Question About Familial Polyposis? - Bowel Disorders Message Board

lookinforanswer · 09-30-2005, 06:23 PM

Hi,

Our neighbor has always had a problem with her colon, and she has to go to the bathroom alot, well I asked her today exactly what was wrong and she told me everything. She told me that she has familial polyposis and she gave me alot of information about it.

She told me that her small intestine basically goes from her stomach to her anus and if she gets any more problems that she doesn't have enough of intestine to carry this out and that she would have to wear a bag, how sad.

Everytime we have lunch together, right in the middle of lunch she has to go to the bathroom and I never really asked, and she would kind of want to talk about it but I didn't want to seem nosey but we have become close these past 2 years, so I thought maybe I could ask.

She was actually happy that asked her. She told me there are alot of foods that she can't eat, alot of foods with seeds, alot of beans and other things. Why is it that she can't eat some of these foods? I don't understand.

I went on the web and tried to find information but all of the pages give the same old information about it. I would like to know more than what is involved just so if anything were to ever happen I can help her out maybe.

She told me that it is rare that it runs in the family, what I don't understand is that she has two grown kids, a son and a daughter, well the son's girlfriend is pregnant and her daughter is trying to have a baby. Does it seem fair that they should have a child knowing that this disease runs in her family, she said that her father, mother, and cousin died from it, she has it along with her sister. I am so afraid that if these children get it that their life would not be easy.

She said that she has had it for almost 35 years. She knew she had it before she had her kids.

I would just like to know more about it if someone could give me any insight or info.

And Yes, I feel bad for anyone who has this, it must be Hell.

joanner · 10-01-2005, 12:30 AM

Hi,

My daughter has Familial Adenomatous Polyposis. We've all been tested for the mutation on the APC Gene and our daughter is the only one with the mutation in our family. It somehow occured "when the sperm hit the egg" is what the genetic councellor told me. She's what's referred to as a New Mutation. If she has children (and that will be her and her partners choice), they would have a 50% chance of inheriting that mutation. She's only 18 so she has a while to decide.

Anyways if your friends children do not have FAP then their children will not have FAP, or it would be a random occurance like what happened to our daughter.

Our daughter goes on November 22nd to have her colon removed and will have what's called a J-pouch formed out of the small intestine. Her surgeon is attempting to do it in one step so she doesn't require the ostomy bag for a few months and then require an additional surgery. This beats ending up with colon cancer at a young age, due to the many, many polyps in her colon.

Frequent bathroom trips are common for people with a J-pouch, as they have no colon to absorb all the liquids consummed, and bowel movements tend to be more loose and frequent. Many also don't have the same storage capacity as those with a functioning colon. Also since there is no colon, some foods like nuts, vegetables, and fruits with skins can stick to the small intestine and cause blockages, and/or pain. It takes experimenting with foods to find out ones that cause you discomfort and ones that don't.

This is still not a cure for FAP'ers as they still require a lot of monitoring to watch for things such as Thyroid Cancer, duodenal polyps, stomach polyps, desmoid tumors etc...Frequent scoping is a must.

If your friends children do not have FAP I would not worry about them having children. Many people who have FAP still have their own biological children, it's a very personal choice. I can't even say what I would do myself, as it's a tough decision.

I hope I helped you out a bit anyways!

Joanne