Were you diagnosed with FAP? (Familial Adenomatous Polyposis) You need to find out if this is the cause of you having so many polyps. It usually is at your age. This is in our family, and my sons had total colectomies at 12 & 16. My grandson at 10. This is an hereditary disease, if this is what you have, you probably have a parent with it. Also, your children will have a 50% chance of inhereting the disease. I lost my oldest son and grandson, but my youngest son is almost 38. There are many other problems that come along with FAP, so it is very important to find out if this is what you have. You are lucky to have caught this in time, these polyps always turn cancerous, and a lot of people don't even know the disease is in the family until they develop colon cancer at a young age. If it is, I would like to share some information and experiences with you, and things to expect. My son is a marathoner, ultrathoner, mountain biker, speed hiker, and competes in jujitsu, so you see you can have a normal life. But he and his wife have chosen to not have children due to the risks involved.
I was tested for FAP and it was negative. But the doctors have told me I need to have the entire colon taken out since I have so many polyps.. :/ I was very nervous it was going to be FAP. I count my blessings that I dont pass that along to my children. Im sorry this is something you have to deal with in your family.
Are you having an ileal pouch (J pouch) created? When are you scheduled for surgery?
I havnt met with the surgeon yet. But my wife and I are going to the Cleveland Clinic to meet with Dr. Fazio in November. (Dr Fazio helped created the J pouch). So the J pouch is def a option.
Hi - some years ago I underwent a total colectomy for torrential diverticular bleeding and, in response to another Medhelp patient's question, I posted my own experience of this operation on:-
You may like to print this off and show it to your surgeon and ask whether this is representative of what you could expect from your own surgery.
Does someone else in your family have FAP? They are only able to locate the mutation in 70% of patients. Many years ago when my husband was diagnosed with colon cancer and died at 32, and his brother at 38, did they realize what this was. They were never able to locate the mutation in my deceased son, or grandson. My surviving son has been tested several times, twice this year, and no mutation found for FAP, they say it's there because he has the disease. I work with 5 geneticists across the country, and they are now thinking that the the mutation may not always be in the APC gene, it may be another gene causing the APC gene to malfunction. They are now looking into this because of the many people who they cannot find a difinitive mutation in. You truly need to meet with a geneticist over this, I know of no other condition to cause so many polyps in one so young. My son died because 10 years ago his GI didn't know enough to monitor him for a Desmoid Tumor which can happen after removal of the colon, by the time they realized he had one, it was too late. Just 3 years ago, my grandson's GI also didn't follow him for this, and he developed a 38lb Desmoid and this is what took him. You really need to be pro-active with this. There are many other symptoms which sometimes show, sometimes don't. Supernumerary teeth, bony cysts found on the head, arms, wrists, fatty tumors, and the list goes on. My deceased son, and grandson had none, my surviving son had all I listed. Get a second opinion, and the Cleveland Clinic is a good hospital, but it was the Univ. of Cinti. Hospital that gave my son 2 more years with us, after 3 months at the Cleveland Clinic, they sent him to UC, because they could do no more. His GI doctor @ Cleveland said the tumor could not be removed and sent him back to Cinti., to see a dcotor here. This doctor went in with 2 trauma teams and got the tumor! For him, us, and his precious little boys, these 2 years meant so much. When my son called me to tell me that this doctor was going to try and remove the tumor, I called his doctor at Cleveland and he told me "if they try to remove the tumor, you and the rest of the family have got to prepare yourselves, because he will not survive the surgery." But my son only had weeks to live, this doctor got the tumor and gave him 2 healthy years with us. If his heart had not given out, he would still be with us. I'm not trying to scare you, God knows you have enough on your mind. But I know that there are still doctors out there who are no keeping up with FAP and opinions differ, and this is why you need to get a geneticist involved. You've had these polyps for sometime now, and they just don't "happen" in someone so young. It won't hurt to speak with a geneticist, and I feel it will help. You need to completely rule out the FAP, please do this for yourself, all who love you, and your future children. Meet with a geneticist. My son has the J Pouch with excellent results. Good luck to you.
You are so fortunate to be going to such an experienced and reknown doctor. I had my J-pouch done 17 years ago and have had very good results. The first 6 months or so are difficult as your body adjusts. You will need to control your food intake, take very careful care around your anus and likely take some immodium in that first while but eventually you will be able to eat and drink most everything you like and have good control again. Eating a salad every day (every other is OK) and dried fruits are about all I need to avoid at this point. I can drink alcohol, eat beans, spicy foods, etc. Good luck with everything.
Sorry for being a pest, but I've studied this disease for 30 years and cannot stress strongly enough your need to meet with a geneticist. Colon cancer is NOT a young person's disease, it just isn't. For you to have this at such a young age, means your children will likely develop it also. This is why you have to meet with a geneticist, only they can do your pedigree and determine why,,,you developed this many polyps at such a young age, and what to expect with your children. It was FAP that brought me to these forums. After seeing the lack of knowledge that still lurks out there on FAP by GI docs, I feel I can help others to not endure what my family has, due to ignorance. If your GI did one test, and just said it is negative, then he is doing you a big disservice! Only a geneticist can tell you at this point if you could still have FAP. Don't bury your head in the sand on this, you need to really address this. Something caused you to develop many polyps at a very young age, you need to find out what. Even at 50 when most of us start enduring scopes for colon cancer, they never find this many polyps, maybe several. My daughter is 37 and even though she has never had a single polyp or any other symtom of FAP, all the geneticists, and docs won't say she still doesn't have FAP.
Even though the polyps are always seen in puberty and shortly after. She gets yearly scopes, has a 3 year old son who is treated as if she does have it. Because Hepatoblastoma occurs in newborns to 5 years, this is pediatric liver cancer, in families with FAP and sadly it is only at this point that the parents find that one of them has it. FAP normally turns to cancer by age 38, so many people are just starting their families.
I do apologize for having to be so blunt with you, but if I can help just one person, it is all worth it. Start by googling FAP and read all about it, google cancer in young people and read the causes. You really need to know why you developed all these polyps and if your GI didn't tell you that your children may be affected the same way, shows his ignorance. I hope you do further research on this, and please meet with a geneticist. Blessings to you and your wife......
Mammo, I really appreciate all your insight. It helps out a lot. Maybe we could exchange email address. I think you would know a lot and give some type of guidance. I am working with a Genetics Counselor at Cincinnati Children's Hospital as we speak. They tested the main gene and found no issues. We are now waiting for more test results because they are looking at 2 different genes that can cause these issues. Thanks!
Hi, I sent you a message with my email address.