Re: new & I have some questions

[Guest guest]

Have they dx bile reflux? And prescribed anything?

The endoscopy itself can cause bile to backflow into the stomach, but

your sister's ongoing symptoms certainly support bile reflux. Which

also ties in with the undigested food -- a motility issue.

People can get this without a transplant, but I, too, tend to think

anything gastro has to be liver-related somehow.

I agree with you that it's important to get a feeling for how long TPN

will continue and when alternatives will be tried.

Small consolation, but it really isn't that hard to manage TPN at home.

It sounds a lot scarier than it actually is.

Pam

(mom to Quantell, 16, dx 1996, tx 2001, dx recurrent PSC with AIH

overlap 2006)

[Guest guest]

Gail,

I'm sorry your sister has had such problems since her 2nd transplant.

It certainly seem that her doctors have not been able to diagnose the

problem and come up with a workable plan that will help her recover.

They are probably frustrated that nothing has worked also, but may not

have had the time to pause and reexamine everything to go through all

the possible senerios that might be affecting your sister. I would ask

them (or a new doctor) what else could be causing her symptoms. The

presence of nausea with bile and undigested food in her stomach would

seem to indicate a failure of the gut to move food through in a normal

manner. There are probably many varied things that could cause this.

The trick is recognizing and resolving what is causing her problems.

Hope she can get a better plan worked out soon.

Tim R

> My sister was diagnosed with PSC almost 12 years ago - she is now

> 28. She has had 2 liver transplants - the most recent of which was

> in June 2006. The 2nd transplant was difficult & recovery was slow.

> She had a few OK months & then started showing increased problems

> with nausea & headaches. ... The endoscopy showed

> UNdigested food and BILE in her stomach. She has not been able to

> keep food down AT ALL and is constantly headachy & nauseous.

[Guest guest]

-Gail, I have no idea if this is at all similar to what is going on,

but my partner was diagnosed with a condition that caused slow

motility (stomach not digesting food), but not as serious as your

sister's condition is. They gave her propulsid... they say it can

happen to diabetics.....

Anyway, it wasn't a permanent condition... and she improved without

any real definitive diagnosis. Anyway, I hope they figure it

out...keep pushing for answers.....

Take Care and our prayers will be with you both,

Kate in Seattle.