Bowel Transplant

[xJillx]

I recently read an article in Parade in the US Sunday paper of a young girl's small & large bowel transplant for her rare condition called chronic idiopathic intestinal pseudo obstruction. I wondered if this could be a development for IBD, as well. Thoughts?

http://www.chp.edu/CHP/matisse+reid

 

[Jessi]

Ooooo, Jill. I didn't know you posted this here. I just made a comment on TiberianFire's Your Story thread where you mentioned this.

 

[xJillx]

I agree with your theory, Jessi. Our issue is autoimmune, so a transplant won't solve the issue permanently.

However, would it allow a fresh start for those who exhausted many of the treatments? Just a thought...

 

[David]

Intestinal Transplant For Crohn's Disease or Ulcerative Colitis

Has anyone here with Crohn's Disease or Ulcerative Colitis been evaluated for an intestinal transplant or better yet, had one done? I wasn't even aware that it's possible, but it looks like it is indeed being done. From what I've read, having an IBD diagnosis does not stop you from being eligible.

If there are any researchers out there or doctors that perform intestinal transplants and are looking for possible patients, please use the contact us form at the bottom right of this website as we might be able to help facilitate connections.

http://www.ucsfhealth.org/conditions/intestinal_transplant/
http://intestinaltransplantassociation.com/?cat=7
http://my.clevelandclinic.org/transplant/services/intestinal/default.aspx

 

[lookame]

I've read up on an intestinal transplant and they don't work quite like any other transplant because the organ is so large. They often only transplant if it's absolutly required(as in if the patient's entire track needs to be removed). It's a very extensive and long surgery and after a couple of years the organ fails, gets rejected, or simply dies off. In other words it's not usually a viable surgery and not a cure.

 

[Jessi]

@ Jill ~ I wondered that, too. And what about the people who have had so much removed that they are unable to absorb vitamins? It would be nice to have a fresh start. Believe me... I have toyed with this thought a lot.

My son said he wants to invent a bionic colon for people like mommy. :hug:

 

[David]

Hahah, I didn't see your thread Jill and created my own yesterday. Great minds think alike? Or maybe we're psychically connected. *plays scary music*

I hope you don't mind but I merged my thread into this one.

 

[Kelly2]

My only thoughts are that instead of getting an intestinal transplant, I would be more interested in getting an Immune System transplant. It is the immune system that is causing the crohns. This is exactly what stem cell transplants are - an immune system transplant. In the past they have done the autogulous transplants - reimplanting your own immune system - in essence, "rebooting" your immune system. In 2011, they just started doing "Allogeneic" bone marrow transplants. This is where they are implanting someone else's immune system into your body! I think its very exciting and something we should be watching. Over 15 years ago, they did these donor allogeneic bone marrow transplants on 5 patients with leukemia who incidently had crohns, and 15 years later, not one of them ever had their crohns come back. I know the whole issue with stem cells can be confusing at times, but simply put, there are just 3 methods of stem cell therapies out there. One where they just inject stem cells into you to fight inflammation (but it does not change your immune system in any way), secondly, the autogulous transplant where they destroy and rebuild your own immune system, and 3rdly, the recent Allogeneic transplant, where they actually destroy your immune system, and give you someone else's.

 

[David]

I agree 100% Kelly. My thought was it could be beneficial for those who have had extensive resections or are facing resection due to massive irreparable damage.

 

[Kelly2]

Absolutely right David. I don't have Crohns, my child has for many years though. But, if it ever became "refractory" and stopped responding to medications as you describe, I would'nt think twice about doing the allogeneic bone marrow transplant. I would make sure they found a 6/6 donor match, and do the transplant. I really do believe it is a very exciting time in medicine due to stem cell treatments. Not only for crohns, but for a host of other illnesses.

 

[littlemissh]

They are doing bowel transplants at addenbrookes in cambridge , uk for some with Crohn's.
Primarily those who have very little small bowel left and so are reliant on tpn / chronically malnourished. Dr Steve Middleton is one of the lead gastros involved.

 

[lancek]

David,

I love your picture in beautiful Naples. Hopefully, will be headed down southward to Fort Myers Beach for the month of February. Thank you for putting in time as an admin. I'm still new here and trying to navigate around the various pages.

 

[xJillx]

David - I was hesitant to post on the subject, so I am happy to see someone else was curious about the topic.


I agree with most. I feel a transplant would be most beneficial for those with significant loss due to surgery. However, it won't solve the issues as our problem is auto-immune. But do you think treatment that no longer was effective could work once again after a transplant??

 

[Jessi]

That's a very interesting question, Jill. I hadn't considered that yet. I'd love to see some studies done.

 

[DustyKat]

I too agree with resetting or replacing the immune system is the key to it or something that "switches off" the gene that activates it. While ever the immune system is awry and/or the gene is switched on I see bowel transplantation of only limited value. Of course, for those like the young girl in the article it is about quality of life and that is as valid a reason as any to head down that path regardless of the eventual outcome.

As to medication post transplantation. Perhaps it would be effective if the drugs that failed, failed when the disease was very advanced. I think if the drugs failed when they would have otherwise been expected to work then I don't think it will make a difference as it was the bodies ability, independent of Crohn's, that failed. By that I mean, a failure of the liver to metabolise or serious side effects, that type of thing. Just my musings! :lol:

Dusty. xxx

 

[xJillx]

@Jessi - I wonder if studies will be done. I am not confident transplants for Crohn's is high on the list as it is most likely only a temporary fix.


@Dusty - You make very valid points. I think you make an interesting point that drugs that couldn't work because disease was so advanced may work after a transplant. Here's hoping anyways.

 

[Kelly2]

I do know that after a stem cell transplant, all the meds you take post transplant is like taking them for the 1st time. Most patients who may need some meds post transplant, find that it works so well, they very quickly go into full remission, whereas before the stem cell transplant, they failed with these medical therapies.

 

[Emily]

Great article. Go UPMC Children's!! Modern medicine just keeps coming up with great new stuff.
Like you said Jill, I feel like with Crohn's the problem isn't the organ itself, rather an autoimmune problem so I dunno about this trasplant for Crohn's treatment specifically. But perhaps it could be wonderful for people who have severe Short Bowel Syndrome do to many operations for their Crohn's/Colitis.
This is the first I've read about the bowel transplant. Really interesting!

 

[lancek]

Yes, I htink it's the immune system that is the problem, unfortunately!! How can a person (me) make listings on the bottom of a post that stays like the one above (a sig line)?
_________
Mom of Lance (36)
meds: Humira, Imuran
diagnosed: Crohn's at age 30

 

[David]

We have someone who recently went through a transplant on the forum! Please see this thread.

 

[colphin]

Hi all, I figure that the method to resolve the autoimmune issues and the path to good transplants will both happen relatively concurrently. Both are close. I am excited for future generations of sufferers although not confident it will work for me. My "cure" is lots of excercise, mediation, care with food, and laughter along with a view that says, I cant cure it so I will just move on. Apart from the occasional 7 hour op that seems to work pretty darn well! Also note The Weisman Institute in Israel believes they ahve a cure for the autoimmune issues!

 

[giftedbyadoption]

No one mentioned a transplant to me and my intestines was ruined by IBS and not crohns there for I could get a new colon and be fine supposedly ??...

As for the immune system transplant dont I WISH I have RA and man would that be great to get that changed and for people with crohns and many many other things like lupus and etc...

I never heard of the colon transplants and I bet its a HUGE expense and fought to have done in the US??

 

[Miss Underestimated]

Since the problem is the immune system, I don't see how a bowel transplant would be a cure. Am I missing something?

I believe the cure for many will be a genetic therapy of some sort. However, since they're still discovering the genes involved, I guess it's a long way off.

I also, personally, believe that some cases are environmentally caused. Much of what we eat isn't food at all.

 

[giftedbyadoption]

Since the problem is the immune system, I don't see how a bowel transplant would be a cure. Am I missing something?

I believe the cure for many will be a genetic therapy of some sort. However, since they're still discovering the genes involved, I guess it's a long way off.

I also, personally, believe that some cases are environmentally caused. Much of what we eat isn't food at all.

Mine was NOT immune related at ALL ....not everyone loses their colon to crohns.
I also started with mine pretty much @ birth by the age of 2 I couldnt go to the bath room :yfrown:
But docs said my colon was almost 10 feet and my insides are the size of a teen but my organs are the size of a adult crazy.... I think you are right about the immune patients not being able to transplant because it would just start all over

 

[Miss Underestimated]

Oh my! To go through all that as a child!! I really cannot imagine it.

I often think how I was blessed to have lived a decent portion of my life without this disease, and even now, my symptoms are negligible.

 

[giftedbyadoption]

Oh my! To go through all that as a child!! I really cannot imagine it.

I often think how I was blessed to have lived a decent portion of my life without this disease, and even now, my symptoms are negligible.

Its rough not sure to be angry or grateful I just ended up with my pouch? I har about little kids having them and I feel so so sad and scared for them. BUT then if I would have had this done before age 42 I would have not suffered for 42 years maybe not have had many misdiagnoses and many other etc...

Oh well I just need to heal now I am 7 weeks post op and have a ways to go but at least I can eat now

 

[Sparkle2012]

Seems like if not a transplant, they could come up with a pig-gut or an artificial patch to link the resections and keep the bowel from getting short.

 

[Alcatraz]

After living 24 years with a J Pouch, I'd be more than willing to take my chances with a colon transplant. My only problem is finding somebody to perform this surgery.