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

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!

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

Hello. Hopefully your father is doing okay! I’m an 18 year old and had my whole colon removed. I had mine removed when I was 16 like yourself. I now have a jpouch, so no external bag. From my experience I find it great. Main thing I can say to ya is it’s been to years since my surgeries, and The main things is to let the people close to you in, even if some don’t understand what your going through, just accept their support, cause nothing w…Read more

Yes. My son (19) has a few. I’m told colloidal modules are usually benign. He is being followed by an endocrinologist for annual ultrasounds.

Hi. I had nodules on my thyroid and my primary at the time didn’t want to send me to an ear nose and throat specialist. I would not leave his office until I got a referral because he didn’t think it was anything but it turned out to be cancerous. It is a good thing to get it checked out.

Surgery went well. My bottom hurts so bad but I know it will get better. He couldn’t go as deep as he wanted because of my muscle that controls my bowel. I will know by Tuesday if it is not cancer. Lots of prayers needed.

I actually had a similar find. My doctor found one really close to me ampulla and actually did an ampullectomy. He did this via an ERCP and inactually had quite a few of them to make sure afterwards that there was nothing growing back in the same area. Only issue I had with one of the ERCP’s is of course one of the risks....I ended up with pancreatitis and in the hospital for 16 days recovering from that because the heavy pain meds they put …Read more

I had the whipple surgery due to duodenum cancer. It is a hard surgery but you can do it. I have to take extra vitamins to replenish what the duodenum does. How old are you? Make sure the surgeon is top notch and knows his stuff.

They cannot do a redo on the j-pouch. I am facing a permanent ileostomy because the FAP polyps are growing in my last inch of rectum. I have had the whipple too because of duodenum cancer.

Pennie, I had temporary during J pouch process 25 years ago. I potentially face it again now. I pray it would only be temporary. Permanent has been a fear for 25 years. Life changed before I experienced it. You deal with the noises, inconvenience and life changes. But as a 20-something, it was degrading. But family and friends that are/were permanent dealt and enjoyed a slightly altered life. Personally, not sure I could.

Hi Pennie Bickerstaff - We are so sorry to hear this news and that you need another surgery. Depending on the location and invasive-ness of the polyps, it is possible not to end up with a permanent illeostomy. Many FAPers now have their colon and most of their rectum removed at the same time (a proctocolectomy) and end up with a re-connected j-pouch. If the questionable polyps are in a location or are too numerous for a re-connection, your medica…Read more

Pennie Bickerstaff - The estimates on prevalence vary between 1 in 5,000-22,000 individuals having an FAP diagnosis. One estimate has been that FAP affects 50,000 American families. The average age for developing FAP-related colon cancer is 39 but since it is a genetic disease with extracolonic manifestations (including some that develop in childhood), the age range of people living with an FAP diagnosis varies and fortunately there are many FAPe…Read more

I'm 50 years old. was diagnosed at age 37. Removed my colon and I go in every year to burn off poylus.

Hi Pennie,
I just recently had my rectum removed and they moved my J-pouch (had a total colectomy 8 years ago) further down and reattached it. I have a temp. illeostomy and they are supposed to reverse it in another 6 weeks or so. I go for my follow-up appointment next week. I have been going to the same surgeon for the last 8 years at Cleveland Clinic, Weston Florida. His name is Dr. Steven Wexner and he is fantastic! One of the best! I would hi…Read more

Thanks Pennie. Just saw my doctor yesterday and he has booked me for my reversal surgery in August. I’m relived but also know it’s a long road of recovery ahead. I will pray for you and will be thinking of you on Friday morning. I completely understand how you are feeling as I had the same worries. Take care. 😊

Hi wsh_caps43 - At the present time, I don't think POTS is recognized as being linked to FAP. Personally, I have not received a POTS diagnosis in addition to FAP. However, this absolutely does not mean that is not possible to have both diagnoses. In fact, we did some digging just to see if this comorbidity has been examined in the past and this poster presentation came up: https://www.fapvoice.com/rcuratenew/postural-tachycardia-syndrome-pots-p…Read more

ensure is full of nasty chemicals - perhaps bone broth, natural protein shakes. if there is a functional nutritionist or naturopath in your area they could set you up with liquid supplements which have a higher bioavailability than capsules and get you feeling better faster. good luck.

I have always complained of a ‘bubbly’ stomach after eating lettuce. It’s been nearly 6 years since my operation, but I just tend to stay clear of lettuce now! I find that my stomach bubbles and cramps if I need to go to the toilet. We aren’t all the same of course, but may be worth her noting down what she has eaten and seeing if it’s just one thing causing it. Best wishes xxxx

thank you for your response..the cramping seems to be happening daily now..she was told either partial blockage, adhesion or food sensitivity. They told her to keep a diary. ..She is upset about it not able to go out and spends alot of time laying around with an heating pad...Was this a common complaints for anyone else after your surgery

I don’t think the number is so much the issue but the kind....some lead directly to cancer others are non cancer forming
If you have a specialist I would definitely engage in this conversation
I had the entire colon removed and a lot more but that was what needed to be done . Also cutting over and over is my good and unless the wrap is used to prevent adhesions it can be very painful and cause further issues
I have a permanent ileostomy and…Read more

Hi! I had total collectomy including rectum small intestine is now large with j pouch. My colon rectum surgeon said in our area for fap with large coating to large intestine it total removal. But maybe each area is different. So I would toalk to surgeon and get second opinion just to make sure. Best wishy

Hey polypsaplenty - First off, I'm a little jealous of your lack of complications but of course am so glad to hear that FAP hasn't cramped your style (in a literal and figurative sense) post-jpouch. Yes, fundic gland polyps are pretty common in FAPers and although they have mostly been considered low risk up until now, in the past year, research has arisen that suggests they may not be as innocuous as previously thought particularly if FAPers h…Read more

Hi! Glad you are doing well. My gastroenterologist said every year both flex colon and endoscopy. But my team for my children whom are adults added side view endoscopy. I don’t get side view because I get ultra sound endoscopy every 3 months Best wishes

I just graduated every 2 years and I am happy with that but would not go longer. My surgery was very extensive 6 yrs ago and I have polyps in what remains of the stomach