Prev: Crohns/collitis, IBS probably caused by unknown bacterial infection.
Next: Mirizzi’s syndrome
From: WaldenSeeker on 7 May 2008 12:06
Lucky me, it looks like I'm going back under the knife. This time for
a triple bowel resection, three areas of my small bowel have to be
removed. After the removal I will no longer have enough bowel to
absorb nutrition and will most likely have to live on TPN. Looks like
I'll be joining the roles of Hydroponic Humans.

Though this will be no fun, it also looks to be very expensive. A
brief view of internet articles give me an estimated cost of between
$3,000 and $6,000 per week for TPN. So here comes the big
question... Have any of you been on TPN and had it paid for by
Medicare? I would also like to hear from anyone who has lived long-
term on TPN. Is quality of life worth the pain of such surgeries when
the best case scenario is being hooked up to an IV pump 10-12 hours a
day for the rest of my life?

Thanks,
Milo
From: Vanny on 7 May 2008 15:10
I have only had TPN three times for 6-7 days each time. However, I have
short bowel syndrome (aka intestinal failure) with Crohn's, GERD and an
ileostomy, which is being managed with Opium Tincture, Entocort, 6-MP,
Omeprazole, daily sublingual vitamin B12 (had an anaphylactic shock on the
third injection), monthly fat-soluble vitamin injections, twice-monthly
folic acid injections, calcium, salt tablets, zinc, etc. I don't know of
anyone here who is on TPN for the rest of their lives, although there have
been a couple of people who have been on TPN for a matter of months.

The Clinician's Guide to Short Bowel Syndrome is the definitive publication
on short bowel syndrome
http://www.google.de/search?hl=de&q=short+bowel+syndrome+5000+calories&meta=
Jeejeebhoy's publications are also very good.
http://www.google.de/search?hl=de&q=jeejeebhoy+short+bowel+syndrome&meta=
Michael A J Sawyer has some very good publications too
http://www.google.de/search?hl=de&q=Michael+AJ+Sawyer+short+bowel+syndrome&meta=
Try this too
http://66.102.9.104/search?q=cache:iu8RNwKiaBYJ:www.ccjm.org/PDFFILES/Parekh9_05.pdf+managing+without+TPN+short+bowel+syndrome&hl=de&ct=clnk&cd=1&gl=de

Most doctors are pretty clueless when it comes to managing SBS, despite the
fact that there is a lot of good literature around. It might be because it
only affects 2-5 patients in a million.

Here is the US guideline on SBS
http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=3795&nbr=3021

I read a short article a couple of months ago, which was written by an SBS
patient who only had a few feet of intestine left and he managed to come off
TPN by increasing his calorie intake to over 5000 per day, but it did not
mention what medication he was on and I can't find the article anymore. I
think that it was on a forum. If you still have a colon then you will need
to go on a low fat diet after the operation, apparently.

With respect to whether or not it is a good thing - it is normally only
offered to those who have serious problems and your fulminant disease and
your doctors' prognosis indicates that you won't last much longer without an
operation. I have heard of people on TPN who work just as they did before. I
don't know what percentage this is and obviously a job that involves lots of
long-distance travelling would not be recommended.

You might like to try this forum
http://www.healingwell.com/community/default.aspx?f=33&m=1025513&p=1&ord=d

I am in Germany so I can't help you with the Medicare question.

Vanny

<WaldenSeeker(a)gmail.com> schrieb im Newsbeitrag
news:9138ba3b-a411-4418-9c73-0e293eb93dc9(a)d1g2000hsg.googlegroups.com...
> Lucky me, it looks like I'm going back under the knife. This time for
> a triple bowel resection, three areas of my small bowel have to be
> removed. After the removal I will no longer have enough bowel to
> absorb nutrition and will most likely have to live on TPN. Looks like
> I'll be joining the roles of Hydroponic Humans.
>
> Though this will be no fun, it also looks to be very expensive. A
> brief view of internet articles give me an estimated cost of between
> $3,000 and $6,000 per week for TPN. So here comes the big
> question... Have any of you been on TPN and had it paid for by
> Medicare? I would also like to hear from anyone who has lived long-
> term on TPN. Is quality of life worth the pain of such surgeries when
> the best case scenario is being hooked up to an IV pump 10-12 hours a
> day for the rest of my life?
>
> Thanks,
> Milo


 | 
Pages: 1
Prev: Crohns/collitis, IBS probably caused by unknown bacterial infection.
Next: Mirizzi’s syndrome