Randy or anyone else having TPN

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dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/7/2010 5:12 PM (GMT -7)   
I would like to ask a question. By having TPN has your overall health improved, due to the feed you are
receiving? The reason I'm asking is, with my pancreas not functioning correctly, crohns in what is left of
my ileum, my absorption is so poor, that I'm now showing signs of malnourishment.
TPN, maybe one of my treatment options, and I was wondering if when I start getting all the right vitamins
minerals etc; will I feel somewhat more healthy. I know all the existing problems will still be there, but if I'm
getting all those things my body is lacking, I should at least feel a little healthier...Right.
Any thoughts or explanations would be really, really helpful.
Many thanks.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/7/2010 5:19 PM (GMT -7)   
Were you thinking of using it as a short-term therapy for a few weeks or months, or permanently like Randy?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 6/7/2010 5:49 PM (GMT -7)   
Im on TPN right now. Been about 1.5 months now. Still got a few to go. Already gained like 5-6 pounds and feel a lot better. Still weak and need exercise. But its a life saver if you keep your PICC line Clean
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 6/7/2010 5:51 PM (GMT -7)   
Oh and Dunny I wouldnt worry to much about the pancreas issues. You can actually ADD insulen or they can make the TPN HOW EVER your needs are. More of something less of something. Make adjustments. You get weekly bloodwork, home care nurse. Don't LET ANYONE ever tell you TPN is a drag.. its awesome.. You get to eat less, be lazy.. and relax... just kidding..

It is my 2nd time.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/7/2010 6:59 PM (GMT -7)   
Thanks debilitated some good info.

Ivy, I was thinking of short term therapy, but I guess that would be left up to the doctor. LoL
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 6/8/2010 1:52 AM (GMT -7)   
hey Dunny... well in my case yes i feel better than i would otherwise... i just cannot consume enough by mouth to survive.. so instead of dead, im on TPN ;0)... it takes a while for your body to adjust. id say for me because of all the problems that came with the whole situation, id say it was 2-3 years before i really got to feeling better. even on the TPN i still have to eat from morning till night . and drink lots of fluids because of my sort gut. but if you have most left and just doing it for bowel rest it should make you feel better in a while .
randynoguts 



     http://www.geocities.com/randynogutsweb/


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/8/2010 6:25 AM (GMT -7)   
Thanks randy.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


Brad P
Regular Member


Date Joined Feb 2010
Total Posts : 51
   Posted 6/8/2010 6:49 AM (GMT -7)   
I was on TPN and Lipids for 2 weeks prior surgery. I wasn't eating much but I gained 4-5lbs prior surgery. If I recall, I was getting 45ml/hr of the vits/minerals and 12ml/hr of lipids. I also felt much better within 2-3 days of being on it compared to before where I was really tired and fatigued
Regular Member...Veteran Sufferer.

CD since Fall 1987
Small Bowel Cancer - Sept 2008
Surgery to remove tumor - Oct 1st, 2008
Chemo - Dec 2008 to May 2009
Apri 2010 - NED (Cancer-free!)
March 2010 - Active CD and Fistula in Duodenum


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/8/2010 9:18 AM (GMT -7)   
Seems like this might be the right direction for me!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/8/2010 3:48 PM (GMT -7)   
I was on TPN exclusively for several weeks as a teenager, in that I wasn't allowed to eat or drink anything else, and only permitted the occasional ice chip to drink.

I don't remember it doing a great deal for me. In fact, I had a huge bleed the day after they withdrew the port, which was pretty devastating for me way back then, because I'd somehow been led to think that this could really help improve my health, and quickly.

The good things I remember about it are:

* fewer bms
* more time to rest and concentrate on getting better, instead of having to worry about eating / cooking / shopping / washing up

I had to do my whole TPNship in hospital because of the infection risk, so before you commit, you might like to find out whether you'll be able to do it at home, or will need to be in hospital too.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 6/8/2010 7:36 PM (GMT -7)   
Have you considered enteral rather than parenteral nutrition? From what I've seen on the literature on pancreatitis (with the reservation that most of the literature addresses acute rather than chronic pancreatitis), TPN is reserved for those patients who have medical contraindications to enteral nutrition and they're switched over from TPN to enteral nutrition as soon as possible. Here's a treatment guideline, although only a bit of it (page 33) deals with chronic pancreatitis:
 
www.espen.org/documents/0909/Pancreas.pdf (sorry I can't get this link to activate, but it works fine if you copy it into the browser bar)
 

Also, here's a short review: http://www.ncbi.nlm.nih.gov/pubmed/17967379


Whichever you do, I think getting better nutrition couldn't help but make you feel a bit better. Here's hoping for improvement.

Post Edited (Writer) : 6/8/2010 8:39:15 PM (GMT-6)


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/8/2010 7:44 PM (GMT -7)   
Thanks Ivy and Writer. I will give this therapy a great deal of thought.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/9/2010 4:54 PM (GMT -7)   
I agree with Writer. I was on TPN because I had terrible mouth and oesophogeal (horrible word to spell!) ulcers that made a n/g tube impossible. Enteral feeding can be much easier, especially if you just drink them instead of being tube fed, and much less dangerous in terms of infection etc.

You also continue to get a lot of the benefits in rest (no cooking or washing up), and fewer bms.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/9/2010 5:32 PM (GMT -7)   
The problem with drinking them I would still have the same problem, I don't absorb it. Basically my body
is in the state it's in because of malabsorption. first it was bad enough with a shortened ileum, now I have
to throw in the pancreas issues, which has made absorption worse. My last endoscopy showed blunted villi
in the jejunum, which is a very good sign of malnutrition. This is often seen in cystic fibrosis patients.
Blood work shows quite a few deficiencies too. So I'm between a rock and a hard place.
Thankfully, my weight is just above grossly under weight, so that's good. But it's my appetite that is suffering
the most....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

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