Chronic Pancreatitis – Is there any hope?

[Sheryl]

Yes, as far as eating is concerned, listen to your body.

[fabianfred]

If I was in your position I would try the following...... Ten days of this diet.... Natural sugar such as palm sugar dissolved in hot water and limes or lemons... Use the juice and the pump. Take this instead of regular food. Avoid any work during that time s you will have less energy. Make a big batch at the start of the day... No need for it to be warm or hot when drunk. Plenty of the limes.. They are very good with all gastrointestinal problems.

Sent from my GT-N8000 using Thaivisa Connect Thailand mobile app

[fabianfred]

Pulp not pump...

Sent from my GT-N8000 using Thaivisa Connect Thailand mobile app

[Mobi]

If I was in your position I would try the following...... Ten days of this diet.... Natural sugar such as palm sugar dissolved in hot water and limes or lemons... Use the juice and the pump. Take this instead of regular food. Avoid any work during that time s you will have less energy. Make a big batch at the start of the day... No need for it to be warm or hot when drunk. Plenty of the limes.. They are very good with all gastrointestinal problems. Sent from my GT-N8000 using Thaivisa Connect Thailand mobile app

Sorry for being picky, but what I am supposed to do about the sky high blood sugar levels brought on by the palm sugar. (I'm insulin dependant diabetic).

Having diabetes, high blood pressure and taking blood thinners somewhat limits my options....

But I do appreciate the suggestion

[Douggie Style]

Hi Mobi,

truly sorry to hear about this...i'm not a doctor or have any medical knowledge

but as a practical matter i find a low diversity low GI fruit and low protein diet works well in a similar situation...(home remedy)

eg just papaya, rock melon or mango for breakfast (no other fruits or yoghurts keep it simple to one type)..along with a yakult or betagen (helps digest)

it seems very soothing on the guts..

then a smoothy with lots of veges for lunch..you may be able to blend in some almond meal etc

for dinner a small bit of protein only fish and tofu...unless you get a craving then a small slice of meat..

with your diabetes obviously you would have to watch your fruit intake..

just another option and something i find works well with the trots

hope you perserve and find a way to get through this

Edited December 10, 2013 by Douggie Style

[Sheryl]

He doesn't just have "the trots". He has chronic pancreatitis.

[fabianfred]

sorry...I forgot about your diabetes.... then in that case just drink lots of lemons or limes, whichever you can get easiest.

[Douggie Style]

 

He doesn't just have "the trots". He has chronic pancreatitis.

 

Yes Sheryl i can read.

Thank you kindly for your input

[Mobi]

On January 10th, on Sheryl’s recommendation, I saw Prof. Supot Pongprasobc at Siriraj Hospital. Dr Supot is clearly the foremost expert on pancreatic medical issues in Thailand and has written a number of medical papers on it.

The good doctor spoke excellent English and we spoke for a long f time during which I explained the history of my problems, and he was good enough to answer many – no doubt silly – questions.

At the end of the consultation, he expressed doubts that I had chronic pancreatitis as he said that my symptoms didn't quite fit, and in this was in spite of the diagnosis of the GI specialist at Phya Thai hospital who had told me that my condition as chronic pancreatitis after carrying out a MRCP.

Doctor Supot had read the MRCP report and had also looked at the DVD and was still unconvinced that my problem was pancreas related

.

The very next day after my appointment, I had the worst pains attacks I have ever experienced and they continued, almost without interruption for 3 days.

Anyway, to cut a long story short, he told me to carry on with the Creon, just in case he was wrong and yesterday I went back to have an ERCP (endoscopic ultrasound (EUS), which is considered the ‘gold standard’ of tests to see what is going on in the pancreas and involves sticking a tiny camera in my gut and having a close look at the suspect organ.

Incidentally, this is not a widely used test as it requires an expert operator (Dr Supot) and it is not cheap. Even at the ‘public’ section of Siriraj government hospital the cost was 23K Baht (all in). It takes a couple of hours and you are put to sleep. I dread to think what a private hospital may charge.

When I was back awake, the doc came to see me and told me un unequivocal terms that my pancreas was in good shape – nothing wrong with it at all!

WFT was that doc at Phya Thai doing? - putting the proverbial sh..ts up me?

As said above, as soon as Dr Supot had reviewed my MRCP report and discussed my symptoms with me he was 99% sure it wasn’t my pancreas, and after the EUS test, he is now100% sure.

He is convinced that I have a particularly bad case of IBS (irritable bowel syndrome), as pretty much everything else has been ruled out by numerous tests and by the nature of my symptoms. He told me that my constant, watery diarrhoea is not a typical symptom of pancreatitis but is a common symptom of IBS.

He confirmed that that IBS can also cause intense abdominal pains, such I have been having, and I have since verified this by my own research.

He also told me that IBS is aggravated by stress and the more I worry about my illness the worse it will get. Without going into details, I have been suffering from enormous stress over the last few months due to the collapse of my investment portfolio, so it all fits.

So I have stopped the Creon and I am now being treated for IBS which involves completely different medication, including some anti-depressants, so I’ll see how it goes. I will see the doc again on 13^th Feb to review progress.

I can’t tell you how relived I am to know that my major organs are all in good shape and hopefully this mental relief will help my gut problems.

In the meantime, I have 3 unopened bottles of Creon, worth 15,000 baht!! Anyone need any? (half price??)

I won’t go down the road of discussing the efficacy of Thai Doctors, as maybe I was just unlucky or maybe this was just a complicated condition to diagnose correctly.

Edited January 30, 2014 by Mobi

[Sheryl]

"......maybe I was just unlucky or maybe this was just a complicated condition to diagnose correctly."

I think the latter:

Certainly the nature of your problem has been very difficult for me to figure out.

IBS is a diagnosis of exclusion.

But one point confuses me -- didn't you already have an ERCP?

[Mobi]

"......maybe I was just unlucky or maybe this was just a complicated condition to diagnose correctly."

I think the latter:

Certainly the nature of your problem has been very difficult for me to figure out.

IBS is a diagnosis of exclusion.

But one point confuses me -- didn't you already have an ERCP?

I had an ultrasound, an Colonoscopy and an EGD (Esophago Gastro Duuodenoscopy), and an MRCP.

An ERCP (endoscopic ultrasound) is different, as The doc already had the above three reports to hand.

I quote from an informative article on the ERCP procedure: (Also known as EUS)

"If clinical suspicion remains high, and non-invasive imaging fails to support the diagnosis of chronic pancreatitis, we perform ERCP or endoscopic ultrasound (EUS)......"

" ERCP is considered the gold standard with a sensitivity of 70% to 90% and specificity of 80% to 100%. ..."

"The role of EUS is evolving but is taking on an increasingly more important role in the diagnosis and management of chronic pancreatitis .... The EUS instrument is inserted through the esophagus into the stomach and duodenum and manipulated to obtain high-quality images of the head/uncinate process, body, and tail of the pancreas...."

So I suppose it's not really a camera, (as with EGD), but an tiny ultrasound instrument that is inserted inside the patient

The full article,entitled, "How Is the Diagnosis of Chronic Pancreatitis Established?", can be found :

HERE

[Mobi]

BTW, Sheryl, I forgot to thank you for providing me with Dr Supot's name.

He is really great and at long last I feel confident that I have a specialist who knows what he is doing. He told me that most western doctors do not believe there is a cure for IBS but that he has had a lot of success in curing patients.

Lets hope he succeeds with me.

Mobi.

[Sheryl]

Yes, indeed. It really does pay to see the very best, though it often involves travel to do so.

If I recall correctly a UK doc also misdiagnosed so it is not all Thai docs! And I think your case is quite difficult.

Good news that your pancreas is OK.

[Tolley]

Gotta love these doctors.

From chronic pancreatitis to IBS in the blink of any eye.

Well the good news about IBS is that you can now start trial and error with diet as well to help manage your symptoms.

Kefir would certainly be worth a try. Great stuff for the whole digestive system.

[Sheryl]

There is indeed nothing to lose with kefir. Also an elimination diet (trial and error to find out which foods might be triggers).

[Mobi]

Yes, indeed. It really does pay to see the very best, though it often involves travel to do so.

If I recall correctly a UK doc also misdiagnosed so it is not all Thai docs! And I think your case is quite difficult.

Good news that your pancreas is OK.

Just for the record, the UK doc only saw me as an emergency case in A & E and while he suspected gall stones, he told me I needed to have an ultra sound etc. to confirm his suspicions.

Also remember he was an A &E ‘specialist’ not a GI specialist, like all the ones I consulted in Thailand.

Strangely, two of the meds he prescribed, which were discontinued by the specialists in Thailand, have now been prescribed again, (along with others) by Dr. Supot.

Make from that what you will, and I will keep my own counsel

[Mobi]

Regarding Kefir, I seem to recall a thread on this subject.

Someone posted that it was available in Friendship Supermarket I couldn't find it there.

Anyone?

[Sheryl]

PM Tolley. he is the resident expert re kefir.

[Chonburiram]

I still remember this quite negative post about the Sirikit Hospital where you were " fobbed off by a junior"...

The long silence in this thread is because I decided to correspond via PM to Sheryl, and over the past few weeks, she has given me very good advice which I have been following in an effort to try and solve my problems.

However, I have now reached an impasse and frankly I have no idea where to go from here, so I thought I'd put it back in public forum in the hope that someone out there has had a similar experience or can advise a plan of action.

To bring you up to date, back in September, I took Sheryls advice and went to Q Sirikit hospital in Sattahip to see if I could arrange to have an ultrasound to confirm the UK doctors suspected diagnosis of gallstones.

This was duly carried out and although I dont have a copy, it basically said that my organs (liver, kidneys etc) are fine and the gall bladder is full of sludge but no sign of any stones. It also said that there was no cholecystitis. In other words, according to the doc, the gallbladder seems to be in good shape. The ultra sound couldnt check out my pancreas, as there was too much gas.

I was then referred to another specialist who arranged for me to be admitted to have a gastroscopy and an endoscopy. (Cameras down my throat and up my backside). This was carried out last Monday, and was complicated by the fact that I had to be weaned off warfarin, (which I take because of my artificial heart valve), before the procedures and it involved a 3 night stay in hospital.

The results of both procedures show absolutely no abnormalities everything is normal. I have copies of both reports, and I was a surpised to read that the endoscopy report had the comment poor bowel prep. This was despite the fact that I hadnt eaten anything from midday on Sunday and even before then, very little , just boiled rice soup for the previous 24 hours - up until around 1 pm on the Monday when the procedure was carried out. I had followed all the pre- op guidelines to the letter. (I spent the entire Sunday afternoon/evening in the loo after taking the enema in the early afternoon and was still passing liquid from my bowel barely 2 hours before the procedure). I tried to tell them that my bowel did not appear to be completely empty but nobody was listening. I am not sure if the poor bowel prep had any serious effect on the camera's ability to discern any problems in the bowel.

Anyway, on Tuesday morning a young junior doctor came to see me and told me that there there's nothing wrong with me and I can go home.

I asked her about my severe abdominal pains and on-going diarrhoea and she said it is nothing surgical and probably just ibs. (irritable bowel syndrome).

I asked if ibs can cause such severe pains and she just said its not surgical and go see the medical department.

I asked if my pancreas could be the cause and she said they haven't examined it but my symptoms do not fit pancreatitis.

(I should add that I have independently taken a blood test for the enzyme amylase in my blood which came back normal so I think I can rule out pancreatic problems)

So I am back to square one and I dont even know if I should continue taking the meds that the doc prescribed for me back in the UK to alleviate the symptoms. I did try stopping them some weeks ago and had a bad pain attack the same night. I have even had pain attacks while taking the meds, and when that happens, I double up on the dosage and take Tramadol and paracetamol to deaden the pain. Even with all this, the pain rarely subsides for at least 4 hours and I am zonked out for the following 24 hours from the tramadol.

So I came home yesterday, and decided to soldier on without the meds which I stopped when I was admitted to hospital.

Last night I woke up at 1.30 a.m. with a very bad abdominal pain attack and was up most of the night, despite taking the meds and Tramadol to try and relieve the pains. I eventually fell asleep exhausted just before 6 am, and even then the pain was still present, although it had reduced in intensity.

I have to say that I feel very put out that I had no opportunity to see the specialist prior to the operation, and afterwards I was fobbed off with a junior who told me, Nothing wrong go home! I dont want to turn into a whinger and have to say that on the whole I was treated very well, both as an outpatient and in-patient.

But surely, this cant be right. I went there with a very serious, life-changing acute pain problem in my upper abdomen, along with chronic diarrhoea, and now, almost 2 months later, Ive been effectively told theres nothing wrong with me.

I can live with the diarrhoea, but the pains are almost unbearable, and I have no wish to spend the rest of my life becoming addicted to opiates to relieve the pain.

For those out there who may have some knowledge on this, the meds I was prescribed in the UK are Omeprazole 20mg (twice a day) and Buscopan 10mg twice a day. I double up on the Omeprazole when I feel a pain attack coming on.

So if anyone has any suggestions on where to go from here, maybe a really good specialist that they can personally recommend and who will take the time to listen to me carefully and not suggest expensive tests or procedures unless they are really necessary, as these days my funds are very limited.

Thanks guys, and if I have missed anything that may be relevant, please ask away.

Mobi

[GaryB1263]

There is hope Mobi. Hang in there and please keep us informed.

[Mobi]

I still remember this quite negative post about the Sirikit Hospital where you were " fobbed off by a junior"...

The long silence in this thread is because I decided to correspond via PM to Sheryl, and over the past few weeks, she has given me very good advice which I have been following in an effort to try and solve my problems.

However, I have now reached an impasse and frankly I have no idea where to go from here, so I thought I'd put it back in public forum in the hope that someone out there has had a similar experience or can advise a plan of action.

To bring you up to date, back in September, I took Sheryls advice and went to Q Sirikit hospital in Sattahip to see if I could arrange to have an ultrasound to confirm the UK doctors suspected diagnosis of gallstones.

This was duly carried out and although I dont have a copy, it basically said that my organs (liver, kidneys etc) are fine and the gall bladder is full of sludge but no sign of any stones. It also said that there was no cholecystitis. In other words, according to the doc, the gallbladder seems to be in good shape. The ultra sound couldnt check out my pancreas, as there was too much gas.

I was then referred to another specialist who arranged for me to be admitted to have a gastroscopy and an endoscopy. (Cameras down my throat and up my backside). This was carried out last Monday, and was complicated by the fact that I had to be weaned off warfarin, (which I take because of my artificial heart valve), before the procedures and it involved a 3 night stay in hospital.

The results of both procedures show absolutely no abnormalities everything is normal. I have copies of both reports, and I was a surpised to read that the endoscopy report had the comment poor bowel prep. This was despite the fact that I hadnt eaten anything from midday on Sunday and even before then, very little , just boiled rice soup for the previous 24 hours - up until around 1 pm on the Monday when the procedure was carried out. I had followed all the pre- op guidelines to the letter. (I spent the entire Sunday afternoon/evening in the loo after taking the enema in the early afternoon and was still passing liquid from my bowel barely 2 hours before the procedure). I tried to tell them that my bowel did not appear to be completely empty but nobody was listening. I am not sure if the poor bowel prep had any serious effect on the camera's ability to discern any problems in the bowel.

Anyway, on Tuesday morning a young junior doctor came to see me and told me that there there's nothing wrong with me and I can go home.

I asked her about my severe abdominal pains and on-going diarrhoea and she said it is nothing surgical and probably just ibs. (irritable bowel syndrome).

I asked if ibs can cause such severe pains and she just said its not surgical and go see the medical department.

I asked if my pancreas could be the cause and she said they haven't examined it but my symptoms do not fit pancreatitis.

(I should add that I have independently taken a blood test for the enzyme amylase in my blood which came back normal so I think I can rule out pancreatic problems)

So I am back to square one and I dont even know if I should continue taking the meds that the doc prescribed for me back in the UK to alleviate the symptoms. I did try stopping them some weeks ago and had a bad pain attack the same night. I have even had pain attacks while taking the meds, and when that happens, I double up on the dosage and take Tramadol and paracetamol to deaden the pain. Even with all this, the pain rarely subsides for at least 4 hours and I am zonked out for the following 24 hours from the tramadol.

So I came home yesterday, and decided to soldier on without the meds which I stopped when I was admitted to hospital.

Last night I woke up at 1.30 a.m. with a very bad abdominal pain attack and was up most of the night, despite taking the meds and Tramadol to try and relieve the pains. I eventually fell asleep exhausted just before 6 am, and even then the pain was still present, although it had reduced in intensity.

I have to say that I feel very put out that I had no opportunity to see the specialist prior to the operation, and afterwards I was fobbed off with a junior who told me, Nothing wrong go home! I dont want to turn into a whinger and have to say that on the whole I was treated very well, both as an outpatient and in-patient.

But surely, this cant be right. I went there with a very serious, life-changing acute pain problem in my upper abdomen, along with chronic diarrhoea, and now, almost 2 months later, Ive been effectively told theres nothing wrong with me.

I can live with the diarrhoea, but the pains are almost unbearable, and I have no wish to spend the rest of my life becoming addicted to opiates to relieve the pain.

For those out there who may have some knowledge on this, the meds I was prescribed in the UK are Omeprazole 20mg (twice a day) and Buscopan 10mg twice a day. I double up on the Omeprazole when I feel a pain attack coming on.

So if anyone has any suggestions on where to go from here, maybe a really good specialist that they can personally recommend and who will take the time to listen to me carefully and not suggest expensive tests or procedures unless they are really necessary, as these days my funds are very limited.

Thanks guys, and if I have missed anything that may be relevant, please ask away.

Mobi

Yes, thanks for reminding me - I'd almost forgotten what I had written what seems like an age ago.

Following the lack of proper diagnosis at Q Sirikit I went to Phyathai in Sri Racha where I had an expensive MRCP scan and was diagnosed with chronic pancreatitis.

The specialist at Siriraj, Prof Supot, reviewed the same MRCP scan and effectively told me that he thought the diagnosis by the specialist at PhyaThai was wrong.

The ERCP procedure has now confirmed his suspicions.

Interestingly, I am now back on Omazaprole, Buscopan, (much higher dosage), (first prescribed for me in the UK), plus some other 'diarrhoeal' meds and low dosage anti-depressants, all of which seem to be working. No pain attacks, no diarrhoea, and even a few, small properly formed stools - the first for months.

I guess you ‘pays your money…’ and all that jazz, but I have to say it is all a bit worrying. From being diagnosed with a life threatening condition that can only get worse and slowly degrade my quality of life, I now find that I have something that is not life threatening and even curable.

Its early days yet, but maybe the lesson to be learned from all this is,(as Sheryl keeps banging home), that it’s the doctor that counts, not the hospital, and always go for the very best- it will probably pay in the end.

It

[Sheryl]

Yes, I do keep saying this, but I am constantly running into people who are unwilling to travel for medical care -- even an hour let alone several - and insist on getting care where they live. Which, unless it is Bangkok (and in some cases CM or Khon Kaen) will mean not getting the best.

Why people give so little importance to the choice of doctor/assume they are all the same, I cannot fathom. But so it goes.

[Chonburiram]

... a young junior doctor came to see me and told me that there there's nothing wrong with me and I can go home

I asked her about my severe abdominal pains and on-going diarrhoea and she said it is nothing surgical and probably just ibs. (irritable bowel syndrome)...

... Dr Supot is clearly the foremost expert on pancreatic medical issues in Thailand and has written a number of medical papers on it.

The good doctor... is convinced that I have a particularly bad case of IBS (irritable bowel syndrome)...

...

[Mobi]

... a young junior doctor came to see me and told me that there there's nothing wrong with me and I can go home

I asked her about my severe abdominal pains and on-going diarrhoea and she said it is nothing surgical and probably just ibs. (irritable bowel syndrome)...

... Dr Supot is clearly the foremost expert on pancreatic medical issues in Thailand and has written a number of medical papers on it.

The good doctor... is convinced that I have a particularly bad case of IBS (irritable bowel syndrome)...

...

Good point.

However, she only mentioned that it might be IBS as more or less a throw away remark, because I kept pushing her for a diagnosis.

Further, nobody at Q Sirikit suggested I make a follow-up appointment to find out what was actually causing my terrible pain attacks and daily, chronic diarrhoea, or to treat me for IBS, if that is what they really thought. They just told me to go home.

Anyway, the main thing is that I continue to make very good progress with my new meds under Dr Supot, and again, as Sheryl has said, my case isn't straight forward. So I'll leave it at that, and not try to apportion blame. It is what it is.

[Sheryl]

Glad to hear you are finally doing better.