BILL & ANNE Re: Digestive problems, (J and G) Tubes, help - input wanted.

[Guest guest]

HI BILL. THANKS FOR RESPONDING. I'M GOING TO IMBED MY COMMENTS IN

BOLD…

That is unusal for MSA, but not unheard of for the list. Anne (?

GUESS I HAVEN'T MET THIS PERSON YET?) has PAF OK. REMEMBER. I AM A

NEWBIE. PLEASE DEFINE PAF. I CAN'T FIND IT ON THE INTERNET. ALL I

FOUND WAS NEUROLOGISTS WHO SAY THEY SPECIALIZE IN IT – AMONG OTHER

AUTOIMMUNE AND AUTONEUROPATHY PROBLEMS. and suffered this type of

problem and since PAF IS related to MSA (both have autonomic failure)

I can see it being a problem. You may want to ask your internist

about a stomach pacemaker (Temple Univ) as it helped ANNE greatly.

INTERESTING. HOW CAN I GET IN TOUCH WITH ANNE? I'D LIKE TO KNOW

MORE ABOUT THIS BEFORE SPEAKING WITH MY INTERNIST. RIGHT NOW, I

DON'T ACTUALLY HAVE ANOTHER APPOINTMENT WITH MY INTERNIST. FIRST,

SHE WANTS MY MRI PICS LOOKED AT BY A DR ALLEN SHEPPARD OF THE CHICAGO

INSTITUTE OF NEUROSURGERY AND NEURORESEARCH. THINKING I MIGHT HAVE

CHIARI.

Charlotte got a PEG (G-tube) in 1998 and it helped greatly with

stopping the dehydration problem. WHY WAS SHE DEHYDRATING? SO FAR,

I'VE ONLY HAD THAT PROBLEM ONCE – IN DECEMBER.

MY INTERNIST HAD REQUESTED A PEG AFTER DOCS IN TULSA COULD NOT FIGURE

OUT WHAT WAS GOING ON, AND MY WEIGHT WOULD NOT STABILIZE. TURNED OUT

TO BE A GOOD THING THAT IT NEVER HAPPENED, AS THE GI DOC AT MAYO SAID

THAT A PEG TUBE WOULD NOT HAVE HELPED. HE SAID I NEED A J-TUBE TO

GET FOOD IN THERE FARTHER. HE SAID THAT THE PEG WOULD BE NECESSARY

TOO – TO VENT ACID. WHILE THAT WAS INTERESTING, THAT LED TO MY

CURRENT CONCERN… IF A PEG WOULD NOT WORK, BECAUSE FOOD PLACED IN

THERE WOULD COME BACK UP – WHAT ABOUT THE J-TUBE? HOW CAN I BE SURE

FOOD PLACED DOWN THERE – A BIT FARTHER – SUPPOSEDLY PAST THE POINT OF

NO RETURN – WORK? SEE MY DILEMNA? I MEAN, IT IS QUITE POSSIBLE

(PROBABLE?) THAT THERE ARE TIMES WHEN I EAT THAT FOOD DOES ACTUALLY

COME UP FROM THE DEEP DARK RECESSES OF MY DIGESTIVE SYSTEM. OF

COURSE, I GUESS IT COULDN'T HURT. OTHER THAN THE HEALING ISSUE.

Healing time was only a day or so. MUST BE THE DIFFERENCE BETWEEN A

PEG AND A J-TUBE. MY SURGEON SAID I COULD HAVE A PEG, BASICALLY DONE

OUTPATIENT. HOWEVER, THE GI DOC AT MAYO WANTED ME TO STAY AT LEAST 2

WEEKS IF I CHOSE TO HAVE THE J-TUBE INSTALLED. HE WANTED TO MAKE

SURE IT WOULD WORK (WHICH FURTHER EMPHASIZES MY CONCERN).

It is a slight nuisance problem in that it tends to always be in the

way, but other than cleaning around it once a day is not a major

problem. I do not know about a J-tube as Charlotte only had the PEG.

>

You can get all liquids through the tube and she did not drink more

than a sip to moisten her solid food once she got the PEG. AS I

UNDERSTAND IT… WHAT THEY ARE LOOKING FOR ON ME – IS TO GET THE FOOD

DOWN, PAST A POINT WHERE IT CAN BE BROUGHT BACK UP. THAT WAY, I WILL

GET THE NUTRIENTS AND CALORIES NEEDED. OF COURSE, BASED UPON MY

BLOOD TESTS, MY VITAMIN LEVELS, PROTEIN AND EVEN IRON – ARE ALL

WITHIN LIMITS – OR WERE LAST TIME I WAS TESTED. (WHICH PROVES TO ME –

THAT GOD IS DEFINITELY GRANTING ME SOME STRENGTH – BECAUSE THOSE

LEVELS BLEW ALL THE DOCS AWAY, WHEN CONSIDERING ALL MY OTHER

SYMPTOMS – INCLUDING BLOOD – AND " ANEMIA OF CHRONIC DISEASE " – " BUT

WE DON'T KNOW WHAT THE CHRONIC DISEASE IS " . ISN'T THAT A LAUGH?!)

That made dehydration a thing of the past. We crushed pills and put

most meds through the tube also - 6 times a day with 10-12 ounces of

liquid with each dose made her liquid allotment. THAT WOULD ALL BE

PLUSES… AS THE GI DOC AT MAYO EXPLAINED – " WE HAVE NO WAY TO MEASURE

THE NUTRITIVE QUALITY OF VOMIT. " IN OTHER WORDS, HE HAD NO WAY OF

TELLING HOW MUCH OF THE GOOD STUFF I WAS GETTING AND RETAINING. AND,

IF IT WOULD HELP INCREASE MY PRODUCTIVITY – BY SPENDING LESS TIME

OVER A TOILET OR TRASH CAN – THEN IT IS MIGHTY TEMPTING. RIGHT NOW,

I'M LEAVING IT TO MY BODY. IF MY BODY WILL MAINTAIN, THEN I DON'T

HAVE TO MAKE THAT DECISION. MY INTERNIST IS ALLOWING ME TO MAINTAIN

AT 135 – WHICH IS BELOW TOLERABLE LIMITS, BUT SHE'S SEEN THAT I CAN

FUNCTION AT THIS WEIGHT. (WHEREAS 4 MONTHS AGO, SHE THOUGHT I WAS

GOING TO DIE WHEN I FIRST HIT THIS WEIGHT – AND INSISTED ON

HOSPITALIZATION.) HOWEVER, TODAY, MY WEIGHT DROPPED BELOW. IT

NORMALLY VARIES – BUT HAS BEEN ON A DECLINE FOR THE PAST WEEK. HAS

NOT BEEN BELOW 135 FOR WEEKS. WE'LL SEE. GUESS AS LONG AS IT STAYS

ABOVE 130.

>

> Hope this helps, Bill Were ALWAYS HELPS TO HEAR FROM YOU BILL. AS

I SAID, I APPRECIATE ANY INPUT. ESPECIALLY THE STUFF WHICH MIGHT BE

EASILY FORGOTTEN – LIKE YOUR P.S. BELOW.

>

> P.S. Warn the doctor that any time they put you to sleep for an

operation they should keep you hydrated with an IV, it prevents

problems with effects of the operation. AGAIN, I ASK WHAT ALL THIS

ABOUT HYDRATION IS? I HAVE ONLY BEEN DEHYDRATED ONCE – IN DECEMBER.

OTHERWISE, MAIN PROBLEM RELATED TO SURGERY OR PROCEDURE HAS BEEN MY

LOW BP AND OH. ONCE THEY KNOW IT HAS BEEN LOW – THEY IGNORE THE

LITTLE WARNING BUZZERS AND SUCH.

> >

>

> ---------------------------------

> > From: " pulalupu "

> > Date: 2002/07/23 Tue AM 12:38:21 CDT

> > To: shydrager@y...

> > Subject: Digestive problems, (J and G) Tubes, help - input

wanted.

> >

> > Here's the one that is the most serious to me. Most pressing.

> >

> > I had my wife read it when she got in this evening.

> >

> > She had wanted to add something - about what she had said

regarding

> > teh tubes, but later decided to leave it be... So, must be okay

to

> > post it now...

> >

> > Thanks in advance for reading this - and to all who respond.

> >

> > ----------------------------

> >

> > Hi All.

> >

> > More serious question now?

> >

> > I realize that this all affects each of us differently, so just

> > because something works well (or at all) for some people, may not

for

> > others.

> >

> > But, I am concerned.

> >

> > My internist has said that if my weight drops again (have been

> > stable, but going down again), she is going to request I have

tubes

> > inserted. This would involve a J tube to send directly into my

> > intestine, and a G tube to vent stomach acid.

> >

> > My digestion does not " fit the mold " anyway. I vomit after food

has

> > been down ? often for 3 hours, sometimes for a day or so. This

tells

> > me it's not my stomach, but a digestion problem further down.

> > They've done studies on my digestion ? and found my stomach

emptying

> > fine. At the time, my intestine was a bit slow.

> >

> > I (and my internist) figure that the stomach works sometimes, and

> > doesn't others (though I was vomiting during the " atomic egg "

test as

> > well ? which messes with this theory). Anyway, my concern is

that

> > the intestines is not working well either (as it seems to reverse

> > process ? literally ? appears peristalsis begins to function

> > backwards) and what kind of a guarantee do I have that the food

will

> > stay in if put in with a tube? I know... as with all of

> > this... " none " .

> >

> > But, I have to wonder if I've got a problem with food coming up

from

> > who knows where ? how can they believe that the food will stay if

put

> > down below the stomach? I seem to have already violated so

> > many " rules " of digestion.

> >

> > My basic concern is that the tubes will be inserted and not

work.

> > The surgery is invasive, and will require healing time ? and I

didn't

> > do very well with the gall bladder surgery in December (took a

lot

> > longer to get better than they said it would).

> >

> > Anyway, my wife insists that I need to listen to my internist,

and

> > have the surgery if she recommends. I've been able to win the

battle

> > in preserving weight for the past few months ? by basically

eating

> > more ? but lately, it's been a struggle to do this. Just seem to

be

> > losing ground, and want some input.

> >

> > Thanks,

> >

> >