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

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

Welcome to oneFAPvoice Mnm3351 ! It's great to hear that you have been on top of your screening in response to your family history. Although it does seem unlikely that you have FAP or AFAP given your relatively unremarkable scopes, given your family history, there could still be an argument for getting genetic testing to be on the safe side. If you and the mother of your daughter both don't have an FAP causing mutation, then your daughter will…Read more

Hi my daughter and I both have J-pouch what is b/c stand for don’t know term And you what type meds ? Not to be nosy. But to understand. My daughter and I are on different things. She has IBS so she takes some meds I take meds for other things

If you are considering having surgery to have an ostomy, I would reconsider this. I currently have an ileo-anal jpouch for FAP. That surgery was a 2 stage surgery & I had an ileostomy for 6 months. I had all kinds of skin problems due to the stomach acid destroying the skin around the stoma. I developed what is called "weepy skin" and could not get the bag to stick so I was house bound a lot of time. There are also issues with dehydration…Read more

I have MAP and had to have my colon removed 2 years ago. I cannot take Imodium or anything related to coedin, I take probiotics and certain foods to help control things. If you have any suggestions on foods that m a t help, please let me know.

HI Rubyinn - I am sorry to hear you've been encountering j-pouch challenges. Have your problems regarding medication been mainly related to absorption issues? If so, I don't know if getting an ostomy will change your absorption capabilities since the problem may be stemming from the lack of intestine. Or are you referring to not being able to take medications to reduce bathroom frequency? I actually just met a fellow FAPer who unfortunately wa…Read more

Hi! Again probiotics are great make sure good brand .Watch what you are eating. I still go to my surgeon and I had surgery on 2014. Make sure you are not eating to fiber rich food. If you are in pain or discomfort talk to your surgeon. Make an appointment. My surgeon says if you are in discomfort or pain you could have block or small intestine is unhappy. Are you in pain? What is your diet like? So I can look on my chart to see what our surgeon…Read more

I have very little small intestine and no large one left. You need to get the meds in a form that can be digested.... that means no capsules and A Anything that you cannot dissolve in water (try one of whatever in a small amount of water) should not be used...I worked with my Dr to find the right vitamins -- I found only one that worked to get iron to dissolve and it was amazing to see the scores change inputs a few weeks. (Centrum Specialist E…Read more

if you have leakage from the stoma onto the skin, you have a totally improper fit....first be sure the hole you cut in the bag fits snug over the stoma --- I had quite a few blisters until this was resolved
also - you have to be sure the attachment format is correct. About a year agoI had problems and the stony nurse immediately knew why - a very simple fix-- I had to have the concave shaped bag instead the flat one -- just enough change in my …Read more

People can down talk stories but I am so pleased to have life and the stony is so easy --- much less problematic and easier -- never going back!!

Also there is a new method that my daughter discovered info on - it is an internal pouch and you empty it with a straw like device -- the external opening is a small slit and a bandaid covers it... Looks totally promising and exciting for the younger generations in particular--

Hi Nick W. - Thank you so much for providing support to the community and sharing your story! We will be sure to encourage teen/young adult and parents of younger FAPers to connect with you here! Please continue to stop by and share about what is going on about your life, FAP-related or not since the community definitely benefits from hearing from you! And I spotted no typos (although I'm a millennial so there may be a bias).

Such a great idea! Thank you so much for spearheading down under. There is so much power to meeting others who can relate, especially in person.

Hi Debbie Camilleri - You ask a very important question. By treated, I am guessing you are referring to the surgical removal of the colon? If so, most literature seems to state a 42 year life expectancy if the colon is not removed. Unfortunately, as more FAPers are getting diagnosed earlier and (thankfully) living past the well known colon cancer risk, they are living long enough to experience some of FAP's extracolonic manifestations and we are…Read more

So sorry to hear about your car accident and about your siblings lack of involvement in your FAP experience. Do you have other family or friends that you've been able to talk to about FAP? You're always welcome to spark or join a conversation here! Hopefully we can make the journey feel less like a solo venture!

I was 68 when my FAP was discovered, despite family history....my sister was in her 40's when she knew something wasn't right they found nothing....so later had to have a section removed due to cancer...then has continued quite fine....her daughters and her colon removed at 40 and does regular stomach scans. My dad died at 56 but first surgery was in late 40's and it was active cancer ... I think you can do a lot to get ahead of the polyps b…Read more

Hi. I can only tell you what our team of doctors said total collectomy before anything turned out come great. Flexoctomy and endoscopy with side scope a must ever year. Cat scans every 3 years. Ultra sound endoscopy every 2 years if didn’t turn to cancer then different. Ilya sound endoscopy is different then a regular endoscopy. J pouch check every 6months by colon surgeon. My daughter had surgery know cancer early 30. Son getting surgery aft…Read more

I know a 93 year old man with FAP who's still doing well after treatment and monitoring of FAP.