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HI I M OFF TO SEE THE PAIN DOC AND THE DIETICIAN, I HAVE NEVER BEEN

TO SEE EITHER ONE OF THESE, DOES ANYONE HAVE ANY SUGGESTIONS OR

QUESTIONS I SHOULD ASK?? I D LIKE ANY INPUT THAT ANYONE HAS. ALSO,

THOSE OF YOU WHO HAVE TROUBLE MAINTAINING THEIR WEIGHT, I D LIKE ANY

SUGGESTIIONS YOU HAVE THAT MIGHT HELP ME. I M 5FT 7IN AND MY WEIGHT

IS JUST BELOW 100 LBS, THAT IS NOT ACCEPTABLE TO ME OR TO MY DOC.

NANCY FROM K FALLS

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from K Falls,

have you tried drinking those diet supplement drinks? Especially the

high protein ones to make up for any food you are unable to keep down?

Maybe drinking 3 or more a day. Another option if you are having

trouble keeping food down is a J tube or a G tube, where you poor a

supplement in and it bypasses the stomach. I also believe you have to

crush your meds (if they aren't in liquid form already), put them down

the tube and wash them down with something through the tube again.

Forgive me if you've already tried these things. I'm just trying to

think of ways to help you gain weight. I hope some of us have some good

ideas for you.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

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,

As far as your pain doctor goes, I would be sure to be explicit in

telling him or her about the type and degree of pain that you are

having and insist, demand, plead, beg or do whatever you do

best to make sure they prescribe appropriate medication for you.

Many pain management doctors are also anestheologists, and

they may suggest a celiac pain block as an alternative procedure

for you. You might want to investigate this procedure more

thoroughly before you make any decisions. There are different

nerve blocks that can be done, and each has it's own levels of

success. Some people have relief from the procedure, and

some don't, that's why I suggest you look into that suggestion

further.

Dietician's advice can vary. I suffer from malabsorption and have

had an ongoing battle with weight loss for well over two years. It

seems every time I get my weight back up where it belongs, I get

sick and start to lose it again. It's happened three times in two

years and the last episode was last winter when I dropped 30

pounds in less than four months. I'm 5'8 " and was actually down

to 98 pounds when I was admitted into Intensive Care in March.

I've finally managed to gain back 16 pounds, but it's taken me

over 6 months to do so. So I know exactly what you're saying

when you say your weight isn't acceptable to you, or your doctor!!!

Are you taking enzyme supplements? I found that when I was

first diagnosed with CP and started taking the appropriate

dosage and amount of enzymes that I was able to gain and

maintain my weight for over a year before I got sick again.

Before I get into my explanation of what the dietician

recommended for me, let me ask this. Has your doctor tested

you for diabetes, and have they tested you for malabsorption?

My undiagnosed and untreated onset of type 1diabetes, caused

my most recent dramatic weight loss, so you may want to check

on these things first.

The dietician put me on supplements of Ensure, and also a

product called Resource, which is a fuit based beverage with

additional protein. She also had me mixing in whey protein

powder into all my food. Additionally, I was taking doses of

medium chain triglycerides in the form of an oil that you drink

before each meal. My doctor had initially tried me on Peptamin,

which is a medium chain triglyceride supplement in liquid form,

similar to Ensure. I wasn't able to take the Peptamin, it caused

more pain and I wasn't able to tolerate it, plus the taste alone

was nausiating! They do use Peptamin in feeding tubes in the

hospital with patients that suffer from severe weight loss with

great success, but I found the product untolerable for use at

home.

I hope these suggestions help some. Please write again if you

have any questions.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments and advice are personal opinion only, and

should not be substituted for professional medical consultation.

" What lies behind us and what lies before us are tiny matters

compared to what lies within us. " - Ralph Waldo Emerson

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,

I wish I had more suggestions to help you eat and gain some of the

weight you need. As for your pain doctor, sounds like you need a new

one, one that will treat your pain. What was his reason for taking you

off narcotics? I'd report him to JCAHO if I was you since he is

unwilling to treat your pain, which is a violation of JCAHO pain

management standards. They are required to treat any pain over a pain

level of 3 on a scale of 10.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

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,

no problem, that's why we are here in this group, to be here for when

someone had a problem, whether it's to decide to change physicians, or

because someone just can't take the pain anymore and needs to vent.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to that of a licensed

physician or health care professional.

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