FAP and Colon Transplant options?

Angel88 · New User Joined: 28 Oct 2007 Posts: 3

I'm 18 at the moment and about half a year found out that I have a agressive variation on FAP. The threatment options given to me really scared me off and I was wondering if a colontransplant would even be possible.

The doctor told me that it wasn't on option withouth going into the issue any deeper, I really do wish to know more cause this would change my policy on undergoing surgery.

I'm faced with the choice to do notting for the next few years and try and reach 30 or undergo some serious surgery's and have no guarantee what so ever.

-Is there such a thing as a colon transplant I'm sure I've heard of it!
-Is a colon transplant allowed when you have FAP or a variation on it, is it just the doctors choice or is there legislation somewhere stating that it can't be done?

Thanks so much

brainman

Hi Angel88, I do not know if a colon transplant is even possible. However, if it is possible, it would be a much scarier thing than even the most aggressive surgical removal of the cancer or chemotherapy or radiation therapy or any combination of these. You would need to be on immunosuppressants for the rest of your life so that your body would not reject the transplant. So, I would highly advise you against a transplant... IF one is even possible. Continue to work with your medical team to find a solution that will work.

Let us know what you find out.
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Angel88 · New User Joined: 28 Oct 2007 Posts: 3

In the last few weeks i've heard alot/read alot and had alot of (not always wanted) advice.

Colon transplants aren't done in general due to the high risk factors involved. Ontop of that the tissue can get infected with deceases you already have, even genetic. Tho the rate of it recurring isn't extremely high they don't do it for those reasons.

Another option would be a j-pouch surgery, in which they remove the large intestent, which isn't very helpfull either (in my situation either).

In the end i've chosen to not undergo any surgery and go for quality of life instead of quantity. So i'll end up having to undergo some minor check ups on a year (or two year) basis and using medication that will slow down the process by a bit, there's heavy medication available but somehow I don't feel like feeling fucked up/sick/weak all the time (or atleast every few months that I have to take medication)

I've had to see alot of docters, since most of them are very stuborn and don't feel like you need to know the alternatives. For them it is easier to suggest the rapid way out which leaves them with little paper work.

I even met some doctors that simply told me their couldn't be bothered to look for other options. So after alot of nagging (no standing up for my rights) I finally met a doctor that explained alot of options and risk/pro's-con's. Ontop of that she didn't force me into a disicion and i'm greatfull for that.

showbiz111 · New User Joined: 03 Jan 2008 Posts: 3

Dear Angel
My family too has been 'blessed' with familial multiple ademaetous polyposis and gardner's syndrome. When I was fourteen (thirty years ago) I had a subtotal colectomy, only seven inches of colon remained. I had periodic checkups, and was able to lead a fairly normal life for the past three decades. However, due to my finances and the death of my doctor, I was lax in my colonoscopies and discovered this year that I had Stage I rectal cancer and polyps in my duodenum that are precancerous.
I haven't know anything about colon transplants, but don't think they are viable because I try to keep up with medical info in this area. If the disease is as agressive as you state (and there are over 400 gene mutations for FAP) I urge you to get as much information about treatment and do so quickly, you can also get second opinions. I don't know what state you are in, I live in NY and have been treated by Columbia Presbyterian Hospital and also in the past by Sloan Kettering Hospital, both top rate facilities. My current doctor is Doctor Milsom, Chief of Surgery at Columbia Presbyterian Cornell Medical Center branch, who is tops in the field. I almost didn't have this doctor, and the other doctor I had was very pessimistic about my recovery options. However, God sent me messages through friends and acquaitances which led me to my current doctor and I am hopeful about the future.
I pray for you that God provides you with the best doctors and that you have a speedy and complete recovery.
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