Digestive problems, (J and G) Tubes, help - input wanted.

[Guest guest]

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,

[Guest guest]

,

That is unusal for MSA, but not unheard of for the list. Anne has PAF 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.

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

dehydration problem. Healing time was only a day or so. 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. 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.

Hope this helps, Bill Werre

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.

>

---------------------------------

>

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

> To: shydrager

> 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,

>

>

>

>

>

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>

>