I was diagnosed with FAP at age 36,  My story is contained in an article I wrote for UOAA's magazine "The Phoenix" and republished on the Quality Life Association's web page.  The link to the article is: https://www.qla-ostomy.org/wp-...chingMyOptions-1.pdf

Pouch failure is not common, 2-20% depending on which study you read. Most failurs are due to chronic pouchitis or a later diagnosis of Crohn’s that cannot be controlled. FAP actually has a lower risk of pouch failure.

That said, FAP presents its own risks and the while the pouch is not as susceptible to pouchitis, future adenomas and carcinomas are still a risk. In addition, the risk goes up as the j-pouch ages. So, you still would need surveillance indefinitely. But this is true regardless of the choices you make.

It is scary to have limited options with no guarantees of success. That is a natural feeling. We all have to find what risks that we can live with. Fear is normal. Just don’t let it paralyze you. Good luck in deciding your next step!

Jan

Thanks for clarification and support I was completely healthy before diagnosis, I hope that I won't have any issues with pouch. My father didn't have any GI polyps since surgeries (more than 30 years). Internist who performed colonoscopy and gastroscopy said it is a good sign for me to not have any polyps anywhere except on my colon and rectum. I had 3 polyps on rectum and she said that there is a possibility of having my rectum left in place with regular checkups, but if once arises a need to remove my rectum that surgery is going to be far more serious than removing rectum now. It's up to the surgeon to decide whether to remove or not rectum.

I have another question: What happens when j-pouch fails or it has polyps? You get it removed and created an ileostomy?

All the best,

Marko

@Scaramouche posted:

Thanks for clarification and support I was completely healthy before diagnosis, I hope that I won't have any issues with pouch. My father didn't have any GI polyps since surgeries (more than 30 years). Internist who performed colonoscopy and gastroscopy said it is a good sign for me to not have any polyps anywhere except on my colon and rectum. I had 3 polyps on rectum and she said that there is a possibility of having my rectum left in place with regular checkups, but if once arises a need to remove my rectum that surgery is going to be far more serious than removing rectum now. It's up to the surgeon to decide whether to remove or not rectum.

I have another question: What happens when j-pouch fails or it has polyps? You get it removed and created an ileostomy?

All the best,

Marko

Sorry about your Grandma honey, Glad your dad is well

Sometimes when the J-pouch fails, some people get redos. Redos can be an option depending on what the case is. Some people on here have talked about their experience with getting polyps removed. I have talked to some FAP people on here personally and they are doing fine with their pouch with no polyps, I cannot say that for all cases though.

I have a personal friend on here, his name is Rev Lenny and he has FAP, I am sure he would be more than happy to answer your questions and make you feel safer about J-pouch surgery. i would recommend to send him a private message, you two are a lot alike. His name is Rev Lenny.

When you send Rev Lenny a private message, just let me know so I can tell him personally to read it and message you back.

I wish you luck and many blessings on your surgery

I was diagnosed with FAP when I was 28.  Hundreds of adenomas polyps were found all over the large intestine.  My only symptom was rectal bleeding.  No one in my family had or has FAP but me.  A year later, it went to thousands of polyps in the large intestine, so my GI doctor referred me to a colorectal surgeon and told me I needed colorectal ileo-anal surgery then.  He said if I didn’t have the surgery before I was 30, I would die before I was 40.  I didn’t start growing polyps in my rectal stump or duodenum until 14 years ago.  They are removed every year and more grow then they are removed.

I sent you a PM.

@ksr posted:

I was diagnosed with FAP when I was 28.  Hundreds of adenomas polyps were found all over the large intestine.  My only symptom was rectal bleeding.  No one in my family had or has FAP but me.  A year later, it went to thousands of polyps in the large intestine, so my GI doctor referred me to a colorectal surgeon and told me I needed colorectal ileo-anal surgery then.  He said if I didn’t have the surgery before I was 30, I would die before I was 40.  I didn’t start growing polyps in my rectal stump or duodenum until 14 years ago.  They are removed every year and more grow then they are removed.

It might be better to take out the rectal stump so less will appear? I read that islands of the rectal stump can grow back but I think taking out the stump might improve. Did the surgeon ever offer that or is that something you might be interested in???

Lauren, removing polyps from the rectal stump isn’t a problem, as long as you stay on top of it and get it done.  I don’t want an ileostomy or any other hookup if possible.  If I were told I had rectal cancer or the polyps were changing in less than 6 months, I could see the reason to change to a different output way.

@Scaramouche, I’m not sure what happens if a j-pouch gets polyps, but if it fails, yes, you have to go to an ileostomy. Sometimes they leave the j-pouch in place, but usually they have to remove it.

If you live somewhere with expert surgeons (e.g. USA), they can sometimes fix a faulty j-pouch depending on what’s wrong (called a revision) or even create a whole new one (called a redo).

I have FAP and had a J pouch for 26 years and a malignant polyp was found near the anal sphincter and successfully removed.  The surgery compromised the inner sphincter.  Six years later, high grade dysplasia was found in the same area and pouch removal was recommended.  Since I strongly did not want an end ileostomy with its associated issues, I opted to get a continent ileostomy, a procedure that does not require having an external bag. The procedure being performed in the USA is the Kock pouch (K pouch) which has a high success rate and patient satisfaction.  I have had mine for 9 years and have a very good quality of life with it.  It is not a widely publicized procedure and there are a limited number of surgeons who perform it.  There is information about it in the internet.