-
I was diagnosed with Fap at age 37 in 2003. No family history of the disease, apparently mine was sporadic. In 2005 blood tests results stated that they could not find my mutation and that blood tests for my kids would be useless. I am just wondering if things have changed since then and if there might be a way now to find my mutation now so we can test my boys by blood work. I asked about repeating test but was told at the time my results would …Read more
+ care 4+ hugs1+ thanks0+ prayers0 -
familial adenomatous polyposis and papillary thyroid cancer
I recently saw a 35-year-old man with a family history of familial adenomatous polyposis. A 39-year-old brother recently died from metastatic colon cancer. His mother and sister were also afflicted and have had colectomies. The patient himself has not had any colon polyps identified on colonoscopy. He has a multinodular goiter with several subcentimeter nodules. The largest nodule was ben
+ care 0+ hugs0+ thanks0+ prayers0 -
I was diagnosed with FAP last month and facing 2-part surgery to remove the colon and rectum along with a mucosectomy. Can ayone share their experience with this exact surgery...recovery, post-surgery issues like incontinence? Thank you!
+ care 5+ hugs2+ thanks0+ prayers0+ care 5+ hugs2+ thanks0+ prayers0-
polypsaplenty
I had the two-parter about 4 years ago. Basically, the first surgery is more physical in the recovery and it's a longer surgery. I think I was out of work for about 4-6 weeks. After the surgery, you'll have to get used to the ostomy bag, but just keep in mind it's temporary. It's a good opportunity to prepare for life w/ the J-pouch (if that's what you're getting) by monitoring your output, etc. Talk to the ostomy nurses -- they are li…Read more
-
-
I have temporary ileostomy as of 7/20 and it is retracted (alot) and have not found what product and process works well they always leak. I changed bags becauase of leakage 9 times with 1 and 1/2 days. I average changing it twice daily. The longest one stayed success fully was 2 1/2 days. I would greatly appreciate to hear from people that had similiar problem and what worked for them. Some parts of my skin is doesn't even look like skin. It…Read more
+ care 3+ hugs2+ thanks0+ prayers0+ care 3+ hugs2+ thanks0+ prayers0-
pouchsurgeon
Here comes and answer from a surgeon: it is a terrible Situation and Needs amending. I think that you have two options to make it work:
1. have the ileostomy amended, is a small surgery to fix it, you only do this from the Stoma site
If the pouch surgery went very well (ask your surgeon) early closure of the ileostomy after checking for healing of the pouch by xray exam is a viable Option. We are increasingly fashioning pouches laparoscopically…Read more-
Aussie45
I just talked to a leading stony nurse and she says the British are miles ahead of us in supplies and options. I had a lot of trouble all of a sudden with leakage.The solution was simply that I had changed enough that a concave connector was necessary.For the most part I was able to go 4-5 days with one bag --- awesome. I use the SENSURAMio 16716 and I cut my own so that I can match the size I need each time. I prefer the Smith and Nephew no-st…Read more
-
-
Community Mgr.
Thanks pouchsurgeon for your thoughtful response.
cjpjrr3 As brought up by pouchsurgeon, it's worth discussing potential avenues with your healthcare team. Do you have an ostomy/wound nurse? For a few weeks in the middle of my proctocolectomy recovery, I too had trouble getting the bag to stay on for any prolonged period of time as the stoma seemed to retract as well due to my changing weight. I remember my homecare nurse was indispensable dur…Read more
-
-
Young-Onset Colorectal Cancer: Earlier Diagnoses or Increasing Disease Burden?
Colorectal cancer (CRC) incidence and mortality in the United States have changed strikingly in recent decades. Overall, CRC incidence decreased by >30% from 1975 (59.5 per 100,000) to 2013 (37.9 per 100,000).1 CRC mortality similarly declined from 28.1 per 100,000 in 1975 to 14.5 per 100,000 in 2013—nearly a 50% decrease. Screen-eligible populations, particularly
+ care 0+ hugs0+ thanks0+ prayers0 -
Young-Onset Colorectal Cancer: Earlier Diagnoses or Increasing Disease Burden?
Colorectal cancer (CRC) incidence and mortality in the United States have changed strikingly in recent decades. Overall, CRC incidence decreased by >30% from 1975 (59.5 per 100,000) to 2013 (37.9 per 100,000).1 CRC mortality similarly declined from 28.1 per 100,000 in 1975 to 14.5 per 100,000 in 2013—nearly a 50% decrease. Screen-eligible populations, particularly
+ care 0+ hugs0+ thanks0+ prayers0 -
European Hereditary Tumour Group 3rd Meeting 2018
Dates: 23-25 September 2018 (Sunday to Tuesday)
Venue: Radisson Blu Hotel, Nice, France
On behalf of the European Hereditary Tumour Group (EHTG), we are delighted to invite you to the 2018 EHTG meeting being held in charming Nice along the Côte d’Azur. The meeting is mostly interdisciplinary and offers the unique setting of attracting scientists and clinicians from many different disciplin
+ care 0+ hugs0+ thanks0+ prayers0 -
Understanding Health Insurance
Health insurance is a way to pay for healthcare. If the policyholder (the patient, patient’s parents, or a caregiver) pays the premiums, then the insurance company will cover many of the costs associated with your health needs.
As a member of the rare disease community—and even if you are not—it is important to understand health insurance even though it can be a complicated and challenging subject.
+ care 0+ hugs0+ thanks0+ prayers0 -
Study identifies enhanced impact of treatment for hereditary cancer patients
People with an inherited syndrome called familial adenomatous polyposis (FAP) have a 100% lifetime risk of developing colorectal cancer if they do not seek appropriate medical care. Recent findings published by researchers at Huntsman Cancer Institute at the University of Utah identified a promising prevention treatment for patients with FAP. A new study takes these findi
+ care 0+ hugs0+ thanks0+ prayers0 -
Hi there! I’m Amy and I am a web designer who lives in England with my husband and two cats. I'm currently battling advanced bowel cancer.
I feel like I’ve coped quite well so far. My side effects have been manageable. I’ve been a bit bummed about my hair thinning but I am thankful that I consistently feel pretty good (ask me again in two months, though). I haven’t really needed my nausea pills!
+ care 0+ hugs0+ thanks0+ prayers0 -
I am having 1st of two stage surgery and will have a temporary ostomy. I would like to get some input as to what ostomy bag system people prefer, one or two piece. And what brand. I am 5'3 160 lb 48 year old woman. I had most of my colon removed in1987 due to familial polyposis. Due to size, speed of growth and that the polyps are transitioning I am having to remove remainder of colon and the lining of the rectum. I would greatly appreciate…Read more
+ care 4+ hugs1+ thanks0+ prayers0+ care 4+ hugs1+ thanks0+ prayers0-
Community Mgr.
HI cjpjrr3 - That's a good question. It seems like finding the right ostomy model and brand is such a personal thing. I had a temporary ostomy between my proctocolectomy and reversal surgery but didn't have time to try too many different ostomies. I was definitely eager to switch from the hospital's clear ones though. Some people love the two piece (I've heard they are preferred by athletes) but I stuck with the one pieces by Convatec. You c…Read more
-
Community Mgr.
Also, here are some ostomy tips and tricks. The last tip talks about free samples and lists different ostomy brand links. https://www.fapvoice.com/rcuratenew/ostomy-tips-tricks/
-
-
Aussie45
Before the surgery please be sure the surgeon checks the pancreas....and stomach. I have had all removed....as for the pouch I was allergic or reactive to many if the glues....and ended up with a wonderful coloplast, Sensua Mia ...concave so the fluids do not leak
The best of luck to you,
-
-
Last year at this time, it was FAP Awareness Week in the state of Michigan and although it may not be official, we can still spend this week (and many others) spreading knowledge about this rare genetic disease that impacts us! Stay rare aware folks and happy faux FAP awareness week!
+ care 0+ hugs0+ thanks0+ prayers0 -
Hello everyone
I have thought I had thyroid problems for quite a while, my thyroid appeared to show early nodules a year ago during my annual scan. More recently my hair started to come out, my eyes have been giving me trouble especially at night. They are really dry and gritty and now I think I’m going cross eyed in one eye (no laughing please!). Now my tongue is really swollen and sore, it literally feels like it is too big for my mouth. Than…Read more+ care 4+ hugs0+ thanks2+ prayers0+ care 4+ hugs0+ thanks2+ prayers0-
Community Mgr.
Hi DaniCon - Sorry to hear about your pesky thyroid but I'm glad to hear you'll be seeing an endocrinologist who hopefully can help you get to the bottom of these complications. It sounds like your intuition is right as some of these manifestations can be associated with hypothyroidism (a potential extracolonic complication of FAP: https://www.fapvoice.com/rcuratenew/thyroid-cancer-and-benign-thyroid-disease-in-patients-with-familial-adenomatou…Read more
-
Aussie45
Be sure to get your eyes tested annually and report any differences asap
Thyroid is an annual check also and must be taken seriously with FAP
Chance you have a growth or other issue developing-
Community Mgr.
Thanks Aussie45 for this input. You're right that the thyroid as well as eyes (especially if someone has CHRPEs) need to be monitored in those with FAP. Unfortunately, a lot of FAPers still need to advocate for and know the recommended extracolonic screening guidelines such as annual thyroid ultrasounds but hopefully oneFAPvoice and its informed members (plus the knowledge that time and additional research brings) are starting to encourage healt…Read more
-
DaniCon
Thanks everyone
-
-
-
+ care 0+ hugs0+ thanks0+ prayers0
-
I was recently told that both my 18yr old son & 17 yr old daughter have polyps in their colon & would face having then removed. Their doctor has informed their great grandmother (she went to the visit bc I was hospitalized at the time) 5hat they would be able to get this "new" procedure which would replace their colons with artificial ones. Has anyone ever heard of this? We dont have another appt with this doctor bc we were referred out…Read more
+ care 3+ hugs1+ thanks0+ prayers0+ care 3+ hugs1+ thanks0+ prayers0-
Community Mgr.
Hi Renee - Sorry to hear about your recent hospitalization and that you're starting to have to think about surgery for your children. Although this isn't exactly a new surgery, it's possible this doctor was talking about a restorative proctocolectomy which removes the colon and most of the rectum and creates an internal reservoir/pouch from a portion of the small intestine. It may be worth asking this doctor if he was referring to a restorativ…Read more
-
Renee
I wish it was the Jpouch that the doctor was speaking of, but unfortunately, he was speaking of relaxing the colon with an artifical colon. I had never heard of this until their great grandmother told me while in the hospital. Unfortunately, I've been fighting to get their genetic testing done, bc the doctor we was seeing didn't findit medically necessary & the next doctor wasn't capable of doing it or recommending a place to have it done.…Read more
-
-
Aussie45
Anything is possible! Please post all you find as this is a big deal for so many. I have a friend who had his aorta replaced with one from a pig and it is working beautifully so far (5yrs).
Replacing the small intestine would be a totally different matter. Eventually FAP eats away at the stomach and upper portions of the small intestine ... mine went into the pancreas and that was sectioned out and works fine....I was very very fortunate to ha…Read more-
Renee
Mine has went into my pancreas, also. I suffer from Chronic pancreatitis. It has kept me in & out of the hospital for the last couple of months. My bowel duct shut down on me about a month ago & I ended up having to have a PICC line with a feeding tube ran. That was a bit scary. I ended up being in the hospital for 24 days. The doctors are keeping a close eye on my intestines & bowel. My doctor specializes in patients with FAP. I'm t…Read more
-
Aussie45
Mine was discovered when I was much older.. I had only one surgery and the surgeon started with a Whipple to remove the affected portion of the pancreas and after the gall bladder was removed and almost all of the stomach, he sewed the pancreas, stomach and what remained of the small intestine (first three feet were gone) so he sewed the units together then proceeded down and removed some of the lower small intestine and all of the large intesti…Read more
-
-
CDuncavage
I have not heard of being able to replace colons, yet they are able to remove the colon and pull down the small bowels to create a "J-Pouch". That is what I have. About the 50/50 chance regarding F.A.P., there are families where it is 100% and my family is one of those. If the parent has F.A.P. all of the children will have it. If the parent does not have F.A.P., then none of the children will have it. 90% of my family had the genetic diso…Read more
-
Community Mgr.
Wow CDuncavage , thank you so much for sharing a part of your family's story. While I completely understand not wanting to get tested and putting it off, I can only imagine what a difficult place that must put you as someone who has been proactive and encouraged their son to do the same. I am glad to hear that you are speaking up and continuing to remind your family about their medical history. Although it can be uncomfortable, it could be a rea…Read more
-
-
Nick W.
I’m a 17 year old, I had my entire large intestine removed just over a year ago and want to wish your kids the best of luck. I don’t know a whole lot on FAP and different procedures that are possible but if any of your kids want to talk to someone their age about what it’s like to have no colon, if that’s the route they take, then let me know and I’ll be more than happy to share my expierence. 🙂
-
Community Mgr.
Thanks for chiming in Nick W. I hope summer has been treating you well!
-
CDuncavage
Wow Thank you Nick. I would LOVE for me son to connect with you as I am sure that there are many topics of conversation that is way more comfortable to have between young men and without the parents around. Here is my email ***. Also here is my cell number ***. Please send me an email and a text. I would like to forward your contact information to him and see what happens.
-
Community Mgr.
Hi CDuncavage - We love to hear about connections forming here, especially amongst younger FAPers since there's such limited support out there for this age group. To protect the safety of our members, members are not allowed to share personal emails and phone numbers within rareCourage. Fear not though, feel free to share this information privately via private messaging and/or your rareTeam. Don't hesitate to reach out if you have any questions…Read more
-
-
-
I don’t always have time to check in, or share, but am always glad this is such a caring resource to refer to...thanks for continuing to be in my corner.
+ care 5+ hugs0+ thanks3+ prayers0+ care 5+ hugs0+ thanks3+ prayers0-
Community Mgr.
Thanks for the kind words efisher ! We're glad you find the platform helpful and know that we're absolutely in your corner.
-
-
+ care 0+ hugs0+ thanks0+ prayers0+ care 0+ hugs0+ thanks0+ prayers0
-
fapvoicedemo
john roberts check out this video. very informative...
-
-
+ care 0+ hugs0+ thanks0+ prayers0
-
Anyone catch FAP's mention in this insightful gem of a book?
Has being young and/or a woman AND sick impacted you? This FAPer's medical experience may be one of the most harrowing ones I've heard however, I appreciate that her story and FAP are advancing the young adult cancer narrative.
Already appearing on must-read lists for Bitch, PopSugar, BookRiot, and Autostraddle, this is an exploration of women navigating serious health issues at an age where they're expected to be healthy, dating, having careers and children. Michele Lent Hirsch knew she couldn't be the only woman who's faced serious health
+ care 0+ hugs0+ thanks0+ prayers0 -
Ok so has anyone here with FAP been diagnosed with POTS
+ care 1+ hugs0+ thanks0+ prayers0+ care 1+ hugs0+ thanks0+ prayers0-
Community Mgr.
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
-
Sarah Stoyer
I do happen to have POTS. No fun 👎
-
- load more
If you are a doctor or other qualified health care professional, you should not offer any medical advice or treatment on our Sites, nor should you allow the content of our Sites to substitute for your own medical judgment. Please thoroughly review the information provided on our Sites before deciding whether any of the products, services, or treatments therein are right for you or others.
Yes, I think it is worth re-exploring genetic testing for your kids. For starters, the MYH "brand" of FAP had barely even been detected by 2005 - only the more prevalent "APC coli" mutation. Second, there have been great strides in the cellular-level/genetic testing in the ensuing years. At a minimum I would at least seek input about your question from a genetic counselor.
Welcome to oneFAPvoice Wednesday ! I would echo Frank Rider 's sentiment about there being value in discussing additional genetic testing options with a genetic counselor and/or a hereditary GI cancer specialist. You are not alone in having FAP with an unknown mutation and research is continuously being done proposing potential new causative mutations (for example, here's an article a few years ago proposing further investigation into a potenti…Read more
Thank you so much for this info! Yes I was tested for the APC and MYH mutations and thought at the time that surely there would be advancement in this area. I receive care at a medical University these days and will request an appointment with the genetic counseling as the one I met with previously is now retired. Thank you for the article, I will certainly read it and am sure to have more questions. My children were seen by a pediatric GI when I…Read more
I am 31 and also have FAP, it is throughout our family. In 2011 I was able to find out that I had a mutation in my APC gene which caused the FAP so I’m sure you can find out more information. Silly to think anyone says it’s a waste of time testing the kids!
One of my boys has been scoped with no findings so far but both will have to be scoped every year or two until we know for sure ...which probably means for life I'd guess.....blood tests won't do us any good unless they can find my mutation to compare. Hope you are doing well.....