I need your help and expertise

[Guest guest]

They say to never self diagnose, but when you feel badly you do a

lot of research. At least I do anyhow.

About two months ago I started noticing a pain everytime food

entered my stomach. After eating I would experience pain under my

sternum, sometimes it would radiate to my back...sometimes not.

Sometimes I would feel extreme fullness and nausea. I didnt' keep a

food diary at the time.

Eventually the pain while eating subsided, but after eating I would

still get pain below my sternum radiating to my back, nausea, etc.

I had an ultrasound done, no gall stones and everything looked

normal. I had bloodwork done, normal amylase levels. I was

referred to a gastro who ordered a Endoscopy and Hida Scan. My

endoscopy was normal minus minor redness in my stomach. So no

reflux, ulcers and biopsy of redness was normal. Hida scan was

normal although I have yet to get my ejection fraction.

I have 3 really BAD episodes where right after eating I have a loose

stool followed by intense burning/stabbing pain under sternum that

radiates to my back. At the time so bad I can't get comfortable.

After the intensity wears off, I have pain the rest of the day that

is manageable but I am extremely fatigued, can't eat, close to

vomiting and just a general feeling of something is just not right.

I have no history of heartburn and my endoscopy did not locate any

acid errosion. In addition to the above mentioned symptoms, I

urinate frequently although I do drink 8-10 glasses of water and a

cup of coffee and I feel I belch more than most people. I have no

constipation or actual diarrheah minus the loose stools that

precipitate these attacks. Each attack was about a week apart. I

am scared for the next one...when I am not having one I still have

uneasiness below my sternum, sometimes a wave of pain but no back

pain. I don't seem to be tender to touch, but it doesn't feel good

either.

I noticed on my last attack it was the day after my hida scan, and

the loose stool had some bright yellow. I had 3 pale bowel

movements that I would consider a yellow in color this week.

My mother is a nurse and thinks it is my pancreas and that I should

go to a hospital immediately. My question to you is, is her concern

warranted. I have done a lot of research and I just don't think I

am as sick as everyone who has this ugly disease. Granted, when I

have had my 3 attacks...I felt horrible and scared, but not call 911

horrible.

Since everything has been normal in terms of tests for gallbladder,

wouldn't that also indicate I am ok with the pancreas? I just don't

know what to do and I can't get in to my doctor until the 29th. I

also think he will think I am nuts...and at times I feel nuts, like

nothing is wrong. I am pretty sure it is not my pancreas, rather

gluten or lactose intolerance that is bad.

Your thoughts?

[Guest guest]

Hi Snakecakegirl

You are quite correct about self-diagnosing - both that it is not

recommended and that sometimes that is the only option left to

you.

In many of the cases here, that is how the final diagnosis of

pancreas problems came to light. By persistent research and

searching for medical help by us patients. In my case, this is

true. I was convinced that it was my pancreas and lo and behold,

three years later it was confirmed by a doctor who was able to be

objective in his viewpoint.

As far as your symptoms: they are very vague and non-specific,

however, they do fit what a lot of us feel when it is the pancreas

giving us problems (most GI diseases have very similar

symptoms - from minor conditions to lethal ones). And yes, you

can have gallbladder problems that are not detected by HIDA

scan or endoscopy or US or CT that are severe enough to affect

the pancreas. There are several if not many, people on this

board who fit this scenario.

Basically to diagnose non-acute pancreatitis (I hesitate to call

this chronic pancreatitis) it is necessary to take a person's

symptoms seriously and to rule-out other more common GI

problems. It is not unusual for GI docs to toss around diagnoses

like IBS or acid reflux etc when some of the more simple tests

come up negative. However, if symptoms persist or are severe

then further investigation should be done including MRCP,

ERCP or even gallbladder removal. It sounds extreme but for

many people that is how you get down to the actual problem - by

ruling out the other ones. That is what happened to me. It is

usually a very long, frustrating and painful (literally) process that

can takes years.

Off the top of my head, based on my experiences with pancreas

and biliary pain, your symptoms could be consistent with an

intermittent spasm of your bliary tract which blocks off the flow of

bile into the duodenum. Sometimes this is referred to as biliary

colic. It also can be considered sphincter of Oddi dysfunction.

You may want to investigate this to see if it sounds similar to

what you are experiencing.

My recommendations to you are to be persistent with your

approach, add patience into the mix and become educated

about this disease. You need to find a GI doc who is willing to try

many things and will stick with you to get to the bottom of this. If it

is a pancreas problem be prepared to undergo many, many

investigations with lots of disappointing results. However, for

each negative diagnostic test you get, if your GI sticks with you,

you are getting closer and closer to the bottom of things. It is not

uncommon to have the approach of trying the simple things,

waiting a few months to see what happens, trying the next level

of diagnostics and therapy, waiting a few months again, and on

and on. But the key to this is finding a GI who will stick with you

and not brush you off. You do not want to over-react but neither

do you want to accept the brush-off diagnosis of " stress " or

" over-reaction to normal bowel activity. " If it ends up to be a

pancreas problem, the longer you wait, the harder it is to correct

whatever the problem is and the higher likelihood that the pain,

nausea, etc will become chronic. So if you do find a good GI doc,

it doesn't hurt to have a plan outlined that takes into

consideration the end-point being pancreas disease. That way

you are both on the same page. This doesn't mean that other

things may not be the cause...it only means that you have

assurance that he will not give up on you - which is very, very

common when it comes to GIs and pancreas problems. Most

GIs do not want to deal with this disease and are not specially

trained in diagnosing or treating it so they tend to bury their

heads in the sand by trying to convince themselves and their

patients that it is anything but pancreas disease.

Good luck and I am happy to answer any questions that you may

have or to direct you to literature that may interest you.

laurie

[Guest guest]

I forgot to mention that I have lost a pound a day for the past 5

days

and I am 5'7 " female, was 127-130...now I am 120. My last attack was

last Friday, food was salad with blackened chicken breast, blue

cheese, cabbage, tomatos and lower fat dressing (been watching the

fat). Immediately following, I was in the bathroom...then sick the

rest of the day with the pain radiating to my back. I think the loss

in weight has a lot to do with the excessive urination and I go

number

2 about 3-4 times a day lately. All solid and only once this week

lighter in color, looked yellowish. I don't feel I have IBS, I don't

have diarreah, constipation or bloating.

I have no desire to run (I love to run and exercise), fatigued and

losing about a pound a day. I am hoping tomorrow I see a gain.

Other foods that precipitated attack were:

Chicken wings (6) and salad with bacon, cheese and chicken

Eggs and cheese with half a bagel, coffee/cream.

My husband was just diagnosed as a Type one diabetic so I eat low

carb

for the most part with him. He follows Dr. Bernstein's approach.

I know those foods can be ones that cause food allergies so that is

an

option as well.

I appreciate the feedback thus far and I know I am about to go on a

long and frustrating journey. I just feel crazy...

[Guest guest]

Offhand, to me, the food that you listed seems to be rather higher

fat when taken as a whole.

Alot of us have been advised to stick to a 15gm or so of fat a day.

The chicken, cheese, egg, salad dressing all combines possibly

into a higher fat load. If you are not digesting fats this could be a

problem.

In addition, lots of people have problems digesting protein. For

example I cannot eat meat much at all. Other people have

problems with fiber, thankfully I am usually ok with this.

Another thing to think about....some restaurants / delis/ grocery

stores put a preservative in their salads to keep them from

browning up (I think it is a nitrate / nitrite?) and this causes pretty

severe diarrhea for lots of people. Also if the tomatoes in a

salad are too green (even the reds ones that are more pink than

red) can also affect people (diarrhea too) kinda like when you eat

green potatoes.

The weight loss is disturbing, it could be water loss due to the

diarrhea. You need to try to get as much fluids into you as

possible as well as probably replenish your potassium levels

(try a banana if it stays down or a sports drink). I am not sure if

this is diagnostic though....but it certainly is cause for concern

when added to your other symptoms.

I am sure that other people here can offer you tons of advice and

give you information that I haven't thought about. Sometimes I

tend to focus in to much on one aspect and forget about the

bigger picture!

laurie

[Guest guest]

Yeah, my mother the nurse agreed...the overriding nutrient in those

meals was fat. I haven't had diarrheah though...solid stools except

for a loose stool right before a bad attack. Occurs 5-15 minutes

after I eat, then the onset of my symptoms are severe.

The weight loss has been happening throughout but most noticeably

this week...5lbs since the weekend and I have been eating 3 meals a

day, plenty of water and a snack. No bad pain since last Friday,

the day of my last attack.

Other foods that caused me the next worse distress were:

pizza day at work, immediately got pain under sternum that radiated

to back and extreme fullness/nausea.

Salmon with zuchini cakes which I binded with parm cheese.

Everything that has caused me distress has had fat, protein and

dairy. I am leaning towards a food allergy or

pancreas/gallbladder. Talk about extremes! The endoscopy had

proven no stomach issues, reflux, ulcers...which makes me wonder why

I had 3 weeks of pain anytime food hit my stomach. That is what

started this whole mess. I used to love food, now I hate it.

I just got off the phone with my doctor's nurse...he is squeezing me

on Monday and they are scheduling a CAT scan.

[Guest guest]

There are a few things that you've mentioned that I'd like to comment

on. I'm sure you realize that the meal you spoke of, eggs, cheese and

bacon, would need to be considered as a high fat menu. If you do find

that you are going to need to limit your fat intake, you would benefit

from some quick training in how to count your fat and protein intake.

Eggs are 7-9, cheese approximately 10 and bacon would be 10 also.

That meal alone would take you over the recommended daily fat

allowance for a person with CP. Most of us limit our intake to no

more than 25 grams of fat, and many do well with even less. It's

suggested that a patient eat several small snacks or meals throughout

the day, rather than three large traditional meals, and that the total

amount of fat consumed at each sitting be no more than 6-8 grams.

Your pale stools and sudden weight loss are also a concern, as pale

stools or stools that are oily, ordorous and float, in addition to

weight loss, are both indicators of malabsoption, which is a common

symptom of CP, as well as other gastrointestinal disease. I also

wanted to mention to you that you can have a healthy, normal

gallbladder and still have pancreatic problems. I'm one of the rare

members who still has their gallbladder, it's healthy and shows no

problems and no doctor has ever even suggested it's removal, yet I've

had CP for 4 1/2 years and have even undergone pancreas burn out with

insulin dependent diabetes. If your gallbladder shows no problems,

delayed emptying or blockage, I would see no reason for it's removal

only for diagnostic purposes.

I suggest that over the weekend you write a concise list of all your

symptoms, locations of pain, pain stimulators, where it is, how long

it lasts, what it feels like, and what seems to stimulate it. The

more precise and detailed you can be, the better it will help the

doctor to determine what the cause of your problem may be. A

diagnosis of IBS is not necessarily a positive step. Unfortunately,

because of the lack of adequate knowledge and training of pancreas

function and disease, many doctors are prone to diagnosing IBS when

symptoms similar to your own are revealed. They are reluctant to dive

into the unchartered and mysterious waters dealing with the pancreas,

as the gland is understudied in medical school, and the number of

specialists in the country who feel comfortable diagnosing pancreatic

problems are in the minority.

So don't settle for a convenient diagnosis if there is any question

that your problems lead to something pancreas related. A high number

of our members were initially diagnosed with IBS, when what they

really had was chronic pancreatitis, but months to years had passed

and further damage had occured to their gastrointestinal systems

during this time. Make sure your doctor is committed to finding the

cause of your problems, and is willing to investigate further, as much

as necessary, to confirm a diagnosis he or she can stand behind with a

full degree of certainty, and that this physician is knowledgable

enough to follow up with the appropriate treatment required to bring

you to an optimal level of functioning capacity. If further testing is

necessary to establish a diagnosis, the doctor should recommend and

schedule it at this first appointment.

Good luck with all of this, and please post again with any questions

you may have prior to your appointment on Monday. This is an

excellent opportunity for you to walk into that physician's office

fully prepared, and with a good sense of comfortable knowledge about

what to expect and what to ask, so let us help you get started.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

hhessgriffeth@...

SC and SE Regional Rep

Pancreatitis Association, Intl.

Note: All comments or advice are based on personal experience or

opinions only, and should not be substituted for consultation with

your medical professional.