Thanks for the kind words efisher ! We're glad you find the platform helpful and know that we're absolutely in your corner.

john roberts check out this video. very informative...

Hi Nicolekim - 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-pat…Read more

No matter what I do, it tells me this survey is closed....

Way to be speedy FAP advocates! The Burden of FAP surveys for both FAPers and people who care for someone with FAP are now closed. Thank you for sharing your voice and if you didn't get to participate, don't worry, we will keep you up to date about future survey opportunities (and don't forget about all of the rarePolls)!

Hi Nicolekim - I am so sorry to hear about your daughter needing her colon removed right now and your son's desmoid tumor challenges. It is completely understandable that you're feeling overwhelmed by this especially given your son's experience. Is your daughter's polyposis too advanced to continue monitor with frequent colonoscopies? With your son having a desmoid history, this risk is definitely something to bring to the attention of your d…Read more

I wish your daughter well.xx

If you make headway on this diagnosis, please let me know! I must confess, I never quite know how to talk about it or where it stands as a different disease altogether or a subtype. My understanding is that it's FAP's colon cancer risk but the main differentiator is the type of CNS risk (medulloblastoma) vs potentially glioblastoma in FAP. Here is an article that argues both Gardner's and Turcot Syndrome are outdated terms given the growing re…Read more

Agreed. I wonder how medical students learn about it, as a separate disease or a sub-type of FAP (or not at all). Let me know if you find anything elucidating about it.

Right back at you! Thanks for all the knowledge you spread about FAP this past month (and every day)!

Hi Erin- Thanks for throwing yourself into the oneFAPvoice mix! Your involvement and insight is greatly welcomed at any and all times! Although it can feel odd saying I'm glad Lily has AFAP instead of regular FAP, you're right, AFAP comes with it's own unique issues. AFAP unfortunately can still be associated with manifestations of FAP beyond the colon. I am so impressed that you and your daughter's team talked about her specific mutation sit…Read more

Hi kerryleelloyd - Welcome to oneFAPvoice. First things first, you are asking very important questions and are taking a good first step just by taking the initiative to ask them. It's also completely understandable for both of you to feel overwhelmed, stressed, scared, and in denial. An FAP diagnosis, especially when there is no family history, can feel out of left field. FAP actually occurs in 1/3 of people completely spontaneously/de novo (wit…Read more

That's great to hear! I'm so glad to hear you found the above helpful and were able to get in and have such an awesome resource nearby. If you're looking for additional resources in the area, People and Places has a few (use the advanced filters to narrow down your search to Chicago or Illinois): https://www.fapvoice.com/people-places/

Don't hesitate to reach out as questions arise or if you just want to talk/not talk about it. Thank YOU for…Read more

I strongly suggest working with the cancer risk and prevention team. I have AFAP, live in Minneapolis, and have had great support through the university cancer center and their cancer prevention team. They were able to lay out a health plan as well as coordinate and oversee my health care. It can seem overwhelming, but take it a step at a time, support is out there . . . and here!

One of the worst experiences of my life, second only to my diagnoses, was searching frantically for where I parked my car in the city with a "cancer friend" only to realize that it had been towed. My head hung low as we head back to my friend's place when she turned to me and assured me "...At least you didn't actually forget where your car was because of chemo brain" which was indeed a fear I secretly had while seeking out the car. We laug…Read more

Hi Teresa Stewart I am sorry to hear about these complications. May I ask, is your pain centralized to the abdomen? How long have you been experiencing it? What types of doctors have you consulted with? How long has it been since you had your colon removed? Have they done any imaging to rule anything out? Maybe there are some issues with scar tissue? In the initial period after my reversal surgery, I remember experiencing intense cramping that wa…Read more

I take Bentyl with every meal and I've started taking Beano before meals to help make digestion easier which as decreased my bloating and pain.

It sounds as if you have adhesions, but desmoid disease is also possible. If things get worse you need a CT scan. Otherwise try to avoid roughage (Metamucil is a gentle substitute for natural rouaghage). Heat can help the cramps. Bentyl and beano are OK too but anstispasmodics like bentyl can have side effects.

Hello. It might not work depending on what is causing your issues but for me changing my nutrition plan was a complete miracle - I went to a functional nutritionist because I couldn't find a good homeopath or DO in my area. I switched to a natural food plan and now pretty much completely pain and stomach issue free, polyp count and size has reduced. I cut sugar/sweeteners, grains, gluten, dairy and nightshades for a few months and then only lim…Read more

Hi Theresa. I used to have very similar problems but after a lot of experimenting I discovered that most of the time it was food related. Certain foods made more cramp up and the pain was unbearable. More recently I have found that even foods I could eat before are now not good for me. For instance walnuts have never been a problem but now, no matter if they are ground up I cannot eat anything with them in. The cramps I get even after the smalles…Read more

Hi Pennie Bickerstaff - This is a good question. I cannot speak for the rest of oneFAPvoice but, I have been on Sulindac since 2013 (two years after my proctocolectomy). Actually, I am currently taking an experimental 6 month Sulindac break to see if it has been contributing to a complication I've been having. If this is indeed not the case, thus far, I haven't experienced any problems taking it daily in hopes that it could possibly help minimi…Read more

I am very badly allergic to Sulindac, Celebrex and aspirin. Sounds like most nsaids are bad for me. My brother is on Sulindac and it is helping to slowly shrink his 4 desmoids but not sure about the polyps.

I am taking Sulindac. I started with it back in 1995 after my surgery. Then a few years later we (my Mom and I) both were switched to Vioxx for a few years and then Celebrex until it came out that studies showed using Vioxx and Celebrex daily for long-term use could increase your risk of a heart attack or stroke. Then we were put back on Sulindac and I have been taking it on and off since then. (Although some days I skip. Some days due to pain i…Read more

Hi Erin- Welcome to oneFAPvoice, I'm glad you found us. You're definitely in the right place to fortify yourself with knowledge and support in preparation for your daughter's genetic testing. It's definitely a nerve-wracking time but please know you are doing everything you can for your daughter's health by moving forward with genetic testing. Here's a resource on genetic counseling which hopefully will be a good additional resource once y…Read more

Hey there! My name is Ashley, my step daughter who turned 9 in November has FAP. Who her mother passed away from in 2012. Callie (my step daughter) just had her large intestine removed and we are currently waiting for her reconnect surgery. Callie wasn’t showing any signs but I knew we need to get her and her sister tested. I have not dealt with cyst or teeth problems yet (knock on wood). But surgery is the only thing I understand right now and…Read more

I had my son tested back in November of 2017. He is 7 and positive. Granted if I would have known about the family curse as I call it. I would not have had children to pass it on. Any child with family history should be tested. The sooner the better. I, Mom, have FAP and didn’t find out till I was 22. We finally get to see a gi dr in February bc he has been so sick. He stays nauseous and throws up a lot. Best of luck. It’s not a easy road but…Read more

The key to successful management of FAP is to find caregivers who know about it and have experience with it. The aim is to prevent a bad outcome from the disease while at the same time making sure patients remain as normal as possible. Treatments should not be done according to a "cookbook" but individualized according to the way the disease affects each individual patient. Please do your research. I can help if you like

My younger brother has two children. A boy who is going to be 7 in March and a daughter who just turned 4 in December. Nephew is positive and has had both scopes twice already and does have polyps, He has also had 6-8 cysts removed from his head. My niece is negative.

It's great that she's home and got to wake up for the holiday in her own bed!
1. I cannot speak to this from experience but, I would definitely recommend discussing it with Callie's Wound Ostomy Care Nurse (did the hospital set you up with one?). It could possibly be an ulcer or something with a stitch but, the WOC nurse will likely have a better idea. If at any point it looks like it's becoming infected, be sure to alert her healthcare team.…Read more

2 is very relatable to me, I’m 16 and after surgery I felt super depressed and alone, I have been close to my parents but never really close, so I felt alone, overtime I started to trust certain aspects of life if my parents said it was ok. Although there was no dramatic increases in my mood, in between my 2 surgeries I actually ended up going to a few English classes even though I didn’t need to. I remember being super scared and getting ask…Read more

Ever since my colon surgery in 98 I had a rehook up, no j pouch. I struggle to get my liquids in daily. I don't mind drinking but I forget because I never seem to feel thirsty unless I'm fasting for a test then I want to drink all the time. I keep a water bottle by my spot in the livingroom as it is a reminder for me to take a drink.