Continue with meds VS potential permanent TPN!?

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mazey
New Member


Date Joined Mar 2010
Total Posts : 16
   Posted 3/15/2010 11:03 AM (GMT -6)   
Crohns and adhesions and fistulas have got really bad again recently and I just want them to take the affected bits out but the catch 22 is that I've only got about 90cm of small bowel left and THATS IT! And the surgeons/doctors reckon that if they take any more out I will have to live with permanent TPN as I wont have enough intestine to absorb nutrients. But am fed up with all these meds they keep shoving down me that dont seem to make any difference.
Don't know whether to suffer the pain and illness and constant trial and error of new drugs or just admit defeat and get them to take it out and have 12hrs a day on TPN?!
Anyone had similar experiences with small bowel syndrome and TPN??
Thanks for any help or advice anyone has to give
CD for 15 Years, Ileostomy for 9.
7 Re-sections since then and just started on Methotrexate!


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 3/15/2010 3:18 PM (GMT -6)   
That sounds like a big decision with lots of suffering attached. There is always the hope they come up with something new, but in the mean time...

Hope you find the solutions you need.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/15/2010 4:47 PM (GMT -6)   
How does it work being on TPN long term like that? Do you have to change the location of your line every few months or something? I know there are risks with having a line in that long, too.
I've only been on TPN for about a month now and probably have 3 more weeks, and I'm always nervous about the line....but I have an 11 month old who likes to grab things, too, so it makes it scary for me
26 year old female
Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
4/6/10 Going to try to go back to the J-Pouch again
Imodium (8/day), Questran (3/day), TPN 12 hours/day, IV fluids 4 hours/day

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