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Colorectal Cancer: No Longer the Issue in Familial Adenomatous Polyposis?
Familial adenomatous polyposis (FAP) is a dominantly inherited colorectal cancer (CRC) syndrome with an untreated lifetime prevalence of CRC close to 100% and extracolonic manifestations (ECM) of increasing clinical significance. This study examined the effect of systematic callup and prophylactic colectomy on FAP survival. Patients diagnosed, treated and followed-up at our
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Fee Cullen
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So we just left the surgerons office. I am thinking we will be having her surgery in December while she is on Christmas break because my step daughter who is 8 has FAP just started school and the surgeron said it could take 3-4 weeks for her to recover. My question is if you have had a jpouch how long did it take for you to just recover from surgery? He also said a lot of people get that infection afterwards I forget what he called it. But have a…Read more
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Community Mgr.
These are all very good questions and it's clear you're making important considerations. The first surgery (if you're pursuing the two part jpouch surgery- the first to remove the colon and then the reversal/reconnection surgery three months later), did take about a month for me to start feeling like I could function physically but I usually advise people to plan on needing 6-8 weeks just in case. However, I was 22 and it's possible an 8 year…Read more
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Ashleyshows
Amazing! Yes he did say pouchitus. And he didn't say anything about 2 surgeries. The one thing I am very worried about is if the small intestine isn't long enough to go to the rectum which means she will be on a bag. I feel very comfortable with this dr. He seems very good at what he does. Did explain everything very well just doesn't want us to wait long for the surgery because of how many polyps she had. We want to wait because we do go to D…Read more
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Community Mgr.
Ah, you know what, it's possible that he/she prefers to do the surgery in one surgery instead of two, with an ostomy (bag) in between. In that scenario, yes, I was warned about a higher infection rate which is why I ultimately opted to have two surgeries to try and reduce my infection risk. The second surgery gives the jpouch some time to recover before it has to start working. However, I now had this surgery almost six years ago exactly so it'…Read more
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CHRIS
I had my surgery a month after my 40th birthday in 2 steps 6 weeks apart. I didn't rebound quickly. It is a big surgery. However, if she needs to be home, you can set up for the teachers to come to her through the public school system. They will do that free of charge. Takes the pressure off of both of you. They just need time to arrange it so set it up as soon as you get a surgery date. Contact her school's guidance counselor or have the surge…Read more
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trishd
I had my Jpouch done in 1996 in one-step. I did not have an infection or any problems until 2008. If you get an infection it is pretty much like any other infection, you feel drained all the time, loss of weight, but the thing to pay attention to is after eating, there will be pain near the pouch. I waisted a lot of time going to my regular dr. who gave me antibiotics and those will not work. Then I got smart and went to my GI Dr. He got it resol…Read more
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Rubyinn
I've had a J-Pouch since February 2017 and it took me about 8 weeks to feel somewhat normal but I am a lot older so she may spring back faster. Once you have the J-Pouch, you can develop Pouchitis which is an inflamation of the Pouch; doctors are not sure what causes it but I think it's certain foods that irritate it. Watching what you eat makes a BIG difference; start out with soft foods and work you way up. While she is in the hospital and…Read more
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Ashleyshows
Omg thank you so much everyone is being so amazing! Honestly I am feeling a tiny bit better lol. You guys are amazing again thank you so much!!!!!
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Hey there everyone! We just found out my step daughter who is 8 has FAP which we knew my step daughters would have it because their mother had it. She sadly passed away from complications from a surgery. Callie (my 8 yr old) had her first colonoscopy and endoscopy on July 21st. Found 500-1000 polyps in her large intestine and some in her stomach. None were precancerous or cancerous so that's good. But we met with a surgeon tomorrow and they are …Read more
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Community Mgr.
Hi Ashleyshows - welcome to FAPvoice. I am so sorry to hear about your step daughter's recent news but am glad you found this community. I had my colon and most of my rectum removed and a j-pouch (pseudo-colon made from small intestine) formed when I was 22 in 2011. While there's definitely an adjustment period and a bit of a new normal, I've found I can still do so much of what I love to do including eating and traveling sans colon. Please d…Read more
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Ashleyshows
Thank you so much!!!! I really appreciate it! We have an appointment today. Just super nervous. She has to be there and we haven't told her that she all this is going on yet. I know it's probably horrible but she is 8 and I know she won't understand. And I just don't want her to be scared. Just trying to figure things out lol! But again thank you and I'm really excited about this page and being able to read about others and see how others ar…Read more
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Community Mgr.
Of course! I'm here (along the rest of the FAPvoice community) to offer advice or just be a sounding board! It's completely understandable to take your time figuring out the best way to tell your step-daughter. It's a very scary thing for anyone but especially for a child who may not even feel sick and not understand why they need to do something that will make them feel bad for a bit. My guess is the more comfortable you feel talking about it…Read more
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DaniCon
Hi I had my diagnosis at 8 as well and had my large intestine removed at that point, followed by an ileostomy later in life. I am happy to answer questions/support where needed
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Ashleyshows
Oh wow!!!!!! Can I ask what your age is now? What do you remember being the hardest part? Why did you have to have an ileostomy later?
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Sulindac/Erlotinib Combo Tested in Patients with Familial Adenomatous Polyposis
A lower duodenal polyp burden was seen after 6 months of treatment with sulindac and erlotinib vs. placebo among patients with familial adenomatous polyposis (FAP), a study published in JAMA reports.
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Tucson drug startup launches gastric-cancer trial
Tucson-based drug startup Cancer Prevention Pharmaceuticals Inc. has announced the launch of a Phase 2 clinical trial at Vanderbilt University Medical Center to test the company’s flagship drug candidate for preventing gastric cancer.
The drug, CPP-1X, will be studied in patients with precancerous gastric lesions who are at high risk for gastric cancer, the company said Monday.
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Tucson drug startup launches gastric-cancer trial
Tucson-based drug startup Cancer Prevention Pharmaceuticals Inc. has announced the launch of a Phase 2 clinical trial at Vanderbilt University Medical Center to test the company’s flagship drug candidate for preventing gastric cancer.
The drug, CPP-1X, will be studied in patients with precancerous gastric lesions who are at high risk for gastric cancer, the company said Monday.
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Most people who develop bowel cancer have no family history of bowel cancer. However, for around 25% of all bowel cancer cases diagnosed in the UK there is a family history. Generally speaking, the more members of the family affected by bowel cancer, and the younger they were at diagnosis, the greater the chance of a family link.
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Atlanta Gastroenterology Associates
AGA, established in 1976, is the largest gastroenterology practice in the southeast dedicated to the evaluation and treatment of both digestive and liver diseases. AGA has a long, successful track record in performing colonoscopies. Over time, colonoscopies have actually become a routine procedure and most are now performed at AGA's outpatient endoscopy centers. In addition, AGA works with its patients' primary
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Atlanta Gastroenterology Associates
AGA, established in 1976, is the largest gastroenterology practice in the southeast dedicated to the evaluation and treatment of both digestive and liver diseases. AGA has a long, successful track record in performing colonoscopies. Over time, colonoscopies have actually become a routine procedure and most are now performed at AGA's outpatient endoscopy centers. In addition, AGA works with its patients' primary
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5 Things to Know When You’re Dating a Person With an Ostomy
Maybe we told you about this months ago and you’ve been mulling the thought of going further over; maybe we told you over cocktails on our first date. Maybe we met on a disability dating website; maybe we hunted you down on something less savory.
But here’s the situation — your significant other might not have one of their urinary or digestive organs.
Here’s some know-how
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rareLife demo
really appreciated this article. have you guys seen it?
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Have you folks ever experienced stricture and how do you know if you have one? I sometimes get to the point where I feel partially blocked, and then just wait for a few days to let it pass without eating bad food. But recently, I'm having trouble using the bathroom and I suspect stricture. Sorry I've been posting so much recently!!
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Community Mgr.
Hey polypsaplenty - First of all, no need to apologize for posting frequently! It's quite possible your asking questions others might have and your comments below have definitely been helpful!
At this time, I have not experienced a stricture. This 2011 article references a study that found 11.2% of people who have undergone IPAA experience a stricture https://www.fapvoice.com/rcuratenew/ileal-pouch-anal-anastomosis-an-overview-of-surgery/. The …Read more
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polypsaplenty
It finally went away! I've been eating a lot of peanuts for breakfast and then also snack after work. I just stopped eating them (and stopped metamucil) and it was better within four or five days. No more peanuts!
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Community Mgr.
So after all there was a simple fix! I'm so glad it resolved! Yeah, nuts, seeds, and high residue foods can be the culprit for obstructions. For the most part, these foods don't factor into my diet anyway (I'm secretly five years old with some of my food aversions) but, in moderation, I've been able to handle them (the first time post reversal surgery I had popcorn, I was quite literally afraid I might explode). If you're really missing pea…Read more
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LifesaPolyp
Through scopes my doctor realized that the way I was connected resulted in a "jag" in my intestine but then through exploratory surgery it was found that I had a stricture caused by adhesions as well. In 2015 I had a barium xray and upper scope completed to rule out anything obstructive in my stomach leaving my doctor to the conclusion that my adhesions are causing a stricture again, although not bad enough to warrant surgery at this point. I h…Read more
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I'm feeling uninspired and would love to hear what others would be interested in reading about/learning about through Life's a Polyp blog. I'm excited to be getting to review CBD Oil for pain but that won't be ready until September. So if you have any ideas, I'd love to hear them!
Thanks in advance.
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Community Mgr.
FAP block? I've been there. In fact, I may currently be there but, if I think of anything, I'll definitely let you know! Your experiential posts are always insightful!
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LifesaPolyp
Thanks so much! I started working on one about a recent break up I experienced. We'll see what else comes up for inspiration. 🙂
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Community Mgr.
I'd definitely be interested in reading your breakup post (although I'm sorry to hear about it). Dating and chronic illness is such a multi-faceted topic.
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TracyWhitt
I'm excited to read your post on CBD oil. I've used it. 😊
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LifesaPolyp
What were your thoughts on cbd oil?
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Could use some advice. What are some of the things you do when FAP has you feeling down or stressed? What about coping with the initial diagnosis? Are there things you do in the in-between, day to day moments when you may not be actively thinking about FAP to help prevent or minimize the impact of these FAP-induced feelings?
Any tips about approaching the emotional impact of this disease are appreciated and could benefit fellow FAPers who could…Read more
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polypsaplenty
Hello! Here's a few things I did. First, I try not to concentrate on what I can't control. I couldn't control getting the disease, needing the surgeries, or getting blockages (to a degree). I did have my "break down" moments, but I generally tried to concentrate on things I could do to help myself. I worked out before my first surgery and got into good shape before it. Who knows if it helped, but it didn't hurt -- and it kept my mind …Read more
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Community Mgr.
Thanks for sharing polypsaplenty ! I like the medical binder idea (I'm pretty terrible at organizing my medical stuff) and of course that you came out of your diagnosis seeing the positive. Did you make the shirt yourself? I saw a post of a YA with cancer wearing a "more issues than Vogue" shirt at one of her treatment appointments and appreciated the clever sense of humor.
Do you ever struggle here and there with the whole FAP thing now that…Read more
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polypsaplenty
Nah - I never made it myself. My lucky doctor's appointment shirt is my "that's a clown question bro" t-shirt (baseball reference). I got an ostomy belt and put some Patriots/Celtics patches on it when I had the ostomy too.
For struggles, I sometimes have continence issues if I don't eat properly, don't hydrate well, or drink too much alcohol. I up my metamucil/immodium when that happens to "snap my system back." Generally, I can get …Read more-
Community Mgr.
Thanks so much for this extra info!
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LifesaPolyp
I try not to think about it. Like polypsaplenty , it doesn't help to focus on things out of our control. Instead, we can make a game plan for what is in our control - like taking medications to reduce polyp growth and getting our regular screenings. If we focus too much on what's outside of our control, it is easy to become overwhelmed and spiral. Counseling was a great help for me to learn how to cope with my health and the PTSD that developed…Read more
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Community Mgr.
I like your last two sentences. It's so easy with this disease, even when you're not in a bad place, to get caught up in what you need to do to manage it and you lose sight of (and sometimes doubt) the fact that people are thinking about you and what you have to do. It's definitely comforting to take a step back and realize that someone cares even if they may not fully understand. Initially I was a little put off by people coming back into my …Read more
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LifesaPolyp
I think it's such a delicate balance to try to maintain. we don't want to only suppress but we also don't want to only run with the feelings. either place we can get stuck and i don't think either are healthy places to reside. it's always easier to "master" it when we're not being presented with issues or fears but when things are stable. when they're unstable we're faced with the task of trying to balance once again and it's a hard ta…Read more
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Heads up: There's a new phase 2 trial in the works for people with precancerous gastric lesions who are at high risk for gastric cancer by Cancer Prevention Pharmaceuticals (which is working one of the only FAP-focused clinical trials). Have you participated in a clinical trial before?
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Hey everyone! I do apologize for not being on for a while. I guess you can say life and our wonderful diseases hit me and overload at times. Was working to get discharges for student loans, my work long term disability approved to continue and of course doctor appointments always set up.
I recently, a few weeks ago, had a couple day stay in the hospital. I had a bowel obstruction. This one I guess was a little worse than others. But thankfully I …Read more+ care 5+ hugs2+ thanks0+ prayers0+ care 5+ hugs2+ thanks0+ prayers0-
Community Mgr.
Hey Joyce! You never need to apologize for not popping in (although of course we love when you do!). It definitely sounds like you've been busy and I'm sending positive vibes with the hopes that things calm down...or at least become chaotic due to more enjoyable things. I'm very glad to hear you avoided the NG tube (I feel like that's always a qualifier when talking about bowel obstructions) and surgery. Thanks for your optimism and encourage…Read more
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Pennie Bickerstaff
My small bowel kinked on me a few months ago. Not fun at all.
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Am new and I'm not sure how to deal with this diagnosis. How r u guys dealing with this? Can purple love looking life's? How do you guys deal with the potential for surgery? Is there a cure in the works?
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Community Mgr.
Welcome to FAPvoice! I'm sorry to hear about your diagnosis but am glad you found this community. It's definitely a jarring diagnosis and takes some time to wrap your head around. I had very little time between my diagnosis and my proctocolectomy surgery (1.5 months) and spent most of it being angry and sad. However, I always recommend that people in the pre-colectomy period treat their colon to as much good food and adventures as possible (not…Read more
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Aakbary
Hi, ous there any way I can contact in a more private setting? This is all new and, well, I hope you understand.
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polypsaplenty
Hello there! Hope you are doing okay! I had my surgeries about 4 years ago and am doing pretty well. In terms of dealing with it, it's important to keep in mind that it's perfectly possible to live a nearly completely normal life, but it will just take planning and time to adjust. I dive, play golf, and worked in an intense legal environment, and literally only a handful of people knew I had it. For surgeries, everyone is different, but my…Read more
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Community Mgr.
Hi Aakbary . First, I wanted to say that I definitely agree with polypsaplenty 's comments about being able to still do things you love with some planning post-proctocolectomy.
I just sent you a private message through FAPvoice. Let me know if you have any trouble accessing it. I totally get the desire for privacy and if you ever want to private message any other users, click the three lines next to their username in their rareCourage post which…Read more -
CHRIS
I am 3 years post total proctocolectomy with J Pouch. I was dx'd at age 39. Took me about a year to adjust to my new system. Genetic engineering cure is not close to fruition, per my Geneticist, but annual screening can keep you living your best life. With proper screening, we can have a normal life expectancy. I had a lot of anxiety with my diagnosis, BUT I find my annual upper and lower scopes keep me less anxious about it. It's an adjustment…Read more
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Aakbary
Hi Everyone,
Since you guys are saying that no question is embarrassing, here goes nothing. Thank you all for the replies!
I have a million questions, but here are a few that I'm really interested in knowing.
1. Why does it matter one or one hundred, why can't they just remove the polyps via scope?
2. How is your Sex, Social and Work life with FAP and surgery?
3. What codon was your mutation at? 1464 here.
4. Do any of you guys wants k…Read more-
polypsaplenty
I'm sure there's a lot of people on here that know more than me - but here's a try!
Regarding #1, I don't think it's possible for them to remove all the polyps w/ a scope. I had a 1000, which is not a lot in comparison to other FAP patients. But, I don't think they can remove that many, and then they'll just grow back. They wanted to remove the colon/rectum before having to deal w/ cancer, which was a certainty.
Regarding #2, my sex l…Read more -
polypsaplenty
(2 of 2) Regarding #3, it's embarrassing, I can't remember off the top. I tried to just live my life and get past it. I feel like having it has made me stronger and given me perspective, so I don't really dwell on it. I have classic deletion FAP though.
Regarding #4, it's recommended not to have kids or get genetic counseling before hand to explore fertility options, etc.. But my wife and I are not planning on it. It just seems like a …Read more
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Community Mgr.
I know we've been corresponding via messaging but, your question 6 has impeccable timing as this was an article I planned on sharing via rareCourage. Check out the "research" column in the news and meetings section for a recent article indicating that PTSD is common among FAPers: https://www.fapvoice.com/news-meetings/
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Aakbary
Hi FAPulousTV,
I sorta asked this question because of the article, I just wanted to know from real people with FAP versus some guy doing the research about it. I dunno if anything I'm saying/feeling/hearing is real right now! I AM LOST and feel HOPELESS! 🙁
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Community Mgr.
Way to be proactive and already read the article! This was an article I actually desparately searched for when I was first diagnosed as I remember struggling with the total dearth of mental health research on FAP. It made me feel isolated as there was nothing to substantiate my feelings not as someone who was suddenly chronically ill but specifically dealing with FAP. I agree about the value of hearing it from fellow patients though! Please know …Read more
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LifesaPolyp
I highly recommend counseling and continuing to utilize the support of online communities such as here within FAPVoice. I waited way too long to enter counseling to deal with FAP and what I was experiencing because of it and I wish I had sought help earlier. Kudos though for reaching out. We're all in this together, you have a great source of support here! 🙂
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Patients and physicians aren't so different (or at least in their opinion of the impact of years of polypectomies and scopes on bowel function) according to our High Risk Adenoma surveys. What are your thoughts? https://www.fapvoice.com/rarepoll-single/?poll=24&utm_content=buffer6db3c&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer
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Community Mgr.
SELAY
Burada, Yüksek Riskli Adenom Hasta ve Hekim anketlerinden başka bir sonuç paylaşıyoruz. Katılımcıların hemen hemen aynı yüzdesi (% 42) ve doktor (% 44), polipektomilerin yıllarca bağırsak fonksiyonunu etkilediğini düşünüyor. Tartmak için anket bölümüne göz atın. -
JoyceWarrior
I was so happy to see that doctors agreed with patients in this area
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Hi - we would love your participation in a poll to understand the various diagnoses that members of the FAPvoice community may have received. This very quick poll is open to all members of the community: patients, caregivers, medical professionals, etc.: https://www.fapvoice.com/rarepoll-single/?poll=15
If you've already taken it, there are many other FAP-related polls in our poll center: https://www.fapvoice.com/rarepoll-listing/
As with all …Read more
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