General Frustration & Depression Setting In

[Guest guest]

Hello, Everybody,

I seem to be at a loss for words, help, hope and

general faith in the doctors I've been seeing here in Toronto, Ontario, Canada.

I finally received some feedback from my GP yesterday with regards to numerous

blood tests that I have been going through. It seems that my bilirubin has

finally come down to a normal level at 19mmol/L vs. 43mmol/L which were serious

signs of bile duct blockage or sod problems. However, I still have the burning

sensation all the time now were my gallbladder used to be regardless whether or

not I eat. It seems to come at the oddest times of the day. As for food

triggering it fatty foods send it in overdrive or when ever I take any codeine

or opids for pain but, regardless whether fatty or not the burning pain is

constant with what ever I eat. I have been on a low fat diet for quite some time

now. I have been to a naturopathic doctor who has put me on some new

antioxidants vegetable based which are to make me feel some what better however

I feel no difference what so ever.

The blood tests also revealed that my hdl levels are

below normal at 0.7mmol/L which should be above 1.2mmol/L or higher, my ldl

levels are at 2.5mmol/L which could be lower but my GP advises me that they are

not of concern yet. As for my triglycerides they were high at 4.55mmol/L and

should be below 1.7mmol/L for optimium health however my GP advises me this is

not a concern which I find confusing. I eat quite a healthy low fat diet which

consists of lots of green & bright coloured veggies, cold water fish for good

fatty acids, unrefined grains, high fibre fruit and have almost completely cut

out refined sugars. I get a reasonable amount of exercise at least an hour walk

a day and ride my bicycles whenever I can depending on my energy levels. So, I

am concerned as to how my levels are so poor.

I have three pseudocysts involved with my pancreas.

One anterior to the head 1.4 x 1.2 x 0.9 in size, one 1.6 x 1.3 x 1.2 adjacent

to the pancreatic tail and one in the body of the pancreas 1.3 x 1.3 x 0.9 cm. I

was advised that since they show no evidence of biliary dilatation, no evidence

of stone or obstructing lesion in the common bile duct, no evidence of arterial

pseudoaneurysm or venous obstruction via ct scan, therefore I should have no

cause for pancreatic pain. I am concerned as I have read numerous articles on

pseudocysts that state that regardless of there size or location still can cause

symptoms in patients i.e.; nausea, burning, gas etc. all of which I have. My

doctors tell me that I have a sensitive digestive system and that I must stop

taking pain medication and let my body become accustom to pain and eventually it

will not bother me. Sounds cRaZy to me what do you think?

In addition to all of this I have to take digestive

enzymes or I can't digest my food properly but the doctors are still trying to

convince me otherwise that I have ibs which I show no symptoms of whatsoever. I

am going cRaZy! Does anyone have any suggestions for me to ease my mind or give

me some ammo for when I see the new GI specialist this November? Anything could

help at this point.

Thank you, .

Toronto, Ontario,

Canada.

[Guest guest]

The simple fact that you are going to see a different GI is the key.

Try to hang in there. If it gets bad you always have the option to go

to the ER. That may give you more info for the new GI also. The idea

of going off pain meds and letting your body get used to the

pain...Arrgh. Just seem wrong.

Walt

[Guest guest]

Hi ,

The idea that 1). ypur pseudocysts cannot be the cause of your

pain and2) that you need to get off pain meds so your body can

become accustom to the pain is absurd! (to put it bluntly).

Both of these ideas is counter to any kind of good medical

practice. No doubt you cannot say for sure that you pseudocysts

are causing your pain but there is a very high probability that they

are doing so. The idea of not treating symptoms (pain, nausea,

gas, etc) because there are no signs (the CT scan, the lack of

obstruction, calcification, dilatation, etc) is dark ages medicine.

The presence of pseudocysts alone are usually an objective

" sign " that backs up the subjective symptoms. It is crazy for him

to take this stand.

As far as your pain....again, most informed doctors are aware

that it is imperative to treat acute and chronic pain, no matter the

cause (and sometimes a doctor cannot ever find a cause),

because the pain itself can become a disease with fairly

profound ramifications. If you are interested in ready more about

this here are links to two very good articles that explain why a

physician needs to aggressively treat pain:

www://http.hosppract.com/issues/2000/07/brook.htm

and

www://http.hosppract.com/issues/2000/09/brook.htm

Maybe these articles can give you ammunition for your

appointment in November.

Denying you pain meds so your body can get used to the

pain......now that IS just plain crazy in my book.

laurie

[Guest guest]

Thanks for the support! Helps me feel that I am not so cRaZy! Have a wonderful

night. Peace and God Bless!

[Guest guest]

,

Your doctor's protocal is not one that's widely accepted here in the

US, but I have run across one pain management doctor who had the same

philosophy about denying pain medication so that the patient could

" get used, to and overcome pain. " It was his belief that each time

analgesics were introduced into the system, the body would accept

them and " learn " to want more, thus establishing the need to

continually increase a patient's dosage of the narcotic to satisfy

the increased need! Unfortunately, he spouted off his theory with

such believable sincerity and professional discourse that he nearly

had my husband convinced. On the drive home that day after talking

with this doctor, it took me two hours to relate the facts and proof

necessary to refute this theory to my husband, as he was ready to ask

me to throw away all my meds - thinking that this would help me!

As for the PM doctor who believed in toughing it out without meds, I

understand his business closed up some time later that

year....undoubtedly he wasn't able to convince many chronic pain

sufferers to adopt his manner of treatment.

Laurie's articles explained the necessity for treating chronic pain

with appropriate analgesic medication far better than I ever could.

I will explain that I've been on many different types of medication -

short acting meds and then those that stay in the system for 72

hours, at different dosages, too, yet have not keep needing to have

more. In fact, I just REDUCED the dosage of the Duragesic fentanyl

patch that I use, and cut in half the amount of my monthly script for

Oxycodone.

As for your doctor saying that your pseuodocysts couldn't account for

your pain - that's hogwash! Although the size of your pseudocysts

isn't that remarkable, and at such a small size they will very likely

resolve completely in time, just their presence DOES cause pain.

I've had two pseudocysts for over 4-1/2 years now, the larger is 6.5

x 6.8cm and the smaller one now approximately 2.3 x 1.8cm, and these

pseudocysts are the ONLY cause of my pain. My pancreas burned out

over 2-1/2 years ago, and the chronic pain as a result of CP ceased

entirely for a few blessed months, until the pseudocysts became

inflamed again and then the pain resumed. It is a different type of

pain than before, now it is much more centralized and definitely

located just in the areas where the pseudocysts lie in the remnants

of my pancreas.

I'm telling you this so you can realize that you aren't crazy and

that the pain you experience isn't a phantom, or all in your head.

While I'm not a doctor, I'd like to say that your diagnosis of IBS

has been one that many doctors fall back on when they have a patient

with digestive problems that they haven't been able to clearly

establish the cause of. Probably close to half of the members of

this board, who DO have chronic pancreatitis, were originally told

that the source of their problems was IBS!!! Those who were

fortunate enough to find better doctors were later given diagnosis'

of CP, not IBS. The pancreas is still such a mystery to so many

doctors, gastroenterologists, even, that many just don't have the

experience to detect what the real problem is. They often rely upon

tests or lab work that isn't always clear, and make their diagnosis

based on information that isn't 100% definitive.

I'm not sure how your health system works, but if you can get to

another specialist, that's what I would recommend. We had another

member from your area that was also having terrible difficulties

trying to get her problems resolved with her doctor up there, as it

turned out, after months and months of pain and tests and

disappointments, it turned out that removal of her gallbladder WAS

the necessary treatment, and since then her problems resolved. I

wish it had been that easy in your case, but obviously that wasn't

the resolution for you. Now you need to keep looking, until you can

find the doctor who will continue to keep looking at you, so he can

find the true cause of all your pain.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

www.pancassociation.org/anthology#Heidi.html

Bluffton, SC

SC State & SE Regional Representative

Pancreatitis Association, International

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

opinion only, and should not be substituted for professional medical

consultation.