Chronic Pancreatitis – Is there any hope?

[Mobi]

Those you who follow my medical adventures will know that after going down the wrong road for several months, including one hospital who told me ‘there’s nothing wrong with you, go home!’ I was finally diagnosed with chronic pancraetitis about 3 weeks ago, after undergoing a 3- hour MRCP.

At first, it was thought I had gall stones, as all the symptoms fitted, but an ultrasound showed that there were no stones in my gallbladder, only sludge and it wasn’t inflamed. I then had a colonoscopy and a EGD which showed no abnormities.

It was the 3^rd specialist I went to see at a 3^rd hospital who suspected pancreatitis and ordered the MRCP which revealed my damaged pancreas.

The doc prescribed Creon (capsules full of enzymes to help break down the food) and a low fat diet, but so far I have seen little improvement in my symptoms.

Most days I still have terrible, debilitating diarrhoea, and still suffer from regular pain attacks in my upper abdomen. I have been given a pain killer, Ultracet, which helps to dull the pain, but it takes over an hour to kick in, and it still another 4-5 hours before the pain completely subsides, which means I have many sleepless nights.

I have been an insulin dependent diabetic for many years and I also suffer from hypertension and coronary disease, (which necessitated a replacement aortic valve 18 months ago), and I can say without doubt that this pancreatitis is by far the worst medical problem I have ever encountered. It seems that there is little I can do to improve my condition and the prognosis is that it may get worse, and may eventually lead to cancer.

Quite frankly, my quality of life is now becoming border line and I am unsure how long I can continue to suffer these pains and chronic diarrhoea before I decide enough is enough.

Yesterday, I woke up with bad congestion in my chest and I could hardly breathe. Then I found that my heart rate was going up and up to dangerous levels. I made an appointment to see a cardiologist but as I was driving to the hospital, I received a call to tell me he had cancelled out.

I decided to go to the pharmacy and buy an inhaler to ease my breathing, as this was clearly the cause of my elevated heart rate. I was right. Almost as soon as I started the inhaler, my breathing eased, and over the next few hours my heart rate came down, although even now, 24 hours later, it is still a bit elevated.

This morning I still feel like shit from my chest complications and on top of this,I have had violent attacks of diarrhoea, despite being very careful with my diet and taking the Creon in the way prescribed. I even had some pains in my abdomen, but not bad enough to double over in pain as I usually do.

I am telling you this so that you can see that with my myriad life threatening health problems my life has become a daily struggle, and whereas I was prepared to soldier on with my diabetes and heart problems, this chronic pancreatitis is the straw that may well break the camel’s back.

If anyone out there has any practical suggestions on how to ease my pancreatitis symptoms I will be eternally grateful, as I am really not too sure how much longer I can continue along this path. It’s wearing me out…physically and mentally…

Thanks

Mobi

[Sceptict11]

Hi Mobi

Sorry to learn about your problems.

As you are continuing to suffer pain and chronic diarrhoea I would urge that you consult with your gastroenterologist urgently.

The analgesic you have is tramadol 37.5 mg and acetaminophen 325 mg. It may be worth asking if it would be helpful for this to be re-evaluated.

There is also a medication called Cholestyramine which you might ask about. (This may help with the diarrhoea

Please see your specialist as soon as possible.

[Mobi]

Hi Mobi

Sorry to learn about your problems.

As you are continuing to suffer pain and chronic diarrhoea I would urge that you consult with your gastroenterologist urgently.

The analgesic you have is tramadol 37.5 mg and acetaminophen 325 mg. It may be worth asking if it would be helpful for this to be re-evaluated.

There is also a medication called Cholestyramine which you might ask about. (This may help with the diarrhoea

Please see your specialist as soon as possible.

Thank you for that.

Unfortunately, the specialist has already told me there is little more she can do. She said that unless my condition deteriorated considerably (such as my diabetes becoming completely out of control or sudden,severe loss of weight) then there was nothing more to be done except an annual CAT scan to check on cancer.

Before you start suggesting yet another change of doc, all my research on some very good 'pancreatitis forums' etc, has confirmed that there really is little more I can do. There's thousands of people out there (in the USA /UK etc with good access to specialists) who are suffering just like I am with little hope of any relief.

That's what I find so depressing.

Ultracet is a mix of Tramadol and Parecetemol, (37.5mg/325 mg), and I take two. Before that I was taking pure Tramadol and adding my own paracetamol. The pain is so great that nothing will touch it for the first hour or so and the trick is take the meds as soon as I feel an attack coming on. However, they sometimes start when I'm asleep, so it's too late to take the pain killers. The downside is that I feel 'zonked out' for 24 hours.

The doc also gave me some meds for diarrhoea, but warned me to use sparingly as they will only 'bloat my stomach'. In other words, they might relive the symptoms but not cure the problem. The problem is that the pancreas can longer do its job properly.

Anyway, I really do appreciate the suggestions, and I am always open to new ideas....

[Sceptict11]

Mobi

Not suggesting a change of Doctor !

There are , however , "things" to done in relation to pain control and the diarrhoea.

Asking can do no harm and might prove helpful!

[Chonburiram]

I assume with all your health issues you dont/stopped smoking long ago...

On http://en.wikipedia.org/wiki/Pancreatitis they suggest Morphine for pain treatment.

[Sheryl]

As mentioned in the prior thread, nerve blocks are often helpful in reducing the pain associated with chronic pancreatitis. For that, you need an anesthesiologist specializing in pain management.

This at Samitivej doctor is one of the (possibly THE) leading pain management specialist in Thailand and I believe could either perform this or advise who could:

Dr. Pongparadee Chaudakshetrin http://www.samitivejhospitals.com/RSSR/Reader.aspx?type=dr&id=11931619-2-1

As for the diarrhea, when did this start? Can you relate it to anything you ate or to the new meds?

[Mobi]

I assume with all your health issues you dont/stopped smoking long ago...

On http://en.wikipedia.org/wiki/Pancreatitis they suggest Morphine for pain treatment.

Stopped smoking 30 years ago, and stopped drinking 3 years ago - but probably too late.

I enjoyed the morphine when I had my open heart surgery, but frankly it scares me a bit if I have to take it on a regular basis.

Edited November 19, 2013 by Mobi

[Mobi]

As mentioned in the prior thread, nerve blocks are often helpful in reducing the pain associated with chronic pancreatitis. For that, you need an anesthesiologist specializing in pain management.

This at Samitivej doctor is one of the (possibly THE) leading pain management specialist in Thailand and I believe could either perform this or advise who could:

Dr. Pongparadee Chaudakshetrin http://www.samitivejhospitals.com/RSSR/Reader.aspx?type=dr&id=11931619-2-1

As for the diarrhea, when did this start? Can you relate it to anything you ate or to the new meds?

I've had the diarrhoea all along - many months. it has noting to do with the meds. It is part of my pancreatic symptoms. The food isn't digested and ends up as diarrhoea. Some papers explain the symptoms exactly as I have them. It seems that not everyone suffers from diarrhoea, but a great many do.

In fact I asked the doc if I should take the Omaprozole that the doctor in the UK prescribed, (it helps in food digestion), but she said that it would only make my diarrhoea worse.

As you know I've had my insides examined very thoroughly by all manner of tests and its only the pancreas that has showed up any problems. The doc didn't suggest it might be anything else.

In fact, I've had the odd day when the Creon and a no fat diet seemed to work and my bowel movements improved. But always the next day the diarrhoea was back with a vengeance.

Thanks for the reference to Dr Pongparadee. I will try to follow up.

[Sheryl]

I assume with all your health issues you dont/stopped smoking long ago...

On http://en.wikipedia.org/wiki/Pancreatitis they suggest Morphine for pain treatment.

Stopped smoking 30 years ago, and stopped drinking 3 years ago - but probably too late.

I enjoyed the morphine when I had my open heart surgery, but frankly it scares me a bit if I have to take it on a regular basis.

Yes, it is not a good idea for long-term chronic pain, for many reasons, not the least being that over time tolerance develops and it no longer works. And in someone with a history of alcoholism, addictive substances are best avoided to the extent possible.

In addition, Thai doctors are very, very hesitant to prescribe opiates especially on a long- term out patient basis.

[ericg1953]

Mobi,

I also have suffered from horrible stomach cramps for 2 years. I checked into Bumrungrad for 5 days and had every test there was. The Dr. was also in search of gallstones. All the tests came back negative. My regular Dr. at Bumrungrad suggested I see a gastro Dr. Who specialized in motility. So I went to see this Dr. and he also gave me Creon. It seems to work well for me. Maybe he would be someone who old help you.

http://www.samitivejhospitals.com/DoctorProfile/INTERNAL_MEDICINE_11920451/en

[Mobi]

Thank you for your post and the name of a doctor at Samitivej. He looks like he has good relevant experience.

It so happens that Sheryl has recommended another doctor at the same hospital who may be able to help me with pain management, so maybe I will go to BKK and give it a go.

As regards Creon – well I’ve been taking it for over a month now with no discernible improvement in my condition/symptoms. The diarrhoea has more or less continued unabated and I am still having approx three severe abdominal pain attacks per week.

If it wasn’t so bloody expensive I’d probably continue with Creon indefinitely, but as it is, I’m inclined to stop it soon and see if I get any worse. Certainly the various medical threads and learned papers on the subject of enzyme treatment have stated that it is still experimental and doesn’t work for everyone.

What I really need now is a VERY GOOD EXPERT on chronic pancreatitis - someone who treats many people who have this condition and who is up to speed with all the latest medical advances.

Maybe the good Professor Sutep is the one I’ve looking for.

Anyone else know anything about this doctor? I've seen so many that I'm becoming reluctant to try another one without being reasonably confident that he may be better than the last one.

[Mobi]

I've just discovered that Prof Suthep is professor of Gastroenterology at Chulalongkorn University. He is only at Samitivej for 3 hours on a Sunday afternoon.

I wonder how I would go about seeing him at Chula?

Or would it be better to see him at Samitivej and then try to arrange a follow-up at Chula?

[Sheryl]

Chula does have an after hours clinic where you can request a doctor but there is no way to know if you can see a particular doctor that way other than to go there in person and ask. ("clinic nok wela", 13th floor of OPD building, opens around 4 PM). And there are often long waiting lists for appointments. If you go through the regular public channel at Chula may see him or not, maybe one of the interns or residents working under him, and very rushed. And would have to arrive there very early morning.

Given all this and that you have to travel from Pattaya, if you want to consult this doctor better to do so at Samitivej.

However, while he is very well qualified, I am not sure his area of specialization is ideally suited to your needs. He specializes in motility disorders (IBS etc) whereas you really need a GI specialist with expertise in digestive disorders/pancreatic insufficiency. Particularly one specializing in pancreatic enzyme replacement therapy since frankly, other than pain management, that is pretty much all that modern medicine has to offer...and proper pancreatic enzymne replacement is a complex matter that needs to be individualized.

the foremost authority on this in Thailand is Dr. Supot Pongprasobchai but he appears to only be at Siriraj. Might try their new private hospital and see if he has hours there

Or if you want to see someone at Smaitivej then suggest this as probable best fit

http://www.samitivejhospitals.com/DoctorProfile/INTERNAL_MEDICINE_11920361/en

It will likely be just a consultation fee plus possibly a stool test to check for fat (you might be wise to bring a sample with you in case it is needed. As what they would be examining is fat content doesn't matter if a few hours old).

But be aware that there is not much modern medicine has to offer for chronic pancreatitis other then enzyme replacement and pain management. However proper enzyme replacement is complex and needs to be individualized and perhaps he can advise on that. Though the availability of enzymatic preparations in Thailand is really limited.

BTW are you on Creon1000 or Creon 4000? And how often? Patients generally need 40,000 - 150,000 IU of lipase to get fat malabsorption under control, a tab of Creon 1000 has only 10,000 IU and of Creon 4000, 40,000 IU.

Good discussion of pancreatic enzyme replacement therapy here http://www.medpagetoday.com/resource-center/pancreatic-insufficiency/dosing/a/40936 and also attached file, which was authored by Dr Supot

Thai-Journal-of-gastroenterology-vol-6-no-3-2896384.pdf

[Sheryl]

P.S. Forgot to give the contact info for Siriraj's private wing, it is here http://www.siphhospital.com/en/medical-services/medical-services.html The website is pretty useless, doesn't list docs available, suggest you have a Thai speaker call by phone.

[Mobi]

Wonderful stuff Sheryl. Thanks a million. I will follow up and advise.

I am on creon 10000 as it is the only one available at fascino in pattaya. I take 4 - 5 caps per meal which adds up to around 140000 per day.

At 7 pm I had a beef stew that I cooked myself using lean meat and now, at 12.45 am I am suffering from a severe pain attack. Maybe the meal was too big, or too much meat.This is after two pain free nights.

The doc at Siriraj sounds the right way to go. I'll see what I can do to make contact.

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[jdinasia]

Mobi ---

obviously talk to a doc .. but look into this.

I have no idea how your triglycerides are but as someone mentioned above Cholestramine (brand name Questran light) may be helpful with the bowel issues. In theory it is for triglycerides but it helps many people with IBD/IBS.

additionally a tertiary use for Elavil (a tri-cyclic anti-depressant) is in pain management, It raises the pain threshold.( generic name amityptaline.) Thais often take it as a sleep aid.

[Hedghog]

Wonderful stuff Sheryl. Thanks a million. I will follow up and advise.

I am on creon 10000 as it is the only one available at fascino in pattaya. I take 4 - 5 caps per meal which adds up to around 140000 per day.

At 7 pm I had a beef stew that I cooked myself using lean meat and now, at 12.45 am I am suffering from a severe pain attack. Maybe the meal was too big, or too much meat.This is after two pain free nights.

The doc at Siriraj sounds the right way to go. I'll see what I can do to make contact.

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I think you should also address your diet.

You shouldn't be eating red meat.

Small meals,with snacks of fruit or vegetables,in between.

Also no very spice food,cheese,butter,peanuts,cashew nuts.

Have your meals at,the same time each day.

7pm,is a little late for your evening meal,5pm would be much better.

Good luck with your next appointment.

[Hedghog]

Mobi.

You didn't mention how long you was admitted for after diagnosis.

Acute pancreatitis,a hospital stay of 3 days,nil by mouth.

Chronic pancreatitis normally requires a stay of 10 days nil by mouth,longer if complications arise such as necrosis.

Maybe Sheryl,could advise more.

Edited November 29, 2013 by Hedghog

[Mobi]

Wonderful stuff Sheryl. Thanks a million. I will follow up and advise.

I am on creon 10000 as it is the only one available at fascino in pattaya. I take 4 - 5 caps per meal which adds up to around 140000 per day.

At 7 pm I had a beef stew that I cooked myself using lean meat and now, at 12.45 am I am suffering from a severe pain attack. Maybe the meal was too big, or too much meat.This is after two pain free nights.

The doc at Siriraj sounds the right way to go. I'll see what I can do to make contact.

Sent from my GT-N7100 using Thaivisa Connect Thailand mobile app

I think you should also address your diet.

You shouldn't be eating red meat.

Small meals,with snacks of fruit or vegetables,in between.

Also no very spice food,cheese,butter,peanuts,cashew nuts.

Have your meals at,the same time each day.

7pm,is a little late for your evening meal,5pm would be much better.

Good luck with your next appointment.

Thank you for your comments and suggestion, which are much appreciated.

Red meat. Actually I don't eat much red meat at all - only when I make a stew - I usually confine my diet to chicken, pork and sea food. (as well as plenty of veg and some fruit.) The consensus of opinion seems to be that people with chronic pancreatitis can tolerate small amounts of lean red meat. Clearly last night I ate too much, it was so tasty . But your point is taken and I will have to watch this carefully in future. Most of my meals these days are quite small as I get full up very quickly. I have lost about 4 kilos in the last few weeks and my weight is still going down.

I never eat any nuts, or butter or anything fatty.I am keeping to as close to a fat free diet as is possible. Eating many small meals is a bit of a problem for me as I am also insulin dependant diabetic and managing my sugar levels is easier on 3 meals per day.

As regards the time for my evening meal - doesn't this depends on what time I go to bed? I tend to get up late and sleep late and usually have my evening meal between 6 and 7 pm. I rarely go to bed before about 12.30, so there is usually a minimum of five hours between eating and sleeping. Surely this is sufficient?

[Mobi]

Mobi.

You didn't mention how long you was admitted for after diagnosis.

Acute pancreatitis,a hospital stay of 3 days,nil by mouth.

Chronic pancreatitis normally requires a stay of 10 days nil by mouth,longer if complications arise such as necrosis.

Maybe Sheryl,could advise more.

Hi hedghog,

Sorry, you've lost me here.

Why should I be admitted?

Over the past few weeks I have had a whole gamut of tests, in two different hospitals including ultra sound, endoscopy, gastroscopy, and crucially, a MRCP (MRI).

The latter test confirmed the specialist's diagnosis of chronic pancreatitis. My pancreas has atrophied, almost certainly caused by a life time of heavy drinking. (I stopped 3 years ago).

Why do I need to stay in hospital? What would that achieve? Nobody, including the specialist has suggested that I do this. Reading the dedicated pancreas threads, I have not noticed that most people are admitted for chronic pancreatitis. Acute yes, but chronic?

Thanks

Mobi

[Mobi]

Mobi ---

obviously talk to a doc .. but look into this.

I have no idea how your triglycerides are but as someone mentioned above Cholestramine (brand name Questran light) may be helpful with the bowel issues. In theory it is for triglycerides but it helps many people with IBD/IBS.

additionally a tertiary use for Elavil (a tri-cyclic anti-depressant) is in pain management, It raises the pain threshold.( generic name amityptaline.) Thais often take it as a sleep aid.

Hi jd,

Thanks for the tip.

It might be worth taking a look at if I ultimately fail to get my chronic diarrhoea under control.

According to Wiki, the drug is used for liver problems and Chrohn's disease and can also be useful for IBS sufferers.

I have none of the above, but who knows for sure?

AFAIK My diarrhoea is caused by the failure of my pancreas to digest my food properly.

But I will certainly ask at my next consult, and see what he says.

[rixalex]

No advice to offer just best wishes. You've had a lot of battles in your life, don't give up the fight now mate.

[Hedghog]

Mobi.

The admission in both cases of pancreatitis,is for nil by mouth giving the pancreas time to rest.

Also antibiotics,pain relief are administered intravenously.

You are obviously pretty much up to speed,regarding diet.

I obviously can't go against specialist opinion,from doctors regards treatment.

Comments were made in good faith regarding personal experience.

Get well soon.

I think you already know,but there is no actual cure for pancreatitis,it can flare up again at anytime,a very complex illness.

[Mobi]

Mobi.

The admission in both cases of pancreatitis,is for nil by mouth giving the pancreas time to rest.

Also antibiotics,pain relief are administered intravenously.

You are obviously pretty much up to speed,regarding diet.

I obviously can't go against specialist opinion,from doctors regards treatment.

Comments were made in good faith regarding personal experience.

Get well soon.

I think you already know,but there is no actual cure for pancreatitis,it can flare up again at anytime,a very complex illness.

Yes, I understand and your contributions are much appreciated.

I have never had a fever and I don't think my pancreas has ever become inflamed, which I think is more common with acute. It just doesn't work properly....

It is good to be aware of everything to do with this condition, especially from people with personal experience.

Thanks

[Hedghog]

Hi Mobi.

On a lighter note.

I can understand you overeating on occasion.

When you have prepared a particular meal,maybe a favourite.

It is so difficult not to over indulge,I do it myself.

Personally french soft cheese is my weakness and do occasionally sample a little,Brie or Camembert,it breaks my heart when I have to give the majority of it away.

I have put this site on notification,or pm me if you just want to chew the fat,so to speak.

Maybe a bad choice of phrase,considering,but you know what I mean.

[Mobi]

I was doing some research on Dr Supot Pongprasobchai, the doctor that Sheryl recommend as an expert in PERT (pancreatic enzyme replacement therapy), for people with chronic pancreatitis .

Sheryl, the paper you attached was written by Dr Supot in 2005. During my research this morning I found a new paper published by him in 2013 and I was amazed to find in his summary (Abstract) the statement,

“Dietary fat restriction is unnecessary”

I read on and found the following:

“Treatment of severe PEI (pancreatic exocrine insufficiency)

Dietary modification.

Currently, dietary fat restriction is no longer recommended because study has shown that if the dosage of prescribed PERT is adequate, fat absorption will be highest in the presence of high-fat diet, not fat restriction.

Therefore,

normal-to-high-fat diet should be advised together with the adequate prescription of PERT.”

No mention of this is made in his 2005 paper, so I can only conclude this is a recent 'discovery' as it goes against everything I have been told and have read by other doctors and experts on the web.

So I have done some more research and found the following in a paper issued by a peer reviewed journal.

Q. Do patients with pancreatic exocrine insufficiency need to restrict their fat intake?

A. Classically, patients with pancreatic exocrine insufficiency were instructed to restrict fat intake in an attempt to reduce steatorrhea. A diet containing less than 20 g of fat daily was generally recommended. However, restriction of fat intake is linked to insufficient intake of fat-soluble vitamins (which are already malabsorbed in patients with pancreatic exocrine insufficiency) and malnutrition. As a consequence, fat restriction is no longer considered necessary in the management of patients with pancreatic exocrine insufficiency. In addition, efficacy of enzyme substitution therapy has been shown to be superior when enzymes are administered together with a high-fat diet compared to a low-fat diet.

The above statements in the two papers has blown my mind, as not only are they saying there is no need to restrict the fat in my diet, but they are saying that it is actually beneficial to have a medium-high fat diet as the meds work better!!!

Not every medical paper says this, so I am very confused.

As I am diabetic I have to stay on a low fat diet anyway, but maybe I won’t be so fussy about getting rid of all the fat.

It is all very perplexing….

I have attached copies of both papers for fellow sufferers who may wish to read them in detail. It is good stuff.

jgh12406.pdf

CP medical paper.docx

[Sheryl]

Mobi,

Thanks for this, you've contributed to my ongoing education!

It seems that indeed the current thinking is that moderate fat intake (about 30% of total calories coming from fat) is best. See also attached doc. Parrish_June_13.pdf

So Dr. Supot is very up to date....all the more indication to try to consult him.

BTW how long have you been diabetic? As your pancreatic problems will have been of long-standing, I'm wondering if you in fact have what is termed Type III DM...

[Sceptict11]

Type III DM is a highly controversial topic which perhaps is not best discussed here .

[Mobi]

If you read the attachment to Sheryl's last post you will see that the type 3 she refers to is not altzheimers but another type 3 that occurs with pancreatic problems.

She had me going for a moment...

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[Mobi]

I have had type 2 for over 25 years. I became insulin dependant about 22 years ago. My maternal grandmother was type 1 and my mother (decd), sister and brother are/were all type 2.

My profile seems to fit type 2 rather than the type 3 as described in the scholarly article

I just think that I was pre-disposed to have adult onset diabetes and the cp has been caused by a chronic drinking problem, but who knows for sure?

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