The Intractable Pain Patient's Handbook for Survival and Chrohn's disease

[Guest guest]

Bennie, the parts you copied from The Intractable Pain Patient's

Handbook for Survival are absolutely brilliant. I am throwing my cyber

arms around you and squeezing so hard, thank you! At least cyber hugs

don't hurt either of us, lol, and you won't catch the cold which my

generous son gave me for Christmas. (OK, it's bronchitis now but I'm

not in the mood to go to the doctor's, you know?)

I copied and pasted below. I also made my husband come sit down and

read it because we have discussions (not arguments, just discussions

which I usually lose) about my needing protein.

I've got the jejunoileitis form of Crohn's, in a flare, doctors cannot/will not

give anything other than tramadol 50/qid and the pain management doctor my

Internal medicine specialist doctor sent me to told me to " tough it out. "

So I tough it out and by the evening I am crying because of the pain

and rocking back and forth and all I can do is to keep very quiet so I

don't disturb the Mighty Television yak yak while I say " Oh God, Oh

God, Oh God please, please please. " As prayers go, it isn't much but I

figure He knows what I am begging Him about.

The Crohn's also is keeping me from eating because if I eat anything

other than a quarter cup of grits or quarter cup of oatmeal I cannot

breathe and the pain is more like a myocardial infarction (had that,

ha ha) than gut pain. But I CAN get down a good protein shake (60

grams protein, Champion is one). Problem is they aren't cheap and I

have to keep the household food budget to $10 a day and the protein

supplement has to come out of that.

So he and I go back and forth about the protein and since the

insurance company won't cover it (or any of the vitamins and

supplements the doctor has ordered since they are OTC), I'm pretty

much hosed. He did let me have one small jug back when I lost 50

pounds in 3 months and my doctor was going to put me in hospital on

TPN.

So I got a little protein and yes having it does make my little

tramadol work much more efficiently. I am going to email a copy of The

Intractable Pain Patient's Handbook for Survival as he is also an IP

patient unable to get any assistance from his doctor. Actually, his

doctor advised him to move out of state to get help. Since he has the

onerous job of keeping track of us (and Pappa's paycheck), that isn't

an option.

Do you know of a place to actually purchase the handbook? I'd like to

take a copy to my Internal Medicine specialist. I do get so horribly

tired of pain in the afternoon and evening when the pain goes from my

normal background pain of 5 up to wanting to scream and throw myself

to the floor and gnaw on the carpet 10. Of course the times I went to

the hospital for some help, they gave dilaudid IV which metabolizes

out of the body within I think it is like 2 hours and secondly, I have

a severe reaction to it in the form of severe crushing chest pain,

radiating down the left arm, jaw, the whole thing which makes the

people in ER run for the cart.

I do tell them that I cannot have it IV but what would an old woman

know? (Other than post secondary mathematics, vector calculus and

nonsense like that which I taught at a local college.)

I am looking for another gastroenterologist since this one does not

specialize in Crohn's (which his partner diagnosed and he agrees is

what is going on with the gut) and his one treatment fits all approach

is not working for me.

Sorry to make this so long, and I hope, Bennie, that you do not mind

me putting part of an e-mail from you in this post; I just thought it

was a valuable help to me that it should be posted again.

Lord, I hope this doesn't get me kicked off the group. Profound

apologies to all, if I screwed up. I'm an old woman and do that often.

Thank you again, Love and hugs, Jeanne B in GA

Jejunoileitis form of Crohn's, in flare

Epigastric ulcer which likes hemorrhaging now and then

fibromyalgia

osteoarthritis

rheumatoid arthritis

cataracts with legal blindness (don't have a reader; I just copy

e-mail to Word document and make the print big)

Very bad dental issues from Crohn's which forced oral surgeon to

remove most of the upper jaw bone now I can't get dentures even, but

that's life.

And a partridge in a pear tree

>from Bennie's post:

All,

The Intractable Pain Patient's Handbook for Survival by Dr. Forest

Tenants discusses pain enhancers you can take to make your pain

medication more effective and is a good read.

See below for link:

The Intractable Pain Patient's Handbook for Survival

pain-topics.org/pdf/IntractablePainSurvival.pdfSimilar

File Format: PDF/Adobe Acrobat - Quick View

This Handbook was written to provide intractable pain patients and

their loved ones.

[Guest guest]

> Jeanne B wrote:

> I've got the jejunoileitis form of Crohn's, in a flare, doctors cannot/will

not give anything other than tramadol 50/qid and the pain management doctor my

Internal medicine specialist doctor sent me to told me to " tough it out.not in

the mood to go to the doctor's, you know?)

> Jeanne,

I am writing the last paragraph first as it will make more sense, I take

Restriol for ileaus and it is a tb injection, once a week and also relaxes lower

bowel. Did you have a H Pylori test for your bleeding ulcers, my Mother had

gastric ulcers and duodenal, which were painful and after the twenty plus years

she tested positive and the antibiotic therapy program liked to kill her as she

was 85

and did not deserve the pain all those years.

Vitamin D has shown to help arthritis and joint and bond pain do I will be

demanded it and I have a Vesterol(sp) cream with Motrin in it that helps me and

I bet the anti inflammatory diet will help also Jeane. I have set some six goals

with the things I shared with you, so we will see how we do. I wish you good

health and start looking for a real Chron's specialist that does research and

clinical trails so you might benefit from them. Let us know what you find out. I

am tired and sorry sentences are sloppy.

I went to a Doctor who started a Foundation with Dr. Tenent and I have great

respect for them as pain researchers. My Doctor made me keep a pain dairy,

functional assessment, and mood evaluation. My Doctor always had new articles

for his patients to read, The Intractable Pain Survival Guide, DEA War on Drugs

and state laws and Pain Doctors incarcerated and many agencies providd their

legal support. We had a good forum but he died in Nov 2011, a great loss to the

world and the National Pain Foundation was closed down.

The new name for the guide is

The Intractable Pain Patient's Handbook for Survival and can be downloaded for

free at paintopics.org which is Great also. I just read an article about Chron's

and and Colitis and most patients had deficiencies in Cobalt so you could as for

a Vitamin and Mineral Panel with Cobalt. I just asked my Doctor by mistake when

I was getting my thyroid checked if she would check my B12 and Vitamin D,

Vitamin D and Calcium, and Phosphorus go together so I am going to ask for

complete panel, a receptionist told me they could use my blood seven days later

and I though how weird and the lab throws it away the nest day. So will see ho

deficient I am. http://pain-topics.org/clinical_concepts/vitamind.php Vitamin

D articles and documentations

Here us where you download his guide and you might want to research other

articles, he co authors Pain Management Journal and you can read articles from

it.

pain-topics.org/pdf/IntractablePainSurvival.

File Format: PDF/Adobe Acrobat - Quick View

Dr. Tennant has published over 200 scientific articles and pioneered research on

the treatment and complications of intractable pain. The Guide is in the Patient

Resources section and there are over two hundred websites in related websites

section that refers to many disorders. You can also sign up for their e

newsletter and I sign up for the American Pain Foundation and they keep up with

state and federal laws and new research. I hope you can use this information,

they have become my best friends and I reread them often. There is also a guide

for your loved ones and they put the target pain dairy from American Pain

Foundation there. I set up many nights with my ex husband (who cheated on me)

and he had fevers of 103 and cramping over and throwing up fecal material and

refusing to go to the hospital, I washed him down with alcohol, gave him Talwin

(a bad drug that causes agitation and halucination) and he would throw up blood

and he took sixteen predisone tablets and Azusulfidine (sp) and when we divorced

all he said was " You were a good nurse " and went off with a seventeen year old

on a Harley I bought. But you take care and don't let anyone get you down.

Bennie