Re: Help,not eating/diagnosis unclear/quick action needed [long post]

[Guest guest]

Hello, your complaints don't sound that outlandish to me. It all

sounds quite typical. I too have much difficulty with eatting and it

usually causes intense pain, have your DRs. given you any pain

medication to take during your attacks, if not it is time for you to

ask all they can say is NO, but I find it hard to imagine if you

have known gallbladder disease. I have 2 congential defects of the

pancreas that cannot be seen by MRCP, CT Scans or any other non-

invasive technique. It has been confirmed by an open surgery and

many ERCP,s and endoscopic ultrasounds. I have only had a few

occurancies of elevated enzymes levels, one does NOT have to have

high levels to have pancreatic problems. The issue with food you

will find if it is your pancreas, what works today may not work

tomorrow, there are NO absolutes with this disease process. If you

have pain medication and you know food hurts take it before you eat.

As heard before on here it is ALL trial and error. You might try

using soy products such as milk and mix it with an instant breakfast

type product. Mix it with instant low sugar puddings since you tend

to have hypoglycemia. Have you been told to avoid concentrated

sugars for your low sugars? Usually fruits, and fruit juices,

tablesugar can cause a spike in blood sugar and a fast dip causing

hypogylcemia. If you are not statisfied with the surgeon you have

seen see another one, maybe you have a stone caught in your common

bile duct causing your post prandial ( after eatting) if so that is

not something to mess around with. Drs. by nature see many patients

and unfortunately they become some what sensitized by what they see,

just as people who see to much violence on TV, you as a consumer of

health care services are obligated to feel confident in the choices

of professionals you seek. I hope for you that you do not have this

dreaded disease, and after your gallbadder is removed all of this

will resolve. You are most probably in No danger of malnutriton at

this stage, this occurs over time, just becareful of vomiting and

diarrhea which lead to dehydration. You had written about the

nasogastric tube which you have seen in peoples noses, most

genenrally they are used for suction, to remove stomach contents

after surgery, or for bowel obstructions, although they can be used

for feedings I would say the majority are for short-term use as they

can be very hard on the inside of the nose causing tissue death and

severe irritation. Welcome to this group, I hope you won't have to

stay long

[Guest guest]

Hi slvrmoon,

I am new to this group but not new to what you are describing.

So I will try to address your concerns and tell you what I did or

am doing to help.

First of all I agree with the the advice given about pain meds. I

basically only eat about an hour after I take a Darvocet. And then

I limit myself to fairly low fat foods (I eat mainly veggies, fruit and

pasta). If I anticipate a higher fat meal, I will take an oxycodone -

but I am careful not to take that with the meal, as I have noticed

this can prepitate an attack of colic. If, after I eat, the pain

intensifies more than I expected. then I will take another pill. As

was mentioned, this is all trial and error and sometimes eating

the same thing result in different pain levels.

As far as your gall bladder is concerned, the doctors may not be

considering it an emergency because your vital signs are stable;

you show no signs of an acute process going on (infection,

rupture, bleeding, etc). But if they are attempting to schedule this

in two weeks, they most likely see this as urgent and are taking

into consideration your eating problems. In my experience,

before a doctor will consider pancreatic problems in a person

with no diagnostic indications of such, he / she will focus in on

the gallbladder first, to rule out this type of disease. And in fact,

that is quite logical, as the incidence of gall bladder disease is

much higher than pancreatic disease. Most of medicine is

looked at as a process of elimination with the most obvious or

likely disease state investigated first, then they go on down the

list. I am not sure what to advise concerning your eating other

than very low fat, pain meds, smaller meals more frequently and

solid foods as tolerated (I don't eat meat either). I used a lot of

" Boost " when I had my worst eating problems (before the pain

meds). I also ate mainly watermelon my first month out of the

hospital - it was the only thing I could tolerate. In the hospital, if

you are unable to eat for longer than 4 days or so, they will give

you TPN which is nutrition given through an IV - so that it

bypasses your stomach and intestines. Maybe this is what your

doctor meant when he mentioned " it will be addressed by your

surgeon " . At the very least, your dehydration will be taken care of

with a " regular " IV. You may be amazed at what the body can

tolerate as far as limited food intake is concerned.

I cannot tell you what you should do but I do not think that opting

to have your gallbladder removed is unreasonable. But I would

really try to eat what you can when you can. There are diets that

are recommended by some medical web sites that address this

issue. I do not have them at my finger tips but do a search under

pancreatitis or liver disease and look on the sites for a diet or

nutrition button to click on. Some sites actually have 5 day or 7

day meal planners that limit your diet to liquids then gradually

add more solid foods as you go along.

But you definitely need to ask for pain meds - pronto! And

sometimes you have to make your decisions in less than

optimal conditions and do the best you can. If it turns into an

emergency, don't let that panic you - do what you have to do at

the time that you need it. My best surgeon was one that walked

through the ER door!

Good luck.

Laurie

[Guest guest]

Hi, Slvr!

Did you get test results yet? Did they want to do colonoscopies to

look for possible ulcerative colitis (maybe causing some of your

pain)?

Also, my husband had only an initial enzyme elevation right after an

ERCP (something in the 28,000 range) ... anyway, his pancreas

digested itself. Other than that one night, his enzymes levels were

not elevated. So, as everyone has noted, not an efficient way to

diagnose pancreas troubles.

ANY food will create major distress - even that bite of potato. My

husband was on an IV being fed 3,000 calories a day (he definitely

didn't lose any weight - that's heavy-duty stuff); then a central

line above the heart for almost a month; and then on the nasal tube

feeding.

To answer your question, the tube goes up through the sinues, down

through the stomach and into the small intestine. It bypasses the

pancreas so the pancreas has TOTAL rest. The nasal feeding is MUCH

BETTER for a person ... it makes your body's bowels work on their

own - as opposed to IV feeding which after a long while begins to

shut bodily functions down.

Nasal feedings are the preferred way to go if NPO (nothing by mouth)

for a couple of months. There are various formulas out there with

different calorie levels to accomodate for different needs. And they

are filled with boo-coo nutrition.

Hey ... wishing you all the best, Slvr!!! Hope you find peace and

well being.

Warmly,

Beth