TPN, Crohn's, and Medicare
Walden...@gmail.com
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
Vanny
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
<Walden...@gmail.com> schrieb im Newsbeitrag
news:9138ba3b-a411-4418...@d1g2000hsg.googlegroups.com...
paul @removeppinyot.removecom Paul P
"Vanny" <Vanny...@antispam.com> wrote in message
news:fvsurd$gjd$1...@newsreader2.netcologne.de...
>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),
Shock happened to me too. The dose was for once a week Vitamin K in the TPN
bag. Once the pharmacist dropped the dose to 1/7 in each daily bag I was
OK.
I lived on TPN for a year or so a few times. I found that periodic
supplementation of a liter of saline or two on days where I was dehydrating
helped tremendously!!!! You can get seven to 14 bags of saline that will
last three to four weeks depending on how you feel and your activity level.
I ran the TPN for 12 hours at night. Some home support companies will try
to run you 24 hrs a day. Have your doc prescribe 12 at night. That was
real convenient. Started the bag at around 6 to 7 pm.
I had a battery powered pump in a back pack. I went to meetings, my son's
sports events, midnight shopping a Wal-Mart. Just carry your "emergency"
supplies with you. For me those included a bag of saline, back up battery
for the pump (a 9volt transistor battery), flushes etc, etc.
I even went on vacation with TPN. The hotel must have a working fridge in
the room. I put the back pack on the rear floor behind the drivers seat and
wrapped the IV around the left side of the seat.
The worst part was watching my family eat and drink (water). I was on total
bowl rest a few of those years. What helped with that was to take a bit of
food and masticate it to the point that the taste is all lost. Then spit it
out. Sooner or later the hunger pains went away.
You should get regular liver tests. Start them early.
And do NOT forget to flush the unused lumens (hoses). Some PICC lines have
an extended period of non use flushing. That is if it is not used you may
not have to flush it. I did after they clogged. Have some flushing heparin
in stock. An antiphilactic shock kit (benedryl, adrenalin) ready to inject
is a great idea too. You never know if some thing some night does not sit
well with your system. It beats waiting for the ambulance. The doctors can
help you administer over the phone while the ambulance in in route. I did
the adrenalin twice for the vitamin K. The second time I had the kit.
TPN is not bad especially if you are allowed to eat and drink!!!
Paul P.
Walden...@gmail.com
Thank you both for the info. I'll have to wait and see how much small
bowel they can save and what my options are. It's pretty clear that I
can't continue having partial bowel obstructions every couple of
months. And, I do know that the success rate for something like this
is much higher if the surgery is not done under an emergency
situation.
I have to admit that this is a bit scary but I think I can deal with
it. The last time I had a bowel resection everything went haywire and
I ended up in a coma, with kidney, liver and respiratory failure. It
took 11 months to recover and get out of the hospital on that one.
But I was able to eventually return to a normal lifestyle.