Chronic functional abdominal pain or Chronic Pancreatitis

Digestive health
1

Hi There,

I am posting this in the hope that someone maybe able to steer me in the right direction....

Over the past year I have seen 3 GI specialists and one chronic pain specialist to get to the bottom of my pain.

I have had epigastric pain and pain under my right rib a little over a year now with back pain above the bra line. This pain is pretty much constant (worse as the day gets on) and can be aggravated more from exercising. The epigastric pain is dull pain but the pain under my right rib is like twinges of burning type pain. I have rheumatoid arthritis and was on pretty strong medication at the time. I started having bouts of diarrhoea (nothing too serious) so I stopped the medication. I celebrated a couple of 50th birthdays and drank probably a little too much (bottle of wine on each occasion) and have enjoyed a few glasses several times a week of wine over the past 10 years. The diarrhoea stopped and my stools have been normal for the past year.

I developed pain in my epigastric area which hasn't gone away and just in the last few weeks has been getting worse. I don't suffer from nausea or any other symptoms with the exception of foul smelling gas from time to time and a noisy high pitched whistle coming from my stomach...also from time to time.

At the time I became sick I lost 7 kilos in weight as food wasn't my friend and was very stressed through worry which no doubt contributed to it. I have since put all this weight back on plus more as they put me on antidepressants to help with my pain (20 mg) so I have no problem eating. I have continued to have my few glasses of wine a couple of times during the week in which my pain is helped as I think those glasses relax me. My pain isn't relieved from leaning forward...it actually hurts more and with exercise it becomes worse. I see a chiropractor weekly which helps manage my pain and he always notes that my diagram is stressed and at times inflamed and my epigastric area is restricted.

I have had every test which all tell me I am a picture of perfect health with the exception of a 0.5 mm cyst on my pancreas on my 2nd Mrcp which no one seems to be concerned about (they say this is very common).

I have had the following tests:

1 x ultrasound

1 x Ct scan with contrast (adominal and chest)

2 x Mrcp (one when I first developed symptoms and another 6 months later)

1 x hida scan

1 x bone scan

2 x upper gastroscopy

1 x colonoscopy

1 x stomach emptying test

1 x exploratory laparoscope

1 x breath test

I have had blood tests every month for my RA where they have all been perfect and since I have been in pain they have done further checks and have checked my amylase and lipsase on 3 occasions where they have all been normal. No raised inflammation etc. They have tested me for celiac disease.

All my specialists including two GP's have diagnosed me with a functional abdominal disorder (not ibs though as I don't have problems with bowels) as they cannot find any pathology to support anything else.

I am becoming quite depressed with this pain and not really sure if I should be accepting this diagnoses. The problem is that as they feel that there is no evidence to suggest chronic pancreatitis that in their opinion it is most certainly ruled out. They says that I should have something either in my bloods or scans.

Do you think I have done everything to rule CP?

I am sorry for the long post but I thought that reaching out to this group I might be either able to put my mind at rest and accept my diagnoses or tell me to continue to explore the chronic pancreatitis path.

Thank you for taking the time to read my post.

Regards

Karen

2

Hi Karen,

If your lipese is always normal, you probably don't have CP.  My lipese never goes to normal and ranges from 1500 to 6000 when in an attack.  I have also had all of the tests you list but according to my GI, the only way to diagnose is through EUS.  I have had CP since 2014 with pseudo cysts, stones, etc and when I am in an attack, there is no confusing the pain.  It radiates from my rib cage to my upper back and it hurts to breathe.  I hope this helps!

3

Seems like we're in the same boat. I've had most of the tests you have, with everything being negative. The only thing that was found was a 12mm cyst on the tail of my pancreas in August, but a CT scan 2 weeks later found nothing and subsequent ultrasounds and MRI did not either. Bloods are also all normal.

4

KWS is right about the pain -- for me it starts with my bra feeling too tight, then pain starts right under my rib cage and rediates to my back -- like there is a big band of pain all around your abdomen.    Actually, your lipase and amylase levels may not necessarily be high (while mine were with the acute attack, they've been hanging around at 50-54 this year -- but the subsequent MRI and EUS showed it clearly has become chronic, because of the amount of scarring on the organ as well as visible obstruction in the duct.)  Gas, bloating and belching and indigestion accompany this frustrating pain.  Probably because, as the knowledgeable Physicians' Assistant in my GI's group tells me, enough of the pancreatic enzymes necessary for digestion weren't getting to the stomach and backed up so that they were essentially, digesting the pancreatic tissue.  Plus, partially undigested food then sits and basically rots in the intestines.  Disgusting, no?  For me, I might have a decent day, and no matter how little or early I eat "dinner" the discomfort (understatement) comes right around 10-10:30PM.    

Since my flare up came in January, I have gone back on my strict low-fat diet (or clear liquid only days, if things get really bad) and haven't had a drop to drink.    I try to go to yoga classes twice a week, and sometimes I do yoga when I'm awakened at night with milder pain.  The yoga helps calm the stress.  

I recently (OK a week ago!) had an ERCP when they put  a 4 inch stent (11 cm) into the pancreatic duct.  After about 4 days recovery (it really hurts your throat and esophagus) I have felt like my digestive system is working much better...although I still can have pain at night.  But at least it isn't every night.  I'm getting better sleep, and even able to sleep on my back.

If your scans have come back showing no damage to your pancreas or the pancreatic duct, you may well have escaped the diagnosis of CP.  Hopefully your gastric issues are more easily solved.  

5

A footnote to the above:  Talked with my GI this morning (he called to see how I was doing 10 days after the stent).  He decided as I am still having digestion problems, that I should start taking synthetic enzymes to replace what my pancreas may not be making enough of.  He thinks it may move me into the no-pain realm, and certainly capable of going back to a fairly active lifestyle.  The bad news - my pharmacy called to tell me what my copay for a one-month supply will be, and it is over $700!  (and it IS a covered Rx under my insurance).  I am in the US, and currently under Medicare, so hopefully will get a break after I reach $4850 out-of-pocket expenses.  Yet another example of how expensive drugs some of us need to live a normal life can be.  As my husband said, looks like an investment we will want to make, as a monetary lifestyle change is an easy trade for a lifestyle change due to pain, loss of energy and mobility.

The GI also wants me to consult with a surgeon in 4 weeks or so, to see how I'm responding to treatment.  

6

Hi There,

Thanks so much for replying. I have been reading that an endoscopy is the best resource. My doctors are baffled and as you say because my lipase is never elevated it essentially rules out CP. one thing they did find was a 1/2 mm cyst on my pancreas. Both the GI specialist and GP say that it is very normal to find this and that it doesn't mean anything and shouldn't be the cause of my pain. When I read up on cysts they talk about them being much larger in size and relate it to pancreatitis. My pain is changing.

If I try to excercise my esophegus gets very dry and if I breathe in deeply I feel it across my front ribs. Thanks so much for sharing, really appreciate it.

7

Hi there, frustrating isn't it....if they can't find anything they stop looking and put it dont to functional pain. I have a 1/2 mm cyst on pancreas but they say it is nothing. Not sure if I should be pushing this boat a little further. Wish you all the best and hope you find what is causing your pain soon

8

Hi Diane, thank you so much for replying. My pain is certainly isn't acute and is certainly tolerable but I know it is there and is starting to become a little worse. Mornings are good but as they day goes on the pain settlings in more but again only mild. I have started exercising but find anything of the cardio nature brings about back pain and a very dry esophegus and when I breathe in I feel the pain under my ribs. Have you try creon to help with your digestive system, I have heard really good reports on this. I have also heard curcumin and grape seed helps too. I know what you mean about lying on your back. I simply couldn't as I could feel the pain more. My doctors gave me Endep which is an antidepressant which helps me sleep and is used for pain. I have had great success with this but it is not fixing whatever the problem is. They did find a 1/2 mm cyst on my pancreas and I am going to ask more questions regarding this. They all say I should not be concerned about this. I have become such a worry wort and researching everything as I simply can't accept I have a functional disorder as I have foul smelling gas and it hurts when I excercise. I wouldn't have thought that would be the case. Glad to hear the Ercp when went and you are relatively pain free...hope this continues for you. Thank you again for replying, I really appreciate it as there is not a lot of knowledge with our GP here.