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

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

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

Loving all of the options! Great to see such expansion.

Hi dmarie - While we're glad you don't have F.A.P., we know not having a formal diagnosis can be even more frustrating. No need to have an F.A.P. diagnosis to find support on oneFAPvoice, don't hesitate to share what's on your mind here. I can definitely understand the desire to hopefully minimize your screening frequency and worries and it's tough to make that call when you're not sure entirely what is going on and what your risk factors a…Read more

I don't know why the genetic test isn't clear. Polyps don't have to be cancerous but all to often they really feel like a time bomb --- I have FAP and have had a permanent ileostomy and it is easy as can be to handle... but there are so many new happenings -- I have heard of an internal one that seems awesome... my niece had her affected colon removed and reconnected before the polyps could cause a problem-- and she has been very happy. H…Read more

Hi, My loved one also has all the symptoms of attenuated FAP and the genetic testing came back as a "variant of unknown significance." I hope you dont mind my asking...did this also happen to you? To my loved one this means, " I dont have FAP". However it's my understanding that a variant along with typical FAP symptoms is treated as a positive diagnosis. This whole thing has been complicated and I appreciate any insights. Thanks!

Where I live people and my own doctor doesn't understand how much sh*t this gene can and has caused. I have a J pouch but I wish I let cancer get me. Pain I'm in daily and I ask my GP and consultants for help and all I get is "it will get better with time". Over a year on no change, toilet trips 10 to 20 times a day. I have got myself referred to an incontinence nurse/team but haven't heard back. Wish I died when I was younger to be honest. …Read more

Ashlyn Schefano We are so glad that you've found oneFAPvoice helpful, we are grateful to have you as part of the community (although as we all know, it's a club we wish you didn't have to join). oneFAPvoice is here to help so do not hesitate to reach out with questions or even just to share what is going on in your world today! There are several other members (myself included) who also lost their colon before 30. You are definitely not a freak…Read more

I personally don't (yet, hopefully won't), but it can be common. My great-aunt with FAP had some issues and turning out that some polyps started to form there. Make sure you speak with you doctor (if you have not already) and maybe ask about a possible ultrasound on your thyroid to make sure.

Ashlyn. I am 49 years old with fap. I had papillary thyroid cancer when I was 16 and had complete thyroidectomy and radioactive iodine treatment. I have been cancer free for over 30 years. I take 200mcg of synthroid per day. I don't take the generic, levothyroxine because it does not work well for me at all. Feel free to message me if you like

FAP and thyroid go hand in hand. I get tested annually and we all are supposed to be....
Thyroid cancer is a real issue...
I have lost 1/2 of each eyebrow and take thyroid medication daily...it is a small white pill but it is significant !

The radioactive iodine was no big deal at all for me. I didn't have any side effects from it. My dad had a large nodule on his thyroid that was benign.

Hi psycatozzy - Thanks for posting this important question again so that the community could share their experiences. As so many have said, sadly thyroid complications are associated with FAP and annual ultrasounds are generally recommended (unless additional risk factors or personal history necessitate different surveillance). Here is an article about thyroid related issues seen in Sloan Kettering's hereditary colorectal cancer registry: https:…Read more

I didn’t know I had FAP until I was 26 (no family history), but when it was discovered, I already had cancer at three different sites in my colon and rectum. I remember thinking on my 30th birthday just what a blessing it was to live to see that birthday. I’m glad your doctor is being proactive, because a cancer diagnosis can come so early with FAP. I’m sorry, because I know it’s hard to receive that kind of news from your doctor, but to…Read more

Hi there. I am 25 now, lost my colon when I was 22 due to FAP. It is a huge life change but it honestly relieves so much stress and anxiety to get the surgery over with and be on the road to recovery. If you have any questions feel free to reach out to me! I wish I would have known about this site at the time of my surgery.
-Alex

Hi Ashlyn, it’s an incredibly scary time. I had mine when I was 18. I always thought of it in a positive light. It’s a precautionary measure and it’s better to act before than after it becomes more sinister! I hope you’re getting a lot of support from family and friends xxxx

It was great getting to meet you! Thanks for sharing!

Sounds like gas to me. Gas is my major compliant. Try Phazyme to help you release it. Don't buy the expenses Gas X pills. Buy WALMART "Equate" brand for half the price. I have to take about 6 to 8 each night for the pressure of the gas on my remaining gut keeps me awake.

I had the exact symptoms and my GI doc put me on a low fodmap diet. From there, I added foods back one at a time until I found my trigger foods. The low fodmap diet reduces gas and IBS symptoms. Also may want to make sure you’re not having pouchitis symptoms. Just my two cents. Hope you feel better soon!

Thanks for chiming in everyone! Remember, since everyone's body responds differently, it's important to consult your healthcare team when making decisions around diet and/or treatment. Hopefully the cramps resolve soon! Perhaps try keeping a food diary for a few weeks (annoying, I know) and see if there is any association between the cramping and specific foods?

Thank you IslandGirl , we're so glad you're apart of it! It's the members that really make oneFAPvoice a fantastic space! Please let me know if you have any questions about oneFAPvoice or FAP!

Information on FAP and pregnancy coming right up! Something to consider with FAP and pregnancy is the risk for desmoid tumors which some believe to be spurred on during or after a pregnancy. If you have a desmoid or family history of desmoids (and even sans desmoid history), it is worth mentioning this potential risk to your healthcare team during the family planning process. Another consideration is pre-implantation genetic screening (PGD) to el…Read more

Generally, extracolonic manifestations are considered less common in people with AFAP compared to FAP. However, people with AFAP are still at risk for desmoid tumors. The literature unfortunately isn't clear about the specific risk for AFAP desmoid tumors compared to FAP desmoid tumors (some state that there's less likelihood while others suggest, depending on the mutation site, it could be higher than certain classical FAP mutation sites). The…Read more