small bowel transplant

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redspot321
Regular Member


Date Joined Jan 2006
Total Posts : 303
   Posted 4/5/2008 3:40 PM (GMT -7)   
 
Does anyone know of someone who has had one?

randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 4/5/2008 6:37 PM (GMT -7)   
hey redspot, i was evaluated back in '05. you pretty much gotta be near death with no other options.. which is pretty rare.. like for me even though i have only a couple feet of intestne left and have been on TPN for over 8 years, i am know where near bad enough. they require other things to be wron g as well , like liver failure from tpn, or total lack of vascular access, which would be neck, groin, etc.... and you have to go through the evaluation process which was about 20 thousand, and when and iff approved, you need to move near the center that does them, (5) now i think, you have to wait for a match, blood type, SIZE matters, etc.... why are you asking , just curious?
randynoguts 



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


pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 4/5/2008 7:33 PM (GMT -7)   
I've heard that getting intestinal transplant does not guarantee that the disease won't come back and that it usually will at some point...basically because although crohns is a disease of the intestines, simply doing a transplant does not get rid of the disease itself since it's the nature of the disease to attack the intestines not the intestines necessarily attacking themselves rather the mechanisim of crohns doing so.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


CrazyHarry
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Date Joined Mar 2006
Total Posts : 1034
   Posted 4/5/2008 7:36 PM (GMT -7)   
i have read in literature that they did try this a few times (like 5 or less) and the patients were basically at death's door, so it was kinda like "you're gonna die, this may be able to buy you some more time, days or hours we dont know, but you can also go out in a way that will be beneficial to science and we can learn from this." i forget how long the longest person lived. a few hours? a day or two? not very long was the main point i remembered. that is an enormous system for your body not to reject.
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07


ivy6
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Date Joined Sep 2005
Total Posts : 10404
   Posted 4/6/2008 12:21 AM (GMT -7)   
How much of the digestive system does a person need to live? Randy, is it possible to rip the whole digestive system out - stomach, intestines, rectum, the lot - and just live on TPN? If not, do you know why not?

I.
Co-Moderator Crohn's Forum.


randynoguts
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Date Joined Jan 2003
Total Posts : 6050
   Posted 4/6/2008 12:59 AM (GMT -7)   
crazy harry,, your info is a little outdated... hundreds have been done.. mostly children. results are improvng, but like i mentioned you gotta be near dead... just somebody with CD aint gonna get one.. not at near a million bucks for the first year.

ivy, i suppose you could techincally do it, but there would be such complications, such as drains would need to be installed for saliva, liver and bile production, pancreatic juices, etc... plus hydration issues would surface.. even though i get almost 2 liters of tpn per day i still get dehydrated, if i did not have the small amount of what i do have i would be getting fluids 24/7. which would then lead to more kidney and liver problems . unfortunatley there is no substitute for what we are born with. nature is much better at this crap than science. plus you figure that some type of extra blood cleaning would need to be done. sure the kidneys excrete probably the majority of the toxins, but there is a bit of tranferance from blood to stool im sure... ? does raise an interesting subject though huh?
randynoguts 



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


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/7/2008 3:59 AM (GMT -7)   
Saliva drains? Wow, I never even thought of that.

And I wonder if it would affect brain function too - there are so many neurotransmitter thingies in the gut.

I don't know - I remember reading sci fi books as a kid and reading about heads surviving in pools of *stuff* that somehow kept them alive without a body (does anyone know the book I mean?) and somehow the idea must have stayed with me that it'd be easy to live without one's innards. Maybe the author was *really* wrong on that.

I.
Co-Moderator Crohn's Forum.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 4/7/2008 5:30 AM (GMT -7)   
Randy...you are like my latest text book! Thanks for being so informative on this matter. I have processed reinsurance claims for this treatment and read a lot of medical notes from the procedure. You have added to my knowledge base for recognizing a potential even further.
Unfortunately, all of the claims (not many so a poor study!) I have seen have been over 1.5mil and have had poor outcomes. I think the fact that you have to be "at deaths door" to get one influences the poor outcome results. Maybe this will be a future beneficial procedure, but it seems for now the results do not outweigh risks if you still have something to lose. Of course.....organ transplants started out similarly oh so long ago and have progreese so far....
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/7/2008 6:10 AM (GMT -7)   
I remember seeing a documentary on someone who had this surgery maybe 5 years ago. From what I remember just the pre-op was grueling. Unfortunately, my CD wasn't diagnosed at that time so I really wasn't paying attention to all the detail as I would now. I remember it was a woman, she did not have CD but had been on TPN for years. It totally turned her life around in a positive way at the time they did the documentary. Whether she is still living, I have no idea. Randy- You are an inspiration to us all, everyday! You are a knowlege base that could never be replaced. Thank you so much for your input on topics such as these.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/7/2008 6:53 AM (GMT -7)   
In the dim recesses of what's left of my mind I seem to remember reading of a young woman somewhere on the Continent who had small intestine and multiple organ transplants at one time who was the longest living survivor of such massive transplants at 5 years post transplants. I don't remember anything about the QUALITY of her life post transplant.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/7/2008 10:09 AM (GMT -7)   

If you google small intestinal transplants there's quite a bit of info...here's one link...

 

 

 
 
:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


CrazyHarry
Veteran Member


Date Joined Mar 2006
Total Posts : 1034
   Posted 4/7/2008 9:51 PM (GMT -7)   
hey ivy, i think you've seen one too many futurama episodes tongue

the digestive tract is a whole nother nervous system. removing it and giving the body a new one has really got to screw things up. i think i'd rather have that fecal transplant thing...
Crazy Harry

---------------------------------------------
Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

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