Cleveland Clinic Does FIRST Small Intestine Transplant!!

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CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/19/2008 8:16 PM (GMT -7)   
http://www.cleveland.com/news/plaindealer/index.ssf?/base/news/1216369870243350.xml&coll=2
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.


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 7/19/2008 8:22 PM (GMT -7)   
Wow. I had no idea they could do that! That's awesome!
turboemma.blogspot.com/


smile1967
Regular Member


Date Joined Jan 2008
Total Posts : 174
   Posted 7/19/2008 10:33 PM (GMT -7)   
I also had no idea they could do that either and so many a year! I would like to know how these patients are doing now after these surgeries and how long it takes before the disease shows up in the "new" intestines.
  • 41 yr old farmwife!! and mom of boys 11 and 9
  • resection surgery Feb. 2008
  • Pentasa, Entocort (when needed), citalopram,probiotic
 


LBJ
Veteran Member


Date Joined May 2005
Total Posts : 511
   Posted 7/20/2008 5:56 AM (GMT -7)   
WOW!!! That's pretty awesome! I hope it works. Yes I wonder too if the disease hits the new intestine.
Living with Crohn's Disease since Jan./2000 but had a few years prior
I'm a true Crohnie with IBS too
 
Meds I have tried:  Too many to list- LOL
Meds currently on:  Prednisone 20mg tapering  Back up to 30mg  :-(
                           Methotrexate injections once a week 25mg
                           Folic Acid 5mg once a week
                           Wellbutrin
No Surgeries
 


bentwistle
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 7/20/2008 6:15 AM (GMT -7)   
That's amazing. One thought that came to my mind reading this article though is I've often seen articles that say people don't die from crohn's - but it sounds that the person in the article would have died without the transplant ( but does the death then get blamed on liver failure?). If the transplant were to reject (God forbid), and he perished, then is it death by surgical complication? Which came first - the chicken or the egg? Just food for thought as I go make my breakfast. Mmmm...maybe some eggs sound good -lol

Bev

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 7/20/2008 8:06 AM (GMT -7)   
Quite likely the cause of death would be something like this: liver failure due to underling Crohn's disease.

The last I had read there was a woman still alive 5 years after small intestine transplant and was the one to have lived the longest so far. I believe she was on the Continent somewhere but don't remember much else. Oh, and I think she was a multiple organ transplant, not just small intestine. Anyone else remember this better?
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.


jdiane
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Date Joined Jan 2003
Total Posts : 1131
   Posted 7/20/2008 9:39 AM (GMT -7)   
Yes, I remember her and have met her, great lady. It was a multi organ transplant, must have been about 6 or so years ago. I haven't heard how she is now. And yes, Crohn's can come back and attack the newly transplanted intestine. Actually, most likely will...... one of the reasons why they don't like to do this surgery on Crohn's patients. It is saved as a last result obviously.
 
 


hspenser
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Date Joined Dec 2005
Total Posts : 544
   Posted 7/20/2008 11:55 AM (GMT -7)   

Got a call last night from my sister about this transplant...

here is a link from another source:

http://www.wkyc.com/news/health/health_article.aspx?storyid=93282&catid=7

wierd thing is that then this morning there was an obit in our local paper about a 43 yr old woman, mother of two girls (12 yr old twins) that had been diagnosed with Crohns when she was 16.

She died of from the complications of the disease....

I have always heard that it affects the people who get in their youth or infancy the worst.

SO..Bentwistle...it is like Enphysema or Aids...folks don't really die from that particular disease...they die from the complications...in a Crohnies case it probably is from the various things that happen when you become mal-nurished...and run down from the loss of blood...

I know the transplant will hopefully give this man a longer life and that is very important...but there has to be some concern that the disease will now show up in another part of his digestive tract.  I had also read somewhere that many Crohnies get the bag or major chunks removed expecting to then be symptom free ....only to have it show up in a new area.


dx IBS 1999   UC 2000   CD 2001
Tested BIOGEN TYSABRI (gave me 2 years of remission)
currently on Low Dose Netroxene (started Jan. 19, 2007)...against Dr's wishes, he was pushing for Remicade.  Stopped the Naltrexone July 28th...started Humira Aug 31st, 2007...current dose two shots every other week.
Crohns is currently active and has been since April of 2005
51 yrs old


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/20/2008 7:33 PM (GMT -7)   
I'm sure the long term survival rate will increase as more small intestine transplants are done and are done earlier before major damage to other organs occurs.

Goshes! I thought our precious RandyNoGuts must hold the record for longest time on TPN but doggone this guy had been on TPN 13 years!!!
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.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 7/21/2008 1:06 AM (GMT -7)   
hey guys, and C2 especially.. while i am coming up on 9 yrs, in dec, i also belong to a TPN users site.. and belong to the OLEY foundation, which is a foundation just for TPN and tube feeding patients... i have read of and seen the stories of people that have been on TPN for upwards of 25 years, rare indeed, but possible. the whole thing is the type of formula needed and how much. most of the liver troubles come from too much fats and things needed. luckily what i have left of my colon(1/3) seems to keep me from needing lipids the last few years as it adapts. which will hopefully keep my liver more at ease. i think before i would agree to anything that drastic, i would give up the TPN and just eat 24/7 and see what happens. even though i will eventually be a candidate, i think i will pass.
randynoguts 



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


Betagirl
Veteran Member


Date Joined Jan 2003
Total Posts : 1928
   Posted 7/21/2008 4:15 AM (GMT -7)   
Northwestern does these surgeries as well. I used to sit in on the transplant team meetings and they'd have a handful of small bowel transplants on the list. Certainly were dwarfed by the liver transplant case volume, but were there. I'm not sure how long they've been doing them, but at least a few years. Glad to see CC is now in the club!
"Only the meek get pinched...the bold survive."

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