is treated, then their elastase result can improve because SIBO can give an inaccurate result. A runny sample can also cause inaccuracy. But this doesn't mean that the Creon has healed the pancreas.

If your husband is still having diarrhoea, mrsmeldrew then there are various suggestions in the Group to help with that.

Hello , I'm having a flare up atm . Could anyone tell me if I need to go into hospital or is it best to stay at home ? I have loose stools and finding it difficult to eat and what to eat . Is it normal to have flare ups ?
Thanks