Digestive system transplant

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radchic

Joined
Dec 13, 2010
Messages
135
Hi All!
Just got home from my in-laws and got some amazing news...amazing! My husbands 1st cousin who has severe Crohns and has been in hospital for 2 years just received a complete digestive system transplant. I mean eosophagus, stomach, small intestine and large intestine. He had to wait for a human donor, he now has a 13 year olds guts. I am flabbergasted. Apparently he is only the second person to have this surgery in the US. I don't have many details yet about the surgery but he is doing amazing. I need to call his mom and get the details..lol Has anyone else heard of this? What are your thoughts?
Maybe I should post in the general forum? Had to share with everyone here first!
 
WOW, theirs nothing else to say then...WOW!

Ya, I wonder if Jennifer or David can cross post this?
 
Really!? Wow again! That is absolutely incredible. Really hope this works for him x
 
Amazing that they can, but since EJ's 13, all I can think of is the parents and family of the poor donor.

Still, onwards and upwards! May these medical miracles continue until all our kids don't even remember what crohns was!!
 
WOW seems to fit! I think that's such great news...at the same time so scary. I'm sorry, my obsessive Mom mind goes straight to what if? So terrible to think of worst case scenario. I don't know why my brain goes there. I hope he continues to do well. That's a great step forward!!
 
Have to agree with the Wow and prayers for the donor family. Will definitely be searching for more info.
 
I might make myself look dumb...but here goes! Does a GI tract transplant get rid of the crohns? I thought crohns was in the immune system.
 
Wow, I hope your husband's cousin manages to enjoy good health after such a massive procedure.
I too don't understand this because I'd understand the immune system would attack the new tissue. I know CD is now considered "immune mediated" not "autoimmune" but there seems to be quite a lot of promise in stem cell therapy still. Did he or she try that?
I figure in about twenty years they'll be growing organs as well but again, I hope they figure how to control our kids' hyper immune systems in the same amount of time.
 
My understanding is he will have to continue with some meds. He has had so many surgeries that he did not have much left that was not diseased. It is not a cure, but for him, it was best case scenario. He was transferred to Mount Sinai from Michigan in November and just recently received his transplant. I am searching online for information but can't find much. Apparently he has a video of the surgery that the docs gave him..would love to get my hands on that! I will post as I get more info.
 
He is in his mid 30's but was Dx in his early teens. He was in really bad shape, he was admitted to hospital in Jun,2011 and has not left the hospital since. Its hard to consider this surgery but, really, it was his last hope. He was not a candidate for the stem cell's because he had so much of his system removed in over 100 surgeries. One of my greatest fears is my husband or son having repeat surgeries until there is nothing left, then what? I realize that this is not ideal, but at least now, there is something they can do. And if they can do this, what else is on the horizon? I am trying to contact his family to find out more because my mother in law did not ask many questions. She didn't think it was important. But then, when my husband was growing up, she didn't think to question why an 11 year old little boy(my hubbie) was not growing and on ulcer medication...sorry, I digress! lol
 
I think it's too early to tell if it would "cure" crohns, but I'm sure the operation was done out of complete necessity, you have to realize when you have organ transplants you're signing up to anti-rejection drugs for the rest of your life. Hopefully medicine will be able to solve this problem in the future. Heart goes out to the donors family, and I wish your cousin the best of health.
 
Amazing! I didn't even know this was possible! I hope he has good success with this, and hopefully this awesome gift will help relieve some of the donor's familiy's sorrow.
 
What a fabulous story Rachel! :)

What a magical yet bittersweet time for he and his family. After all the trials and tribulations this young man has suffered I hope more than anything that this transplant gives him his life back, bless him. :heart:

Please let him and his family know that we are thinking of them.

Dusty. xxx
 
Hi all..I have an update...a very sad update. He had the surgery and was doing well, they even discharged him from the hospital. A couple weeks after his discharge, he was readmitted. He had developed Crohns in his new intestine. Surgery was no longer an option, he had a skin graph from his leg to close his abdomin from the surgery they did try that didn't take so he had an open incision and became septic...sadly, he died yesterday..he was 36. I am so sorry I don't have a more positive post and that this is not the outcome we had wished for, but I wanted to update this post and let everyone know.
 
I am very sorry for your loss, what a courageous person your cousin was!

That is All I can think of is what a courageous battle your cousin faught.

sleep well angel❤

My prayers are with you and your family as well as the donor's family❤

Many blessings,
Michele
 
Thank you for updating us radchic. :ghug:

Please accept my most heartfelt sympathies for your loss, my thoughts are with you and your family during this difficult time. :heart:

Dusty. xxx
 
My deepest sympathy goes out to you and your family. I didn't even know transplants were options for crohns patients. Thank you for sharing your experience with this tragedy to remind us to appreciate every day and to never give up fighting.
 

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