Hey there I read your post just advice. Try and get checked regularly with this disorder. It can get so nasty in no time. So always go for check ups and scans. If I didn’t do the scheduled procedures I’m sure I wouldn’t be here today. Your only 17 so stay positive!

I’m not finding anything, but I did find this site that you can request free samples. Maybe you could use it to contact the company to see if they have an equivalent cath or similar product. There is a toll free # to call. I’m going to call my former stoma nurse to see if she has any ideas.

https://www.liberatormedical.com/

How are you connected now--- do you have the Duodenum (First part of small intestine)?- I lost mine and that was the hard part -- But there must be something pulled up to your esophagus or are you on a port feed? I have the tiniest part of stomach now attached to esophagus, remainder of small intestine and remainder of pancreas -- there is a learning curve but I am still here and staying as strong as I can --dont hesitate to ask questions as I …Read more

I have had my entire stomach, large intestine, and rectum removed. Fun fun. You are not alone 🙂

You have had a real rough time ---I lost stomach, gall bladder, part of pancreas, large intestine, much of small intestines all in one surgery--- How can I help you??? I did not even know I had inherited this until late in life but I have and am doing all kinds of research to help others through DHMC.

Welcome to the community. Please feel free to reach out to members of the oneFAPvoice community for questions and support. Thank you for joining.

welcome If you have any questions or concerns I sure I can answer them for you. When I found out I had FAP I read so many book and medical records and journals about FAP. I called everyone no joke that knew about fap. feel free to ask any questions and again welcome to the community

Welcome from USA New Jersey

Welcome and do use the offers for info --At 74, I am ancient and also doing research for DHMV, but most of the crew is young --- I am in NH and certainly welcome any conversation !!

Feel free to email me lauren_vincent86@hotmail.com

I am new here as well. I was finally correctly diagnosed with FAP when I was 15. I have never met anyone else who has FAP other than my brother and mom. But their FAP didnt hit as hard as mine has. I was told that I was in the .5% of people who were diagnosed with FAP. So i look forward to meeting people. Hearing their experience, troubles, and triumphs.

My son is in the same situation. I try telling him to at least follow up with his doctor but to no avail. I would encourage you to at least get a colonoscopy to see where you’re at with the disease. Good luck!

I am not in San Francisco. But I do have FAP. My older brothers went and got tested after I was diagnosed. One of them found out they have it too. He ignored it until it hit hit like a freightliner and it was too late. FaP caused him to have stage 3 cancer. Several rounds of chemo, radiation, and surgeries later. He is now facing the effects of putting it off. Please I urge you to get checked out regularly. I would never want you to deal with…Read more

You are expecting too much too soon. I am little confused with your write up. Did they do the scopes & find some polyps which lead to the rectal surgery? I had my total colon removed & the rectal tissue. The surgery was 2 steps- one the make a substitute colon out of my small intestines & remove the rectal tissue. I had an ileostomy for 6 months. They went back in & hooked up the remaining rectal area to the small intestines. He…Read more

Good luck to you with your procedure.

I had a total proctocolectomy with J Pouch. Temporary ileostomy for 6 weeks. I was very sore for about 6 months. I’ve heard of people healing in 6 weeks and returning to work. I was not one of those individuals. I’m now 5 years out and though it was a long process of healing, the body learning to absorb, and reintroducing foods/adulting diet, it does get better. I’m active (ride horses, my Harley, and…Read more

I went in for my yearly scopes and yes they found them then. I have less than a half inch rectum left. I did have polyps in that last bit of rectum. According to my surgeon the j-pouch does not guarantee polyps not to grow. It does slow the process down but it is not a complete cure. I have the j-pouch and wore the ileostomy for 3 months then they reversed it in 2001. I have not had any polyps for 18 years. Now they are popping back up. I had the…Read more

Hi. They are called bear tracks.and they just can be a sign that you have fap.i dont know if I have them myself but my brother and my dad that both have fap have them.i dont think you really have to worry about them.

Hi,
yes, they are found frequently in FAP patients and are referred to as bear tracks and are no reason to worry at all! It is not true that they disappear, though. They have no importance whatsoever, but ophtalmologists should be aware of the connection to FAP, if they happen to coincidently see them, since they can lead to early diagnosis in FAP patients without family history or knowing about their condition.
Hope that this reassures you 😉

The correct terminology is CHRPE (Congenital Hypertrophy of the Retinal Pigment Epithelium). When present on both sides (both retinas) they are highly suggestive of FAP (one might argue diagnostic), on one side they don't mean anything but either way they are entirely harmless but, as best I know, do not go away.

I understand all people with FAP have these spots in their eyes, in the outer areas, and they do nothing except tell the eye specialist you have FAP. University eye training hospital used to get me to come in every year so that the new students could see if they could find anything different in my eyes to those of others. I gave that up after the excitement of Asian students who ate lots of garlic almost ended up sitting in my lap to try and find…Read more

Hello, I’m an 18 year old, and I couldn’t help but read your share and think about how similar it was to my experience. I was tested when I was around 10. My mom had FAP with no history of the disease in the family. My sister was the first born and didn’t get FAP and I was second born and got it. From what I gathered growing up, was that I would get a scope every year to check up on any polyps. The doctors would tell my family if there was …Read more

Hi. I just wanted to reply. I had my son tested at the age of 7. He is FAP positive. I wanted to give myself a peace of mind hoping I didn’t give it to him. But we don’t always get what we want, but at least we was able to find a dr that keeps an eye on him and looks for better treatment options. I was diagnosed till I was 23. And by then I was covered up with precancerous polyps. I wanted a better life for my son. So we got him tested and go…Read more

I realize there are some younger FAP patients on this site. Here is a summery of my sons life with FAP. Our youngest son had been checked at 14 years, 17 years and we were told he had no polyps or any sign of the disease. I must say going into this conversation that apparently the doctor who took care of my daddy who had colon cancer at the age of 26 years old did not fully understand this disease. I was 22 years old when I was diagnosed, my brot…Read more

I would never have brought into the world knowingly any children if I thought they have FAP but but we did not even know of the issue back then and I am glad I have my children. As for testing, my girls were adults and were genetically tested asap after my diagnosis. One carries it and the other does not. Then we had to go the next level and the one carrying it has passed it to her son. It doesn't jump generations thankfully so it was import…Read more